I moved house in December so had to change doctors,they asked me for bloods for thyroxine prescription.Which I duly supplied.I was taking 175mcg.
Doctor phoned and said to drop dose as Tsh was 0.04 Ft4 was 14 (9-19) ft3 was 4.6 (3-5.6).
So I dropped my dose to 150mcg and they took my bloods again 2 months later. Doctor phoned and said to drop my dose again as my Tsh was 0.05 ft4 was 9 (9-19) and Ft3 not taken.
I told him I felt crap my pulse is in the low 50s, I thought my heart rate monitor wasn't working but hubby put it on and it was in the 70s.I also told him I had been getting pin and needles in my hands and he said they weren't symptoms of hypothyroidism. That ft4 and ft3 were irrevelant and he treated according to NICE guidelines in that you treat according to Tsh results only..
I looked up NICE guidelines and it says to treat by Tsh only. If Tsh is within range and there are still symptoms to start looking at other causes.That combination therapy must NEVER be used.
I really thought a new young doctor would be better.But no it seems he is no better than my last doctor who said in 27 years had never treated anyone with other than thyroxine.
So my question is do I drop my dose? Or if someone would be able to send me an Pm on where to get NDT please now might be the time to start taking things into my own hands.
Or is he right??
Written by
VanessaB
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No, he's not right. He's very, very ignorant. And, I'm sure the NICE guidelines must have killed a lot of hypo patients! They are not 'nice' at all!
TSH is totally irrelevant when you are on thyroid hormone replacement, unless it goes high. It doesn't matter how low it goes. It's the FT3 the most important number. And yours wasn't even mid-range, so you needed an increase, not a drop in dose. But, it doesn't sound like you're ever going to get through to that young dinosaur, so best to go it alone.
But, I'm sorry, I can't help you with sources of NDT. I don't take it.
Oh, I expect they have already. But, as they have no idea what hypo symptoms are, they really wouldn't know! My dad died of a heart attack, but I'm pretty sure that heart attack was caused by low T3!
VanessaB No, he's wrong, he belongs in the same pile as the other idiot doctors who are TSH obsessed, blinkered, have their heads in the sand, and refuse to look at the whole picture.
Once on Levo TSH is irrelevant because it is a pituitary hormone. Basically, the pituitary looks to see if the thyroid is producing thyroid hormone. If not it sends a signal to tell it to - TSH (Thyroid Stimulating Hormone). If you're not producing much (as in hypothyroidism) the TSH will be high. If you are producing plenty the TSH will be low. But the TSH will also be low if you provide that thyroid hormone synthetically (Levo). So your pituitary has recognised that you have some thyroid hormone because you are taking Levo so it doesn't send the signal (TSH) so TSH is low.
Blimey, reading that back it sounds gobbledegook. I'm sure there's a simpler way of explaining it but I'm having a foggy brain day today!!!
When you were on 175mcg Levo and results were
TSH: 0.04
Ft4: 14 (9-19)
Ft3: 4.6 (3-5.6)
he reduced your Levo due to the TSH being low, but your FT4 and FT3 are only about half way through their reference ranges so not particularly brilliant.
On 150mcg Levo and results now
TSH: 0.05
Ft4: 9 (9-19)
then there's not much difference in your TSH but look what it's done to your FT4, it's right at the bottom of the range, and your FT3 will have lowered as well.
What does he think will happen with a further reduction in Levo? Your FT4 will drop below the reference range, as will your FT3, and you will feel as bad as when you were first diagnosed.
From ThyroidUK's main website > About the Thyroid > Hypothyroidism > Treatment Options:
"According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."
You can buy that book from Amazon for about £4.95 and show tha the relevant part to your GP.
Also
"Dr Toft 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)."
Dr Toft is past president of The British Thyroid Association and leading endocrinologist. You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk , print it off, highlight question 6 and show your GP.
If it doesn't make him increase your Levo then you have to fight your corner. Tell him that you have taken advice from NHS Choices recommended source of information for thyroid disorders, which is ThyroidUK, and if he won't increase your Levo then you would like a referral to an endocrinologist. Before you make any appointment with an endo, email Louise (as above) for the list of thyroid friendly endos and whoever is in your area then ask for feedback from forum members, there's no point in seeing one who is as TSH obsessed as your GP.
The alternative is, of course, to self medicate and do private thyroid tests.
I agree with others who gave given excellent advice. No, your doctor is not right. You shouldn't reduce now, and you should not have reduced before. Thyroid replacement should never be reduced based on bloods if symptoms are fine.
The rule of thumbis that freeT4 should be in the top quarter and freeT3 in the top third. Those on Levothyroxine only tend to require a high freeT4, maybe over range. The TSH is irrelevant once you're on supplements.
Thank you all so much for your replies it really means a lot when people take time to reply.
I'm learning more everyday it's just a shame my doctor doesn't.I know you can't be knowledgeable on everything ,but when you have material available to you offering an different approach then why can't you try it?
Ironically now he has ordered prolactin tests as my periods have stopped since dropping dose,celiac test,and diabetes as I do not know what type of hypothyroidism I have if it's Hashimoto's or not but he said even if thyroid antibodies were raised it wasn't necessarily Hashimoto's??
As I had asked him if going gluten free would help symptoms he said only if I was celiac.
Anyway hopefully I should get test results again soon.
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