Help please - test results and treatment

[Misscshell24]

Still waiting on TSI results and have a 2.2 cm nodule in my right thyroid gland. My main symptoms are pain and weight gain. It looks like everything is in range except TSH is 0.01, which we already knew. What do the results mean so far? What are the likely treatment options?

[greygoose]

Well, your FT4 is just a gnat's breath under mid-range, and your Hashi's antibodies are negative. FT3 is just over mid-range, so conversion is ok, but you haven't got very much to convert.

Why the TSI? Are you expecting to be hyper? Not much chance of that those low Frees.

[Misscshell24 in reply to greygoose]

My TSH is 0.01, so I am hyper, right? I'm hyper with hypo symptoms. My doc is suspecting graves, so she's doing the TSI. She said if it's not graves, the nodules (I have 5) could be causing the TSH to be off. That sound right?

[greygoose in reply to Misscshell24]

Absolutely not! You are only hyper if your FT3 is over-range, and yours is a long way away from the top of the range, even.

The nodules have nothing to do with the TSH, either. Most people have one or two nodules, even those with no thyroid problems. Your doctor doesn't know anything about thyroid, does she! Be careful with her or goodness knows what she'll do! In fact, don't let her do anything.

OK, so you're waiting for the TSI result, and that will set your mind at rest. But, I think what your doctor should do, is wait and see. Retest in six months. At the moment, there's nothing amiss.

But, tell me, what time of day did you have this test done? Had you eaten not long before it? These things could make a difference to the TSH.

[Misscshell24 in reply to greygoose]

I've had my TSH tested twice now. Both times 0.01. Once was fasting and the other wasn't. Both in the morning. Something is amiss, though. I have horrible pain and feel awful, dizzy, weak, nauseous, migraines, weight gain of 80lbs this year, vision issues and light sensitivity. I do not want to feel like this for six months and recheck. I want answers now. I have five nodules all between 1-2.2 cm, which I'm told is a concern and to biopsy and scan my thyroid glands. I've talked to two doctors and both said I am hyper thyroid, one was my pcp and the other was a endcrinologist. I heard from them after I posted. I'm confused that you say it's not hyper, if it's not that then what is it? I'm still learning and have a lot to learn. Thanks for your response.

[greygoose in reply to Misscshell24]

It could be your pituitary. That TSH does not correspond to the levels of the Frees. It should not be so low. You would expect it to be low like that if you were taking liothyronine, but you aren't taking anything, are you?

If you do have a problem with your pituitary, then it will affect other hormones, too, and that could make you feel bad. But, your symptoms don't sound like hyperthyroidism to me.

So, if you let your doctors treat you for hyperthyroidism now, what is going to happen? Your gland is going to make less hormone, so you are going to go very hypo, very quickly. And that will not make you feel good at all! And, what's more, the odds are your TSH will probably stay exactly where it is. So, what are they going to do then? They might even start suggesting a total thyroidectomy, which is what they tend to do when they don't have any answers. Then you would be permanently hypo.

I understand your impatience, but before accepting treatment, you have to be sure of your diagnosis. If one just looks at the TSH, one could think you're hyper, yes - and most doctors only look at the TSH! But a low TSH on its own does not make you hyper. High FT3 makes you hyper and your FT3 is mid-range. How can that be hyper? Look up the definition of hyperthyroidism, and if you find anywhere where it says the TSH alone can give a diagnosis of hyper, I will eat my... don't have a hat, so can't say that, but I will be very surprised. TSH isn't even a thyroid hormone, it's a pituitary hormone.

It seems to me - although I didn't want to say this before in case the next test showed the TSH had risen - that it's your pituitary that is not producing enough TSH to stimulate your thyroid. Or possibly the hypothalamus is not stimulating the pituitary correctly. And that's what your doctors should be looking at. Not insisting on their fixation with the TSH.

Another possibility is that you have TSH antibodies, which are skewing the tests. Although, I believe that TSH antibodies usually make the TSH abnormally high compared to the Frees. But, I could be wrong, or it could perhaps go both ways. I'm not very well up on that, but I know it exists. And, your symptoms could be due to something else entirely. But, whilst the doctors are fixating on the low TSH, they are not going to look for other solutions.

That's my opinion, anyway. I could be wrong, but...

[Misscshell24 in reply to greygoose]

I don't think they're focusing on the TSH, I am because with that and the nodules, that's all I know. It's the only concrete thing I know, so it's what I've been doing research on, so I appreciate another perspective or possibility. My labs came back with the low TSH last Wednesday, so it's only been a week. So we are in the testing and process of elimination stage. I am meeting with an endocrine specialist tomorrow for the first time and no treatment has been discussed or started yet. Hopefully she will look at everything and figure it out.

I am not taking any thyroid medication. If it is pituitary, how is that tested and treated?

[greygoose in reply to Misscshell24]

The pituitary produces several hormones apart from TSH. So, those can be tested. Plus it controls the adrenals, so adrenal hormones can be tested. I'm not quite sure which ones they do test. But, remember you have a say in all this. If no-one mentions the pituitary or the hypothalamus, you mention it!

[Misscshell24 in reply to greygoose]

Thank you! I couldn't find much on the World Wide Web about it, but did search and found a couple posts on here about TSH 0.01 and normal T3 T4. Those posts mentioned adrenals, pituitary, cortisol, 24hr saliva test, addison's. I have my appt today so will ask about those things and the hypothalamus. According to Dr Google, pituitary dysfunction is typically from a tumor and requires a ct scan, going to get a second opinion from an actual Doctor If there's anything else that would be good to discuss or ask the doc, let me know. Thanks again!

Oh! Also, don't know if this makes a difference, but my grandmother was hyper and treated successfully with meds and my uncle had hyper and a large goiter that wrapped itself around his heart that had to be surgically removed, so I've been told. From what I've read, genetic thyroid problems can manifest in different forms for different family members. Thought I'd mention it since people on here seem to know more than google and some doctors and definitely more than me.

[greygoose in reply to Misscshell24]

Yes, thyroid problems do run in families, but so do autoimmune problems. There are so many things that can go wrong, when you come to think of it, and they all seem to happen in the same family.

A tumour on the pituitary doesn't have to be malignant, it can be benign, but needs to be found and removed as it can alter pituitary function. If it's not a tumour, then all you can do is replace the missing hormones.