Well folks, I have posted on other threads but here it is again. My hx is left thyroid lobectomy, Aug 2006 for benign nodule. Afterwards was told my thyroid levels were in "normal range "so nothing farther done. Started having papatations, acid reflux. Found H pylori and treated me for many months.Finally was gone but still had/ developed chest pain, tremors, anxiety ect... was told is was malabsorption syndrome which they are still trying to find where and why. Chest pain got worse and was diagnosed with atrial arrythmia, tried to do heart ablation and failed because cardio said it was due to something other than physical problem. Now on verapamil, but still have some pain and SVT issues. My question- tomorrow I go to endo and want him to pursue this hyperthyroid issue because GI Dr. has done every possible test ( including crohn's, celiac) to disprove malabsorptin theory. My symptoms are -
large weight loss of 40+ lbs in 16 months and still losing. Muscle spasms, weakness, tremors, heat/cold intolerance, severe fatiuge, anxiety, depression ( who wouldn't after 16 months with no answer), still have chest pain, atrial arrythmia ( which Dr. doesn't know why ) , palpatations, nausea at times,mental fog at times. What should I ask for to be tested, the regular TSH was done and I was told it was in normal range. ?? thryoid uptake, ultrasound to be sure no more nodules, ?? please help me finally find the answer. Thank you all for your support.
You should also ask for a FT4 and FT3. If either of those are on the high side of normal a raiu scan might be in order. I'm one of the rare hypers who has a normal tsh and sometimes my thyroid hormones are in normal range but almost always at least borderline high. I was finally firmly diagnosed hyper based on a raiu scan and they have caught my high hormones since then on labs. The uptake came back high and really hot on scan. Ultrasound shows a perfectly normal thyroid and normal fine needle aspiration but there are times that I'm hyper as a bed bug. Keep at it.
They should also do a 24 hour urine for metanephrines cause pheochromycytoma can cause the exact same symptoms.
Thanks for the reply. The endo did a TSH and it was 1.4. I asked for T3,T4 and he said is was "unnecessary". He did order a 24 hour urine to check , for ???, was to mad at him to ask because of his attitude. I will see how this goes and then talk to my family doc ( great guy) and see what he thinks. And later change endo drs., but right now it is a long time to get into see a new one and don't want to wait months for answers. He is also checking me for addison disease ( judging from tests he ordered).
I'm over 90% sure the urine is for metanephrines. I was tested for it during the workup. It is an important test when dealing with labs and symptoms like yours and addison's should be ruled out too. The thyroid isn't the only thing that can cause the symptoms you're having and your endo is following a proper protocol on that. If those do come back negative, then it would be worth getting the ft3 and ft4 by any means you can get it. Either your gp if he's a sweety or order your own set online.
I hope you don't have to wait months either. I had to wait a long time for a diagnosis but now I'm doing a lot better.
Did your doc do a stool test to prove malabsorption? I was just told by my GI doc that I am having malabsorption of iron due to taking Nexium for 8 years. They are thinking about doing this test on me. Good luck to you. FLFLOWERGIRL
Thanks all. My GI did a stool for malabsorption as well as many other tests ( I getting so lost). All were normal. He did say it was possibly caused by PPI's which I went off in Jan. All tests were done AFTER I was off for two months ( my old GI did not think huge weightl loss, diarrhea was a GI issue ). He is also testing me for bacterial overgrowth, parasites, did CT, stomach emptying test... says he is then finished. Will refer me to Mayo Clinic or somewhere else. I am nervously waiting for the endo tests results, go back in two weeks. I saw endo dr. did order T4, maybe because I asked but he said iT3. T4 was "unnecessary". I did have 1/2 thyroid out in 2006 for benign nodule, and within 3 months all these problems started... but they keep saying it is not my thyroid and am in "normal" range. Incidentally my cardiologist ( I developed an arrythmia (SVT) thru all this from unknown reason- had failed ablation- no physical problem-cardio thinks malabsorption issue- magnesium level drops) anyway, Cardio said he had exact same issue with another pt and eventually after many rechecks thryoid issues were found on other pt and he is now doing well... but again endo dismissed idea....I really don't want to go to Mayo or anywhere else... just want answers... and what if they never find one?????
Thanks for the idea... I have had LOTS of blood work done. What tests are done to check for parathryoid? I had PTH done several times... twice it is was low - 9, when normal range is 12-65. My primary care sent me to endo first time and endo repeated it and it was normal so he said don't worry. Just last month is was low again ( found by getting copy of labs). I was told all results were normal. I go back in a week and will ?? him about this results. He is not an easy to ? and talk to type Dr. I should probably look for a new endo but he has a fabulous reputation and it takes months to get into new office. Thanks for any ideas... deperately want a diagnosis thus a plan to get my life back.
That's interesting. I have a thyroid that likes to do that too. Wait months to get in to see an endo with a marvelous rep in an absolutely beautiful office complex and suddenly, that day, labs come back "normal". I've seen 5 supposedly marvelous endos. The one thing they seemed to lack was common sense and the ability to listen. I'm being treated now by a gp who's very smart, has a lot of common sense and is a great listener.
There's a couple people on this board with parathyroid problems post surgically. I've never had issues with it. I'd suggest either searching for one of those threads or posting a new one cause it isn't normal for PTH levels to be low. Something has to cause that.
TPOAb and TGAb for Hashimoto's
TSI and TRAb for Graves
It is possible to have both and look so normal in your lab work it is scary. PTH is the parathyroid test and low PTH should be treated not just watched. Hopefully they are keep an eye on your Ca and K levels as well. It is possible you are looking at autoimmune endocrine system attack going on. The antibody blood work may show you. An Endo that just looks at a TSH is not really worth your time or money. You need a different one.. or an IM or an ENT.. there are many options out there.
If we learn by our mistakes, I am working on one hell of an education.