[MAT52]

Hi All. I've been moving location and haven't had time to post here for a while. But it's the early hours here in Scotland, a mild night, and I'm awake with hands and feet in the usual hell of scalding pain. I've yet to receive the letter from my new rheumatologist but I'm anticipating that he too takes the wait and watch approach as the last one and my old neurologist did.

This thought came to me last night but I lack the courage to act on it. Maybe the Levothyroxine 100mcg that I've been taking for over ten years for an under active thyroid, could be the guilty party? The only other drugs I presently take are Lansoperasole, Prednisolone 2mg, which I'm to taper off by Christmas - and newly on a drug for my high blood pressure, Ramiprole.

I've had this parasthesia in my peripheries for over two years now and it's affecting my gums and lips badly now too. Nothjng has shown up in nerve conduction or skin biopsy tests and only paired Ogliclonal bands in lumbar puncture. I have seen the dentist who found a gum infection but nothing else untoward. I've seen the optician who found a flame haemorrhage in one eye - indicating high blood pressure. I've had a carotid duplex which showed calcification of all my carotid arteries - but told this is "normal" for my age (52). I've had EEG, autoantibodies checked and all normal or equivocal. My B12 has been within normal range and I've tried supplementing previously and it's made no noticeable difference.

This wretched affliction is now in my gums of front teeth as a kind of burning mouth syndrome and feels tight all around my teeth and lips.

Given that I'm terribly drug sensitive and have always suffered from allergies I have occasionally wondered about the Levothyroxine being the problem. But then I think no surely not as it's just a synthetic replacement of the real thing isn't it?

So tonight I'm going to try not taking it and see if this makes any difference. I'm aware that my body needs thyroxine to function but surely a week or so off it won't harm? I have an appointment to see a new GP on Tuesday morning so if it has made this awful pain and discomfort stop at last then I plan to ask him to let me try an alternative such as T3 or natural desicated thyroxine -NDT. It's unlikely that i will persuade an NHS doctor to put me on this natural form of thyroxine - and maybe it will affect me in the same way or possibly even worse. But if I don't get to the bottom of this problem soon I fear I will end up giving myself a stroke or heart attack from the anxiety, insomnia and stress it causes me day in day out.

Does this plan make sense to anyone here? Has anyone else found that thyroxine has given them widespread SFN like mine?

[en bloc]

I have never heard of thyroid medications causing PN/SFN, but I have heard numerous people on the Sjogren's forum say that hypothyroidism itself can cause neuropathy. So have you considered that it is the condition, not the treatment, that may be your problem? This might be a good question for your next appointment with the rheumatologist or neurologist.

I'm not sure about your plan to just stop your medication for a week or so. I am NOT well educated on thyroid issues, but know there is something called a thyroid storm when levels get out of whack. But it could be when levels get too high, not too low. Either way, you should do some research about stopping (suddenly) first, for the best results.

I would also think that logically it would take much longer than a week or so to know if it will help. If you have nerve damage, then it could/would take months or more for nerves to heal and pain to go away. Just a thought.

[caroline2]

I struggled with HypoT for a lot of years. I have a post on the General Health area that I started today. I never heard of thyroid support causing Nerve Damage/Pain But as the previous poster said could be the condition and not the medication. Or, if you have been taking Levo for 10 yrs, maybe you are not on the correct dose, etc. I know I never did good on Levo and for me desiccated support is what I started with in 2002, tried the synthetics a little bit and went back to desiccated. Over the years from 2002, my dose was changed and today I take 120mg of NP thyroid, the generic for Armour.

Being in the UK, I don't know if "natural" thyroid support is available.

Also, you may not be converting T4 to the T3. Many people don't.

Having had allergies all my life until 1995 when I found OPC's: pycnogenol and then grape seed extract...allergies are history. 20 yrs on OPC's.

[Neuroproblem]

Hypothyroidism is known cause for PN, the hormone usually replaces your thyroid levels

[MAT52]

Originally Posted by en bloc

I have never heard of thyroid medications causing PN/SFN, but I have heard numerous people on the Sjogren's forum say that hypothyroidism itself can cause neuropathy. So have you considered that it is the condition, not the treatment, that may be your problem? This might be a good question for your next appointment with the rheumatologist or neurologist.

I'm not sure about your plan to just stop your medication for a week or so. I am NOT well educated on thyroid issues, but know there is something called a thyroid storm when levels get out of whack. But it could be when levels get too high, not too low. Either way, you should do some research about stopping (suddenly) first, for the best results.

I would also think that logically it would take much longer than a week or so to know if it will help. If you have nerve damage, then it could/would take months or more for nerves to heal and pain to go away. Just a thought.

Thanks Enbloc. Sorry I'm moving around Scotland just now and having great difficulty logging in.

As usual your brand of wisdom has stopped me in my tracks - and what others here say supports the idea that it's my thyroid disease that may be the problem rather than the drugs. Unfortunately my old GPs were not receptive to the idea that this parasthesia has anything to do with my thyroid problems, which the feel are adequately controlled presently. I haven't the energy to keep fighting doctors about this and not do I want to self medicate so it's a question of working things out for myself a lot of the time and then trying to negotiate. Many thanks, Mat

[MAT52]

Originally Posted by caroline2

I struggled with HypoT for a lot of years. I have a post on the General Health area that I started today. I never heard of thyroid support causing Nerve Damage/Pain But as the previous poster said could be the condition and not the medication. Or, if you have been taking Levo for 10 yrs, maybe you are not on the correct dose, etc. I know I never did good on Levo and for me desiccated support is what I started with in 2002, tried the synthetics a little bit and went back to desiccated. Over the years from 2002, my dose was changed and today I take 120mg of NP thyroid, the generic for Armour.

Being in the UK, I don't know if "natural" thyroid support is available.

Also, you may not be converting T4 to the T3. Many people don't.

Having had allergies all my life until 1995 when I found OPC's: pycnogenol and then grape seed extract...allergies are history. 20 yrs on OPC's.

Thanks for your advice and for telling me your experience. Unfortunately natural alternatives and T3 aren't usually prescribed in the UK. I did once get my thyroid antibodies and free T3 checked. My abtibodies confirmed I have Hashimoto's bad my T3 was middle of normal range, TSH suppressed AdCal FT4 low within normal range. I may have to try and find a naturopath (functional?) to get myself checked out and treated with the right suppliments.