Used to be on 125mcg Eltroxin then not available. Swapped to MP levo. After extreme reaction to toxic MP Levo stopped. Saw useless Endo....posted this.
Anyway, have sourced Armour and started on 1/2 grain for 2 days then up to 1 grain split dose. After 3 days started to feel a real mixture of hypo and hyper. Sweaty, especially palms, gone from sleeping very well to only 3-4 hrs a night with early morning waking. I had a TT when 18 and have never had T3 before.
Are reactions like this normal starting out on NDT and how slowly/quickly should I increase, or is it just not agreeing with me. I have put so much hope on NDT because I really can't take any of the synthetic T4's and if this doesn't work out........?
Thanks in advance for any help.
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Flatfred
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I found it best to stay on the same dose for a few weeks before upping it. It is a slow process and i felt better, worse, then better. It took about 4 months tosettle on a dose
You have had a TT and your levo was stopped? I would get a lawyer and take the NHS to the cleaners! Your doctors appear to be trying to kill you. I'm just hoping I've got the wrong end of the stick about this...
You don't say how old you are so I don't know how long it is since your TT. But if you have been on T4-only for some time then your adrenal glands are probably functioning poorly, and you could well be suffering from multiple nutritional deficiencies. You might also not be converting from T4 to T3 very well, and you might have high levels of reverse T3. I realise there are lots of ifs, buts and maybes there, but it isn't a simple subject.
If you could get a full thyroid panel that would be good - Free T4 , Free T3, reverse T3, TSH, thyroid antibodies. You are unlikely to get reverse T3 tested on the NHS - I doubt many doctors have actually heard of it.
I would suggest that you do an adrenal saliva test as soon as possible, then post the results here for comment. The NHS doesn't "believe" in saliva testing for cortisol levels, but the FDA in the US does (if that helps). I did this one :
You also need to get the following tested - your doctor might (or might not) oblige - you might need to either fight for the tests or pay for them yourself.
But for your body to be able to use NDT properly you need to have at least started to fix any nutritional deficiencies and you also need to get adrenal glands fully supported. Once the correct supplements are in place then your NDT will start to benefit you rather than make things worse. And it will be worth all the effort!
Ok. My case is far from typical...but here goes with the bare bones. I'm 60yrs old. I had a total thyroidectomy when I was 18. I was diagnosed as having Graves when 16. Ok, this is when it gets interesting! After the TT I HAD NO REPLACEMENT HORMONE THERAPY FOR 18 YEARS ! Nothing! Apart from a minor post op complication, rejecting internal stitching, I was never followed up! During the 18 years with no thyroxine or anything else I never gained weight or ever showed any typical symptoms of being under active. I did start to get some terrible headaches. There's more, but basically I was working in Oxford when an increase in the headaches, which were strange in that they were cyclic, every 6-7 days like clockwork. Somebody finally thought to do a blood test, when it was discovered that my TSH was in the words of Dr Burke (I think,long time ago) 'your TSH is immeasurably high, off the top of the scale at 150+'. I was started on large dose of levo, don't remember how much. After bad reactions to just about every different brands of levo on the market I was finally put on Eltoxin. I was unstable in that I constantly fluctuated between high and low TSH levels but it was tolerable, although I have never felt 100% the headaches reduced but do return from time to time and are always related to changing levels.
With Eltoxin no longer available I just don't know where to go from here if the Armour doesn't work out.
There's more. I stopped the MP levo after serious adverse reaction, like I'd been poisoned...but this is well reported on here already by me and others. I advised my GP who immediately referred me to the Endo, and I've already posted on here how that went!!! When I saw the Endo I advised her I had had no levo for 5 weeks. She said leave me for another 4 weeks and then do a blood test. She wrote to my GP saying she would see me In 4 months ! My GP was not happy and has agreed to go for a second opinion and is to refer me out of county to Oxford. So as far as Endo goes I would effectively be going for 5 months with no meds till see again!!!
I told GP of starting NDT and he's behind me 100% and said if it works out he will look into prescribing it.
But I'm not getting on too well with it so far.
Over to you helpful people :0)
After the problems with Armour a few years ago I changed to Erfa thyroid.
I have been fine since.
If your GP is agreeable, you are able to have Erfa prescribed by the NHS on a name patient basis only.
Have you been to the thyroiduk.org website. Masses of information here.
Bluedaffodil is correct. Do start with a small dose for a few weeks and then gradually increase your dose.
Has anyone checked to see whether your thyroid has regrown? It does happen with Graves.
I suspect you may have increased the NDT too quickly initially. Your body has learned to cope without thyroxine and it may have been a shock to be flooded with hormone when it was used to a starvation diet. Can you go back to 1/2 grain and let your body adjust for a couple of weeks before raising it?
Yep, Dr Burke said I was a medical miracle too! He couldn't understand how on earth I was still functioning, at quite a high level too I have to say lol. He diagnosed nodules of the pituitary gland, now known as TSHoma. I only weighed 9.5 stone the whole time till I hit 40! And rarely slept for more than 4-5 hrs a night max. There's more to the picture but that'll do for now lol. And no my thyroid hasn't grown back, according to the Endo I saw a couple of weeks back.
Yep, thanks everyone. Prob little doubt that in my haste to feel better I up'd it too quickly.
Funny tho' that the best I've felt in years is after I'd stopped the levo for 2 weeks and was on nothing. Oh how good I felt for approx 10 days !
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