Hello, after being very unwell for most of 2018/2019 because of GP deciding I was over medicated because of low TSH 0.03 and reducing my levothyroxine eventually from 150mcg to 125 on 5 days and 100 on 2 days I got him to increase back to 150 mcg again last September and although it took about 8 weeks or so most of my symptoms were alleviated apart from slight constipation. Felt great really and happy again.
Results when I was unwell were
TSH 0.19
T4 15.6 (10-19.8)
T3 3.8 (3.5-6.5)
Then in November another blood test, results of which were
TSH 0.03
T4 23.5 (10.5-21.00)
T3 6.1 (3.5-6.5)
GP said I was slightly overmedicated but as I was having my first ever appointment with an endocrinologist he would let him decide what to to do. I decided to decrease myself just one dose a week to 125mcg as T4 was I accepted too high. Endocrinologist was really unhelpful and said although it was important I stayed feeling well he wanted my TSH at a level he is happy with and he said to decrease my levothyroxine to 150mcg on 5 days and 125mcgs on 2 days. Have another blood test end of January and possibly decrease again if necessary. He also wants me to have a bone scan which is due 23rd January as he is worried about osteoporosis as my TSH (even when unwell) has been low for a long time. Also I am having a random cortisol and a Urine NTX links test at the same time as normal thyroid function tests end of January. I am seeing him again beginning of April.
The problem is I have started to feel not myself again and so I have just this week gone against his advice and only decreased to 125mcg on one day a week.My symptoms are quite obscure, just a feeling off less energy and bone aches generally. Do you think this could all be in my head as decreasing by 50 mcg over the whole week is very small? Not sure how the endocrinologist will react when he knows I've not taken his advice.
Written by
Min789
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Personally, I wouldn't go back to an endo that is so obsessed with the TSH. Low TSH does not cause osteoporosis, that was disproved a long time ago. And, if you need your TSH suppressed to feel well, then so be it. This man will make you ill and keep you that way. If I were you, I would just stay on the dose that makes me feel well, regardless of the blood test results. Your FT3 is not over-range, so you are not over-medicated.
Thank you Greygoose. I think I will have the bone scan as that could be good especially if it says I haven't got osteoporosis (fingers crossed). What shall I do about the endocrinologist? Do I just cancel my appointment and will my GP not be happy I have done so? He afterall is the one that will be prescribing me long term.
The endocrinologist I believe was a diabetes specialist as the room on my blood test form said Specialist Diabetic Clinic.
I wish I had never gone to see him. The GP did listen to me but I think he will be annoyed I haven't taken the endocrinologist's advice as he thinks my TSH is too low too.
Explain to your GP what you've just said to me, that the endo is a diabetes specialist, and diabetes specialists are well-known for having scant knowledge of thyroid. And he proved that by fixating on the TSH, when the most important number is the FT3, which is not over-range, and is making you feel well. If the FT3 is good, the TSH doesn't matter. But, try getting that across to your GP before you cancel your endo appointment. Just tell him you have no confidence in the endo and don't want to see him again. No point in a doctor you don't feel you can trust.
But, yes, take advantage of the bone scan! It's always good to know. And, if you don't have osteoporosis that will strengthen your argument. And, I'm sure that if you post on here asking, people will supply you with research papers proving that a suppressed TSH is not a problem.
Thank you greygoose for showing me the way to approach it. I will have the bone scan on the 23rd and then see the GP afterwards to let him know I've no confidence in the endocrinologist.
If the bone scan shows beginnings of osteoporosis then I will have a battle on my hands so really hoping it will be ok.
May I ask how old you are? Because the problem with bone scans is they compare everyone's bones, of every age, to young bones. And, of course there's going to be some changes as you age. Plenty of people not on thyroid hormone replacement, with optimal TSH, still get osteoporosis, so I don't know why they always want to blame it on the TSH. Just an excuse to reduce your dose, I think!
But, here's hoping it will all be fine. And, if it isn't, as I said, ask for documentary proof that low TSH has no effect on bones. It's out there, somewhere.
I will be 68 tomorrow 😁. So yes I'm assuming there will be some degeneration but they must take that into account surely?
Sorry I didn't understand what you meant in your last paragraph about asking for proof that low TSH has no effect on bones. They are unlikely to supply me with that 😂.
No! lol Don't ask the doctor! Ask on here. So that you can show scientific evidence to your doctor to stop him obsessing about your TSH.
I'm not sure they do take your age into consideration with a bone scan. That's the problem. But, when you have one, you'll find out and can set me straight.
TSH is largely irrelevant when on Levothyroxine. When on Levothyroxine the most important result is FT3.....followed by FT4
Many people on just Levothyroxine need FT4 above range in order to have high enough FT3
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements do you currently take?
When were vitamin levels last tested?
Can you add results and ranges
Good levels of vitamin D and magnesium help give strong bones
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