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Old 06-22-2015, 12:25 PM #1
MAT52 MAT52 is offline
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Originally Posted by janieg View Post
Have you at any point looked into or considered HRT just to see if it might help?
That is a good point Janeig - I have asked several times but my doctors refuse because they say that there are risks associated with HRT and that my problems aren't directly related to hormones. I was through my menopause when I was 48 - no real symptoms apart from periods stopping and a very high FSH reading that told us that I'd come out the otherside. Same goes for switching to natural dessicated thyroxine rather than the synthetic version as I've asked about. I don't want to self medicate but I often wonder if the fillers in the Levothyroxine mightn't be a contributor as I've been taking it for about 14 years now. Same also goes for B12 injections because my serum B12 is under 500 - but they say it's still well within normal range so I just take sublignual B12 and it makes no difference to my neuro symptoms.

If any drug has brought this on in the form of toxic poisoning I think it is probably Hydroxichloraquine or possibly Methotrexate - or perhaps the combination of both. I did read an article in a reputable medical journal (BMJ I think) that said Hydroxichloraquine can occasionally cause severe neuropathic symptoms that can even lead to irreparable paralysis and I took it for 18 months.

Eventually I realised it was responsible for anaphylaxis that was making my face very painful and swollen and I stopped but it could have been the culprit because the dates fit. I don't think the methotrexate caused it and I have to say that these hot flushes started in my wrists and up my arms when I was still perimenopausal a long time ago - before the RA started attacking my joints. They wereren't unpleasant - just weird - but this points to a hormonal element I suppose.

But as Enbloc confirms - if it were all due to hormones or toxicity then it wouldn't explain why the pain goes when I'm on a higher dose of steroids nor why my ESR fluctuates according to the level of nerve pain I'm experiencing.

So I have to trust that my doctors are right about HRT etc but always mindful that they might not be!
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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janieg (06-22-2015)
Old 06-22-2015, 12:41 PM #2
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janieg janieg is offline
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So I have to trust that my doctors are right about HRT etc but always mindful that they might not be!
I'm becoming highly skeptical of the knowledge of doctors.

I strongly suspect that there's a hormonal component to my problems, maybe not the direct cause, but contributing somehow. So many bizarre things are happening, and the more I learn about the effects of out-of-whack hormones, the more I understand how far-reaching they can be.

Anyway, just a thought from one woman desperately seeking a cause to another.
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Old 06-22-2015, 12:43 PM #3
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I'm becoming highly skeptical of the knowledge of doctors.

I strongly suspect that there's a hormonal component to my problems, maybe not the direct cause, but contributing somehow. So many bizarre things are happening, and the more I learn about the effects of out-of-whack hormones, the more I understand how far-reaching they can be.

Anyway, just a thought from one woman desperately seeking a cause to another.

Taken entirely in the spirit it was intended Janieg - we "idiopathic" people need to stick together. I do basically agree about the hormonal component. Too many coincidences otherwise and unlike my doctors I don't believe in coincidences much! X
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