unable to tollerate the NHS prescribed Levothyr... - Thyroid UK

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unable to tollerate the NHS prescribed Levothyroxin brands, is there an alternative?

2legs profile image
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hI, ALL, Been on levothyroxin now, some time at 75 McG, and I've tried about five differnt brands, was doing OK on Mercary pharma, but now they're rejecting me also, and making me more ill than well; I've ceased taking them again, and I'm feeling 100% better, but I know my bloods show I am defecient in thyroid meds. I'm secondary hypothyroid, as I have panhypopituitarism, and also take growth hormone, testosterone IM injections every 8-12 weeks, and I take prednisolone instead of hydrocortisone, as my body was unable to tollerate hC. I also take melatonin (serkadian non-24 due to being blind). I'm seeing my endocrine consultant tomorrow, and as far as I'm concerned this will be last ever app if they're as unhelpful as they useually are; I cannot tollerate levothyroxin, if its the fillers/extra agents in them, then I react the same to all generic brands I've tried so far 9about 6 brands I've tried), but as the fillers are things like maze, starch, lactose, I'm confused; I don't react to any of them in food. So I assume I just can't tollerate the synthetic levothyroxin itself; I can't figure out what actual alternatives there are, availible on the NHS in the UK, so basically, are there any alternatives? and what should I ask the endo to do; they do monitor my free T3 and T4, though they ignore the guidelines, and say my levels are fine, just because I'm in normal range; they don't appear to realise that as I'm secondary I have to have levels up to top third or top half of normal range- I've got a biomedical background myself and I'm astonished at the gross deralection of profesion demonstrated by all endocrine Drs I have seen, and if tomorrow doesn't go well, my only choice I think is to submit official complaint, and get me a solicitor. - when I reacted so badly to HC I eventually attempted suicide, and only then did they 'notice' all the bad side effects I'd been getting on the medication, I don't really want a repeat of that to happen, as I was quite close to dieing. (the HC made me hallucinate, made me suicidal, gave massive fatigue, diarrhea, etc., etc., muscle weakness, etc), the levothyroxin side effects I get include; extreme fatigue, brain fog, cognative deterioration, diarrhea, painful burning sensations on passing stool, no feelings in my lower limbs (returned in a day to being able to feel my legs after stopping the levo), brain fog, muslce pain, joint pain, etc, which are just unaceptible side effects for me. thanks for the help if anyone has any .

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Clutter profile image
Clutter

2Legs,

Which of the four brands below available in the UK have you tried?

Mercury Pharma 25, 50 & 100 mcg

Actavis (also known as Almus) 50 & 100mcg

Wockhardt 25 mcg.

Teva 12.5, 25, 50, 75 & 100 mcg. Teva is the only lactose-free make.

LAHs profile image
LAHs

I did very well on a brand of Levo for the first 5 years after my total thyroidectomy, and then they (Forest Phama.) were bought out and they discontinued that brand. It took me about 2 years of messing around with 3 - 4 other brands at different doses - waiting a couple of months between changing the dose and having the blood test - which seemed irrelevant since I didn't feel well and so in no way would I stay on that brand or that dose. My solution was to change to an NDT. I switched to Armour and never looked back. It might take you years to get another brand at the right dose and all the time you could feel ill. My advice? Don't waste too much time with the numerous combinations of brand and dose, get on NDT, that gives you the lot (and more that we don't understand). The only variable left then is how much to take - and that is relatively easy, you start low and increase slowly until you feel well.

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