Quote:
Originally Posted by bluesfan
Hi Mat52
Your neuropathy sounds like it may have developed as a result of one (or more) of the auto-immune conditions. The high ESR rate mightn't be a reflection of the SFN but more due to an AI - especially if you have something else undiagnosed going on. It'd make sense that if you have an AI condition flaring then the PN will be aggravated. ESR is a non specific test and really should be used in conjunction with other tests. But your rate is high enough that the doctors should be following it up.
http://labtestsonline.org/understand.../esr/tab/test/
From your description of your jaw symptoms I'd agree it sounds more like neuralgia than TMD - sad to say the Max Fac may not be of much help in that case but definitely worth asking as you never know what experience they have. The neuro will probably say TN and include it with the SFN.
Your neurologist may not know much about endocrinology (and vice versa in my experience) so asking them about APS will probably draw a blank look. Maybe discuss it with your GP (again probably a blank look!) but I would request an urgent endocrinology appt. I think I remember you saying once before that you're not under an Endo for your Hashimoto's - just the GP. There's some tests your GP could order beforehand. Fasting cortisol (8am) to rule out Addison's. I'm not sure what tests for the other conditions but ask your GP.
If you feel both your Hashimoto's and RA are being reasonably well managed there's a chance something else is going on. Keep searching for answers. I've known the fatigue and brain fog only too well - happy to help research for you if you don't have energy. Take care. |
Hi Bluesfan. I have just read the pdf you attached on Addison's associated with Hashimoto's. I do sometimes use the thyroid UK community and people on there have told me my thyroid bloods are out of whack and I need to self medicate with T3 or NTD. I get worried at the idea of self medicating - in fact it scares me rotten so I usually come off the community again. I've asked my GPs several times if I could be referred to an endocrinologist but they say that with my thyroid in normal range and blood glucose too they can't possibly refer me to one.
I'm really rather at my wit's end because they surely know that something is wrong with my very high ESR and huge swings in CRP. I can see then dismissing all my symptoms as being Fibromyalgia or CFS otherwise but no one is saying that to me although the GP did say he thought I was over anxious when my husband got him up to our house last week. My husband got cross and said that, in his work with the elderly in a care home he comes across anxiety and attention seeking behaviours a lot and I'm absolutely not like this. I'm 52 and I feel desperate to be well enough to get my career as an artist back on track and we want to move to the Scottish mainland and start all over with this in mind and this is a very exciting project for us both. The last thing in the world I want is to be watching my life slip slowly away in bed! But this is what is currently happening.
Why would none of these doctors be helping me by checking out my cortisol levels and looking for Addison's Disease? I could send the link to my GPs by email as I am getting my blood tested again on Monday morning in preparation for the neuro and Max fax appointments. But I have emailed both last week saying I am not happy at their advice to just "let the dust settle" after these two admissions. I absolutely do not want a third admission.
Right now I'm lying in bed at its 4.43 am. I've taken lots of the laxtulose and Senna the hospital and GP recommended I take with the Dihydrocodeine to prevent constipation. It has worked but still my stomach and lower back are hot and painful and I keep having these awful sweats/ fevers. Of course I'm at the age where everyone rolls their eyes about the sweats but I don't think they are menopausal as I'm well past my menopause now and never had a single hot flash. Like everything else including gallstones it feels a very unfortunate coincidence. Instinctively I know that the neuropathy (including mouth/ jaw pain), sweats, GI troubles, immense fatigue and high levels of inflammation are all closely linked to my autoimmune system. I don't just feel anxious I feel terrified that I will just fade slowly away with everyone shrugging and saying "let the dust settle" or thinking I am over anxious.
I've lost faith in my GPs and my rheumatologist and don't expect much of the Max Fax or the neurologist. I'm usually quite robust re tears and stuff but I did break down in hospital last Friday and the locum consultant and another lovely hospital doctor tried to console me that they would get to the bottom of it all for me - which of course they haven't. Despair isn't me but I'm too tired to fight my corner now.
I'm gluten free, take adcal d3 and was taking B12 sublinguallly but stopped because it seemed to make no difference after about six months. They did test me and, like my thyroid it was at the lower end of normal but I've read Mrs D's sticky thread and know this doesn't mean I can't have PA/ B12 deficiency. As it wasn't helping I stopped supplementing so that if I'm tested again it won't skew the results. I did get myself privately tested for coeliacs antibodies 18 months ago and though it showed I am a bit intolerant I certainly don't have full blown Ceoliacs.
I really appreciate your offer of help. I admit I really can't do the science and that's another thing I couldn't bear about the thyroid community because I an discalculaic and find all the numbers impossible but can't trust strangers to tell me what thyroid drugs to buy online and cut up and self administer. I do need advice but more the kind you are giving via the medical route than chopping up portions of T3 and using home testing kits.