Hello All. Blood tests in April showed a positive ANA (titre 1:40 homogeneous pattern), which my GP ignored. Another ANA test done by the gastrologist a few weeks ago also showed a positive ANA (titre unknown, waiting to go for full results). The gastrologist has written to my GP asking him to refer me to a rheumatologist and I am going to see him today to follow up on this.
Bloods for TSH in April were 1.1 (0.30 - 5.00 min/L). I am aware that this is not a very accurate test.
I'm still struggling with B12 (it appears to have stopped working) and it looks like something autoimmune may be going on but because of the cross-over symptoms, it's quite difficult to sort out exactly what!
My questions are: would it be reasonable and appropriate to ask my GP to run a full thyroid screen and a full adrenal panel? And is there anything else that I could reasonably asking him to test, prior to further hospital appointments?
Many thanks
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Foggyme
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I think that considering all of your symptoms and the pain you've been in, it is more than reasonable to ask for a full thyroid screen, adrenal panel and anything else he's willing to test. Are you still injecting b12? I would also ask for MMA and homocysteine, as you still have symptoms. I'm not sure if high levels of b12 will impact on these, but if it's anything to do with functional deficiency I would have thought they'd still be high.
I'm so sorry you're going through this Foggyme and I hope you get some answers soon.
Hi with attitude...many thanks for your quick response.
First, yes, still injecting B12, but any improvement is only very minor. Now thinking of reducing the dose to see what happens....if that fails I'll do what Gambit did and try nasal drops. It's a minefield isn't it....more or less B12 is a tricky question, especially with increasing neuro symptoms!
I'll go ahead and ask for the full thyroid and adrenal panels, but whether they agree remains to be seen. Sometimes I just can't fathom how a GP can see a patient reduced to the point of near collapse on a daily basis and not want at least explore all the options! In fact, do anything at all!
If I have no luck with the GP, I'll get the tests done privately but my goodness, this is getting expensive!
I saw a neurologist recently and he has done MMA and homocysteine....(and a head / spine MRI) so just waiting (and waiting) for the follow up appointment.
And good idea about the genetic screening. Funnily enough, I'm going to Leeds tomorrow to see a functional medicine practitioner and that's one of the things I'm going to explore.
Anyway, thanks for your advice...I'll let you know how the GP responds!
I went to see a private GP, who does all my tests through the NHS. When I thanked him, he said I was entitled to care. He's lovely, doesn't have a clue what's going on, but he cares. I wonder if you could find someone similar. Hope your appointment goes well on Wed. It might be worth a call to your neurologists secretary to see if they have test results back. I so want us both to find an answer.
Oh yes indeed...me too! I think I'd love to have a GP who cared...even if clueless...at least there would be enough interest to try and find answers (if there is any such thing!).
Will chase neuro next week if I haven't heard anything.
I'm not a whimp but oh how I hate going to visit my GP 😖.
Hi Withattitude. GP done! Discussed positive ANA and yes, definitely something going on with autoimmune system. Quite funny really 'cause as I went through list of test I wanted him to do, he went sort of 'blank'. It was only when I said that this had been going on for 16 months and it was time to start ruling things out that he decided to refer me to both a rheumatologist and an endocrinologist...so, good out come. I'll get the tests I need...just have to wait a little longer!
I did laught at myself yesterday...having posted the question, I knew what I would have replied to anyone else posting the same question....but I'm just such a wuss when it comes to myself!
Thank you so much for your support...kept me strong in the face of resistant GP 😀.
Hello there. So glad you got a good outcome from GP. I got my genetic test results and I do indeed have a problem with processing b vits. Not sure where this is going to lead, but will let you know. I hope you have a really good meeting this afternoon. Functional medicine rocks in my eyes and do keep me posted. I'd love to know how you get on.
Hi Ndoge and bless you...feeling like a million bucks would be marvellous...stat or otherwise 😀.
GP done. Eventually agreed to refer me to both rheumatologist and endocrinologist (see reply to Withattitude, above).
Yes, the B12 was helpful for first four years...though like many, I never had enough and always ran out about 4 - 5 weeks post jab and limped along until the next one (what a familiar story).
Strongly suspect that something else is going on in the autoimmune department so hopefully endocrinologist and rheumatologist will come up with something...not so much botherd about getting a 'label', just something that will point to a way of getting these nasty little symptoms under control (another familiar story).
Off to functional medical practitioner later today (3.30 over the pond time) so very interested to see how that goes. I suspect (know) that she is more knowledgable about all thing B12 so will be very interested to see what her take on this is (incidentally, she was one of the speakers at the B12 conference at Loughborough University, this summer).
This is a long journey, I think. Feel like I've been standing at the diagnostic bus stop for far too long...what's the betting all the busses arrive at once! Or at least, here's hoping...
Take very good car Ndodge and I'll let you know how it all goes.
Loved the line about the diagnostic bus stop! May all the buses arrive in good order to take you on the road to recovery- hopefully an express bus
I'm so hoping the Functional doc can help you feel better and get to the bottom of this! You must have seen her by now with the time difference. Its very impressive that she was a speaker at a B12 conference- hope you come away with loads of good info and some real help!
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