Aa
New lab results, medication change
Back again... I saw a new Endo yesterday. The thyroid panel here was done before taking my 60mg daily dose of Armour yesterday, over 24hrs after my last dose. Daily supplemental Iron & Vitamin D was not taken for 5 days before the draw. This was my first B-12 test, to my knowledge. Does this explain why I feel like death, can barely get out of bed or keep my eyes open & can't take a deep breath for anything? Or are all of the doctors I've seen right when they say that my long list of symptoms isn't related to my thyroid since all levels are "within the normal range"? I can't function normally, so I don't know how that can be "normal". She wants me to take my iron twice a day instead of once, continue my current vitamin D & is switching me back to synthetic from NDT. The switch will be to Synthroid 100mcg & Cytomel 5mcg (no generics) from my current Armour 60mg. Since I'm getting almost twice that amount of T3 & well less than half that amount of T4 in my current dose of Armour, does this sound like a proper & safe switch? Based on my history while taking T4 only, I seem to have some kind of conversion issue & showed her that, providing copies of all of my previous lab results. I asked for RT3 to be tested as well & she said "that's an expensive test usually only ordered when someone is very sick in the hospital", same with RBC magnesium rather than serum. I already feel awful, I'm concerned about cutting my T3 in half will make me feel even worse. I'm also wondering if going from the current 38mcg of T4 in Armour to 100mcg of Synthroid will be too big of a sudden increase. Does anyone have any insight, advice, suggestions, anything for me with this? One more thing... She wants to repeat labs in 3 months. Shouldn't this be done at around 6 weeks unless someone's symptoms have been resolved & their levels are consistent?
All of my symptoms & entire history of lab results are on my profile.
TSH 1.6 (0.5-4.7)
FT4 0.77 (0.73-1.95)
FT3 2.6 (2.3-4.2)
Iron, Serum 51 (35-145)
TIBC 370 (250-450)
UIBC 319 (155-300) *Above High Normal
%Sat 14 (20-50) *Below Low Normal
Ferritin 77 (10-220)
Magnesium, Serum 1.9 (1.3-2.3)
Vitamin B-12 428 (250-1100)
Vitamin D, 25 OH 40 (no range given)
Thank you all in advance.
All of my symptoms & entire history of lab results are on my profile.
TSH 1.6 (0.5-4.7)
FT4 0.77 (0.73-1.95)
FT3 2.6 (2.3-4.2)
Iron, Serum 51 (35-145)
TIBC 370 (250-450)
UIBC 319 (155-300) *Above High Normal
%Sat 14 (20-50) *Below Low Normal
Ferritin 77 (10-220)
Magnesium, Serum 1.9 (1.3-2.3)
Vitamin B-12 428 (250-1100)
Vitamin D, 25 OH 40 (no range given)
Thank you all in advance.
I really appreciate you taking the time to help me look up self-order lab info. That means a lot to me.
I had a few tests today that the pulmonologist ordered, I'll finish them up on Monday, then see him again. Of course, none of the people doing the testing today had anything to offer me aside from "we'll get this to your doctor & he'll contact you with the results". I'm fairly confident that they won't show much, if anything. I truly feel this is all related to my thyroid &/or deficiencies.
I understand that you don't share your story for sympathy & that you do so to help others. I can't help but feel for anyone who's on or been down a similar path. With those that I've shared what I'm going through with & what I'm learning along the way, it's the same thing. I'm not looking for a pity party - just answers, relief, wellness & hopefully all of it will somehow help someone else one day.
A lady in a testing center asked me today (as we were talking about shortness of breath & air hunger) how I manage it & all I could tell her is "One day, hour, or minute at a time. And on really bad days, one breath at a time." Honestly, I guess that's all any of us can do, regardless of what exactly we're dealing with. I'm trying to look at it in the light that someone always has it worse than I do & I woke up this morning. No matter what I have to struggle with today, I was given today & that's a blessing. My heart's still beating, so there's hope to one day feel better.
The dull headaches I was having after switching back to synthetics from Armour have gone away & I've adjusted to the switch now. I'm looking forward to alternating 50/100 starting next week & am hoping I'll start noticing a difference from there. As I've mentioned before, where I felt best was Synthroid 75 & Cytomel 10, but felt I needed an increase & had room for it according to my levels. So, I'm still hanging onto hope to get back there & beyond.
I had a few tests today that the pulmonologist ordered, I'll finish them up on Monday, then see him again. Of course, none of the people doing the testing today had anything to offer me aside from "we'll get this to your doctor & he'll contact you with the results". I'm fairly confident that they won't show much, if anything. I truly feel this is all related to my thyroid &/or deficiencies.
I understand that you don't share your story for sympathy & that you do so to help others. I can't help but feel for anyone who's on or been down a similar path. With those that I've shared what I'm going through with & what I'm learning along the way, it's the same thing. I'm not looking for a pity party - just answers, relief, wellness & hopefully all of it will somehow help someone else one day.
A lady in a testing center asked me today (as we were talking about shortness of breath & air hunger) how I manage it & all I could tell her is "One day, hour, or minute at a time. And on really bad days, one breath at a time." Honestly, I guess that's all any of us can do, regardless of what exactly we're dealing with. I'm trying to look at it in the light that someone always has it worse than I do & I woke up this morning. No matter what I have to struggle with today, I was given today & that's a blessing. My heart's still beating, so there's hope to one day feel better.
The dull headaches I was having after switching back to synthetics from Armour have gone away & I've adjusted to the switch now. I'm looking forward to alternating 50/100 starting next week & am hoping I'll start noticing a difference from there. As I've mentioned before, where I felt best was Synthroid 75 & Cytomel 10, but felt I needed an increase & had room for it according to my levels. So, I'm still hanging onto hope to get back there & beyond.
COMMUNITY LEADER
Thank you... I don't tell people my story to get sympathy; I tell them, so they understand that there are those of us there who have, literally, "been there, done that" because so many really think they are alone and that their situation is totally unique when, in fact, most of us walk the same or a similar road to wellness. That's the nature of the beast, because of the way doctors are taught in med school to treat thyroid patients - looking at TSH first, then most likely ignoring everything else, even if they do test it.
It never works to have more than one doctor trying to manage the same thyroid condition, because one will think the medication and levels are good, the other probably won't; the patient gets caught in the middle and ends up on a never ending roller coaster of up and down meds and hormone levels.
Doctors are taught that TSH is a proper reflection of actual thyroid hormone levels and many of them simply won't believe otherwise. Even when you try to explain to them why it might not be, they either refuse to listen or don't understand... those doctors aren't worth wasting your time with.
Yes, labs should be done every 6 weeks while actively adjusting meds and you're doing well to keep records of all your blood tests. It's pretty pathetic that doctors don't pass on pertinent information to other doctors, but unfortunately, they don't. I'm glad to took your labs with you to the pulmonologist.
I doubted that your folate was low due to alcoholism... when I said drugs, I actually meant other prescriptions, not illegal drugs, though I guess those can have an effect as well. I do think smoking has an effect, but it doesn't sound you're a heavy smoker.
Of course, doctors want patients who don't know anything and won't question what they're doing, so they can prescribe whatever meds they want. Those meds, of course, are, typically, the newer ones that cost the most... I know that Big Pharma actually pays to put some doctors through med school, so I guess the doctors have to prescribe the drugs to help pay back their education!! I've often wondered what they get for a kickback for every prescription they write for certain meds. The problem with the newer meds is that insurance often won't cover them, or if they do, they're covered at a lower rate than older meds or those with generics, so it ends up costing the patient a lot more money.
Well, if your mother has passed away, there's no point trying to second guess what her problem was. Just stay on top of your own medical issues in order to make sure nothing remotely close to that happens to you.
Well, don't forget, exercise helps, with the breathing issue, as well. We have to stay active in order to keep ourselves "younger"... I do walk a couple of miles nearly every day so that keeps my lungs and breathing in better shape, but I was trying to walk every day when I was having the breathing issue and it was very difficult and I couldn't go very far without huffing and puffing and stopping to rest.
There are those doctors who want to bully their patients into doing whatever they say and there are those who will follow their doctor blindly, no matter what they say. You're not expecting too much... those doctors did take an oath to do harm, yet many of them do far more harm than good.
I think if you stay your course, with the 50 mcg, then alternating with 100 for a couple weeks you'll be doing well.
Yes, there are several good sites from which to order the blood tests... I'll put together a list of them... some have raised prices since I last looked at them - heck maybe they all have. The one I've actually used myself is healthcheckusa, which used to be $85 for TSH, FT3 and FT4, but I know they've gone up to about $115. I think there's one that's less than that and works the same way. I'll look it up and let you know in the next day or so.
It never works to have more than one doctor trying to manage the same thyroid condition, because one will think the medication and levels are good, the other probably won't; the patient gets caught in the middle and ends up on a never ending roller coaster of up and down meds and hormone levels.
Doctors are taught that TSH is a proper reflection of actual thyroid hormone levels and many of them simply won't believe otherwise. Even when you try to explain to them why it might not be, they either refuse to listen or don't understand... those doctors aren't worth wasting your time with.
Yes, labs should be done every 6 weeks while actively adjusting meds and you're doing well to keep records of all your blood tests. It's pretty pathetic that doctors don't pass on pertinent information to other doctors, but unfortunately, they don't. I'm glad to took your labs with you to the pulmonologist.
I doubted that your folate was low due to alcoholism... when I said drugs, I actually meant other prescriptions, not illegal drugs, though I guess those can have an effect as well. I do think smoking has an effect, but it doesn't sound you're a heavy smoker.
Of course, doctors want patients who don't know anything and won't question what they're doing, so they can prescribe whatever meds they want. Those meds, of course, are, typically, the newer ones that cost the most... I know that Big Pharma actually pays to put some doctors through med school, so I guess the doctors have to prescribe the drugs to help pay back their education!! I've often wondered what they get for a kickback for every prescription they write for certain meds. The problem with the newer meds is that insurance often won't cover them, or if they do, they're covered at a lower rate than older meds or those with generics, so it ends up costing the patient a lot more money.
Well, if your mother has passed away, there's no point trying to second guess what her problem was. Just stay on top of your own medical issues in order to make sure nothing remotely close to that happens to you.
Well, don't forget, exercise helps, with the breathing issue, as well. We have to stay active in order to keep ourselves "younger"... I do walk a couple of miles nearly every day so that keeps my lungs and breathing in better shape, but I was trying to walk every day when I was having the breathing issue and it was very difficult and I couldn't go very far without huffing and puffing and stopping to rest.
There are those doctors who want to bully their patients into doing whatever they say and there are those who will follow their doctor blindly, no matter what they say. You're not expecting too much... those doctors did take an oath to do harm, yet many of them do far more harm than good.
I think if you stay your course, with the 50 mcg, then alternating with 100 for a couple weeks you'll be doing well.
Yes, there are several good sites from which to order the blood tests... I'll put together a list of them... some have raised prices since I last looked at them - heck maybe they all have. The one I've actually used myself is healthcheckusa, which used to be $85 for TSH, FT3 and FT4, but I know they've gone up to about $115. I think there's one that's less than that and works the same way. I'll look it up and let you know in the next day or so.
I'm so sorry for all you've been through (and everyone else). It sounds like you went through he!!, as well. I'm so glad that your ENT referred you to your endo & that he's helped get you back to better health. I don't blame you at all for not allowing anyone but the endo you trust to adjust your thyroid medication. It doesn't help at all when more than one doctor at a time is making adjustments, I've found.
One would think that, with thyroid diseases becoming increasingly common, these doctors would be willing to learn how to properly test for, diagnose & manage them. In 2 years, I've already been through 5 primary doctors & am on my 2nd endocrinologist - trying to find someone who will treat me clinically, knows something about Hashimoto's, understands that I need dosage increases as my gland is destroyed & produces less hormone & will help me get well. Oh, AND one who isn't obsessed with a TSH level that's almost meaningless once someone's on meds!! When I started T3, the primary at the time flipped her lid, claiming she was right, I didn't need T3 & that my TSH was "very very low". I actually laughed out loud in front of her & showed her on my phone that it commonly happens & it doesn't mean I'm suddenly hyper or don't need the medication. I told her the lower it got & the higher my free Ts got, the better I felt, but she said she didn't understand it. That was when she sent me to the first endo... I just hate it that so many people have to go through this.
Thank you for validating my understanding of testing while actively adjusting. I feel it's absolutely necessary for anyone with Hashimoto's because of the on-going destruction to the gland. I think if this endo insists on 3 month labs, I'm going to be doing my own in between at 6 weeks & providing her with the results, even if she doesn't acknowledge them. At least I'll have them for my own records (I document everything) & for any future doctors I may see, like this pulmonologist now - he didn't have access to any of my previous records, so since I had plenty to show him myself, he was pleased. I would appreciate information on which websites you & other members use for ordering their own testing. I know there are many out there now.
As for my folate, I honestly didn't notice the steady decline in my level until I posted all of my historical labs on my profile here. It's dropped a great deal during this length of time. I do have absorbancy issues & am trying to improve gut health to see if that helps. I will do some research before supplementing folate, thank you for the info. Just for the record, I'm not pregnant & I'm not an alcoholic. I don't drink & never have. Same goes for drugs, I've never even smoked weed. My only vice was cigarettes. I smoked from 18-30 y/o, quit for almost a year, then gave into stress & smoked again for a few months in 2013 & quit for good in January 2014.
I agree completely with you that doctors prefer patients with no knowledge about their condition. And the ones you tell that you've researched something are quick to tell you that there's too much misinformation on the internet & it can't be trusted... It seems all too common for them to just write everything off as either obesity, depression or anxiety these days (after all, there are pills for that!) & I'm sick of it. They order a CBC & tell you that you're just fat & depressed, to eat less & exercise more & everything is all well & good. Band-aid "healthcare" isn't cutting it with me anymore. I want my life back! I'm one of the people they hate who knows their body, knows when something is really wrong, researches everything & wants to know exactly what's going on & how to fix it, not just stick a band-aid on the problem until it becomes something far worse. Maybe I intimidate them because I'm not an idiot, and perhaps I anger them because I want them to actually do their job correctly & thoroughly, I don't know. Is that really too much to ask from medical professionals - people we pay more than any other hired professional? Am I expecting too much from people who take an oath to do no harm & to help heal the sick? They don't seem to understand that they work for us.
You know, I've often wondered about my mother's asthma & COPD. Since experiencing this air hunger myself, it's made me reflect a lot upon what all she went through for decades. Her thyroid was never tested, they just told her when she started complaining that she was short of breath & couldn't catch a deep breath that she was asthmatic, then had chronic bronchitis, then COPD. They gave her a rescue inhaler, added breathing treatments at home with a nebulizer, then eventually said she had sleep apnea (without doing a sleep study) & gave her a bi-pap. They put her on supplemental oxygen at night, which was eventually made 24/7 & basically just screwed around with it all until her lungs & heart failed, her body was exhausted & she died. I truly believe with all of my heart now that she had what I have. She had all of my symptoms for the last 20 years of her life & it kills me that no one ever thought to look at her thyroid.
It doesn't surprise me at all that you were misdiagnosed & in fact, I'm expecting to be as well. I'm so glad that you don't actually have COPD & can now keep up a conversation at a good pace & that your breathing has improved by optimally adjusting your levels. Hearing things like this gives me a glimmer of hope to cling to. I'm praying that I will one day be blessed with the same improved ease of breathing, rather than meeting my mother's same fate at the hands of uncaring doctors with a god complex who could all stand to further their education to better help their patients feel & be well.
Over the last couple of years, I've come to feel very strongly about the care we receive & how we're 'bullied' into believing whatever a doctor says just because they speak with an authoritative tone & have an expensive piece of paper hanging on their wall. It's all about the almighty dollar, imo. And if they help get us well, they lose some of that money they have rolling in that they never seem to think is enough... Nope, can't vent at the doctors, they'd definitely call in the men in little white coats with bring big syringes full of more drugs we don't really need for problems we don't really have - lol.
I'll continue the 50mcg through this week, then alternate 50 & 100mcg for a couple weeks before moving on to the full 100mcg daily. And as I said, I think I'll be ordering my own FT3/FT4 if the endo refuses to test mid-point before my next appointment in May.
Thank you for everything, Barb! :)
One would think that, with thyroid diseases becoming increasingly common, these doctors would be willing to learn how to properly test for, diagnose & manage them. In 2 years, I've already been through 5 primary doctors & am on my 2nd endocrinologist - trying to find someone who will treat me clinically, knows something about Hashimoto's, understands that I need dosage increases as my gland is destroyed & produces less hormone & will help me get well. Oh, AND one who isn't obsessed with a TSH level that's almost meaningless once someone's on meds!! When I started T3, the primary at the time flipped her lid, claiming she was right, I didn't need T3 & that my TSH was "very very low". I actually laughed out loud in front of her & showed her on my phone that it commonly happens & it doesn't mean I'm suddenly hyper or don't need the medication. I told her the lower it got & the higher my free Ts got, the better I felt, but she said she didn't understand it. That was when she sent me to the first endo... I just hate it that so many people have to go through this.
Thank you for validating my understanding of testing while actively adjusting. I feel it's absolutely necessary for anyone with Hashimoto's because of the on-going destruction to the gland. I think if this endo insists on 3 month labs, I'm going to be doing my own in between at 6 weeks & providing her with the results, even if she doesn't acknowledge them. At least I'll have them for my own records (I document everything) & for any future doctors I may see, like this pulmonologist now - he didn't have access to any of my previous records, so since I had plenty to show him myself, he was pleased. I would appreciate information on which websites you & other members use for ordering their own testing. I know there are many out there now.
As for my folate, I honestly didn't notice the steady decline in my level until I posted all of my historical labs on my profile here. It's dropped a great deal during this length of time. I do have absorbancy issues & am trying to improve gut health to see if that helps. I will do some research before supplementing folate, thank you for the info. Just for the record, I'm not pregnant & I'm not an alcoholic. I don't drink & never have. Same goes for drugs, I've never even smoked weed. My only vice was cigarettes. I smoked from 18-30 y/o, quit for almost a year, then gave into stress & smoked again for a few months in 2013 & quit for good in January 2014.
I agree completely with you that doctors prefer patients with no knowledge about their condition. And the ones you tell that you've researched something are quick to tell you that there's too much misinformation on the internet & it can't be trusted... It seems all too common for them to just write everything off as either obesity, depression or anxiety these days (after all, there are pills for that!) & I'm sick of it. They order a CBC & tell you that you're just fat & depressed, to eat less & exercise more & everything is all well & good. Band-aid "healthcare" isn't cutting it with me anymore. I want my life back! I'm one of the people they hate who knows their body, knows when something is really wrong, researches everything & wants to know exactly what's going on & how to fix it, not just stick a band-aid on the problem until it becomes something far worse. Maybe I intimidate them because I'm not an idiot, and perhaps I anger them because I want them to actually do their job correctly & thoroughly, I don't know. Is that really too much to ask from medical professionals - people we pay more than any other hired professional? Am I expecting too much from people who take an oath to do no harm & to help heal the sick? They don't seem to understand that they work for us.
You know, I've often wondered about my mother's asthma & COPD. Since experiencing this air hunger myself, it's made me reflect a lot upon what all she went through for decades. Her thyroid was never tested, they just told her when she started complaining that she was short of breath & couldn't catch a deep breath that she was asthmatic, then had chronic bronchitis, then COPD. They gave her a rescue inhaler, added breathing treatments at home with a nebulizer, then eventually said she had sleep apnea (without doing a sleep study) & gave her a bi-pap. They put her on supplemental oxygen at night, which was eventually made 24/7 & basically just screwed around with it all until her lungs & heart failed, her body was exhausted & she died. I truly believe with all of my heart now that she had what I have. She had all of my symptoms for the last 20 years of her life & it kills me that no one ever thought to look at her thyroid.
It doesn't surprise me at all that you were misdiagnosed & in fact, I'm expecting to be as well. I'm so glad that you don't actually have COPD & can now keep up a conversation at a good pace & that your breathing has improved by optimally adjusting your levels. Hearing things like this gives me a glimmer of hope to cling to. I'm praying that I will one day be blessed with the same improved ease of breathing, rather than meeting my mother's same fate at the hands of uncaring doctors with a god complex who could all stand to further their education to better help their patients feel & be well.
Over the last couple of years, I've come to feel very strongly about the care we receive & how we're 'bullied' into believing whatever a doctor says just because they speak with an authoritative tone & have an expensive piece of paper hanging on their wall. It's all about the almighty dollar, imo. And if they help get us well, they lose some of that money they have rolling in that they never seem to think is enough... Nope, can't vent at the doctors, they'd definitely call in the men in little white coats with bring big syringes full of more drugs we don't really need for problems we don't really have - lol.
I'll continue the 50mcg through this week, then alternate 50 & 100mcg for a couple weeks before moving on to the full 100mcg daily. And as I said, I think I'll be ordering my own FT3/FT4 if the endo refuses to test mid-point before my next appointment in May.
Thank you for everything, Barb! :)
COMMUNITY LEADER
Unfortunately, the titration of my med from 25 mcg to 50 mcg to 75 mcg to 100 mcg was the only thing that doctor did right and it was not the end of my story nor was my treatment the storybook tale it sounds like it might have been; in fact, it turned out to be quite the nightmare...
When I went back for my 6 week blood work, my TSH had dropped to the basement (< 0.001) and my pcp panicked and started backing down on my med, but my TSH refused to budge, so he kept backing down on my med, in spite of the fact that my FT4 was below range... all he was doing was trying to get my TSH back into range. He refused to even test FT3. He had me back down to 25 mcg Synthroid and the next step was to take away my med, because he thought maybe I didn't need it after all, in spite of the fact that my TSH had been 55+ at diagnosis!! It turned out that I got sent to an ENT that I'd seen previously for an unrelated issue, about that time. By this time, I was barely navigating. The ENT took one look at me and said "What the he!! happened to you?". I explained what was going on and the ENT sent me for antibody testing and a thyroid ultrasound, both of which my pcp had also refused. When the results came back, the ENT diagnosed Hashimoto's and referred me to my current endo and we began the long road of getting me back to health.
I kicked my pcp to the curb and found another, but he, too, is more concerned over TSH than anything else. He did lower my med once because of my TSH and within days I was nearly a basket case, but I had an appointment with my endo, so he put me back up where I needed to be. I no longer allow anyone but my endo to adjust my thyroid med.
I, too, have had to ask for all of my increases in med - basically, what I do is increase it on my own (using meds I have from scripts I didn't finish when my pcp was backing off my meds or when we were increasing from dose to dose - I never throw away unused scripts), then when I go back to the endo, I tell him what I've done and how much better I feel, then, if my lab results substantiate what I've done, he writes the script for what I ask for.
You're right that when meds are being actively adjusted, labs should be done every 6 weeks, but no further apart than 8 weeks, though there are some doctors who will drag it out to 3 months. I suppose as long as you're feeling well, that's okay... When we started getting mine "relatively" close, my endo would give me 2 lab orders and have me test after 6 weeks, and again at 12 weeks and I'd see him after the 12 week labs, unless there was an issue at the 6 week mark. We did the same thing when I was getting ready to go to 6 month checkups -- I'd do labs at 3 months and 6 months and see him at the 6 month point. There is some flexibility is everything is going well and you're feeling okay, but if you're not feeling okay, your doctor should not be leaving you on your own.
Okay - I'm glad you realize that it does take time for the med to stabilize in your blood.
The only way you can tell how well you're converting is to have a Free T3 done when you have a Free T4 test. Since you're paying for your own labs, I can tell you where to get a thyroid panel done that includes both FT3 and FT4, but you need to wait until you've been on the Synthroid long enough for it to get into your system good.
Your folate is quite low. Folate deficiency is most often related to low dietary intake, pregnant women or alcoholics. You don't mention being pregnant and I doubt you're an alcoholic, so I'll assume your levels are low due to low intake or low absorbancy. Daily recommended intake is 400-600 mcg, but you should be aware that there may be some undesirable side effects from folate supplementation, so do your research before you supplement.
Many doctors prefer people who don't know anything about their medical condition, because they can get by with shoddy practices, low level testing and they can blame your symptoms on something other than what's really causing them... Many doctors are intimidated by informed patients and will try to bully you into believing they are right... that's what happened with the pcp who diagnosed me and it didn't work because I ended up kicking him to the curb.
Well, with insurance the way it is, these days, doctors aren't getting paid a whole lot (so they think), so of course, they want to make sure they get to use all of their facilities, including their labs as much as possible, so I'm sure they do order unnecessary tests, while assuming that you can't figure out what to order on your own... golly, what if they just cooperated and told you what to order? Now wouldn't that be simple? But no, they won't do that! How stupid...
Odd thing about that air hunger... I had horrible shortness of breath when I was hypo and was sent to a pulmonologist, too. They did some tests and because I had recently stopped smoking, I was diagnosed with COPD and put on an expensive medication called Spireva, that insurance wouldn't cover... Can you tell where this is going?... LOL The Spireva helped for a little while, but then it didn't do anything and since insurance wouldn't cover it, I quit taking it... at over $300/month, I wasn't about to continue something that didn't work!! Once my thyroid levels started coming up, I began noticing that my breathing kept getting better and better. Today, I can keep up a pretty good pace and still keep up a conversation... no COPD, after all.
I think you'll be wise to stay with the 50 mcg for a few more days, then alternate a half pill and a whole pill to average 75 mcg for a couple of weeks. It takes longer to get your levels up, but you're already at more T4 than you were getting with the Armour and only slightly less T3, so your dosage hasn't really changed all "that" much.
Don't ever stop fighting them to feel better and if they refuse to help you, don't hesitate to find a different doctor. We've had members who went through 6, 8, 10 doctors before they found one who would treat them clinically and help them get well... We're here to give support and how well I know you can't vent in the doctor's office - they'd call in the men in the little white coats, wouldn't they? LOL We'll be here.
When I went back for my 6 week blood work, my TSH had dropped to the basement (< 0.001) and my pcp panicked and started backing down on my med, but my TSH refused to budge, so he kept backing down on my med, in spite of the fact that my FT4 was below range... all he was doing was trying to get my TSH back into range. He refused to even test FT3. He had me back down to 25 mcg Synthroid and the next step was to take away my med, because he thought maybe I didn't need it after all, in spite of the fact that my TSH had been 55+ at diagnosis!! It turned out that I got sent to an ENT that I'd seen previously for an unrelated issue, about that time. By this time, I was barely navigating. The ENT took one look at me and said "What the he!! happened to you?". I explained what was going on and the ENT sent me for antibody testing and a thyroid ultrasound, both of which my pcp had also refused. When the results came back, the ENT diagnosed Hashimoto's and referred me to my current endo and we began the long road of getting me back to health.
I kicked my pcp to the curb and found another, but he, too, is more concerned over TSH than anything else. He did lower my med once because of my TSH and within days I was nearly a basket case, but I had an appointment with my endo, so he put me back up where I needed to be. I no longer allow anyone but my endo to adjust my thyroid med.
I, too, have had to ask for all of my increases in med - basically, what I do is increase it on my own (using meds I have from scripts I didn't finish when my pcp was backing off my meds or when we were increasing from dose to dose - I never throw away unused scripts), then when I go back to the endo, I tell him what I've done and how much better I feel, then, if my lab results substantiate what I've done, he writes the script for what I ask for.
You're right that when meds are being actively adjusted, labs should be done every 6 weeks, but no further apart than 8 weeks, though there are some doctors who will drag it out to 3 months. I suppose as long as you're feeling well, that's okay... When we started getting mine "relatively" close, my endo would give me 2 lab orders and have me test after 6 weeks, and again at 12 weeks and I'd see him after the 12 week labs, unless there was an issue at the 6 week mark. We did the same thing when I was getting ready to go to 6 month checkups -- I'd do labs at 3 months and 6 months and see him at the 6 month point. There is some flexibility is everything is going well and you're feeling okay, but if you're not feeling okay, your doctor should not be leaving you on your own.
Okay - I'm glad you realize that it does take time for the med to stabilize in your blood.
The only way you can tell how well you're converting is to have a Free T3 done when you have a Free T4 test. Since you're paying for your own labs, I can tell you where to get a thyroid panel done that includes both FT3 and FT4, but you need to wait until you've been on the Synthroid long enough for it to get into your system good.
Your folate is quite low. Folate deficiency is most often related to low dietary intake, pregnant women or alcoholics. You don't mention being pregnant and I doubt you're an alcoholic, so I'll assume your levels are low due to low intake or low absorbancy. Daily recommended intake is 400-600 mcg, but you should be aware that there may be some undesirable side effects from folate supplementation, so do your research before you supplement.
Many doctors prefer people who don't know anything about their medical condition, because they can get by with shoddy practices, low level testing and they can blame your symptoms on something other than what's really causing them... Many doctors are intimidated by informed patients and will try to bully you into believing they are right... that's what happened with the pcp who diagnosed me and it didn't work because I ended up kicking him to the curb.
Well, with insurance the way it is, these days, doctors aren't getting paid a whole lot (so they think), so of course, they want to make sure they get to use all of their facilities, including their labs as much as possible, so I'm sure they do order unnecessary tests, while assuming that you can't figure out what to order on your own... golly, what if they just cooperated and told you what to order? Now wouldn't that be simple? But no, they won't do that! How stupid...
Odd thing about that air hunger... I had horrible shortness of breath when I was hypo and was sent to a pulmonologist, too. They did some tests and because I had recently stopped smoking, I was diagnosed with COPD and put on an expensive medication called Spireva, that insurance wouldn't cover... Can you tell where this is going?... LOL The Spireva helped for a little while, but then it didn't do anything and since insurance wouldn't cover it, I quit taking it... at over $300/month, I wasn't about to continue something that didn't work!! Once my thyroid levels started coming up, I began noticing that my breathing kept getting better and better. Today, I can keep up a pretty good pace and still keep up a conversation... no COPD, after all.
I think you'll be wise to stay with the 50 mcg for a few more days, then alternate a half pill and a whole pill to average 75 mcg for a couple of weeks. It takes longer to get your levels up, but you're already at more T4 than you were getting with the Armour and only slightly less T3, so your dosage hasn't really changed all "that" much.
Don't ever stop fighting them to feel better and if they refuse to help you, don't hesitate to find a different doctor. We've had members who went through 6, 8, 10 doctors before they found one who would treat them clinically and help them get well... We're here to give support and how well I know you can't vent in the doctor's office - they'd call in the men in the little white coats, wouldn't they? LOL We'll be here.
You were started on the same dose I was, 25mcg. The difference was that you were increased steadily, as I assumed I would be after being diagnosed & researching. However, I've never had an dose increase without begging for it & being met with doctor resistance/denial. The one who diagnosed me was just going to leave me at the starter dose of 25mcg & my FT3 level sitting at the low end of the lab's reference range, with me barely able to function, unable to get out of bed. He was fired & it's been hell with the rest of them I've seen since then, even the first endo I saw was reluctant to increase me beyond 75mcg T4 & 10mcg T3. I don't understand why they're so afraid of replacement. Everyone wants to wait to test me at 3 or 6 months. It's been my understanding that while trying to find your optimal levels & the right dosages for you, you should test every 6 weeks, not twice that long at 3 months. Am I wrong?
I do know that it takes 4-6 weeks for T4 to reach its potential & show in the lab. I think after 2 weeks, I will alternate between 50mcg & 100mcg daily, as you said, to achieve an average of 75mcg/day & do that for 2 weeks, then try the 100mcg. I wish I knew how much T4 I'm actually converting to T3. Having been on 75mcg T4 & 10mcg T3 last year & still having room for improvement in both, I'm not scared of working up to 100mcg T4 at all, I'm just wondering if I'll be converting enough of it to T3.
I will look for sublingual/chewable Methyl B-12 & not get carried away with the amount I take daily. You're right, it would be a waste to just pee out whatever I can't use lol. I do limit my red meat consumption (I'm not big on any meat, actually), but I do love greek yogurt, as well as eggs & don't believe any of the negative things we've been told about them (eggs) being so "bad" for us. I know people who eat 6 whole eggs a day & are perfectly healthy. Thank you for the great info on B-12.
I didn't realize that I'd forgotten to include the folate result when I listed my latest lab results. Here's my folate lab history:
09/27/13 12.7 (>3.0)
11/21/13 10.2 (>3.0)
05/21/14 5.7 (>3.0)
02/02/15 3.4 (>3.0)
The first two here were with supplementation the first primary I was seeing had me start. The third primary told me there was "no need to supplement that", so I stopped taking it & the last two results are without supplementation.
As for iron, it's prescribed & the new endo now has me taking 2x what I have been for the last 2 years. They've been good at checking my iron/ferritin levels when I ask - surprisingly.
I will continue to tell them what you said to about being "in range", but wanting to be optimal. I have before, but will offer them scientific studies from now on to prove my point. I have noticed when I do show them documents in black & white, they don't disregard so quickly what I'm saying & asking for. I take it as "Uh oh, she knows things. I better pretend I care & do a bit more." & they don't seem to like that much. They seem to like uninformed, uneducated patients they can push around more than those who go in & show them they know something.
I appreciate all of the help I've found here & know this is a good place for help with ordering my own tests, as well. I know that they just don't want patients to order their own because they want us to use their labs, so the money stays with them & this is why they often refuse to accept lab results from labs not their own... They can't fool me with "no, those results are not reliable", I'm not an idiot, I know what they're doing. And they definitely do order far more unnecessary tests than people who've "been there, done that" would recommend. It's funny, they'll order expensive tests I don't ask for, but won't order what I do request. Lol go figure...
I'm really hoping & praying that the air hunger IS a hypo symptom & just hasn't gone away because I've yet to be at optimal dosages to achieve optimal T4/T3 levels. There's a history of pulmonary & cardiac problems on both maternal & paternal sides of my family, so I've been really scared since all of this began so suddenly. Even with a long family history of thyroid, autoimmune & cardiopulmonary diseases & even several kinds of cancer, they haven't taken me seriously. I'm thankful I'm finally having more tests done to either try to find a problem or possibly prove it's hypo/hashi related. And boy am I ever praying it's the latter.
I'll try to be patient, continue to fight them to feel better & cling to hope. Thank you so much for your support & for allowing me to vent some frustration. We sure can't do it in a doctor's office without being told we're depressed... I'm so thankful for the ability to communicate with other people who understand. I'd be lost if it weren't for groups of people like all of you here sharing, helping, supporting & caring. I truly hope one day, I can be on the opposite side of this & be as helpful to others.
I do know that it takes 4-6 weeks for T4 to reach its potential & show in the lab. I think after 2 weeks, I will alternate between 50mcg & 100mcg daily, as you said, to achieve an average of 75mcg/day & do that for 2 weeks, then try the 100mcg. I wish I knew how much T4 I'm actually converting to T3. Having been on 75mcg T4 & 10mcg T3 last year & still having room for improvement in both, I'm not scared of working up to 100mcg T4 at all, I'm just wondering if I'll be converting enough of it to T3.
I will look for sublingual/chewable Methyl B-12 & not get carried away with the amount I take daily. You're right, it would be a waste to just pee out whatever I can't use lol. I do limit my red meat consumption (I'm not big on any meat, actually), but I do love greek yogurt, as well as eggs & don't believe any of the negative things we've been told about them (eggs) being so "bad" for us. I know people who eat 6 whole eggs a day & are perfectly healthy. Thank you for the great info on B-12.
I didn't realize that I'd forgotten to include the folate result when I listed my latest lab results. Here's my folate lab history:
09/27/13 12.7 (>3.0)
11/21/13 10.2 (>3.0)
05/21/14 5.7 (>3.0)
02/02/15 3.4 (>3.0)
The first two here were with supplementation the first primary I was seeing had me start. The third primary told me there was "no need to supplement that", so I stopped taking it & the last two results are without supplementation.
As for iron, it's prescribed & the new endo now has me taking 2x what I have been for the last 2 years. They've been good at checking my iron/ferritin levels when I ask - surprisingly.
I will continue to tell them what you said to about being "in range", but wanting to be optimal. I have before, but will offer them scientific studies from now on to prove my point. I have noticed when I do show them documents in black & white, they don't disregard so quickly what I'm saying & asking for. I take it as "Uh oh, she knows things. I better pretend I care & do a bit more." & they don't seem to like that much. They seem to like uninformed, uneducated patients they can push around more than those who go in & show them they know something.
I appreciate all of the help I've found here & know this is a good place for help with ordering my own tests, as well. I know that they just don't want patients to order their own because they want us to use their labs, so the money stays with them & this is why they often refuse to accept lab results from labs not their own... They can't fool me with "no, those results are not reliable", I'm not an idiot, I know what they're doing. And they definitely do order far more unnecessary tests than people who've "been there, done that" would recommend. It's funny, they'll order expensive tests I don't ask for, but won't order what I do request. Lol go figure...
I'm really hoping & praying that the air hunger IS a hypo symptom & just hasn't gone away because I've yet to be at optimal dosages to achieve optimal T4/T3 levels. There's a history of pulmonary & cardiac problems on both maternal & paternal sides of my family, so I've been really scared since all of this began so suddenly. Even with a long family history of thyroid, autoimmune & cardiopulmonary diseases & even several kinds of cancer, they haven't taken me seriously. I'm thankful I'm finally having more tests done to either try to find a problem or possibly prove it's hypo/hashi related. And boy am I ever praying it's the latter.
I'll try to be patient, continue to fight them to feel better & cling to hope. Thank you so much for your support & for allowing me to vent some frustration. We sure can't do it in a doctor's office without being told we're depressed... I'm so thankful for the ability to communicate with other people who understand. I'd be lost if it weren't for groups of people like all of you here sharing, helping, supporting & caring. I truly hope one day, I can be on the opposite side of this & be as helpful to others.
COMMUNITY LEADER
When I was started on Synthroid, I was started on 25 mcg for 2 weeks, then increased to 50 mcg for 2 weeks, then increased to 75 mcg for 2 weeks, then increased to 100 mcgs, which was to be my final dose... however, I never made it to 100 mcg at that time, nor did I stay on Synthroid ... I settled out at 88 mcg of various T4 meds, for over 5 yrs and just last Aug went up to 100 mcg Levoxyl.
I know you're getting really hypo, so you can try going up, but remember, it takes 4-6 weeks for the med to reach full potential, and you're a long way from that ... If you aren't having any adverse effects, you might try alternating a half pill (50 mcg) with a whole pill (the full 100 mcg) for few days - that would average to 75 mcg/day and see how that works for a couple of weeks.
You were on 60 mg of Armour which only contains 9 mcg of T3; you're still getting 5 mcg, so you haven't dropped that much T3, but on your labs, both your FT3 and FT4 were too low and your body just hasn't adjusted to the change and started the conversion process yet.
The dull headache you're getting could be from being hypo or it could from changing med... it's not unusual for symptoms to worsen or for new ones to appear when changing meds or dosages.
Well, your B-12 is "in range" as I mentioned, but certainly could use supplementing. B-12 isn't toxic and is readily available OTC is several forms. I'd recommend a liquid or sublingual/chewable, Methyl B-12, which is "body ready", meaning it doesn't have to be converted to anything... If you buy the other form - cyanocobalamin, it has be converted to the Methyl anyway - so get the good stuff. Liquid or sublingual/chewable will get it into your body much more quickly than something you swallow and let dissolve in your tummy. 500-1000 mcg/day is a typical dose - no need to get carried away - you'll just pee out excess, which is a waste... lol Eat foods rich in B-12, as well. B-12 only comes from animal products and the best sources are red meats, eggs and dairy.
I don't see any folate result, so I can't make a recommendation on that... folate, too, is readily available OTC and nobody needs megadoses.
I usually recommend that iron be supplemented under a doctor's care, but it, too, is readily available OTC... buy a good brand that's non constipating and make sure you don't take it within 4 hours of any thyroid medication. I wouldn't take a real high dose. Also try to eat more iron rich foods (red meats are the best, but many people don't eat those these days, though they've gotten a bad rap as being unhealthy).
Next time a doctor tells you you're "within range", just tell them that you understand that, but you also know that sometimes "in range" isn't good enough --- that you want to be optimal and in order to do that you have to be higher in the ranges than you are. Offer to bring them scientific studies to prove what you're saying. Sometimes you have to get a little pushy with them... show them that you know a bit about their jobs and you know they aren't doing their best to make you feel better.
Oh, don't let them get by with telling you that ordering your tests online is a waste of money... we can help you with that!!! Sometimes doctors order a lot more unnecessary tests than we'll have you order... lol
If I had to take a guess, I'd say your air hunger is a hypo symptom and I hope the pulmonologist finds that... did you take your thyroid hormone test results with you? I, typically, take mine with me, when I see a different doctor, so they can see that thyroid hormone levels may be involved.
I think once you get up to the full 100 mcg Synthroid, you'll feel different, but I'm going to caution you, that that might still be too much T4; you'll have to see how your tests end up, but you won't be able to go by the next set, because you're starting out low, unless your FT4 really jumps, since you are getting more T4 than you were with the Armour, which was only giving you 38 mcg of T4. You're only on day 6 of the 50 mcg and at the risk of sound like a broken record, it takes 4-6 weeks for T4 med to reach full potential.
No, you're not the only person who's felt this way... I can feel your frustration and unfortunately, all too many of us have "been there, done that".
Just don't give up; give the Synthroid time to do its thing...
I know you're getting really hypo, so you can try going up, but remember, it takes 4-6 weeks for the med to reach full potential, and you're a long way from that ... If you aren't having any adverse effects, you might try alternating a half pill (50 mcg) with a whole pill (the full 100 mcg) for few days - that would average to 75 mcg/day and see how that works for a couple of weeks.
You were on 60 mg of Armour which only contains 9 mcg of T3; you're still getting 5 mcg, so you haven't dropped that much T3, but on your labs, both your FT3 and FT4 were too low and your body just hasn't adjusted to the change and started the conversion process yet.
The dull headache you're getting could be from being hypo or it could from changing med... it's not unusual for symptoms to worsen or for new ones to appear when changing meds or dosages.
Well, your B-12 is "in range" as I mentioned, but certainly could use supplementing. B-12 isn't toxic and is readily available OTC is several forms. I'd recommend a liquid or sublingual/chewable, Methyl B-12, which is "body ready", meaning it doesn't have to be converted to anything... If you buy the other form - cyanocobalamin, it has be converted to the Methyl anyway - so get the good stuff. Liquid or sublingual/chewable will get it into your body much more quickly than something you swallow and let dissolve in your tummy. 500-1000 mcg/day is a typical dose - no need to get carried away - you'll just pee out excess, which is a waste... lol Eat foods rich in B-12, as well. B-12 only comes from animal products and the best sources are red meats, eggs and dairy.
I don't see any folate result, so I can't make a recommendation on that... folate, too, is readily available OTC and nobody needs megadoses.
I usually recommend that iron be supplemented under a doctor's care, but it, too, is readily available OTC... buy a good brand that's non constipating and make sure you don't take it within 4 hours of any thyroid medication. I wouldn't take a real high dose. Also try to eat more iron rich foods (red meats are the best, but many people don't eat those these days, though they've gotten a bad rap as being unhealthy).
Next time a doctor tells you you're "within range", just tell them that you understand that, but you also know that sometimes "in range" isn't good enough --- that you want to be optimal and in order to do that you have to be higher in the ranges than you are. Offer to bring them scientific studies to prove what you're saying. Sometimes you have to get a little pushy with them... show them that you know a bit about their jobs and you know they aren't doing their best to make you feel better.
Oh, don't let them get by with telling you that ordering your tests online is a waste of money... we can help you with that!!! Sometimes doctors order a lot more unnecessary tests than we'll have you order... lol
If I had to take a guess, I'd say your air hunger is a hypo symptom and I hope the pulmonologist finds that... did you take your thyroid hormone test results with you? I, typically, take mine with me, when I see a different doctor, so they can see that thyroid hormone levels may be involved.
I think once you get up to the full 100 mcg Synthroid, you'll feel different, but I'm going to caution you, that that might still be too much T4; you'll have to see how your tests end up, but you won't be able to go by the next set, because you're starting out low, unless your FT4 really jumps, since you are getting more T4 than you were with the Armour, which was only giving you 38 mcg of T4. You're only on day 6 of the 50 mcg and at the risk of sound like a broken record, it takes 4-6 weeks for T4 med to reach full potential.
No, you're not the only person who's felt this way... I can feel your frustration and unfortunately, all too many of us have "been there, done that".
Just don't give up; give the Synthroid time to do its thing...
Barb, again, thank you for your response & information.
Yes, I do know that pigs make a lot more T3 than we humans do & I definitely believe that the ratio was not right for me personally. At one point last year, I was making a tiny bit of progress & I should have known better than to rock the boat. I should have just stayed the course... I think I was so desperate to just feel better that I wanted to try desiccated & ther people had raved about how their lives were changed by it. I should know by now that I always seem to be an exception to everything lol. When I saw the new endo, I simply told her I didn't care what she wants to put me on, I just want to feel better. I want the symptoms to go away, I want to feel well & I want to live my life with some kind of normalcy again. And I'm perfectly fine being back on synthetic as long as my body accepts & uses it.
Today was the 6th day I've taken 50mcg (half of the 100mcg dose she prescribed) of brand Synthroid & the full prescribed 5mcg of generic Cytomel. I'm very weak & tired, I can definitely feel the decrease in T3, all of my symptoms persist (of course, I'm far from optimal). On a good note, the awful lingering taste in my mouth from the Armour is gone & my sweat no longer smells like it (still don't know why it did that to me). Since switching back to synthetic, I've had a slight dull headache, but I had the same happen when I first started it back in 2013. I think my body just has to adjust a bit. I'm not sure how long I should continue with splitting the 100mcg dose & only taking half daily. Any insight on that? The endo told me to take the full dose when I checked with her, but it worried me, so I'm easing into the 100mcg on my own anyway. Do you think it's okay to jump from 50mcg to 100mcg, or should I go to 75mcg in between? I seem to be quite sensitive to dosage changes (high resting heart rate, palpitations & chest pain), that's why I want to make it as smooth as possible.
I would like to supplement B12 & folate (it's steadily declined over the last 2 years), but honestly have no idea how much to take daily. Any advice? According to these doctors I see, I don't need to take any at all, because I'm "within range", of course.
I don't take anything with or near my thyroid meds. I take them at 8am on an empty stomach with water, wait an hour before eating & drinking anything other than water & don't take any other pills until after 12pm, with iron (& vitamin C to aid absorption) at bedtime because it has an intolerable aftertaste to me that I don't notice while sleeping. I want to give myself the best chance I can with my thyroid replacement. I guess it comes with being desperate to feel better. I keep telling them that I'm doing everything 'right' to the best of my knowledge, but feel horrible. Then they look at me like I'm crazy...
I do tell every doctor I see that I'm paying out of pocket, that there's no insurance involved & it does no good. And when I ask if they'll accept results for tests I order myself online, they say I'll just be wasting my money on tests I don't need.
I was finally sent for a consultation with a pulmonologist on 2/12 (probably because they're tired of me complaining about it) for the sudden onset of "air hunger" that's been constant for over 2 years now & started this whole adventure for me. I'll be having a series of tests done on 2/20, so I guess I'll see if any of those reveal anything, though the pulmonologist said he doesn't expect to find anything out of sorts.
I'm just tired of them all assuming I should feel fine because my results are somewhere within a lab's reference range. I wish they could live in my body for just one day. Then they'd see I'm not fine. Sometimes I just want to give up & be sick & have no quality of life like they seem to want me to.
Surely I'm not the only person who's felt this way...
Yes, I do know that pigs make a lot more T3 than we humans do & I definitely believe that the ratio was not right for me personally. At one point last year, I was making a tiny bit of progress & I should have known better than to rock the boat. I should have just stayed the course... I think I was so desperate to just feel better that I wanted to try desiccated & ther people had raved about how their lives were changed by it. I should know by now that I always seem to be an exception to everything lol. When I saw the new endo, I simply told her I didn't care what she wants to put me on, I just want to feel better. I want the symptoms to go away, I want to feel well & I want to live my life with some kind of normalcy again. And I'm perfectly fine being back on synthetic as long as my body accepts & uses it.
Today was the 6th day I've taken 50mcg (half of the 100mcg dose she prescribed) of brand Synthroid & the full prescribed 5mcg of generic Cytomel. I'm very weak & tired, I can definitely feel the decrease in T3, all of my symptoms persist (of course, I'm far from optimal). On a good note, the awful lingering taste in my mouth from the Armour is gone & my sweat no longer smells like it (still don't know why it did that to me). Since switching back to synthetic, I've had a slight dull headache, but I had the same happen when I first started it back in 2013. I think my body just has to adjust a bit. I'm not sure how long I should continue with splitting the 100mcg dose & only taking half daily. Any insight on that? The endo told me to take the full dose when I checked with her, but it worried me, so I'm easing into the 100mcg on my own anyway. Do you think it's okay to jump from 50mcg to 100mcg, or should I go to 75mcg in between? I seem to be quite sensitive to dosage changes (high resting heart rate, palpitations & chest pain), that's why I want to make it as smooth as possible.
I would like to supplement B12 & folate (it's steadily declined over the last 2 years), but honestly have no idea how much to take daily. Any advice? According to these doctors I see, I don't need to take any at all, because I'm "within range", of course.
I don't take anything with or near my thyroid meds. I take them at 8am on an empty stomach with water, wait an hour before eating & drinking anything other than water & don't take any other pills until after 12pm, with iron (& vitamin C to aid absorption) at bedtime because it has an intolerable aftertaste to me that I don't notice while sleeping. I want to give myself the best chance I can with my thyroid replacement. I guess it comes with being desperate to feel better. I keep telling them that I'm doing everything 'right' to the best of my knowledge, but feel horrible. Then they look at me like I'm crazy...
I do tell every doctor I see that I'm paying out of pocket, that there's no insurance involved & it does no good. And when I ask if they'll accept results for tests I order myself online, they say I'll just be wasting my money on tests I don't need.
I was finally sent for a consultation with a pulmonologist on 2/12 (probably because they're tired of me complaining about it) for the sudden onset of "air hunger" that's been constant for over 2 years now & started this whole adventure for me. I'll be having a series of tests done on 2/20, so I guess I'll see if any of those reveal anything, though the pulmonologist said he doesn't expect to find anything out of sorts.
I'm just tired of them all assuming I should feel fine because my results are somewhere within a lab's reference range. I wish they could live in my body for just one day. Then they'd see I'm not fine. Sometimes I just want to give up & be sick & have no quality of life like they seem to want me to.
Surely I'm not the only person who's felt this way...
She said she she will prescribe it, but doesn't like desiccated because while usable, the ratio of T4 to T3 in pigs isn't right for most humans. I told her I can show her a few websites where a lot of patients would disagree with that, but at this point, I just want to get all of my levels where they need to be, no matter which med & supplements I have to take. It's been over 2 years, I'm desperate to feel better! I'm just looking to feel well enough to pack up & relocate. I'm sick of dealing with these doctors in this state who don't care.
I've been anemic since I was a child, but was never told to supplement until after my symptoms began. At first, all of it was said to be because of my iron, then it was the low vitamin D level that the ordering doctor said was "profound" at 11. They don't know what to blame my symptoms on, but seem to think that just because I'm within range with everything, there's nothing wrong, even though I've told them all this time, I feel like I'm dying & need help! Then I'm told I'm depressed & have anxiety.
I have so much room to improve my levels in everything, yet I get "everything looks good, all normal" from these doctors I've seen. Also, if anyone looks at my Folate level that has been checked randomly on the past, it has steadily decreased. I told her I was concerned about that & would like it checked, yet it wasn't ordered.
I'm seriously considering shelling out about a grand when I get my tax refund to see a naturopathic doctor for spectracell testing of all micronutrients & to order my own saliva cortisol & sex hormone testing online, since no one will even humor me & order what I ask for repeatedly. I know my body & pay out of pocket, I don't understand what the problem is with ordering tests, it's just more money for them!
In the meantime, I plan to increase my iron as instructed (I've done this on my own in the past), increase my vitamin D, start - 12 & a multivitamin that will give me some extra everything.
I don't take any other medications except for daily Zyrtec & oral Provera (progesterone) from the 1st through the 12th monthly for a uterine problem.
I will ask about splitting that 100mcg of Synthroid for a couple weeks & if she says to take it all, I may just split it on my own anyway. I've felt hyper a few times (guessing it's been when part of my thyroid dies & dumps a burst of hormone into my system?), so I'd like to prevent any more of that if possible.
Thank you for responding, you are very helpful & encouraging. I appreciate you & everyone here so much.
I've been anemic since I was a child, but was never told to supplement until after my symptoms began. At first, all of it was said to be because of my iron, then it was the low vitamin D level that the ordering doctor said was "profound" at 11. They don't know what to blame my symptoms on, but seem to think that just because I'm within range with everything, there's nothing wrong, even though I've told them all this time, I feel like I'm dying & need help! Then I'm told I'm depressed & have anxiety.
I have so much room to improve my levels in everything, yet I get "everything looks good, all normal" from these doctors I've seen. Also, if anyone looks at my Folate level that has been checked randomly on the past, it has steadily decreased. I told her I was concerned about that & would like it checked, yet it wasn't ordered.
I'm seriously considering shelling out about a grand when I get my tax refund to see a naturopathic doctor for spectracell testing of all micronutrients & to order my own saliva cortisol & sex hormone testing online, since no one will even humor me & order what I ask for repeatedly. I know my body & pay out of pocket, I don't understand what the problem is with ordering tests, it's just more money for them!
In the meantime, I plan to increase my iron as instructed (I've done this on my own in the past), increase my vitamin D, start - 12 & a multivitamin that will give me some extra everything.
I don't take any other medications except for daily Zyrtec & oral Provera (progesterone) from the 1st through the 12th monthly for a uterine problem.
I will ask about splitting that 100mcg of Synthroid for a couple weeks & if she says to take it all, I may just split it on my own anyway. I've felt hyper a few times (guessing it's been when part of my thyroid dies & dumps a burst of hormone into my system?), so I'd like to prevent any more of that if possible.
Thank you for responding, you are very helpful & encouraging. I appreciate you & everyone here so much.
COMMUNITY LEADER
Why doesn't your endo just increase your Armour instead of switching you back to Synthroid and Cytomel? I don't remember all your history and it doesn't make a lot of sense, but it can be done, if she's determined to do it... Sounds like she might be one of those that doesn't like desiccated hormones.
When you switch to Synthroid, I'm sure your doctor is assuming that you're going to be converting some of that FT4 to FT3, which is why she's only starting you on 5 mcg Cytomel. 100 mcg Synthroid may be too large a dose to start on, though... you might have to split that for a couple of weeks and let your body adjust to it.
Looking at your labs and your symptoms, thyroid doesn't appear to be your only problem, though your thyroid hormone levels are certainly too low.
Your iron level is pretty low in the range and your saturation level is actually below range. Low iron can cause horrible fatigue and other symptoms. Iron is also necessary for the metabolism of thyroid hormones.
Your vitamin B-12 is also too low in the range. Vitamin B-12 deficiency causes the most horrendous fatigue you can imagine. Japan considers anything under 500 as deficient and my lab actually puts a note on the report saying that levels below 500 can cause symptoms. I have Pernicious Anemia and I have to keep my levels at, or above the top of the range in order to keep symptoms at bay, even with adequate thyroid hormone levels.
Your vitamin D level is also too low. Vitamin D is necessary for the metabolism of thyroid hormones, plus vitamin D deficiency can cause a lot of hypo-like symptoms.
You should also look at any other medications you might be taking to make sure they don't cause side effects that could cause some of your symptoms... I recently realized that 2 of my medications were causing a bunch of my symptoms - tiredness and weight gain were 2 of them, when I'm struggling to stay awake all day and lose weight - thank you Dr...
When you switch to Synthroid, I'm sure your doctor is assuming that you're going to be converting some of that FT4 to FT3, which is why she's only starting you on 5 mcg Cytomel. 100 mcg Synthroid may be too large a dose to start on, though... you might have to split that for a couple of weeks and let your body adjust to it.
Looking at your labs and your symptoms, thyroid doesn't appear to be your only problem, though your thyroid hormone levels are certainly too low.
Your iron level is pretty low in the range and your saturation level is actually below range. Low iron can cause horrible fatigue and other symptoms. Iron is also necessary for the metabolism of thyroid hormones.
Your vitamin B-12 is also too low in the range. Vitamin B-12 deficiency causes the most horrendous fatigue you can imagine. Japan considers anything under 500 as deficient and my lab actually puts a note on the report saying that levels below 500 can cause symptoms. I have Pernicious Anemia and I have to keep my levels at, or above the top of the range in order to keep symptoms at bay, even with adequate thyroid hormone levels.
Your vitamin D level is also too low. Vitamin D is necessary for the metabolism of thyroid hormones, plus vitamin D deficiency can cause a lot of hypo-like symptoms.
You should also look at any other medications you might be taking to make sure they don't cause side effects that could cause some of your symptoms... I recently realized that 2 of my medications were causing a bunch of my symptoms - tiredness and weight gain were 2 of them, when I'm struggling to stay awake all day and lose weight - thank you Dr...
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Oh, you definitely have room to improve your levels and for anyone to tell you everything is okay, is crazy...
If you're paying for all your labs out of pocket, you might mention that to your doctor next time you request a certain lab; that might prompt her to order it.
Make sure you're taking that Zyrtec and Provera away from your thyroid medications as they could interfere with absorption of the thyroid med, especially, the Zyrtec. In addition, make sure you take iron and other vitamins/minerals at least 4 hours away thyroid med as they, too, interfere with absorption of thyroid med. I take my T4 and half my T3 in the morning, the other half my T3 around noon, then vitamins/minerals (especially minerals) in the afternoon/evening.
Yes, do see about splitting that 100 mcg Synthroid for a bit just till you get used to it... I've split pills of all strengths and I don't see any reason why she should say no, but I'm with you - I'd probably do it on my own if she did.
Happy to be able to help...