I’ve popped over from the thyroid forum for a bit of advice. I apologise for the novel I’m about to write!
A bit of background first. I was diagnosed with Hashimoto’s in Feb this year with a tsh of 147 and along with that Vitamin D deficiency, low folate and iron deficiency anaemia although at the time my B12 was in the high 600’s. I was given thyroxine and until August time I plodded along taking the drugs and supplements including sublingual b12 and a b complex gradually getting a little better and realising how bad I felt before.
I have had peripheral neuropathy for about 6 years but as I had guillaine barre syndrome(also an autoimmune condition) 20 years ago. This affects every nerve in the body so I put this down to this although I know realise my thyroid had slowly been dying for years.
This as well as brain fog, numbness in my lips and nose, tingling everywhere and fatigue have never really gone away and more recently I’ve developed constant nausea, and have zero appetite resulting in losing over 3 stones in weight. I need to lose it having put on a LOT of weight in the 4 years it took to realise I needed to ask for another tsh to be done after accepting that a tsh of 6.5 was normal 😡 but not in this way though!
I’ve been taking Liothyronine as well as thyroxine for about 2 months and I feel a little better but I’m now absolutely text book perfect with my thyroid bloods. I’ve had bloods for just about everything, a short synacthen test, abdo and pelvic scans, a brain mri, an endoscopy in the summer diagnosed gastritis and a hiatus hernia but the nausea and loss of appetite developed a month or so after this. I’ve been seen by gyne, endocrinology and gastro and my gp is now at a loss as to what to do.
The ONLY thing I can think of is that as my recent B12 came back at 550 so it has dropped despite taking high dose sublingual B12 as that pernicious anemia might be the culprit?
I have taken ppi’s for a number of years due to severe reflux which I know isn’t ideal. With the GPs supervision I’m hoping to come of them slowly but we will see.
I’m now getting pretty desperate as the constant nausea in particular is exhausting and I appreciate using guidelines I am well within the normal range but could this be my problem?
Is it worth getting a private test for active B12 or intrinsic factor done or am I just wasting my money
Sorry if I bored anyone x