This really bugs me so I thought I'd start a thread on it. My odyssey to discover my hypothyroidism has not been pretty. And after hanging around here for a while I know I'm not alone.
I've been foisted off from doctor to doctor, specialist to specialist for so long that I can hardly remember them all. I've seen GYNs, neurologists, rheumatologists, internal med docs, family docs, gastro docs, eye docs, heart docs, naturopath docs, infectious disease docs. I’ve had numerous MRIs, CTs, X-Rays, three surgeries for gynecological issues and uncountable numbers of blood tests. And nobody knew what to look for. If it weren't for Mary S h o m o n planting a seed in my head that the TSH is not a reliable test for hypo and then finally stumbling on this and a few other forums I'd still be sick as a dog and treating all my various ailments symptomatically.
This just infuriates me
Why on earth don't doctors GET it? I have several friends and family members who are exhibiting hypo symptoms and when I ask them about their labs they all tell me they are "normal". When I ask what labs were run they say, "TSH". I see new post after new post here, all with the same dismal story: People not getting tested, people not getting the right tests, people being told their low-range results are normal on the free Ts. People being refused the antibody tests. People not being raised to a therapeutic level with their hormones because the doc is watching the TSH instead of the patient.
I feel for every one of you. I have been there, been sick and then sicker. I even was referred to an endocrinologist about 15 years ago and he was incredibly rude to me, asked me snidely why I was in his office taking up his time with my "normal" labs. Told me to take antidepressants instead.
I guess that's why I want to help as much as I can. I'm still feeling my way but I remember how I hung on this forum waiting for an ANSWER. I remember how relieved I was to find there were others who were exactly where I was at and who were getting BETTER. And now I’m getting better too. I’ve spent the past several months doing nothing but reading, researching, posting and learning (so there is an upside to not having a job! ). What I’ve found out is incredible. Almost all of mainstream medicine is poorly informed and poorly equipped to diagnose and treat what is turning into an epidemic in this country: thyroid disease. When I think of the hundreds of thousands of dollars that my insurance paid out over the years (not to mention the tens of thousands that came out of our own pockets) when all I needed were four blood tests I am sickened. Yes we have high health care costs in this country but in my case it was driven by uninformed and clueless doctors. Doctors who didn’t even know the basics of how to diagnose hypothyroidism.
So now I question everything and everyone. I have a great new doc now but I still question and suggest things that I think will help me with my treatment. He’s a great doc because he isn’t offended when I ask questions or make suggestions. He’s got a tiny ego, which is very rare in an MD. But I’ve learned to never trust a doctor implicitly. They are human just like me and make mistakes or didn’t pay attention at some vital moment during medical school. They listen to drug reps too much and have too many patients crammed into too little time. I’ve learned this the hard way and now I know.
I’d love to hear your comments on doctor experiences and whether or not you feel you can trust your doctor and why. Thanks!
I feel somewhat fortunate at this point. I was diagnosed with goitre when I was around ten or eleven and took liquid iodine drop for it (kicking and screaming) for a number of years. My folks took me off of that when I was about fifteen at a doctor's recommendation. I don't know what that was about but I was thrilled about it. I didn't care if they were helping me or not at that age. I didn't feel bad and they tasted nasty.
I never paid attention to the condition myself. I had doctors go for my throat during routine exams, but it was a couple of years ago during an annual physical that my GP discovered modules that have been "watched" the last couple of years,
At my physical in December my doc had me do an ultra- sound and an fna-he also found elevated calcium and ref'd me to an endo on parathyroid abnormality suspicion. The fna was "inconclusive" so my GP wanted a bioposy which the surgeon who had been "watching" it resisted, but since the endo wanted the parathyroid removed based on results he opted to take that portion of thyroid out since they were on the same side.
Gp had also run the anit-body test and I tested positive for Hashi which I didn't know what it was at the time. He started me on 50mcg of levothyroxine prior to surgery at the end of June.
I had quit smoking with that same doctors help in December at the time of that physical, and ironically I've been taking a very good multi-vitamin f0r years. I say ironically because I was a long-time smoker who is otherwise health consious.
I wasn't suffering the way others here have, whose stories are breaking my heart. I didn't seek medical help because I was suffering-just taking advantage of annual physicals that my thorough Dr. found abnormalities and acted on them before I did suffer. After reading the other stories here, I see how fortunate I've been as I had such ignorance of my own disease that I know so much more about now thanks to all of you. I will know what to ask in the future if more symptoms surface-but I have to be relieved that I had good care before it got to the point that some here have. This board and the peple here provide a very great service.
I just went to a new doc today hoping for better treatment. He's a regular GP, but I've seen 3 endo's in the last several years who got me where I am today...in horrible shape. I thought this new GP was great, talking about testing me for iron and B12, retesting my antibodies, testing for parathyroid, asking all kinds of questions about how I sleep, etc....then he mentioned the thyroid tests. I asked if he tested for FT4 and FT3, and he said not normally because he thinks the TSH is the most important test. BAM!! There went my confidence. So I told him the story of how my last endo kept lowering my dose in order to increase the TSH, and in that process, the FT's got lower and I felt worse and worse. He knows I've had my dose increased 3 times and I'm still not feeling well, so I'm praying he doesn't think he needs to lower my dose and that he looks at more than the TSH, which is already at .134. I'm showing no signs of being hyper, never have. He thinks I'm anemic because my blood pressure dropped a lot when I stood up and my nails are pale, but he obviously doesn't get that a low thyroid can cause low iron. I'll post an update when I get the labs back.
I have been where you all were/are. It is too common, but as long as MDs cling to the NORMAL range and statistical averages we are going to have to fight for the care that we deserve. BUT personally I think we are all worth the fight.
As to the TSH huggers. Here are some question you can ask your MDs if they say NO you have them over a barrel and they can not refuse to request the FT blood work. The answer to these questions are NO.
1) Can be hyperT OR hyperT if your FTs are less than 50 % of normal in range? No, but you can have secondary hypothyroidism due to pituitary dysfunction (i.e. low TSH output despite body need)
2) Does the TSH ALWAYS represent the state of your ACTUAL thyroid hormone levels? No. If there is antibody interference, pituitary, adrenal, hypothalamus interference then theTSH will not represent your thyroid hormone levels.
3) Is the TSH produced by my thyroid? No, it is the feedback out put of the pituitary as a response to the call of the hypothalamus which measures if your body has enough T3 and T4 to function optimally.
4) If there is something wrong with my Pituitary/Hypothalamus/Thyroid communication loop, can I trust my TSH readings? No. If your HPT loop is faulty you have to measure the output from the actual glands to determine their functionality.
5) Does having Normal TSH mean you are not suffering from subclinical hypothyroidism? No you can have a normal TSH and still not be producing enough T4/T3 to meet your body's demands.
6) Does everyone have the same NORMAL TSH? No every individual is different and depending on the time of day and their body chemistry they will have a different TSH value. What is optimal for them is the TSH/FT4/FT3 levels at which they have NO hypo or hyper thyroid symptoms.
The only way you can tell for sure beyond a reasonable doubt is if you follow your FTs in addition to the TSH. I have adrenal dysfunction and both Graves and Hashimoto's antibodies, to top it off genetically my family line does not have TSH readings greater then THREE with or with out thyroids. It is a function of OUR pituitary glands.. but all in all the MD can not say that the TSH is 100% definitive for determining hypothyroidism or hyperthyroidism. it is an indirect measurement of thyroid function and subject to error. If your MD answers these questions correctly then they shouldn't have a problem with treating you optimally and properly. Now finding that MD is harder the finding a needle in a haystack.
Now the baby demands I eat something.. good luck to you all and do not give up!
If we learn by our mistakes, I am working on one hell of an education.
Thanks for those questions. I do think I have a pituitary issue even though nothing showed up in the MRI. I've had very low estrogen levels my entire life. So I'll bring that up if this new doc insists on only treating by the TSH.
He did mention most of his patients seem to feel better on Armour than Synthroid, so maybe if he mentions it again, I'll take him up on it.
i first found out about my thyroid problem in dec.08-from my gyno.just a routine before surgery thing. no other dr. ever found anything including my regular dr. i was then sent to an endo who immediately told me that i was OVER-REACTING.how about that.couple of months later that same dr. takes me off meds and tells me that the thyroid has to come out. meds not helping nodule getting bigger-take it out.ok .why did he not tell me about the cold nodule and just how big it was.my surgeon told me all that. if i could have thought straight to ask myself i would have.oh yeah,how about the fact that you may have cancer...didn't tell me that either,surgeon did.trust that man w/ my life. i now have to go back to that endo because thats who my insurance company will pay for,only one on the "list". great.no thyroid and im sure i will be over-reacting to it all from now on.
just as a side--- my cancer was not thyroid but after a second opin. it is paraganglioma. it just took up living in my thyroid.i will try not to talk about that too much on here but i will about life w/out my thyroid .stupid doctors.
I am faxing my new MD my labs showing the progression of what happened to my TSH, FT4 and FT3 over a period of 6 months as my endo kept lowering my dose to increase the TSH. By the end, when my TSH was at 1, my FT3 and FT4 were at the very low end of the range and I felt horrible. Hopefully this will convince my new MD that TSH is not the most important thing to look at.
I will agree with the title of this thread. My last (and current, I guess) MD came highly recommended to me. When I saw him I was thrilled....the first MD who understood the whole thyroid thing, knew what labs to order, and even admitted that the medical community doesn't understand it all in depth because so much remains unknown. I thought I hit the jackpot BUT....(sigh) he is a lab guy. If it all fills within normal limits, then it is all good. I pointed out my history that when my TSH rose and was high, my FT3 and FT4 were also high. As TSH declined to the 1 range, the Ft3 and FT4 also went down and I did not feel well. He acknowledged there was probably some element of thyroid hormone resistance and that was that....no suggestions, nothing. So, what do you do?
I had a huge multinodular goiter with 4 dominant nodules and completely normal labs and antibodies After years of complaining about how I felt my goiter suddenly surfaced and then finally someone took notice. Suddenly it was not really in my head ( it was in my neck )
I do not put much into labs....you can be a mild diabetic for 5 years before a fasting blood sugar is abnormal.... Doctors do not look far enough or deep enough.
It took me 7 Doctors to finally hit the jackpot on a good Endo...He dug deep and treated me for Hashi's, found several other problems. Unfortunately he has left the Country and moved back to his home. I will miss him and never forget how much he helped me. My family Doctor will take over on refills of Meds and testing.. he will follow the testing he did......
You have to wade through alot of nuts to find the berries........Oleander
Count me in. Took 9 years to finally get meds. I also started off with a GP who knew zero about thyroids, symptoms and testing and also only looked at lab ranges. I got excited when he referred me to an Endo, but unfortunately the Endo only looked at TSH and even though i had extremely high thyroid antibodies showing i had Hashimoto's, he disregarded this and gave me the okay saying nothing was wrong with me. Further testing over time only led to being told i was okay too.
Finally i did some research and took advice regarding testing on these boards. It was the first time i'd heard of certain tests, what they were and their importance. I then took my knowledge and decided to "go left to go right". I found myself a Trichologist (hair/scalp specialist) due to my massive hair shedding. I figured nobody else was helping me so why not deal with the hair shedding first. The Trichologist i went with was one who appeared to know all about thyroids etc. He found my low Vit D, helped elevate my ferritin and tought me the importance of ferritin and other vitamins/minerals. He also found my Hashi's and looked at targets rather than ranges and then forwarded me off to a doctor who he knew was not a TSH and lab "range" watcher.
It's important to find a good doctor due to thyroid issues setting so many other things within the body off balance. The entire bodily metabolic rate goes off the rails which then results in a host of other issues eg: hormone imbalance, digestive/malabsorption issues, blood pressure problems, weight gain, bad liver detox, monthly cycle issues, fibroids, PCOS, gluten intolerance, anemia/low iron, low Vitamin D and B12, adrenal insufficiency and who knows what else.
So if one doctor can't even figure out a full thyroid panel, how are they going to sort out all the other issues. Impossible!! I had to get a sick leave certificate for monday as i was just too unwell to go to work. I had to ask for a blood pressure test and my blood pressure had gone up very high. I then mentioned my thyroid issues to the GP and showed the lab slip for my up coming blood test, just incase she thought i was taking a sick day off work due to not wanting to go to work, and she looked at me blankly and said "gee, it all sounds so complicated". So i'd say most doctors find all this "complicated" and no wonder we're not getting the treatment we all vitally need.
the more i read about all of our problems the more i'm not sure who to turn to for help. my regular dr. openly admitted not knowing alot about thyroid problems and my total dislike and distrust of the only endo on my insurance leave me with very little choice.being new to these thyroid problems has me scared. i don't know half of what you guys talk about on here-t3,t4 levels,etc.......(those dots can go on forever,there is just so much) . i pay attention and try to follow but it will take a while. i just go w/ what the endo says but i know when something is off and i know when my meds stop working.this is not a good feeling for someone new-who do i turn to now?
I'm afraid that given the amount that doctors don't know about thyroid disease you are faced with learning all this stuff yourself or not getting the treatment you need. You also have to find a doc who is willing to work with you or actually knows what to do, but you won't know unless you are well informed yourself and can tell if he or she is following appriate measures.
I know this is a lot to learn but I really feel it's vital to be as knowledgable about your illness as is possible.
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The thing is, most Endo's and/other doctors who are treating thyroids do not have a full understanding, nor do they care, in regards to what encompasses thyroid health, what else goes off the rails when you have thyroid issues. They are quite happy chugging along doing TSH checks and maybe the odd T4 and/or T3 if you are lucky. Once they have you on your meds that's it, they look at nothing else.
Finding one who will at least check that your adrenals are functioning correctly is hard, but finding one who checks AND understand the function of Vitamin D and ferritin in relation to your adrenals and thyroid is nigh on impossible.
So i agree with mcaimless, we really need to do our own research, even if our doctors wont as too many thyroid issues are being swept under the carpet by doctors or money being made to pharmaceutical companies in the form of antidepressants!!
hello ...boy i can relate!!!..im still sick and tired and sore and the endo dr hasnt done anything but give me an appointment in 6 mths time to "keep a close eye on the nodules on my goiter...one is 3cm and 2 are cold on uptake scan and calcified..the rest are 2cm to very small but my hair is falling out and dry my neck is puffy and sore and i feel like im chocking when i lay down and im gaining weight and so on..but all im getting is ill see you in six mths...i had an fna done .inconclusive due to not enough tissue..but on this site i heard it should be repeated not to fool around with it ..ya i need a second opinion i need a dr but in my area there is no chioce..unless i drive 4 hours away...hmmmm yep im frusterated with drs..thanks for started this venting thread....i needed it...thanks...