Can anyone advise if they have heard of a test which checks the production of hormone from the thyroid gland? (Different to checking the hormone replacement in blood).
Apparently I had this test done years ago. Test was never discussed with me but the Dr told me that one gland was over producing hormone. While other gland which was removed in a thyroidectomy was producing nothing.
I take T4 replacement which has never been balanced since having the op 12 years ago. For at least 9 years I had several underactive symptoms. For the previous 3/4 years I have swung from overactive to under active system symptoms depending on dosage. I believe one gland is overrated and the part removed gland is under treated.
I'd really appreciate it if someone could advise on this.
I recently paid to see a private E.N.T who said the remaining thyroid gland isn't working as I need to take T4. Therefore hash's doesn't effect anyone taking T4 as their gland is not working.
I am gluten free and found it helpful but it isn't stopping the swing of symptoms.
I believe my remaining gland is working and Hash is effecting me.
Interestingly, when I had the op I knew two other local girls who also had tumours with nodules and had the op at the same time.
Two of us swing from over to underactive thyroid symptoms. And she took T4 had the remaining gland removed. She her remaining gland must not have been working yet Dr where unable to achieve balance through medication.
Two out if three is a high percentage for the nhs to claim this doesn't happen to patients.
Sorry about the rant but the E.N.T advise is not logical to me.
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Karen154
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There åre three methods.1) Ultrasound (not so good), 2) using a shortlived radioactive substance called sodium pertechnate (NaTcO4), or 3) small dose 131-Iodine. The last two will show up as being absorbed into the thyroid if any of it is working. The radio doses especially for technetium are very small and not damaging. The problem with ultrasound it that it shows if there is something there but not if it is active.
Hi, Thanks for your reply. I was under the impression the Dr came to the conclusion from a blood test. I was under the thyroid clinic at the hospital at the time and had regular blood tests. A scan hadn't been done since having the tumours. When the blood results were discussed I was shown a graph of the result which looked like a spiral.
She was a very good Dr and wouldn't have made that statement to me if it wasn't happening. I definitely didn't take any form of iodine.
Doesn't really make sense to me how the Dr came to this conclusion.
One possible hint that you have a working thyroid remnant is if you are taking 100 mcg T4 or less. Usually patients lacking a working thyroid need more than 100.
After the op I was taking 50mls for years and in a really bad way, very I'll. By chance I saw a different Dr the lady that said one side was under treated ect. She increased it to 100ml. Felt much better.
But the still not great. So fed yrs back the drug was increased and felt great but went over range.
Just can't get the bloods in Range and we'll at the same time.
I don't know about the tests that you had or the treatment you've had in the past, but in the here and now what matters is whether or not you are treated adequately. The only way to know if you are receiving the right treatment at the right levels is by getting thorough blood tests and by being treated to eliminate symptoms. If you are being treated but you still have loads of symptoms then something is not right.
You need to know what has been tested and when, and get the results and reference ranges.
For info on how to get access to your results online or on paper see my post in this thread:
If you can't get access to your tests/results online then you will have to ask for paper copies. The last three year's worth would be helpful. Then you could create a new post and ask for feedback on the results and ranges you have. Please note that you need results for everything that has been tested, not just thyroid-related results.
Hi, thanks for your reply. I have previously done all of this and since having the operation no level of medicine is right. Therefore I need to know if one gland is still working.
If it is it must be over treated.
I have wrote a number of posts looking for an answer.
I take T4 replacement which has never been balanced since having the op 12 years ago. For at least 9 years I had several underactive symptoms. For the previous 3/4 years I have swung from overactive to under active system symptoms depending on dosage. I believe one gland is overrated and the part removed gland is under treated.
The thyroid gland has two lobes, that is true. But there is no way that anyone on the planet can treat one half of your thyroid with one dose of thyroid hormone, and the other half of your thyroid with a different dose or a different treatment.
People take thyroid hormones of all kinds - Levo, T3, NDT - swallow them, and the treatment affects the entire body, not just the thyroid. Thyroid hormones don't "treat" the thyroid in the way that aspirin treats a headache or antibiotics treat an abscess. An underactive thyroid is never really treated at all and there is no attempt to cure it - it is either left where it is, or bits of it are removed, or the whole thing is removed. What is treated are the resulting hormone levels. If they are too low they are topped up, if they are too high the thyroid is suppressed (if it still exists). Treatment fluctuates as blood levels of TSH fluctuate. This isn't a good way of treating the thyroid because the thyroid hormone that actually matters is T3. But it is how the medical profession works.
If your hormone levels are constantly fluctuating then you probably have Hashimoto's Thyroiditis, otherwise known as autoimmune thyroid disease. Lots of people on this forum have it too, and yes it makes life miserable. But some people find ways and means of reducing those fluctuating levels, and learn to supplement to reduce some of the problems with nutrient deficiencies. There is no specific pill or treatment to reduce numbers of TPO and Tg antibodies, other than thyroid removal.
I hope you find an endocrinologist who can help you to feel better - but he/she won't do this by treating each half of your thyroid as a separate entity with different treatments (and couldn't even if they wanted to).
Hi thanks for your reply. That was a lot of information. This is basically what the endocrine docs have been saying which is logical but it isn't what's happening to my body.
I'm negative for hash's but im gluten free anyway so there isn't much more I can in relation to that. I also take a high number of supplements and everything is high range of normal. I don't want to be taking supplements forever as I believe over time they cause stomach problems.
As for me and the other girl I knew who had both lobes removed the medicine is not balancing the symptoms.
No dose or type of medicine is right. I'm ever freezing and can't function and in pain, terrible memory ect or higher the dose my 25ml which is nothing and within weeks I'm burning hot hair falling out, hypo. Also hearing very bad over last 12 months.
The odd thing is that the hearing, hair loss is worse on the side with no lobe.
I don't believe the remaining lobe is not working as I think something is happening to it to flare up the symptoms.
The hair loss you've mentioned in other posts is a classic sign of low thyroid or hypothyroidism. Since you are taking 100 mcg T4 and 6.25 mcg T3 and you are not doing great on these doses, then you need your medication increased. 6.25 mcg T3 is a tiny, tiny dose. What are your last several FT3, FT4, and TSH results and the lab ranges?
Your private ENT said, "The remaining thyroid gland isn't working as I need to take T4. Therefore hash's doesn't effect anyone taking T4 as their gland is not working.". That ENT doesn't know at all what he is talking about. I guess he is not a thyroid specialist, but is more of a diabetes specialist? Hashimoto's isn't cured once you start taking T4 whether your thyroid is working or is not. Hashimoto's absolutely continues to effect anyone who has positive antibodies no matter if they are taking T4, T3, or both. Many people have working thyroids, but their thyroids are not able to produce enough T4, so they supplement T4. Some people do not convert T4 into T3 correctly, so they also supplement T3. Meanwhile, they still have functioning thyroids. They are just not function at 100%.
Karen, I suspect the blood test you're talking about is the TSH. Doctors pretend - possibly even really believe - that testing the TSH tells them how well your thyroid is working. They're wrong, of course, because there are so many variables. But, that's what the call the 'thyroid function test'.
Why did you have half your thyroid removed, if I may ask? It's just one gland, actually, with two lobes. There aren't two thyroids. Obviously, if one lobe has been removed, then the remaining lobe has to take up the slack. And, very often, it's not capable of doing that - despite what doctors believe! So, you need to take thyroid hormone replacement - levo, in your case.
As humanbean explained, levo does not treat the thyroid in any way, and it cannot restore the missing lobe. It just replaces the hormone your thyroid is now unable to produce enough of.
By chance I saw a different Dr the lady that said one side was under treated ect.
I think that what that doctor meant was that you were undertreated, not one side of your thyroid. And, that's why she increased your dose. However, it sounds to me as if your doctors are now dosing you entirely by the TSH, and that is why your results are fluctuating. And, they shouldn't be doing that. Especially not as you are no taking a little T3. The number to go by is the FT3.
When you are taking T3, you can more or less expect your TSH to be low/suppressed. And the reason is simple. TSH is not a thyroid hormone. It is a pituitary hormone. Thyroid Stimulating Hormone. When your pituitary senses that there is not enough thyroid hormone in the blood, it increases its output of TSH. When it senses that there is enough, it lowers its output of TSH. But, when you are taking T3, the pituitary senses that there is no further need to stimulate the thyroid, and reduces its output of TSH to practically nothing. And, that's OK, because you don't need TSH anymore. your thyroid cannot respond, anyway. And, there is hormone in the blood. And, that's more or less all that TSH does (there are other things, but that's irrelevant at this point), it does not have any direct effect on your heart or your bones, as doctors seem to believe. There is nothing wrong with having a low TSH, so your doctor should not even be looking at it at this point, he should be looking at your FT3. Dosing by the TSH will continue to force your TSH up and down continually, and you will never feel completely well.
I have previously done all of this and since having the operation no level of medicine is right. Therefore I need to know if one gland is still working.
What have you done? Have you got on-line access to your results? If so, post them here, with the ranges.
No level of medicine will every be right if you are being dosed by the TSH, as I explained. But, knowing whether your remaining lobe is still working is irrelevant. When you have an FT3 test done, the test will be measuring all the T3 from all sources: the T3 made by your thyroid, the T3 coming from conversion of T4 and the T3 you are taking in a pill. And, it is the total that counts, not how much is coming from your thyroid. It's not the thyroid that is causing you problems with dosing, whether it's still working or not. It's the reliance on the TSH - an unreliable test at the best of times - to fix your dose. And it does not automatically follow that you are over-treated if your thyroid is still working. You are only over-medicated if your FT3 is over-range, no matter where the T3 comes from.
I agree that NHS doctors are mostly rubbish when it comes to thyroid. But, it's not just on the NHS! There don't seem to be any knowledgeable doctors in any country! That is why we have to take charge of our own health and learn as much as we can about our disease. And, the first step in that education is learning to understand our blood test results. So, let's have a look at them, and we'll explain them to you. And, before you know it, you'll be teaching all these ignorant doctors a thing or two!
Hi, you've replied to quite a few of my posts with good info. But I would need to see evidence the suppressed tsh doesn't effect your heart as tsh gets to low and people get palpitations. It can cause an enlarged heart with leaking valves if suppressed for a number of years. I sure don't want that.
Back to the initial test to check hormone production. Your probably right. But she definitely said one side was over producing and the other side doing nothing. Which makes sense.
I had tumours on one side and the two other girls were the same. As I said one was swinging from over to under active for years before the op.
I can tell you she seems a help of a lot better then me. She had the other side out about 6 years ago.
Drs don't test for T3 anymore - lab reject the requests. So I'm self treating with that.
It's too late to sort out any info tonight, but I will have a look and see what I've got tomorrow night - if I forget, remind me. In the meantime, I would suggest you check on the post by diogenes on here. He has written about this.
But, I can assure you that the TSH does not cause an enlarged heart - in fact, this is the first time I've heard that excuse! Normally, they say it causes heart attacks. But, think about it logically, how can the absence of a hormone do that? A hormone whose sole raison d'être is to stimulate the thyroid to make thyroid hormone, and stimulate conversion of T4 to T3. It has no connect to the heart. Whoever told you that has misunderstood.
Palpitations can be caused by high FT3, or they can be caused by a low FT3. But, they are not caused by the TSH at any level. The TSH itself doesn't cause symptoms, be it high or low.
You must not compare yourself to other people. Even if she did have tumours on her thyroid, and one lobe removed, it doesn't mean she was in the same condition as you. There are so many variables, and we're all individuals and react differently. It really doesn't help you to compare yourself to other people.
But she definitely said one side was over producing and the other side doing nothing.
What she probably meant was that the remaining lobe was over producing to compensate for the loss of the other lobe - obviously a thyroid lobe cannot make hormone if it isn't there. Even so, one lobe of a thyroid could not make enough hormone to make you hyper.
Does your doctor know you are taking T3? If so, he should tell the lab, because they are supposed to test T3 if you are taking it. You absolutely cannot dose by the TSH if you're taking T3. It doesn't make any sense.
Yes! That was exactly what the Dr meant when she said, one gland is over producing hormone ect.
I test privately for T3.
T4/T3 is always out if range for me when TSH is suppressed below 0.05. So I can't put myself at risk of heart problems.
Of course everyone is different but the thyroid diagnosis was the same. We all had the goitre which was a tumour with nodules. In that respect we were the same.
Now, this is the big question and this were text books Dr's ect fall down.
If my symptoms aren't caused by an imbalance of hormone production. If it has nothing to do with thyroid medication dosage. If antibodies are negative for hash's/autoimmune disease but it is definitely thyroid causing my problems. It's not related to deficiencies.
Then what the hell is causing the sharp change in body temperature - with over and underactive thyroid symptoms.
How do I live it and move forward with my life, with diagnosis, with treatment ect. It is causing so much, irreversible damage to my body and basically draining the life out of me.
There is nothing unique about me so other people with thyroid conditions must be going through the same.
There has to be an end to this for me. I can't go on like this.
I just wanted to update the post if anyone can advise.
I saw my dermologist tonight with regards to the loss of my eyebrows and hair.
He said its the thyroid. There has to be balance with the thyroid bloods. But there is never any balance regardless of what dose I take. He shrugged his shoulders and said he can't commitment on thyroid. And advised me to see another thyroid consultant at another hospital.
He said he didn't know of a test to check if one gland is producing hormone and to see my GP who doesn't know.
They just play games with me. They do know. I told him about the previous Dr and he said. I probably have one over active thyroid lobe.
Before I started taking t3. When my T4 was reduced the brow hair fell out. So I think higher T4. But 25mls takes everything out of range again.
My GP Highered it as my bloods were the low range of normal and the brow hair was falling out.
The constant yo-yo of thyroid bloods has really effected my hearing in the last 13 months.
I really believe I need the other side out. I don't know how the hell I'm going to get the nhs to do this for.
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