I have subclinical hyperthyroidism with a multinodular goitre, have had all the tests FNA,iodine uptake,scans ,parathyroid,bloods etc all came back fine.
the doctors want to remove my thyroid only because of two large nodules but I have refused ,not sure I would be better off with out a thyroid but now I am having second thoughts as I have experienced strange mental issues, have read the thyroid can affect mental health.
The Pseudobulbar affect twice, hallucinated once, Tourette syndrome several times and what appears to be split personality not to mention I am always in a bad mood and often enraged.
One doc put me on half a 5mg carbimazole but I didn't react well to it ,not even a quarter of it. If I have my thyroid removed will these strange mental problems go away?
I am not on any medication and have not had mental problems before ,these symptoms have been gradually getting worse.
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Lorlei
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I think you might get better replies if you post your blood test results - result and ranges - because 'subclinical hyperthyroidism' is a bit iffy as a diagnosis. Have you had any antibodies tested? Are the two nodules secreting their own hormone? Are they affecting your breathing or swallowing? We do need all possible details to be able to help.
Last blood tests the doc didn't even test T3 and another told me it is not important anyway.
For 20 years now after numerous tests all that I mentioned, diagnosis is subclinical hyper
No antibodies ,nodules are not secreting hormones according to tests but symptoms are getting worse. The question was would I be better off to remove thyroid but since scrolling through these boards I see that even hypothyroidism can affect mental health and trying to balance thyroid with medication seems to be a life long struggle.
Well, that's what you would be doing if you had your thyroid removed: trying to balance thyroid medication for the rest of your life.
If you gave us the exact numbers, as I said, we would be better able to answer your question. We can't guess at these things. And 'sub-clinical hyperthyroidism' doesn't mean very much. It could just mean that your TSH is suppressed but the other levels are fine. In which case it would be stupid to remove the thyroid. Also, it's very important to know exactly what was tested: did they do any antibodies, for example?
Yes, hypothyroidism affects mental health, which is why I have doubts about your so-called 'diagnosis'. It could be that you actually have Hashi's, which starts with a bout of hyperthyroidism and then swings between hypo and hyper - doctor often confuse that with true hyperthyroidism. But, you can only know if you have your antibodies tested. I'm not being nosey asking for your results, I want to help. And I did understand the question. I just don't see how anyone can answer it satisfactorily without more details.
So, your TSH is very low. But not suppressed as it would be if you were hyper. But, your FT4 is also low - a 'normal' (euthyroid - i.e. with no thyroid problems) is around 50%.
TSH...0.21 (0.5-6.0)
FT4...14.4 (11.0-22.0) 30.91%
FT3...5.5 (3.1-6.4) 72.73%
TSH still low, but FT4 even lower.
FT3 is high. But, not over-range. This often happens when the thyroid is failing for any reason, it makes more T3 and less T4 to keep you alive. I cannot say that this is absolutely what is happening here, but it is a possibility. In any case, it's still in-range, so does not suggest hyper.
TPOAB...16 (<10) (<35)
TRAB (TSI)...<0.10 (0.55)
TGAB...10 (<10)...(<115)
PACTH...3.4(1.6-13.9)
Now, this is really interesting.
TPOab and TgAB are used to diagnose Hashi's. I'm puzzled by the fact that there are two ranges, but only one result for each of thise. Or is it two results and one range? It's not clear. But these would appear to be negative, too.
Now, whilst a negative Grave's antibody test rules out Grave's, a negative Hashi's antibody test does not rule out Hashi's for two reasons:
a) antibodies fluctuate all the time, so a negative result today does not mean they will be negative next week, or next month.
b) 20% of Hashi's people never have over-range antibodies. They are diagnosed by ultrasound, when the damage caused by the disease is visible.
TRAB is for Grave's. That is negative. So, you do not have Graves.
Now, ATCH is not antibodies. It is a pituitary hormone that stimulates the adrenals to make cortisol. Yours is very low.
TSH is also a pituitary hormone. It is also very low. So, as I see it, these two results point to a problem with the pituitary, rather than the thyroid. So, I think that, in persuing a diagnosis of 'subclinical hyperthyroidism', your doctors are not only barking up the wrong tree, they're in the wrong forest!
I'm not a doctor, I have no medical training, and I am not diagnosing you. I'm just pointing out the facts and what they could possibly mean.
If the problem is with the pituitary - Secondary Hypo - it means that you probably have a healthy thyroid (apart from the nodules, but most people have those!) so it would be a shame to remove it. It I were you, I would be insisting on further testing to investigate the pituitary. Have you ever had your cortisol tested? That might be the logical next step.
Interesting you say ACTH is low when the surgeon who tested that after I refused surgery said and I quote..."spot on" I don't see her anymore, no need.
It makes sense that the ACTH and TSH are low and connected to cortisol so my problems might be more an adrenal issue.
I had cortisol tested many years ago (about 20) can't remember the results but it wasn't an issue at the time.
I am due for another thyroid test in August and will try to have pituitary and cortisol tested and antibodies .
Well, I realy don't think it's more of an adrenal issue. I really think it's more of a pituitary issue which is affecting both your thyroid and your adrenals.
I think the surgeon who sais 'spot on' about the ATCH result said it because it was in range. Doctors don't understand about ranges, and as long as it's somewhere within the range, they think it has to be good. Same with your TSH. If it had been 0.51, they would have thought it was perfect. but 0.49 they would say was hyper. It's all or nothing with them, and that really isn't how it works.
If the uptake scan was fine does that mean the nodules are functioning normally?
Uptake scan specifically reveal the function of the thyroid and should reveal the source of any hyper from thyroid.
I assume sub clinical means you have low TSH and normal level of FT4 & FT3 so removing 2 nodules may not resolve the issue?
Doctors would be removing your thyroid to try and force the TSH to rise by having no ability to make hormone. Then when the TSH is high enough they can offer T4 replacement.
If you reacted poorly to carbimazole you could try PTU. Chemically they are very different.
I have a hyper a functioning nodule. My levels were gradually rising for about 5 years (didn’t know at time, I found out later). With suppressed TSH, midrange FT4 & fractionally over range FT3 initially. by time I was diagnosed FT4 borderline high - FT4 almost double.
I had a great deal of eye lid twitching - (resolved when I started magnesium) but nothing like Pseudobulbar affect or Tourette’s or split personality.
I for sure had a poor & anxious mood and a fair temper. It’s said high thyroid levels can cause / worsen issues.
Are doctors suggesting these were caused by sub clinical hyper?
Nodules can also cause physical issues with compression. Once it impacts on swallowing, breathing & voice the issue necessitates surgery.
The uptake scan showed the nodules are not secreting hormones and yes low TSH with normal T3 and T4 with only slight variation over years ,no antibodies.
I haven't even discussed the mental effect with doctors because they are so closed minded and only want to remove my thyroid. I do get breathless and docs just want to xray lungs yet again been there done that it proved nothing wrong with lungs but still they want to rinse repeat.
I have noticed any stimulus from stress,coffee,alcohol ,chocolate and symptoms get worse.
Next time when I see a doc again I will ask to try PTU .
Did you have a reaction to carbimazole or did it make you very tired by lowering already normal range FT4 & FT3 levels making you hypothyroid.
You do not have hyper levels. Your thyroid or nodules are not over producing they are functioning at normal levels. In healthy people the TSH rises when thyroid levels are low to stimulate the thyroid to produce more, usually it decreases in response to high levels to signal the thyroid to slow down production.
Your doctors see your TSH is low therefore your thyroid levels are “too high” only there not too high. They are in range and your thyroid is functioning normally.
Because doctors are taught to judge things on TSH they want to remove your thyroid even though it producing thyroid to expected levels.
This will complete remove any thyroid hormone from being produced and therefore the TSH “should” rise. In an attempt to get a thyroid to produce adequate hormone (but as there will be no thyroid you will have to take as hormone replacement.
I think there’s an issue with either the pituitary or hypothalamus or the process which senses the feed back loop. It’s called the HPT Axis. So you could be removing your thyroid and the TSH still remains low.
Low TSH doesn’t cause symptoms as it’s sole purpose is only to signal they thyroid to produce. It’s the thyroid hormones which results in symptoms usually FT3 the active thyroid hormone is the main culprit of symptoms with low or high levels being the source of symptoms.
Like you say - doctors look at symptoms separately & don’t look at the whole picture and connect the dots. The pituitary controls many hormones. You need that investigated.
I was put on half of a 5mg carbimazole it made me so tired I could barely function so I halved it again and still same reaction but it would only last for half a day and I would bounce back didn't think it worth pursuing so discontinued.
I'm going to ask the doc on my next visit about pituatory,hypothalamus & HPT axis
though I doubt the GP would have a clue and the last time I asked for a referral to an endocrinologist, the endo refused to see me and referred me on to a surgeon .They all think removal of thyroid is the only option,glad I didn't comply.
There is definately some thing amiss because of my weird mental symptoms that crop up every now and then, I don't have mental problems normally,never been medicated or seen a pyschiatrist .
Years ago I was diagnosed as deficient in estrogen but at my age ..70 that's expected
I have just used some phyto estrogen cream that's made from soy and am feeling more settled. At this point in time I am willing to try anything.
Well, not really, no. Soy impedes the uptake of thyroid hormone by the cells. It doesn't stop the thyroid producing hormone, and it doesn't have any effect on the TSH - i.e. it won't raise it. But, it's not low TSH that makes you hyper, anyway, it's high FT3 - very high.
But, in any case, if you have Hashi's, anti-thyroid drugs are the wrong treatment. You would go very hypo very quickly, given that your FT4/3 are not over-range.
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