If you are on an adequate amount of either NDT ... - Thyroid UK

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If you are on an adequate amount of either NDT or T4/T3 combo, so that you feel well-is it ever possible for the TSH to NOT be suppressed?

13 Replies

When my endo quibbled over the dangers of a suppressed TSH, I asked him this question and he didn't reply.He couldn't answer my question.My TSH has been suppressed for 15 years while on armour, which i obviously need to feel well.

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13 Replies
PinkNinja profile image
PinkNinja

Perhaps show him this paper that demonstrates that TSH/T4 relationship is very different in hypothyroid patients compared with euthyroid and hyperthyroid patients. He really should have already read it if he is an expert in the field...

ncbi.nlm.nih.gov/pubmed/234...

in reply toPinkNinja

Thank you, Carolyn, that is a good one! I have a few useful sources now to wave under their noses, but as I have said on previous blogs, it's the suppressed TSH when having an anaesthetic that is the problem and I can't go into major surgery feeling ill. The morphine and anti-emetic alone play havoc with thyroid medication, so I need to feel at my best before I start.They are expecting me to go into surgery with reduced medication because they know nothing!

PinkNinja profile image
PinkNinja in reply to

Sorry, I forgot about that. Sometimes I have trouble remembering who has which problem - brain fog or crazy children, I'm not sure which, lol.

This is a real dilemma! I would have thought that, provided your T3 is in range, there shouldn't be a problem. Dr Toft mentions in his book that there is no problem with suppressed TSH provided T3 is unequivocably normal. Do you have the book? I don't know whether that will help persuade them it is ok to have the anaesthetic.

I hope you find a solution soon. This must be very frustrating and not to mention rather frightening!

Carolyn x

in reply toPinkNinja

Yes, I have shown willing and reduced my thyroxine and armour and found that I REALLY can't do without them. I had a good cry to a GP at the surgery last week who doesn't even know me and he was lovely! He said it was wrong to make me ill before major surgery. Both he and my usual GP can accept a suppressed TSH under normal circumstances . My last knee replacement was done while I was awake, with nerve blooks and a sedative and I chatted to the anaesthetist on and off throughout. My TSH was suppressed then-so I will ask for this style of op this time (even though I could hear them sawing!).Oh yes my T3 is always in range and I have the Toft book plus other stuff that other people have given me.I am thoroughly prepared to confront them with all my info!

Don't worry, I can't expect you guys to remember everyone's woes! xx

PinkNinja profile image
PinkNinja in reply to

I'm sorry I couldn't be more helpful. If I come across anything I will let you know :)

Redditch profile image
Redditch

not for me, no.. I need a really supressed TSH to feel good, so I stop taking my NDT for three days before the blood tests..

However. I did read a paper that said the "sample" population they used to devise the range for TSH included some 200/500 hypo patients.. so... the "range" is flawed.. they should have used all healthy individuals for the healthy range and they didn't

so I think 2 things.. a) the range is flawed.. and B) basal temperature is a better indicator

this guy agrees with me..

5. youtube.com/watch?v=kExFRwQ...

in reply toRedditch

I know he's right!!!!!

Clarebear profile image
Clarebear

My TSH has to be suppressed for me to feel well on Armour. Saw my endo on Thursday and, while he is ok with this, he said with my blood profile I am more at risk of atrial fibrillation. I'm afraid I told him that I don't believe that, as its surely the ft3 and ft4 levels which are important, not TSH. He didn't know what to say but wouldn't back down. If I reduce my dose I feel awful and get palpitations, in my opinion this is more likely to cause problems.

I hope you get this sorted janjan xxx

in reply toClarebear

We are both in the same position regarding TSH-the endos seem emphatic about this 'rule'.Yours, like mine, was unable to reply-I said exactly the same thing about my T4 and T3 levels.

I cannot possibly have this op while feeling ill, as reduction is NOT the answer for me. I've proved that, these last few weeks and it's a good thing I tried reducing in summer and not in winter! The ridiculous thing is that the hospital never queried this before when I had ops.My GP said it's the anaesthetists who are covering themselves against any possible problems with patients.Thanks for replying, Clare xxx

Clarebear profile image
Clarebear in reply to

Sorry I don't know what to suggest :( Hope I don't ever need an op....

What would they do I wonder if either if us needed an emergency op? I guess they would have to get on and do it anyway. Xxx

in reply toClarebear

They certainly would! xx

PinkNinja profile image
PinkNinja in reply to

I know it is a risk for someone who is hyperthyroid but you are not. This is so frustrating! What about cancer patients who are on TSH suppression therapy until their thyroid is removed? I have been trying to find out a little more about this but couldn't find anything useful.

in reply toPinkNinja

Thank you for looking.My brother-in-law had thyroid cancer over a year ago and was given T3 for a while and had to come off all meds before the total thyroidectomy and RAI treatment.I was very much there for him as i know how totally awful he felt. He was very brave and is now doing so well-but not on enough thyroxine yet, even though he's back at work. x

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