I met with the other endocrinologist today and he agrees with the first diagnosis of mild hyperthyroidism because the tissue around the nodules looks healthy and the T4 and T3 and TSH are within range and the antibodies I had done showed negative. So, he recommended no meds and said people usually feel really good with my levels and see you in a year for an ultrasound. Unless I want to come in and have it drained or have half my thyroid removed, he also said your thyroid can grow back?
Thank you so much, I requested a referral to another endo, but they cannot see me until September. I appreciate you checking on Dr's for me!
TSI is Thyroid Stimulating Immunoglobulin that goolarra also referred to. It is another antibody test. It's the definitive test for Graves Disease. You can have it done, just to rule that out for sure, but since you aren't hyper, I'm not sure it would be a real benefit to you. There are a small amount of people who have, both, Hashimoto's and Graves Disease, with one or the other being dominant at a given time.
TPOab and TgAb are the tests to have to confirm/rule out Hashimoto's. If you're negative for both of those, it would be supposed that your hypothyroidism is caused by malfunction in the pituitary/hypothalamus axis.
I'm checking on doctors.
I've heard some refer to a TSI test? is that yet another antibody?
Thanks very much, I live in SW Missouri.
Yes, thus far, the opinion is hypo vs hyper... none of your labs indicated hyper, other than TSH and it's a pituitary hormone, not a thyroid hormone. It's a diagnostic tool, at best and should never be the basis for a diagnosis. Simply increasing TSH isn't likely to do much for your actual thyroid hormone levels.
As goolarra explained there are 2 antibody tests that are markers for Hashimoto's. Thyroid Peroxidase Antibodies (TPOab) is one of them. Thyroglobulin Antibodies (TgAb) is the other one. Some of us are diagnosed on the basis of one or the other, others have them both. You had the TPOab test, which is negative, but you could still have Hashimoto's, based on a TgAb test, which you haven't had.
It's quite common with Hashimoto's for one to have periods of hyper alternating with periods of hypo in the early stages. It's also possible to have a hot nodule that doesn't secrete enough thyroid hormones to make you hyper.
We have a list of patient recommended doctors, so if you'll tell us where you're located, we can check and see if we have one in your area.
Yes it was an uptake test with the radioactive pill and injection. once at 6 hours and one at 24 I think.
I buy them through lucky vitamin or amazon, it's not that much, I believe that holistic interventions can work and will chose not to debate that part of my treatment choice but as we knew going in, I may need pharm intervention. Just a matter of finding a Dr that cares to get it right.
So, thus far the opinion is hypO rather than hyper, but need to know if it's hashis or pituitary causing it? I thought Thyroid Peroxidase Antibody test did that, no?
Did you have a scan that includes radioactive iodine? It's my understanding that hot nodules can only be determined by the amount of isotope they pick up. A hot or hyper-functioning nodule would take up more of the radioactive iodine, whereas a cold or non-functioning nodule would take up little or no radioactive iodine. I don't believe hot or cold nodules can be determined simply from an ultrasound.
I totally agree with, both, gimel and goolarra - you've gotten the wrong diagnosis and I'd suggest that you find a different doctor as soon as possible.
It's necessary to get the correct diagnosis and in order to do that you have to have the proper tests, therefore, you will need the Thyroglobulin Antibodies test that goolarra suggested to rule out Hashimoto's. The other possibility is central hypothyroidism.
Can you tell us the ingredients in the "herbs and stuff" from the holistic guy? Chances are, they're costing you a lot of money and doing little good.
When I was diagnosed my labs were:
TSH .093 (.3-5.00)
T3 3.18 (2.18-3.98)
T4 1.12 (.70-1.90)
if that makes any difference.
My last visit to that endo was a lab where I had them draw an extra tube of blood to test antibodies and he flat out refused and said it was unnecessary, that I was hyper and insurance wouldn't cover it. So I totally agree, I don't believe it's the correct diagnosis at all. So I'm here, scouring the internet for something that might make sense.
The herbs and stuff I take are to treat symptoms, he doesn't diagnose. Some of them help the body to process thyroid hormones, some are for energy without being stimulants, I've worked with him before in relation to my gallstones and was pleased with the results. He said I may end up having to be on replacement therapies but it was worth a shot.
I have to agree that this diagnosis is a little strange.
Your FT4 is at 22% of range, which is considerably shy of the 50% target. FT3 is at 58% of range, and the target here is 50+%, so it looks really good. I certainly don't see a basis here for a diagnosis of hyper. If the hot nodules become more active, you might become hyper down the road, but for right now, I don't think levels should be causing any hyper symptoms.
I also agree that your symptoms sound more hypo than hyper. However, neither do I see your levels causing severe hypo symptoms with FT3 well up in the range like it is.
I think you should seek a second opinion. TPOab was negative, but the other marker for Hashi's, TGab (thyroglobulin antibodies) wasn't tested. Some of us who have Hashi's are only TGab positive. Your doctor should be willing to test those at your request, especially when symptoms are not "textbook". In addition, TSI (thyroid stimulating immunoglobulin) is the definitive test for Graves'. That would probably be worthwhile, too, if for no reason but to rule it out.
"The holistic guy put me on a regimen of supplements to assist the thyroid and shrink the goiter..." Has he given you a diagnosis of his own? I agree that I doubt supplements will have this effect, but if you are "hyper", why would your thyroid need "assisting". It would need suppressing. It's not all jiving.
I'm not comfortable with your diagnosis. I think you need to pin this down much more than it is now.
They've brought my tsh up from .093 to where we are now, not great, but I feel like they've helped.
I'm searching for a new doc now to get valid answers but have been through one endo and one primary care, so far no luck. I paid an independent lab to run my latest results to see if I can have dental surgery soon without worry from anesthesia.
Thanks, I appreciate any insight.
I have serious doubt about the supplements to assist the thyroid and shrink the goiter. And if it is toxic nodules, why are you biologically active thyroid hormones relatively low? Also, your symptoms sound more like hypo than hyper. I am going to contact a couple of other members and ask them to give their opinion also.
Yes I have had an ultrasound, hot nodules. I would guess the TSH level and he decided I was hyper, said it's not always textbook. The holistic guy put me on a regimen of supplements to assist the thyroid and shrink the goiter, as long as I stay on protocol the goiter seems smaller but if I add caffeine back in it seems to get angry again.
So was an untrasound done on your thyroid gland? On what basis did the Endo diagnose hyperthyroidism? You say you are seeing a holistic doctor. What is he suggesting should be done?
multi nodular goiter/plummers/hyperthyroid is the dx from the endo I no longer see. I requested antibody testing, he refused, so I've been supplementing with a holistic guy. Weight gain, lethargy, mood swings, PMS is HORRIBLE. I don't want to be around me :)
In the words of a good thyroid doctor, "The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms."
So please tell us about any symptoms you have.