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Avatar universal

I'm tired of being made to feel like I'm crazy

So I went to the new thyroid doctor today and felt totally and completely blown off and unvalidated.  :(

Quick background:  12 lb gain in 2 weeks, total 20.  Exhausted, cold extremities, brain fog, achy..on and on.  I'm trying to train for a marathon (my 4th), so I'm not uneducated when it comes to nutrition and exercise.

She pretty much said my blood work from September (TSH) was "normal" (all of my lab work is on low range of normal, including below normal for vitamin B and D) and blew off the rest of my symptoms as far as I'm concerned and started talking about calories out versus calories in.  DUH!  She also mentioned that I should document my food intake and make sure I'm really running 12-15 miles a week like I said I was (because a GPS watch that tracks my running couldn't possible be right).  She also suggested my body is changing as I'm in my 40's and that I could just be stressed because of my dad passing away.  I flat out told her I was raised by an alcoholic mother who on occasion beat me, I have never not known stress.  Yes, I miss my dad and am grieving, but we also knew he was dying (not to sound cold) and had our time together and chance to say our goodbyes...and this all started before that.  I take Aderral for ADD and it's a stimulant.  It helps with the brain fog, but if I don't take it, I am so exhausted I can barely get out of bed.  A medicine that helped me get more focused is now the only thing that makes me feel "normal" energy wise.  I told her I had a big issue with that.  She pretty much brushed it off.  I'm tired of my fingers getting cold and numb as soon as it gets chilly, tired of being tired, of not having any sex drive at all (sorry for the TMI)....

She ordered some blood work (CMP..no idea what that is, Cortisol in the morning, and ACTH...no idea what that is, LH and Estadiol).  When I asked her about testing my free T3 and free T4 she said there was no need to because my TSH looked fine and she really isn't concerned about my thyroid.

I almost walked out in tears.  I don't feel like myself.  I'm not even sure if I want to bother with the blood work and go back to see her.  Am I being unreasonable?
44 Responses
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1202943 tn?1347840652
Please!!  Get a new endo.  My TSH is below range and I still feel hypo.  FT3 & FT4 are so important. Low Free T3 can cause many hypo symptoms, but the TSH will be within range.  You know your body best and you know something isn't right.  I would call around to offices and ask if the dr will prescribe T3 medicines like(armour/cytomel) and if they test FT3 & FT4. It's so frustrating trying to find a good dr.  Mine is better than most, but still doesn't get how important FT3 testing is.  I'm still on the hunt for a dr who really gets it and will listen to me!           Good Luck!                                                                                                                                                                                                                                                                  
Helpful - 0
Avatar universal
But how does one find a doctor who will prescribe when the blood work is all "normal"?  She said she wasn't going to bother testing T3 and T4 because the TSH was fine in her opinion.  Does blood cortisol testing or ACTH or LH test for more than the TSH?  I need to research those.
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678817 tn?1327624650
I hear you on this one.  So much of Hashimoto's makes sense of my symptoms, and yet not only will my doctor not order the antibodies testing , I had to BEG to get her to authorize just the TSH today even though it hasn't been tested in over a year.  Nothing but TSH.  And she will not refer me to an endo either.  The endos in my area require a referral, so I feel like I am being held hostage.  My doctor poo-poos my list of symptoms which I thought would be viewed as conderate to have compiled ahead of time; instead leaves me in the lobby for 25 minutes and then marches in announcing that she doesn't have time to address multiple issues.  How do doctors expect to maintain any kind of doctor/patient relationship when they are so derisive and dismissive?  There aren't a lot of doctors here taking new patients, but I am going to do my damdest to find a new doc who doesn't treat me with such contempt.  Quick to pull out the prescription pad to prescribe Zoloft of course but refusing to dig deeper to find what might be causing the anxiety.  I lost my mom, my dad, an aunt, and a niece all in one year, so of course I understand that there is grief to deal with and anxiety to overcome when trying to settle the estate, but why are doctors so quick to ascribe everything to being a head case, and why is it so offensive to them that we want to do research to figure out why we feel so crappy?  You are not crazy, and neither am I.  We just want to go back to some semblance of our old selves, and it is a shame that the very people that are supposed to be helping us become the enemy when we have the "nerve" to try to help ourselves.  I am very sorry for your loss, and I hope you will find some cooperation from a doctor soon!
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Avatar universal
What part of Oregon is home for you?
Helpful - 0
678817 tn?1327624650
Salem
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Avatar universal
Hi, your case is a little similar to mine. You know somethings wrong, they do tests they consider relevant, and despite things becoming worse, refuse to do further or repeat testing. I have hypoparathyroidism and took a long time to be diagnosed for this but also have other undiagnosed problems and because they arent obvious, the drs have no interest. Some bloodwork has come back slightly out of range but am told 'nothing remarkable'. Glands in my neck, under my chin are all very enlarged which the ent has said he suspects is because i have had epstein barr but the reading said 'IgG, not in the immediate past' doesnt explain why they are painful and seemingly getting larger. Its been possibly 4 months now since they starting causing upper body ache and i have a gland in my groin about the size of a pea and under my arms ache which i suspect is gland i cant feel. Despite being labelled a hyperchondriac because of repeated visits with hypo pth symptoms (they dont believe it if they cant see it and as its an invisible illness they arent bothered) and finally being proven right, that there was something wrong, i still stuggle to get them to listen to me when i present other problems....and what irritates me so much is my glands are obvious to be felt easily, have shown on a scan as large and still  im not being taken seriously and they are causing so much bother! Id feel super if they werent so achey all the time!
All the best everyone xx
Helpful - 0
Avatar universal
OMG!!!!!! I hated it the day my Doctor said "youre getting older". The only difference in your statement and me is I dont run or train for marathons, but I go to the gym 5x a week. Im talking excessive workouts, weights, cardio, kick boxing, yoga and pilates. Watch my calorie intake, still weight gain. One day I went in with a list and didnt let the Doctor up until I was finished, I told him I knew my body better than anyone and something was wrong. Finally, I convienced him to send me to an Endo. I was lucky, the first one was a charm. She was great, then I moved to Oklahoma and its starting all over. Im am so sick of Doctors going by the book (so to say) instead of the patients symptoms. Ive been lucky, the Doctor I found is now treating me by my symptoms, not the issue is to find an Endo. Ive already fired the last one. She too didnt want to go by anything but the TSH. I asked her how to they come up with the "range". She state, " they take 1000 individuals in my area, test them and set the ranges''.  She said that was why the figures were different from my lab work done in California. I was pissed (excuse my language). I told her that  I couldnt believe she was diagnosing me based on others. That she didnt see me as an idividual with my own symptoms and maybe, just maybe, my feel good range was different then those 1000 individual. She says, "I will not increase youre meds because of your TSH levels, why dont you call your Endo in California and see if she'll do it". Again, Im pissed.  I said, "Youre fired, give me my medical records, now''.  She was stuned. Needless to say, I got my records and walked out. Endos like that are the reason we are still undiagnosed. Anyways, I suggest you keep looking, you will find one. Dont put up with it, you dont need  additional stress. And I hate when you tell them youre depressed the immediately prescribe an antidepressant, I refused.
Helpful - 0
1841872 tn?1324666089
I saw a special Endo  in Sacramento. We really bumped heads and when I asked if he really had helped any people with Thyroid problems, he replied
"There are a lot worst off people then you!"
Needless to say that was the last time I saw him! Back to my GP who listened and give me the tests I wanted....that Dr. is young and female...not sure if that has anything to do with it...but do not give in to Doctors that will not let you have a say and tests, etc with your own health issues!!! That goes for any Dis-ease.....TS,ADD, or Cancer.
Mia
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Avatar universal
This same story is repeated over, and over, and over again, and again.

How long is the medical industry going to keep this up.  It is pure out and out negligence.  There is AMPLE scientific study's concluding that TSH is crap and that the ranges are NOT reflective of proper metabolic levels.

It means nothing if most people fall into some arbitrary range when the vast majority of them are all medically sick.

If you looked at people and made a reference range of people's legs. And only threw out people who ONLY had one leg. Does that mean that the other 95% of the population had "normal" legs?  So that if you had broken legs where your bones were sticking out of your leg the Dr. would look at you and tell you that you must be crazy. You have two legs and that falls into the "normal" range.  It must be all in your head!

That is an analogy of what is happening in the Thyroid world.  PURE negligence in this day and age!

It is an outrage and should NOT be tolerated.  yet this has been going on for year, decades even.  It is total madness!
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649848 tn?1534633700
COMMUNITY LEADER
You are right, this is an outrage and something needs to be done, but as long as the medical community has the attitude they have, nothing is going to change..  All we can do is keep trying different doctors until we find one who is receptive to the way things are - they seem to be few and far between.

If you have an idea on how to change the medical community's way of thinking, please send me a PM, so we can get working on it.....
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1202943 tn?1347840652
The more I learn,  the more outraged I get.  I can't believe doctors are so arrogant that they keep their patients sick.  It's just make's me crazy!
We need to get a petition going or write Dr Oz!  
Helpful - 0
Avatar universal
I think patients need to start suing Dr's for malpractice.

It is the lawyers they are afraid of that keep them to sticking to the lab numbers and not clinical results.  So if patients can sue Dr's for loss of productivity etc because they totally messed them up by them being Immaculate TSH believers, or reference range endocrinology believers. Maybe when word gets out they will start to take notice of all the things that we "laymen" know here.

If we on this site can figure this stuff out, why the hell can't they?

All it would take is changing the reference ranges low end upward to what is now the middle of the range for FT4 and the upper 1/3 of the range for FT3.  Or somewhere much closer than where they are now.  Once this is done it would be DRAMATIC the changes that would flow from those 2 simple changes.

Barb you are right.  All of us complaining about this here does absolutely no good.  So there has to be some sort of board or agency or something that we can petition etc with research some folks have collected or bookmarked etc and try to get something done.

This is ridiculous.
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Avatar universal
Hello--just read your post and it INFURIATES ME! Why do so many doctors not listen to their patients? This doc of yours needs to be cut loose, as in FIRED. There are doctors who do listen but they are hard to find at times. Here is a website; go to Mary Shoman's website and type in Top Thyroid Doctors Directory; then you pick your state. There are times when it is not updated; such as a doctor  retires or moves, but this will help to get you started in locating one. Also go to the web and go to Naturopathic MD"s and Doctors, this will give you links to more holistic, alternative/complementary physicians...it will give you their directory of names. Oregon has a huge ND school and you will be able to find a great one out there, I should think. (I think I saw it mentioned you were in Oregon?) If not, where? I've been where you are..long ago. I finally found an endo who actually listened to me, and did other tests besides the "almighty" tsh. After gaining 50 pds in one year, yes, one year, and my barely being able to get out of bed, feeling  depressed, dry skin, hair, nails, joint issues, etc...I got on thyroid meds and began to feel normal again. It has been 20 years and although I've lost half of that weight it can be a struggle at times. These doctors take the Hippocratic Oath to "do no harm" but, many do by being neglectful and ignoring the complaints, signs and symptoms we have. I could go on..... Please look for a doctor who is Holistic, either an MD or an ND; mine now is both! I do have hope becaue there are many finally getting it and understand there is so much more to the thyroid than what they were taught in medical school.  Oh..here is another site and it is good. www.stopthethyroidmadness   Good Luck. Let us know if you have success.
Helpful - 0
Avatar universal
PS..you will have to find a doctor on your own and pay cash; this way even though it is expensive you have the control and the ins. company or your doctor does not. You can order the tests that you want. LabCorp also has tests you can order online, did you know? You order for it and pay for it and then go anytime with your printout. By the way- many offices will give discounts today if you say you are paying cash, instead. Many offices here in NC take 40% off the bill! Also, some doctors who are Family practice-physicians are also integrative and can do all the extra things because they don't fall under the category of "holistic." You sometimes have to dig deep for these kind--ask questions first before you even go. They usually don't advertise they are integrative, this way they can "get away with it." DO's are good for this, too. Look at their website as well. Once the insurance companies see you want to go to these alternative docs, they get crazed!..OMGosh...it's like, "Oh no! Let's not pay for a doctor who will uncover problems, getting to the root of it all with a more naturalistic, integrative approach."  Instead they have the attitude, "Heck! this gal has insurance..let's take her thyroid out, burn it, cut it, operate, give her drugs she doesn't need..." etc It is insane the insurance companies will pay for a conventional doctor to run unnecessary tests or not enough, prescribe drugs that cause more harm than the problem itself or suggest surgery to correct something that may be easy with other forms of therapy. As you can probably tell, I have been there so many times...even after I found the one years ago to help me because we moved.  GRRRRrrrrrrrrrrrrrrrrrrrr
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Avatar universal
I totally agree with everything said here!!!

I finally took the leap & decided I needed an endo so my PCP gave me the referral, however, I researched one I wanted the referral too. My PCP is great (had him for 18yrs) & basically treats me like I know my body well enough to know when something is wrong with it. He knows I am not the norm when it comes too medical issues & is always apologizing for not being able to figure it out, but well send me to a specialist if it is out of his realm.

I was treated for depression for 6 months before I hit a thyroid storm

When I got the referral to this new Endo I wrote her a letter explaining my symptoms & if she could help me fine, if not please do not waste my time or yours and cancel the upcoming appt...I flat out told her in the letter I do not have diabetes and I know most Endos only really care about diabetes & give thyroid issues a "your blood work is fine" see you in 1 yr. She actually called me and said please keep the appt. you should have been monitored by an Endo due to having the RAI & TT. I know the RAI caused some of my symptoms & issues. Thyroid eye disease, salivary gland issues. Had to have one completely removed.

I did see her back in Dec. she switched my dosage & brand name for now. I go back in Feb for blood work to make sure I do not have parathyroid issues, she doubts I do, but I had low Vit D & my calcium levels were only 10.2-10.4. However I recommended she test me & she actually said it could not hurt any to make sure.

I have always had my PCP regulate my dosage & TSH level, but this last time the TSH was 13.8 & he did not feel comfortable messing with the dosage due to not being able to figure out why all of a sudden I became fatiuged & weight dropping. I had been on 125 mcg for the last 5yrs, prior to that I was at 200mcg for 10yrs. Now I am at 175mcg.

Maybe it was a different filler used the batch I got, not sure.
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Avatar universal
When you go back in Feb. for blood tests, please make sure they test beyond TSH.  I strongly suggest that you should request to be tested for Free T3 and Free T4 also.  Thyroid patients taking large doses of T4 meds frequently find that their body is not adequately converting the T4 to T3.  This results in a Free T3 level that is too low in the range and associated hypo symptoms.  If the doctor resists testing for FT3 and FT4, then you should make a stand and insist on it.  Free T3 level is too important to assume it is okay.

If you have any doubts about this, I'll be glad to give you links to scientific studies  showing that TSH, or TSH plus Free T4, are not adequate for testing a thyroid patient.
Helpful - 0
Avatar universal
I went back on Jan 4 to retest on the 150mcg dosage & my TSH was .36 & my Free T4 was 1.44 (do not know the references), this lab work was done by another PCP who had it scheduled back in Oct when my TSH was 13.8 he upped the dosage to 150mcg until I got in to see the endo. I had only been on the 175mcg 4 weeks prior to having the lab done, so I don't know if the 175mcg has taken full effect or not.

I go back on Feb 16 for lab & will ask what they are testing for. I think they will only be testing for parathyroid issues. My endo can see all the lab work done because they are using the global network so she knows what my levels were back on Jan. 4, but told me to stay on 175mcg of Synthroid.

I do know the fatigue has lifted, but still don't feel right, but it could all be due to maybe being peri menapause? I know my thigh muscle aches have NOT changed any....I was hoping they would, but so far no...
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Avatar universal
Looks like your Free T4 is near the top of its range, which is to be expected when taking a large dose of T4 meds.  Even that dose is not relieving all your hypo symptoms.  Again, I urge you to do whatever necessary, including an all out demand to be tested for Free T3.  You should not accept anything less.  You need to be your own best and strongest advocate for getting the testing and treatment you need.  You cannot depend on the Endo to make all the right decisions.  You need to help/push him to do the tests.  

I would also suggest that, if not already done recently,  you request to be tested for Vitamin D, B12, and a full test panel for iron anemia.
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Avatar universal
I am already on a 12 week regime of Vit D for 500000 IU once a week & also take my daily OTC of Vit D 2000 IU.

This is the 3rd time I have had to do a 12 week regime, I am lactose intolerant so that could be the issue, but have consistantly taken the OTC Vit D daily & still low Vit D levels.

As for B12, I had to do the shots for a bit, but then started the OTC 2000mcg daily, I have been taking that for the last 3 yrs.

If there was anything that I wish would go away that would be the thigh muscle aches, everything else I can tolerate....
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168348 tn?1379357075
Trust your instincts ...... that's my motto.

C~
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Avatar universal
There are some T4 meds that have some lactose in them.  What brand are you taking?
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678817 tn?1327624650
This may be kind of lame, but seeing on this forum that I am certainly not the only one feeling this kind of frustration, gathering from my own doctor's scoffing at the mention of forums that a lot of doctors don't take them seriously, I thought maybe there would be worth in trying out social networking.  Maybe we catch their attention this way; maybe not.  But at least it is a place to let our voices be heard, to know that *someone* is listening.

https://www.***.com/pages/Why-Wont-My-Doctor-Listen/269089646492349
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Avatar universal
That link is evidently not allowed to be posted on the Forum.  I'd like to have a look.  Is there some other way you can get us to the right place?
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649848 tn?1534633700
COMMUNITY LEADER
I'd like to have a look, also, if you can figure out how to get us there.
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649848 tn?1534633700
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