New here - any help/advice would be very gratefully accepted!

[melodypond]

hello there

I apologise in advance and say thank you to anyone who takes the trouble to read this.

My history is quite a long one going back around four years. But in essence after many symptoms and an ANA test that came back positive (and I asked for) I was sent to a rheumy who investigated me for lupus (I had redness across my cheeks and nose which is what convinced me it was lupus). All the tests came back negative and he diagnosed Fibromyalgia.

however I have always believed that my fibro was caused by something underlying. I have had tests for thyroid which have all come back negative but while investigating that I came across B12 deficiency (as many symptoms are shared with both hypothyroid and fibro) and in turn pernicious anaemia.

what has led me here is some recent blood tests I have had back. When the rheumy diagnosed fibro I have very elevated liver function tests including a bilirubin of 29. He referred me to a heptologist who took lots more bloods. Mostly they have come back normal except for the first three listed. That is how I ended up here - serum folate assay elevated with elevated bilirubin and cholestrol plus B12 at the lower end threw up PA. Can you please take a look at my results - would be great to know if I am barking up, yet another, wrong tree! thanks MP X

Bilirubin 23 (0-22) - it has fluctuated from 23 - 29 on a few different tests.

Serum Folate Assay >18 (3.0 -16)

Cholestrol 5.2 (0.00-4.0) - this is despite a very healthy diet and does worry me

Serum Vit B12 362 (150 - 900) so in normal range but I believe optimum should be 500??

MCHC 35.5 (31-36.5) - again in range but near the higher end.

MCV 84 (80-97)

HCT 0.392 (0.370 -0.470)

Platelets 266 (150-400)

Haemoglobin 13.9 (11.5-16.5)

Red blood cells 4.66 (3.80 - 5.80)

Red cell folate 327 (200 - 600)

Iron 14.9 (7 -29)

Serum Transferrin 2.84 (2.00-3.60)

Iron Saturation 20.9% (15-45)

Ferritin 21.7 (7-90).

[B12Turbo]

Hi Melodypond

Looking at your bloods, it appears that apart from Cholestrol, your in pretty good shape, but then if you are still worried. might I suggest you contact Denise O'Blein at Guy's / st thomas's Hospital on 0207 188 7188 and ask her advise, these people have a full team dedicated to this very subject and I have no doubt they will do all they can to help you. They are also the only people i know of that can provide you with reading for bot your HoloTC (Active B12) and if necessary carry out the MMA testing.

Good luck, hope they can put your mind at rest and you soon feel better.

[Hidden]

Hiya, I would say that your ferritin is on the low side. This, in addition to your low end of the range for MCV, suggests you could have some iron anaemia going on. In fact all your iron tests are lowish end of the range.

Did you have full thyroid function tests done or just TSH?

I agree with Melodypond that the Active B12 test might be useful for you, here's a link you might find useful:

thyroiduk.org.uk/tuk/testin...

[melodypond in reply to Hidden]

Thanks for your reply.

Yes they are all a little low. Have gone back to my GP (well the nurse practitioner as she is more approachable and willing to listen) and mentioned about Vit B12 deficiency. I had a phone conversation with Dr Chandy who thinks it could be a real possibility, so felt a bit more empowered! She was very open to the theory and is running more tests - FBC, cortisol, B12, IF, Parietal cells, iron,TFT, etc. I said if they come back 'normal' would she be willing to perhaps trial me on B12 injections as she acknowledged that they are all pretty unreliable tests, including the thyroid ones. If the practice won't allow me (I suspect she would have to refer a trail upwards if my tests are 'normal') then I will ask for a letter to obtain the active B12 test. Will see what happens!

MP x

[Hidden in reply to melodypond]

Sorry, meant to say I agree with B12Turbo, brain fog moment!

That's great MP, gives us all hope that there are people out there who do care and are willing to listen