Could I have PA?

[Gymbabe]

Been to see my GP for my VIT D blood test results, but my Rheumatologist does not seem to have done them, but he did do an another test, I understand that the normal result is 50-150, but mine was 50, my Rheumatologist wants me to have it retested in early Jan.

A search online took me to the PA society and this forum.

I have been ill for nearly 5 years and seem to have nearly every symptom on the list, the only thing I don't have is weight loss!

I have Nuerological symptoms and have had 2 x MRI's as MS was suspected, connective tissue disease and most recently Lupus.

But surely I would have been tested before?

My iron levels have always been low and I am always so cold, people always comment on how pale I am, but I have always been.

[fbirder]

It certainly sounds as if you may be deficient in B12, possibly for many years. I would see my GP ASAP and ask them to start me on a course of B12 loading injections, three a week until symptoms stop improving, then every two months for the rest of your life.

If you don't feel better after a few months (you may feel slightly worse at first) then you probably aren't deficient. If you do feel better - whoopee. Then it's time to find out what caused the deficiency - testing for anti-Intrinsic Factor antibodies will be a start, although the test will produce false negatives about half the time.

[Gymbabe in reply to fbirder]

Thank for your reply.

Do you think I'm in my right to ask for the injections, when the consultant has asked for it to me be retested early Jan?

I have read that anticonvulsants can cause low Vit B12, I am on 2 of these, but for nerve pain?

Do I just say I have seen the results, spoken to someone and they have said I need the injections?

[fbirder in reply to Gymbabe]

I don't think anticonvulsants cause B12 deficiency, otherwise they wouldn't have prescribed them to me for my nerve pain.

If you need to take something like Gabapentin for your neurological symptoms then you really should start treating the cause, not the symptoms ASAP. That means having loading dose injections 3 times a week.

Testing for B12 levels is totally pointless. Current guidelines say that doctors should treat the symptoms, not the numbers.

These are the latest recommendations from the British Committee on Standards in Haematology (the biggest, brainiest experts on the topic) - bcshguidelines.com/document...

Here are a couple of paragraphs from the summary -

"The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency."

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment. "

[Gymbabe in reply to fbirder]

I take Pregablin, similar to Gaberpentin and Carbamazepine which was given to me as a 'top up'.

They thought I had MS, my sister has it, then connective tissue disease, just been tested for Lupus.

I will go and see my GP, and see what he says.

Thank you

[Bluedragon]

Hi, have you had a B12 test? If so, what were the results, with ranges? You also need to test your folate and ferritin as these need to be optimum to support the B12.

Once you start on treatment testing your b12 serum will be useless.

Also look at having methylmalonic acid and homocysteine bloods done- these are the more accurate tests to see if your low at a cellular level. See if you can convince Dr to do or they can be done at St Thomas's or online privately.

Many of us need more injections than 3 X monthly, some do everyday, I do approx twice a week. Helps to keep a symptom diary as you will forget.

Do lots of reading! Try Could it be B12 by Sally Pachlok.

[Gymbabe in reply to Bluedragon]

I'm not sure, I've had the intrinsic assay factor VIII done and it was 50.

Spoken to Rheumatology today about my missing Vit D test, it was 63 and she said that was fine. I asked about the other being 50 and she said it was just in range and they will retest it early Jan when I see them again. Confused now, do I need them to do another B12 test when I see them again?

[Bluedragon]

Googling Factor Viii - this is a clotting test.

Intrinsic factor test is completely different.

Ask for your B12, folate and ferritin to be done and then come back with results including ranges. Get print outs of results- always.

Vit D reasonable, aim for about 100.