Advice needed

[AJWSOMERSET]

I have recently been signed off work with chronic pain and fatigue that my previous GP thought was Fibromyalgia. I have had abnormal shaped red blood cells and recently my B12 was 164. I have all the symptoms of a B12 deficiency (no weight loss though) but am told I have enough haemoglobin in my cells so I don't have anaemia. I also have a low ESR level of 3 (ref range 3 - 9). My MCH levels have been abnormal 5 out of 7 times in the last few years consistent with the period I have had my symptoms. I think I have a B12 deficiency but I don't now how to get this across to my GP as I end up being fobbed off that it is probably my stressful job and lifestyle. I have started to take high strength B12 supplements to see if it works. Any helpful comments would be appreciated.

[EllieMayNot]

I am not a medical professional but it sounds like B12d to me. Like you, I was labelled with fibromyalgia for nearly 20 years before the PA/B12d was discovered and treatment began. I saw any number of specialists and I believe it safe to assume they thought a lot of it was me just being a hypochondriac but I knew there was something very wrong that everyone was missing. Like you, I tried self medicating with high strength oral B12 but I had no improvement until injections were started. If you join the PA Society, they have a lot of resources that you can download and bring with you to your GP. They also have phone consults with their members, guiding them in how to best approach their GPs. They offer really great service and support.

pernicious-anaemia-society....

[AJWSOMERSET in reply to EllieMayNot]

Thanks I will look into the membership

[JanD236]

Pernicious anaemia is about so many more symptoms than anaemia and indeed about 20% (if I’m remembering that figure correctly) don’t even have anaemia! Unfortunately many doctors don’t realise this is the case.

If you have abnormal shaped blood cells I imagine that the MCV level was high in your blood test? This indicates a B12 (and/or folate) deficiency. (On the other hand if MCV was low it would indicate iron deficiency).

164 strikes me as a low level of B12 and you can check this by asking your surgery for a print out of your blood test results to show both the levels and the ranges for each test. Is your B12 below range and your MCV above?

Have a look at the list of symptoms on the PAS website and armed with this and your blood test results go back to your doctor to say that although you may not have anaemia you have results and symptoms pointing to PA or B12 deficiency and should be treated for this.

The doctor can run a test for intrinsic factor antibodies and if positive this confirms a PA diagnosis. Unfortunately the test is only accurate 50% of the time (so a negative result doesn’t mean you don’t have PA). You would also need to stop supplementing B12 for a couple of weeks beforehand.

Good luck!

[AJWSOMERSET in reply to JanD236]

Thanks for the reply

[Nackapan]

I know someone who was labelled with fibrmyalgua for many years. It's a shame when a label is given as nothing definitelse found as it can stop the testing. It took them to be very ill on hospital to have a first B12 test that was 54 and have aneamia and ferritin leveks of 6. Was evenue sent down the mental health route as we all are ti some degree.

I would askeep for a trial of b12 injections afor the break from supplements to get the IF or partiel cell antibody test done. Apparently the latter is reliable if negative (in my case) but can give false positives. I think that is right. Have toy been tested for folate and vitamin D? Also have they started you on iron?

[AJWSOMERSET in reply to Nackapan]

Thanks for the reply. My iron levels are within normal range. GP said lower reference range for b12 was 120 so I’m still technically in the normal range but the private blood test I had the range was 197 so it’s confusing. Not sure about my vitamin D. My folate was in normal range too.

[Nackapan in reply to AJWSOMERSET]

Ferritin leveks and vitamin d good to get tested

Good folate and hb okay at present. Thyroid test usually done too.

The serum b12 blood test will only show b12 in blood and not active b12. The 'normak' range should be in brackets next to your results

Anyway hope you get some. E b12 absorbed from high dose pill or injections. Proof of the pudding is if they help your symotoms

[Vicky2822]

164 is low. That was my daughters level and she was put on injections. Can you afford to pay for private tests? If you have not taken any b12 supplements since that blood test ( as they will skew results). Loot up Viapath it’s a lab at Guys & St Thomas’ hospital but they do private tests. Get Active b12, homocysteine, MMA, folate, ferritin and vit d done.think it’s about £150. These will give a more accurate picture. Ask your Gp if they will draw the blood (some charge). As it’s an NHS lab your gp can not ignore the results. You could ask the gp for these tests but I don’t think many agree to the active b12 one. Could also get intrinsic factor checked as this would confirm Pernicious anemia (but not rule it out if negative).

[AJWSOMERSET in reply to Vicky2822]

Okay thanks for the advice I have been taking some supplements so would need to stop for a period before I guess.

[Vicky2822]

Might be worth phoning up Viapath and explaining your result and what supplements you’ve taken since. They would advise how long to wait. I have been told 4 mths but presumably depends on what you’ve taken and how strong it was. Good luck.