I know I haven't posted for a while but I have rather a lot to contend with and I've been trying so hard to help myself but I'm in so much pain now and feel so worn down with everything.
Recently I had a positive tilt table test and got told I have reflex syncope. It's caused by a dysfunction of the autonomic nervous system. No cures, no medication, just drink more water and avoid the situations that trigger this off....like standing in queues etc. Although I can walk, I am told my body cannot tolerate 'standing on the spot' for longer than 10 minutes at a time, otherwise I will probably pass out or nearly pass out.
My neurologist informs me the unbearable pain in my feet and legs is peripheral neuropathy and I am currently trying Tegretol. It's mildly helping in the daytime but not touching the pain at night yet. I've been given no guidance on titration for this medication and my next appointment for the neurologist is not for 8 months.
After reading about B12 deficiency, I fought to have the injections to see if that might help. I had them in the end, every other day, for about a month and that didn't help either.
Yes, I have had Type 1 Diabetes for about 12 years but I make sure I look after myself and don't let my blood sugars run high, so am devastated to be told I have two types of neuropathy.
I am on Levothyroxine for my Hashimotos and I asked the endocrinologist if he might check my T3 as I'd read about conversion problems but he refused to check that as he says the Levothyroxine is doing its job. My last TSH reading in the summer was 1.94 and my T4 was16.4.
i was actually stunned when this endocrinologist discharged me from his care because he felt I was 'normalised' with treatment. I guess the fact he feels the neuropathy is simply down to my diabetes and not treatable in his eyes and the fact I may have thyroid cancer (having yet another biopsy next Friday as last ones show cells had changed but the cancer specialist said it was too risky to take me into theatre with all my other problems, especially autonomic neuropathy) is of no interest to an endocrinologist!!!! I actually wouldn't want to see this useless man again but for him to leave me without an endocrinologist when I feel I most need one leaves me speechless.
When I told him the Thyroid Uk website recommends testing T3 he said 'Thyroid Uk have it wrong'. I left his office in tears, feeling so let down.
Months back I got the list of more useful endos from Louise Warvill but there are none round here and because I now have this standing problem, I don't think I could tackle waiting for tubes etc in London.
My nutritionist who has been so helpful, has suggested I get tested for Lyme Disease, as my problems all started at Center Parcs, just over two years ago. I did have the NHS Lyme test that came back negative then but she says the NHS Lyme tests are rubbish, so wants me to have a foreign one that is very expensive and I do think it might be worth just ruling that out.
Yes, I had Glandular Fever last year but recent re-testing for that shows that has now thankfully gone. (Well, I don't think you ever lose G.F. But I think they mean is not active at the mo').
The pain in my feet and legs is driving me crazy and I can't bear the thought that this is how my life will be now. I'm terrified this will be a precursor to amputation and I 'assumed' if I looked after my diabetes, I could avoid such things. It's hard to learn it doesn't necessarily follow.
I love our house and its location but hubby and I have been looking at bungalows now, rather than leaving it until I'm not up to moving but in all honesty, I can't face moving house right now.
Can somebody please give me some positive thoughts to take away from all this.
I have stuck some motivational statements to the inside of my kitchen cupboards and am forcing myself to try and keep doing some walks but some days it's just hard to stay positive.
Sorry to go on.