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.

And--what do you mean by "intolerant"?
 

What lab tests did you have for gluten sensitivity/celiac? (I assume you haven't had a full endoscopy of the small intestine, which is the absolute gold standard for celiac diagnosis, assuming the samples are done right and there are enough of them . . .)

I ask because as I read this it certainly sounds like that could be involved here--gluten sensitivity can present with neurologic rather than gastrointestinal symptomology (ataxia, neuropathy)--and autoimmune conditions often come in clusters.

By the way, someone in your situation should probably have been screened for antibodies to nerve as well as the standard ANA-related antibodies:

http://www.questdiagnostics.com/test...lNeurop#Immune Mediated Peripheral Neuropathies

It's so strange how every doctor has such different opinions in their treatment plans. In my case I was given IVIG, plasma exchange and rituxin, the IVIG was considered first line and least dangerous. The immune suppressors (imuran, cytoxin etc) were considered the "big guns" in the opinions of all the doctors I saw.

I just noticed in one of your new posts.... that you are an artist?

May I ask what you do and what you use?

Have you had your iron level checked recently? My doctor was quick to blame vertigo/dizziness on the neuropathy. I think sometimes when we have something like this it's hard for the doctors to look past it and they forget the simple basic things.
In my case my iron was extremely low. I noticed a huge improvement in my vertigo/dizziness symptoms after a few months on iron supplements.

Thanks but definitely not low iron - I eat very iron rich diet (although appetite very poor because of lack of smell or taste or ability to chew!) and my haemoglobin has been checked weekly since the Imuran.

Glad yours was easily resolved by iron supplements though.

thanks----wish the simple fix like iron supplements would have done something for the neuropathy!!! ...but nope, only the dizziness :( hope you get some answers and help soon

Well that is interesting Northerngal. I am guessing you aren't in the UK? For my body the drugs I've tried so far eg Sulfasalazine, methotrexate (both oral and injectable), Hydroxychloraquine and then Imuran have certainly been big guns!

And many RA friends have tried and failed to tolerate or improve on these first line disease modifying antirheumatic drugs and yet have tolerated and improved with the biologics further down the line.

So despite the doctors saying "big gun" in terms of tolerance what they actually mean is big gun in terms of expense to the NHS. I'm sure the same cost indications generally apply all over the world though. So maybe it is just the term "big gun" which is used properly wherever you are ie big gun to the body's tolerance levels rather than big gun to the tax payer/ health insurance companies!? Mat x

Methotrexate and sulfasalazine both deplete folate. Did you supplement this?

When people end up here, with dead ends from doctors and lots of time spent with little improvement, it is time for the DNA testing for methylation errors.

MTHFR mutations are common and if one is heterozygous for them, they manage for part of their lives at substandard levels, and finally crash when aging.

23andme is one OTC affordable place to get tested. I'd seriously consider it.

Once you get that gall bladder out, you might feel much better.
A low grade infection with inflammation there can make one very ill.

I am still curious if your art activities are exposing you to some toxin...pigments, solvents?