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My Thyroid Journey.......

Sep 18, 2009 - 21 comments

As most everyone knows, I’ve been around on the forum for “a while”.  I read the posts of people that are newly diagnosed and I see myself so clearly in THEIR posts.  

I had felt like "barnyard stuff" for so long and doctors kept blowing me off, then all of a sudden, there was a diagnosis and we know WHY I feel this way --- give me that pill and let it work NOW.......and how disappointed I was when I took the first pill and an hour later, I still felt the same.......OF COURSE, I'd been told it would take several weeks, but I was so totally desperate and did not want to wait “several weeks” –  I just knew this “magic pill” was going to work better and faster for ME than it had ever worked for anyone before---that’s “desperation”…

Can you possibly imagine the devastation I felt when after several days, I wasn’t jumping for joy over how good I felt??  Yes, I *KNOW* it’s supposed to take several weeks --- but that’s for YOU, but not for ME ----  then all of a sudden one day, I looked in the mirror and realized that the bags under my eyes were gone – those bags that the doctor said was from not enough sleep (I was sleeping 12 hrs at a time for heaven sake – how could I not be getting enough sleep??).  Then I noticed that my hair didn’t fall out quite so bad, but I still didn’t FEEL GOOD………..

Then putting up with the remarks from my husband and co-workers, like “well, you take medicine for that, you can’t still feel THAT bad”………I kept pushing myself every day to “get up, go to work”.  Getting home in the afternoon was the hardest part – just let the red lights last a few minutes longer so I can get in a nap, then I’ll be fine”……..oh, when I think of that now, it scares me to death……..I still have those days every now and then and yes, it still scares me to death…………

My pcp was absolutely NO help and got just totally irate when he found out I was doing research on my own, would not listen to me at all, just totally discounted my symptoms with a wave of his hand and an arrogant “THERE’S NOTHING WRONG WITH YOU” and he was out the door.  That anxiety just about did me in – the fear that the one person I trusted to help make me better was pretty much calling me a hypochondriac.

Then his nurse practitioner panicked over a couple of things that were totally thyroid related, but SHE didn’t think so…….one was the pressure, choking, pain in my neck – SHE thought it was related to surgeries that I’d had on my vocal cords.. I tried to tell her that was not right, but she wouldn’t listen, so I let her send me back to the ENT that had done those surgeries in hopes that he would be able to help me with the REAL problem.  Oh, what a dear man he was..............

From there, I got the Hashi dx, referral to endo --- that part is history……oh – she (NP) also freaked over my low heart rate (holter monitor showed appox 35 bpm during sleep); that resulted in a referral to a cardiologist – another  hypo symptom, but stroke of luck for me because the cardiologist wanted a stress test (passed with flying colors) and an echocardiogram – oops, shame on pcp cuz he really got angry over that referral, but it showed that I have a leaky heart valve that, although is not serious at this time, definitely bears watching……

Also in there, the ENT sent me to a gastroenterologist (pcp wouldn’t think of THAT either) because I had acid reflux and used the strongest acid reducer for over 8 yrs and ENT was concerned about what that might have done to my esophagus.  Well, of course the gastroenterologist wants to “burn the candle at both ends” – which showed my esophagus was ok (thank you God), but I had polyps on my colon --- oops, another shame on pcp - fortunately, the polyps were removed and found to be benign.  Oh, forgot to mention that I have one brother who had esophageal cancer and another with colon cancer --- oops, another shame on pcp for not thinking there was a need to check those things………..

I got to a point where I had to force myself to stop thinking about how BAD I felt and concentrate on "getting well"........I began to realize that my anxiety over not feeling better "right now" was actually contributing to making me feel worse --- every little twinge of pain, different tingle or whatever happened to my body seemed to be magnified at least 100 times, so of course I felt worse --- and worse -- and worse........yes, if you think about it, it DOES make sense!!!  

I’m currently dealing with a co-worker who, almost every day, IMPLIES that I’m a hypochondriac………

One day, I mentioned that I had to go for blood work the next day – she looked at me and said “why, didn’t you just go for blood work?”.  I said “well, it’s been 6 weeks”.  She said “why would go that often unless you just like to have blood work done?”……I said “I have to have regular blood work in order to adjust my med(s) right”.. She gave me the blankest stare I’ve seen in a long time………

Then the other day, I wasn’t feeling very well and I mentioned a “Hashi attack” – she looked at me and said “now wait a minute --- I *KNOW* there’s nothing “attacking” you.  I had to stop and explain that, as *I* understand it, the antibodies are attacking my thyroid, but sometimes, they sort of go into “remission” and during THOSE times, I feel pretty good, but then all of a sudden, for some reason I don’t understand, they “kick up their activity again” and I feel like  --- well, barnyard stuff – for a few days….

Yesterday, I mentioned to this person that I was thinking of going gluten free and of course she couldn’t imagine why -------- oh, I must tell you --- she is about 5’ tall (my height) and weighs – I’m not sure, but thinking it has to be around 400 pounds…AND she has fatty liver disease and refuses to get blood work done when she's supposed to...go figure.....I tried to explain to her about vitamin deficiencies and how the stomach lining can become damaged by gluten, etc (yeah, I’m thinking celiac) ---- she just looked at me again with that blank stare…….

Topped off today when I went into her office, where our dept coffee pot is and I was cold so had put on a long sleeved tee shirt…….She looked at me and said “WHAT are you doing with a sweatshirt on?”.  I said, “it’s not a sweatshirt, it’s a tee shirt and I put it on because I’m chilled” ---- She said “there’s no way you can be cold when it’s 70+ outside and about the same in here”…………There was nothing I could do but shrug my shoulders (movement helps warm me up…lol) and leave her office because I wanted to say “nasty things” to her……..
I have to be honest --- I feel SO much better than I did in 2007 when I was dx’d with pernicious anemia…….started on B12 shots and got SO much better, but still couldn’t stay awake; begged my pcp’s nurse practitioner for thyroid tests and here I am.  

My journey began and I guess in my mind, I know  it’s NEVER going to end, but I keep thinking that I felt like “barnyard stuff” for SO many years – I just don’t want to stop searching for answers until I feel “good”.  I’m 60 yrs old and feel better now than I did when I was 40 --- I can’t help but think I can actually get to the bottom of the things that have been wrong all these years, making me feel so badly ---

Am I a hypochondriac??? I don’t think so --- if I don’t feel good, I don’t feel good – there’s nothing wrong with trying to feel better, is there???????




Comments
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Avatar universal
by TamraW, Sep 18, 2009
LOOOVVVEEE your post!  I would absolutely love to share your story on my blog one day!

BTW - I have an interview on my blog now from a woman who was on this forum. Her antibodies were 20,000 and I thought it would be great for her to share her story. I am hearing now (after I put up the blog) that no one can have such high antibodies. Do you think I've been duped? I really want to believe this person.

:) Tamra

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by peggy64, Sep 18, 2009
Beautifully put. There is nothing wrong with trying to feel better. sometimes we get so used to feeling bad that we forget there ever was a "feeling good."   Drs should really pay more attention to what their patients are saying, and not just be thinking about the next 25 they have to see.

I want so bad to get get well too, Barb. I am glad you can work. I wish I could.

blessings,

Peggy

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by twehner5, Sep 18, 2009
Barb, I'm the biggest "CHICK" in YOUR barnyard cheering you on toward better health!  You'll never know how badly I want for you to find MORE answers.  You'll never know....

Great journal....in a bittersweet kind of way, now suck it up and get on with it!!!!!       LOL !!!!!

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by peggy64, Sep 18, 2009
BTW, barb you are a great writer!

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by ChitChatNine, Sep 18, 2009
Barb, your journal touched my heart -- being a thyroid patient myself, well --- you tell it like it is and the "barnyard stuff" .. well, maybe we should get out some shovels and start scooping it up because you've suffered for so long and only now are on the right track.

My advice to you is Trust your Instincts, they have Never, Ever Let me Down.

The older I get the less I can be around ignorant people;  don't know how you've been so kind with your co-worker ... good thing I wasn't in the room.

hee hee

C~

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by dawnangela, Sep 18, 2009
Barb..You hit the nail on the head with that one.. Cheers.. Dawn x

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by TrudieC, Sep 18, 2009
Bravo, my friend!  So well put and I commend you on the strength and commitment you've shown to taking control of your health.  I am teary eyed reading this and you have stirred the fight in me.  So sorry you need to deal with such small minded people.  

Hugs, Trudie

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by stella5349, Sep 19, 2009
Nice job - and for that co worker.... Barb

She apparently doesn't have enough respect for herself and so she's going to look at you like "your" off your rocker - when actually SHE is .

I know you have a super kind heart - but sometimes dealing with what YOU know is best. If I can predict things... this girl will have an episode real soon with her health and if she's smart - she'll dig as much as you did to get well too.

Then you both will stand there with Tshirts on!! - LOL

xoxoxo

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by Barb135, Sep 19, 2009
Thanks everyone for your kind words.  These thoughts have been rumbling around in my head for day/weeks and the person about the long sleeved tee shirt, was the straw that broke the camel's back.  That and seeing the posts that say, "I've been on med for a week and nothing's changed" ---- my heart goes out because I can see immediately that they think the same way I did and that it's likely they have set themselves up for a big disappointment................

Actually, Stella, the person I referred to, DOES have health issues - I know one of them is a liver problem.  I've begged her to get her thyroid checked and she said she did, but the results were "normal".  I asked her to bring me a copy of the lab report and even explained to her how doctors just look at the range on the lab report and if you fall into it, they say you are "normal" -- anyway, she just looks at me like I've sprouted 2 heads....Unfortunately, she's one of those people who will follow the doctor blindly without question, because "after all, he IS the doctor" --- and to that *I* say "whoopty doo"!!!   I am a very determined person when it comes to helping other people get well, but I've given up on this one.  She doesn't want help, so all I can do is try to be there to help pick up the pieces when things fall apart.  

There was another incident yesterday, with a different co-worker that I didn't mention.  I work more closely with this person than I do the secretary in the office, who's been "ridiculing" me, so it's not always possible to just walk away from him, like I can her.  Anyway, we were out on a job and something came up about not feeling well, etc -- he knows there are a lot of days I don't feel well (or at least as good as I should), and he also knows I have thyroid issues and take b12 shots, but like most people can't connect the symptoms to the diseases, besides "you take medicine, what's the problem?".  Anyway, I don't remember exactly how it started, but suddenly he stopped what he was doing and looked at me kind of funny for a few seconds, then he said ----- "ARE YOU SICK?"

I could only stare back at him for a minute before I said "Yes, I AM sick... I have 2 incurable diseases (that I know of) that are each taking a giant toll on my body.  Some days more than others, but yes, I'm sick; although I'm working as hard as I can to get well"....

I run into the same attitude with most people -- even my husband doesn't understand how I can be cold when it's 80 degrees, or why I gain weight working out every day or any of the other things that don't make sense.  But then I haven't really tried to pound all this stuff into him either -- he's much more interested in his cars than he is in my FT3/FT4/TSH issues (and I don't say that in a "mean" way).  This just became an issue so much bigger than either of us thought possible, that, quite honestly, I spare him as much of the "gory" detail as I can; after all, what do I gain by making him feel as badly as I do?   Now when he "wonders out loud" how I can be cold when it's 80 degrees --- I just give him "the look" and he shrugs and goes on to something else.  Sometimes, he gets a bit frustrated with me because I don't have the strength and stamina that I used to have, but he's even getting used to that and willingly helps me with things that I used to be able to do by myself.  I've just started telling him that "no matter what happens to me right now, just assume that it's thyroid related and if something else comes along to change that, I'll let you know".........

Tamra - I read your blog about the person with 20,000 antibody count.  First off, I don’t see WHY you wouldn’t be able to have a count that high.  I don’t know how they run the sample to get that count, but they apparently have a way to count that high.  

It is my understanding, though, that a high antibody count does not automatically make one "sicker" than a lower count. Antibodies are antibodies and whether they are only a few or a huge “army” they are going to do the same thing – destroy your thyroid – maybe the army will get the job done a bit faster, I don’t know – if that would be the case, then I’d love for MY count to have been that high, so we could “get this show on the road and get it over with”.  

My antibody count was originally *only* 268, then went up to 300+ (don’t remember the exact # without pulling the lab report) and has been holding steady there.  I don’t see that that makes any difference.  I didn’t feel any worse when the count went up than I did when it was lower and I can't imagine that the person in your blog feels/felt any worse than some of us, with lower counts.  If she feels a lot worse than I do/did, I certainly feel sorry for her because I can't count the number of days I almost wished I could roll over and die, so I would never have to move again.  Obviously, I don't really WANT to die, I just FELT like it --- or I wouldn't be fighting the battle as hard as I am............

I think the thing is --- Hashimoto’s is Hashimoto’s - our bodies are all individual, so it hits everyone differently: and some of us are going to have a rough time, some will breeze right through it, like my sister did.  




Avatar universal
by vinners, Sep 25, 2009
OMG as i read your post and my the way very well written, I felt like you were writting about me I am currently trying to get off my medicine that how bad I feel, I am the "numbers" are great, but none of the symtoms are gone my tsh is at 90 yet still i am trying, i feel fine, I have just started kelp to try and get my thyroid working on its own, HAS ANYBODY HAD ANY SUCCESS DOING THIS!!!!!!!!!!!!!!!!!!

Avatar universal
by vinners, Sep 25, 2009
After I was dx with hypo and hashi I had an espisode where my first was tinged yellow my nose huge eyes sunk in and just looked horrible didn't really feel bad just looked horrible and woke up like that one christmas morn, scared the **** out of me and my family, have pics of it so that i can prove it if need be or to remember it everytime i see it i get sick.
Has anyone else had this happen????
Oh by the way the next day almost back to normal and the day after that I was.

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by Barb135, Sep 25, 2009
If you are hypo and hashi - your thyroid will never start working on it's own and you can't get off your med.  I don't know what country you are in but if you are in the US and your TSH is 90 - you are extremely sick and you need MORE med, not less.  What are your free T3 and free T4 levels?  

There are some people who are doing well on iodine, but for the most part, it's not recommended for Hashi patients; and I've also been told that kelp is not the ideal way to get it.  You might try to get hold of Stella5349, who is one of the CL's on the thyroid forum - I know she was on it and I believe still is - she could give you a lot of guidance on that issue.  

It sounds like you need to go back to see your doctor and insist that something be done.........best of luck

Avatar universal
by vinners, Sep 26, 2009
THanks Barb I cut back on my meds just to see, I felt great for one month taking half of wht I would normally take my tsh normally is below 1. I have increased my meds but not to where they were.
So your saying if you have hashimotos that you can never get off the meds?

Avatar universal
by vinners, Sep 26, 2009
also barb after this month trial of cutting back on my meds my free t4 was 0.5.  But also what about people that have hashimotos yet don't have thryoid disease, I know a few people like that. SO there thryoids are still functioning and their labs are all normal, so why coudn't a sluggish thryoid be brought back to life after thyroid meds and even with a hashi dx? Is there a reason you said that. I am desperate to get off these meds, or start experienmenting with different ones like armour cause having all of these side affects and still having lal of the hypo symptoms is no way to live!!

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by Barb135, Sep 27, 2009
Here's a message that I would normally put into a PM, but this is another things I'm hearing way too much about, also, so am going to put it in here as another journal entry in hopes that some more people will stop by and read it.........

Vinners - I don't know what side effects you are having from the med; the only one you really should have is to feel better.  What is the lab range for that FT4?  It's most likely too LOW ----------------------

I think you need to stop thinking about getting off meds and come to terms with the fact that you need them, they can make you well........Most likely people who have Hashi's, but are not hypo yet, will eventually become hypo -- the antibodies are constantly "chomping" away at their thyroid and once enough of it is dead, it will no longer be able to produce hormones and they will have to take med to replace the lost hormones -- that's where I'm at, and most likely, you are too, with an FT4 of only 0.5.  

I'm not going to say there's absolutely no way to kick start your thyroid because I guess basically, nothing is impossible, but I will venture to say to that it's highly unlikely and you'd do yourself a much bigger favor to stay on the med and let it work for you.  

Also, if you haven't already, go to the thyroid forum and read all the posts, in which one of the MAIN messages is: do NOT try to manage your thyroid issues using *only* TSH values.  TSH is a pituitary hormone and while an excellent indicator of what the pituitary is doing, does not correlate well with the thyroid.  You need to go by your FT3 and FT4 values.  With an FT4 value of only 0.5, I'd guess that what you are calling "side effects" from the med is actually still hypo feelings.  You aren't well yet, my friend - please concentrate more on getting your med adjusted to get your FT's in line - your "side effects" might then go away....You need to stay consistent with your meds -- if after a few months, you don't feel that one is working for you, ask your doctor for other options, but always base your decisions on how you feel, along with the lab reports.  Have you had an FT3 done?  If so, what's that value, along with lab's reference range?  

There are some things we just can't change -- and taking thyroid med for an under, or inactive thyroid is one of them.  We can get well so much quicker if we concentrate on getting on the right med and our meds leveled out than we do trying to get off them, since that "ain't gonna happen"................

Good luck.


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by LisafromFL, Jan 10, 2010
Barb,  just came across your journal entry.  Wow - I can relate to so many aspects of it.  I, too, work with a woman in her 20's who thinks I am "feeling sick" so that I don't have to work; however, I work circles around HER.  Another coworker said, out of concern, I think, that I was "sick" a lot.  I told her not really, but that some days it really was a challenge.  Then, about a month later I was Dx with Hashimoto's, which cleared up so much for me once I saw a list of symptoms.  I wanted to cry when I realized that it really wasn't all in my head, it was REAL!  Even though I have taken Synthroid for years, I have never been told I had Hashi's.  It's like a curtain has been lifted.  (There is a lot to my journey in between and I hope one day soon to post it all.)
   Today I am 4 days post-op from a TT, waiting for the pathology reports, which should be here in about two weeks.  The doc is going to keep me on Synthroid .150 (with an extra .075 on Sundays) until we see how I am doing.  Already I feel like my energy has done a turnaround.  I am hoping it stays this way.  He didn't think I would notice a difference since I was on the meds before the surgery.  I'm choosing to look at everything since last Wednesday as a positive.  And I will not stop until I feel like I am as far as I can get.
Keep up the posts.  I love your style of writing!

--- Lisa

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by Barb135, Jan 11, 2010
Hi Lisa-- I'm glad that you enjoyed my journal -- I think it fits so many of us.  Why did you have to have a TT? Did you have cancer or something?

I'm happy to report that following a "crash" brought on by my pcp looking only at TSH, I am now "back".  The thing was -- my pcp took one look at my TSH and insisted that I was hypo, in spite of the fact that my Frees were barely mid range and he demanded that I allow him to decrease my med.  Shame on me -- I didn't argue with him and in just a matter of days, I was SO hypo it wasn't funny.  

Fortunately, within a month, I also had an appt with my endo.  As soon as I told him what had happened, he grabbed his prescription pad and wrote me a new script.  I was on 75 mcg levo, alternating with 88 mcg; my pcp lowered me to just 75; because by the time I had blood work done again, my frees were low, my endo raised me up to a daily 88 mcg.  I still have my daily 5 mcg cytomel.  

I'm happy to say that I'm now feeling better than I have in a long, long time; I'm finally able to lose some weight without working my rear off and I'm no longer depending on daily laxatives -- wow, what a difference.  Just losing a few pounds has brightened my outlook immensely -- I'm down approx 6 pounds since Dec 20..........it's not a lot, but at least it's enough to let me know it's not impossible.............I really CAN see the light at the end of the tunnel.

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by peggy64, Jan 11, 2010
Barb, congratulations on the 6 lbs. When you go for ever and can't lose any weight, no matter how hard you try, 6 lbs is a big deal!!

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by Barb135, Jan 11, 2010
I've been struggling since early 2007 to get rid of weight and all I've been able to do is gain or if I did drop a pound or two, it was back within hours..............so depressing.  I've been told from the beginning by other members here on MH AND by my doctors that when my thyroid levels were right, I'd be able to lose again -- I guess we're there and I'm just praying that I stay there.

I'd give anything if I could just "bring all you guys" with me, so you'd feel better to.  But since I can't, just promise me that you won't give up either and of course, I'll be here for a long time -- I'm not exactly where I need to be yet, but SO close.  

Avatar universal
by Ange009, Jun 14, 2015
Hi barb ....need ur help pls .. I have high cholesterol 7 since last couple of yrs ... And just found out I have low thyroid on border line ...so the doctor put me on thyroxine tablet 50 mg for 6 weeks then need to do another blood test in 6weeks .to see if this made any difference .. Dr said if it hasent made any difference she will increase my dose ..am not taking any medication for cholesterol tablet.. but just wondering by taking thyroid tablet would this bring down my high cholesterol..dr said I may have to stay on thyroid tablet rest of my life not that I want to ...am small built weigh only 52kg at this stage am not gaining or losing weight ...what do you think barb this hypothyroidism pls ...Angie

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by Barb135, Jun 14, 2015
Hi Ange009... this is a very old journal and it would be better if you post on the a thyroid forum or send me a private message.. You can post on the forum by clicking the following link, then click on the green Post a Question at the top of the page.  That will give you a new screen on which to type your question and when you are finished, click the green Post a Comment at the bottom of the page.  

http://www.medhelp.org/forums/Thyroid-Disorders/show/73

You can send me a private message by hovering your mouse over my name, then clicking on the "Send a Message" button, when you  get the drop down box.  

Either way you choose to do it is fine.  You should include your most recent lab thyroid lab results and the reference ranges shown on your lab report, so we have a better idea what your doctor is testing and what she's basing her decisions on.  

High cholesterol is a symptom of hypothyroidism, however, it can't be guaranteed that it will come down simply by taking the thyroid hormone.  I've been on thyroid hormones since 2007 and my cholesterol is just now coming down to normal levels, but I don't think it's completely because of the thyroid hormones, I think it's partially because of my diet and exercise, as well.

Most of us on thyroid medication are on it for life.

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