Taking NDT and feel like crap.

[Schenks]

I've just built up to 2 tabs of NDT a day (bought by me from reputable site) and I feel like crap. Was not feeling marvelous anyway, but feel like I'm relapsing a bit. Dummy that i am - just read on another feed that I should really be splitting my doses since T3 has such a short life. Forgot all about that. But it's the weird heart flutters that are concerning me as well as the achy chest pain, all the way through to my back. Since the GP thinks I'm a heart sink job, I'm really loath to back to her and the endo, although quite a good bloke in his way (has prescribed Armour for one lucky, wealthy private patient and is "not averse, if the patient wants it"), is wedded to blood tests and trying to talk to him is like trying to get heard in a hurricane of "if TSH too low . . . heart problems . . . stroke . . . wake up one morning and can't use left side . . wouldn't be doing my job . . . BLAH BLAH BE AFRAID BLAH BLAH . . . " - which is what I get hit with when I tell him I still feel hypo despite the low TSH numbers (less than 0.03).

Can anyone advise me if the flutters are always from hyper or can you get them if you're still symptomatically hypo? (By the way, will be seeing a doc if this doesn't improve over the weekend, so I'm not trying to self diagnose here, just self manage - since it's the management of the hypothyroid symptoms that doctors . . . DOCTORS . . . don't understand without the fall back of the bloody blood tests.) God I'm sick of it.

[greygoose]

Hi Schenks, I don't really understand the language of the heart (in more ways than one! lol) so I don't really know what you mean by 'flutters'. But I do know that being both hypo and hyper can affect the heart.

As we all know, the TSH test is useless (sigh), so you absolutely cannot tell if you are hyper from it once you are on thyroid hormone replacment. What you need is the frees : FT4 and FT3 to really see what is going on (although even they are only a rough guide). Best to ask your endo - because labs don't listen to docs - to get those tested. And if your FT3 is low, you definately aren't hyper and the heart problems are probably due to under-treatment.

Hope this helps, Grey

[Schenks]

Hi, Grey

Thanks so much for taking the time to answer. I know that my last results were that the free T3 was slightly above the lab standard, but that T4 was a bit below. I will have to chase up the blasted endo - I am so tired and you know how it gets. The last few days I've just felt like giving up. another problem for the £2000 per week brigade solved.

[Clarebear]

It would definitely be worth splitting your dose - this may help with the palpitations. You could also not take any NDT for a day and see if you feel better or worse. If better this many indicate you ar taking too much, if worse then not enough. My last TSH was < 0.02 and my endo agreed to me increasing as ft3 and ft4 were low in range. Xx

[Schenks]

Hi, Clarebear,

just gone online as got befuddled and exhausted yesterday, so thanks and sorry for late response. It took me forever yesterday to try and work out what dose of NDT to take in order to catch up with the 3 x 5 mcg T3 and excede the 50mcg of T4 i was on, which had replaced the 125mcg Levo, as per endo instruction. Because I felt so bad on his prescription, I'd upped the dose of T3 to 10mcg (1/2 tablet) 3 times a day, and did fine for a few days before sliding again. The endo is trying to be supportive but seems very testy when challenged, however gently, and regails me with horror stories of getting things - i.e. TSH suppression - wrong. That's why he started me on 15mcgT3 and 50mcgT4. He said that the T3 is five times stronger than T4 (I have read it's 4 times stronger), so he said I'd be on the equivalent of around 125mcg altogether.

Anyway, I built up to 30mcg T3 and 50Mcg of Levo and still felt rubbish. Endo said my last T4 was low despite my T3 being high, so advised me that he's up my dose and would write to my GP to prescribe Armour, would you believe. That was last October, I've heard nothing since, so went on to NDT myself. That's why I'm a bit confused - I'm having to try and work out the dosages, upping the T4 but stabilising on T3. so far, I feel i want to get up to 3 grains of NDT - mine is 38mcg of T4 and 9mcg of T3 per tablet.

I am up to 2 tabs a day, and am splitting them into 3 doses. Heart not fluttering this a.m. - only taken 3/4 tab as opposed to 2 tabs, so the lower hit of T3 must have had something to do with it.

gosh, I hope I haven't bored you or hit you one - I'm so fed up and tired - and there's absolutely nowhere else to turn. Thank God for this site. I mean it.

Steph x

[Clarebear]

Hi Schenks - sorry only just seen your reply Hope you are feeling a bit better now? xxxx

[Schenks]

Hi, Clare - no worries, and you've been so helpful. I'm still really tired, but keep on getting a gippy tummy - diarrhea and pains and bloating, and I am becoming convinced it's wheat and gluten. but the heart flutters have gone - and the chest pains are very rare and almost negligible - it happened since I split the dose like you said, so I'm delighted and relieved. By the way, my NHS endo has given me a private prescription for Armour, for which he doesn't want paying! How about that, then!

Steph xx