It has taken me two years on Levothyroxine to realise that it isn't suited to me. Chronic lower back pain that leaves me virtually unable to move - particularly at night. And the weight gain that is static. It doesnt matter whether I eat like a king (which I don't of course!) or starve myself for 3 or 4 days. I do not lose this awful weight. Surely that is not normal? Anyway... I am moving GP this week and want to be able to ask my new GP if they would prescribe me another version of LEvo. Would anyone be able to PM me to let me know two things: First; what the alternatives could be (I have seen people talk of Armour and Synthroyd ?) and Second; if they know of a good GP in my area.
I would be really grateful.
Many thanks in deed. Shunned
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shond2015
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I piled on the weight on Levo but have lost a no effort stone since being on Nature Throid and feel alive again. Just lighter in the wallet because I have to buy it myself on line. But boy is it worth every penny!!
Oh I am so jealous.....to be able to say those words.." feel alive again" must be a dream come true. can you PM me to tell me how you buy it on line privately as I don't quite understand? You see - I have just been following the TUK link on this NDT and it seems to say that you have to have a prescription. Does this mean that your doctor is happy to write a prescription but you pay for it privately? I am desperately trying to sort something out in my head in preparation for my meeting with the GP tomorrow morning. many thanks
Hi janveron1 you comment is very interesting to me because i have put on 4 stone in 4 years plus countless other symptoms since prescribed levo , you say you feel much better since you have taken nature thyroid. My question to you is did you stop taking levo and only take nature thyroid ? If so isnt it dangerous to stop taking levo? I would love to be able to stop levo as i think it doent suit me and cant get synthroid in the uk .i look forward to yiur reply
Shond, I was in your place and for a year I had elevated liver function of unknown origin and pain. Nobody would switch me to see if it was the Levo. Finally I got a NP to do it and I feel great! No more chronic pain at night keeping me awake. I went on Naturethyroid. It is worth a try for you to feel better!
thanks for the response - Is Nature Throid NDT? are you able to give me some more information or suggest where I research it - this evening? (I have made an appointment to see GP tomorrow morning at 7.40am and need to have knowledge to give him!)
And do GP's prescribe this other drug Armour? or is this only prescribed by Endo's? thanks in advance
Synthroid is simply a brand name for a levothyroxine product. Admittedly, a product with a marketing and promotional budget higher than the healthcare budget of many nations. It is the market-leading product in the USA.
NDT (Natural Desiccated Thyroid) is a term usually used for prescription-quality products made from animal thyroid glands. All the current products are porcine. Makes/brands include Nature-Throid, WP Thyroid, NP Thyroid, Erfa Thyroid and the Thai products Thyroid-S and Thiroyd.
There are several other products which are made from bovine or porcine thyroids but, whatever their merits, cannot be regarded as prescription-quality because they do not declare their thyroid hormone content in public.
thank you for a nicely explained response Helvella - I have actually just been reading about synthroid too - just before your response came through - so it isn't syntrhoid I want as I believe Levo is causing the problems for me at the moment. With the few responses I received to my question, I think that it is NDT that might be better for me. I am now trying to get some advice from members who are on it e.g. how it works for them and how they source it - many thanks if you can help.
My lower back pain went away once supplementing a high, but safe dose of vitamin D3, (worked almost over night, though we are all different) my pain comes back if I forget to take my D3, so I know my lower back pain is down to a vitamin D problem.
An idea to get your vitamin D blood levels checked maybe ?
Hey, thanks for that thought.. in terms of getting the blood levels checked...definitely good idea. I have an appointment with private Endo - end of July and will discuss all possible tests with him then. thanks you for reply.
Remember to ask for a printout of your results, many get told their results are normal or a little low maybe, (Doctor's opinion,) double check your result out with members on here.
We were told a family member's vitamin D was a little low (by a NHS Medic) and when we checked it with vitamindcouncil.com the result was 'deficient.' so taking a supermarket low dose multivitamin suggested by the medic would not have helped get a low or deficient vitamin D level back up to normal.
if you get no luck with your Endo you can always do your own vitamin D test.
I also have chronic lower back & hip pain combined with aching legs.
Had a total thyroidectomy in 1998 and put on 225mcg of Levothyroxine until 18 months ago when I was advised to increase it to 250mcg as my TSH levels were too high.
Got diagnosed with Polymyositis 9 years ago and put on steroids but saw a different rheumatology consultant at annual review last week who is doubting I have polymyositis as that doesn't usually effect the lower back as more of an upper body weakness.
Upon finding this place yesterday I am now wondering if it is the high dose of Levothyroxine that is causing my muscle pain. Rheumatologist said they had never had a patient on such a high dose before. They took bloods to test thyroid function & also CK levels and word of a possible MRI scan & muscle biopsy for proper polymyositis diagnosis. Between finding this place and the new consultant I at last have a glimmer of hope that this pain is not irreversible.
I am learning very quickly - courtesy of this forum - that the Levothyroxine is certainly not the wonder drug that GP's seem to think it is. I was told during my initial diagnosis and subsequent prescription of Levo that all my problems would be solved. It has taken a long and harrowing journey of two years to discover and realise that I maybe not suited to this drug. The very fact that this forum enables fellow sufferers to pass on their own experiences so that individuals can either identify with/relate to or learn from is great. It is because of this forum that I have been able to deduce my symptoms may be directly down to the Levo. It certainly makes sense: before I was prescribed Levo...my symptoms were chronic fatique; little energy; feeling very very cold and sleepy; flue like symptoms; heavy perspiration at the slightest exertion and a small weight gain. since being on Levo, I have put on a further 2 stone in weight which will not shift, regardless of what I eat, chronic back pain that leaves me immobile and bloating beyond measurable preportions!! So a massive thank you to everyone who contributes something to this site
Oh well, got a letter from new rheumatologist today saying that 9 years after being diagnosed with polymyositis due to muscle pains that blood tests taken a month ago were all negative for presence of polymyositis but that thyroid function bloods were abnormal and GP informed to follow up.
Musle and joint pains have got far worse in past year or so. I'm on 250mcg of Levothyroxine and now wondering if this has been the cause of my muscle and increasing joint pain all along? Worst affected is muscles over both hips and increasingly lower back along with constantly aching, heavy legs.
Been told as I don't have polymyositis to come off the steroids I've been on to treat the muscle pain for the past 9 years but really worried pain will get far worse without them.
Don't know exact thyroid function test results. Will ask GP when he gets in touch. Should I be asking/demanding something other than Levothyroxine given muscle pain and increasingly weakness?
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