Good morning, ever since my third Myxedema Crisis of being unconscious and receiving no treatment I have very severe nerve damage. Woke up this morning and right leg, foot and arm worse than ever, makes walking incredibly difficult. Both my feet are incredibly painful and I have a real struggle to open my left eye so have to use my fingers to physically do it. Pins and needles in both hands and arms, very angry as all due to NHS negligence and ignorance.
Hoping to see my Endocrinologist tomorrow however really angry with him as he wrote to my GP stating my first bout of unconsciousness was not Myxedema Crisis but Hypoglycaemia even though Paramedics and nurses checked my blood sugar levels and all normal hence I received no insulin
Vitamin B12 and Vit D are 'pro-hormones' and have essential work in our bodies. Low B12 for instance could indicate that the person has Pernicious Anaemia - another serious condition if undiagnosed - so before taking any supplements you should be checked to ensure you do not have pernicious anaemia.
As well as B12 I'd suggest looking into your folate levels too. The body needs folate in order to make use of B12.
Another possibility is B6. Be careful with B6 though. Neuropathy can occur with deficiency AND toxicity. If you regularly take B6 either alone or in a high dose B Complex you might be suffering from toxicity. But if you haven't been supplementing at a high dose then deficiency would be much more likely.
I should point out that I suffered from neuropathy that improved when I took a high dose B Complex. I was then okay for a few months then my neuropathy started to return. I found out about the problem of B6 toxicity quite quickly and gave up the B Complex I was taking which then meant my neuropathy improved again. In theory the dose I was taking shouldn't have caused a problem, but it happened anyway. I am now very conservative with B Complex supplements, particularly in respect of the B6 dosage.
I am not sure where Endocrinologists 'learn their trade' but from your post your endo has neglected you for you to have three comas. How distressing for you.
I'd change to another Endo as I haven't read - on this forum - that someone under the 'care' of an Endocrinologist has had three Myxedema Comas.
I'd ask GP to test B12, Vit D, iron, ferritin and folate. All have to be optimal.
UPDATE Jackie has had three strokes, one probably overnight which caused the nerve damage and two further ones during today. Was taken to A&E and after several tests being transferred to Stroke Unit in another hospital. It is strongly believed that very severe hypothyroidism is the cause. Jackie asked me to warn everyone of the serious consequences of untreated hypothyroidism. I am David, Jackie's husband
I hope you complain about her treatment by the NHS and I know you won't want to at first but please do lodge a complaint because they need to be held to account. Tell her I am thinking about her xx
What an awful experience and we do expect all doctors to be knowledgeable but, especially the experience you and your wife have gone through it is absolutely horrendous. It's not as if problems with the thyroid gland are rare.
In the past all doctors knew all the symptoms of hypo or hyper and prescibed what was necessary, i.e. NDT for those with hypo (even on a trial basis) and it was all decided by the clinical symptoms alone - no blood tests then and all doctors were knowledgeable. Since 1892 we didn't die an awful death but I think I'd complain to your local MP as it is unbelieveable what the whole family suffers but especially your poor wife.
I think your experience should be published. How many people are diagnosed with something else altogether - the patient being too unwell to know where to turn to next. I also think you should take further action somehow.
I had to diagnose myself and by that time TSH was 100 and doctor had just phoned me to tell me all the tests (23 of them) were perfect and I shouldn't worry. Thankfully I had already requested a another test form (as I was away from home) be left out for me. I got another blood test and lab phoned surgery to enquire why I hadn't been prescribed. .Another GP phoned to ask who had given me the form and I said 'I did - Just as well as I'd have been in a bad state as I couldn't get out of bed.
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GP has reduced my Thyroxine dose.. Please advise…
Has anyone here dealt specifically with a) facial myxedema and b) normal labs so likely thyroid hormone resistance. 
Long term hypothyroidism cause damage? 
Myxedema Madness - Systematic literature review of published case reports 
