I have been treated off & on for Hypothyroidism since I was 19. I had an old small town doctor who hated thyroid tests so he started with a low dose & increased til most of my symptoms were gone (6 grains or 360 mg). He retired...nightmare started. No other doctor will prescribe the amount of thyroid I was used to taking and was healthy at that dosage. I have every classic symptom of low thyroid there is...dry skin/hair, constipation, fatigue, muscle cramps/weakness, trouble sleeping, lack of concentration, cold hands/feet, weight gain (extremely difficult to lose weight), to becoming almost totally reclusive if not on meds, you name it to the point endo even said he had never seen "thyroid nails" like mine on any other patient only in textbook (they grow very crooked & are extremely thin). All my TSH, T4, T3 levels are where they should be even without meds but when they did the iodine cat scan it showed very, very low & slow uptake of thyroid. Current endo is prescribing 2 grains or 120 mg but will not increase inspite of symptoms still being present. They are a little better but not enough to live a comfortable life. Has anyone else had the slow uptake issue and if so, was it treated successfully? I am considering going to a rheumatologist but not sure if that is the best option either.
I don't have my specific test results at this moment. I will have to add them later hopefully in next couple of days. The slow uptake was determined by doing a Radioactive Iodine Uptake (RAI-U) I believe is what it is called. They did a cat scan, gave me radioactive iodine, waited a short period of time and did another cat scan.
You are no the only one confused here. LOL I don't understand the relevance of that test. So it showed low and slow uptake of iodine by the thyroid glands, right? So what? That just provides some explanation of why your thyroid levels might show up to be low in the first place. To offset that kind of problem apparently the doctor was prescribing ever increasing doses of Armour, I suppose, up to an amount that probably would scare most doctors, as you know.
The big question for me is why did it take so much medication? Did your Free T3 get into the upper part of its range, but that still did not relieve symptoms? Or was it that you did not absorb the meds very well and your Free T3 level never got that high? If it is an absorption problem, then dosage is irrelevant. You just need to get the dos high enough to relieve symptoms.
If your Free T3 level got to the top part of its range, but you still had hypo symptoms, then the next thing I would want to have checked is reverse T3. Under some conditions the body can convert T4 into excessive amounts of reverse T3. RT3 is the mirror image molecule of Free T3, but is biologically inactive, and counteracts your Free T3, resulting in hypo symptoms. To evaluate this possibility you need to have a reverse T3 and a free T3 tests, along with the Free T4 and TSH. Then you can calculate the ratio of FT3 to rT3 and see if it is within the recommended range or not.
If that doesn't turn up anything then the only other possibility that comes to mind is something called Thyroid Hormone Resistance. This occurs infrequently and causes the patient to have to use much higher dosages of meds than otherwise. I have no experience with this and have only read a little about it. Will have to do some more reading and searching. More later.
Thank you so much for the suggestion on the RT3. I went in yesterday and there was a doctor covering for my md. I explained to him everything I have been through as well as showed him the very thin funky thyroid nails I have. He kept shaking his head telling me he was looking at my blood test results and my thyroid shows to be in normal range yet looking at my skin, nails, hair, as well as listening to everything I am dealing with, I am classic hypothyroid. When I asked for the RT3 he stated that was an excellent idea and wished he had thought of it. The other thing he was amazed at is through all of the testing I have had, no one ever tested my adrenal system. He has ordered a complete thyroid panel including the RT3, T3, T4, TSH and an adrenal work up.
The test results say TSH, 3rd generation
w/Reflex to FT4 1.65
Reference Range >or=20 years 0.40-4.50
ok, my TSH has came back low which means hyperthyroid for over a year now. T3 and T4 always normal. Had a thyroid with uptake done last week. It took a lot longer than usual so the tech said because thyroid was slow to uptake. She said this meant hypothyroid now I am so confused. I have been so tired for years, very sensitive to cold, leg and feet pain and never feel rested. I really don't think my doctor cares. Said he has to wait until he gets written report to treat with med. Symptoms have been worse the past 2 years. I really don't know what to do. I got sick about 2 weeks ago, this test was already ordered, but when I was ill with rash, and neck pain they did a ESR and said my sed rates were extremely elevated and because I have been going to him for 28 years when he looks back I may be dealing with a more chronic condition such as Lupus and that is all he said. Now I sit with these two things hanging over me with no treatment yet. I would probably not treat Lupus because side effects of med is too risky for me personally. However, Thyroid medication would be nice. I would love to have some energy and feel a little better. I am at the point anything is better than this. He says well we are getting older, well I know this but I have been exhausted for years, my memory is getting worse especially past 2 years. I need and want help but don't know what to do.
Just because TSH is low, doesn't mean you're hyper.
As gimel pointed out in his post above, the uptake scan does nothing but confirm that you're slow to absorb the iodine.
Your symptoms are, certainly, those of hypo... have there been any other thyroid blood tests done? Your doctor should have should be, routinely, running Free T3 and Free T4, along with TSH... Please post actual results and be sure to include reference ranges, as those vary lab to lab and have to come from your own report. He should also have tested you for thyroid antibodies, which are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAB) to determine whether or not you have Hashimoto's Thyroiditis. All of the tests I've mentioned here would have been much more telling than the uptake scan... If you don't a copy of your labs, you should get one. Your doctor is obligated, by law, to provide you a copy upon request.
I'd hate to see you being treated for Lupus, when all you probably need is thyroid replacement hormones. My daughter had/has very similar symptoms as you do; first she was diagnosed with fibromyalgia, then they said no, it's Rheumatoid Arthritis, instead, then they changed it to Lupus... She has all the symptoms of hypothyroidism; I had the same ones when I was hypo, too... She's gained an astronomical amount of weight and the Lupus med doesn't control her symptoms. In my opinion, she could certainly benefit from thyroid replacement med, but she won't bring me a lab report so I can see what her levels are.
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