Advice please.

[Boudica1]

Had bloods done end of May for consultant Rheumatologist as I have Vasculitis an Autoimmune disease, they're still trying to diagnose which type. Rheumy nurse say I may need injections due to Anaemia.

About two weeks later had more bloods done for GP, GP also says I have Amaemia and put me on B12 and Folate tablets.

I have accessed the blood results for the GP but as yet can't get access to the consultants blood results. This is what I know so far..

B12 230ng/l

Folate 1.9ug/L Abnormal

Haemoglobin estimation 153g/L Abnormal

Haematocrit 0.463 l/l Abnormal

MCV 101.5 fL Abnormal

MCH 330g/L Abnormal

Any idea's as to what questions I should be asking when I see the consultant next week? I know there are other's in my blood relatives that also have/had B12/Folate problems.

[Polaris]

There was an interesting piece of research on the forum quite a while ago (which so sorry I cannot find again 🤔) relating to B12 deficiency eventually causing vasculitis. Serum B12 is not a reliable test for many reasons, so 230 with low folate and your abnormal blood results, plus family history, could very well indicate an absorption problem with B12, that should be treated with injections.

Two experts in the field, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B deficiency for years. Both mention vasculitis as a symptom and describe how under diagnosis of B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'

‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

There is this protocol on Dr Chandy's website that lists vasculitis under cardiac symptoms at the very end - page 8.

The latest BMJ research document summary only (full document behind a paywall):

bmj.com/content/349/bmj.g5226

Bottom of page 2:

"What are the clinical features of vitamin B12 deficiency?

The clinical manifestations of vitamin B12 deficiency (fig 2⇓),3 5-7 9 13 represent the effects of depletion on multiple systems and vary greatly in severity. The clinical manifestations are heterogeneous but can also be different depending on the degree and duration of deficiency.

Mild deficiency manifests as fatigue and anaemia, with indices suggesting B12 deficiency but an absence of neurological features.

Moderate deficiency may include an obvious macrocytic anaemia with, for example, glossitis and some mild or subtle neurological features, such as distal sensory impairment.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features, and risk of cardiomyopathy. However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay.4 13 "

.............

Many medics are reluctant to prescribe injections so I hope this helps with obtaining the correct treatment boudica1 🤞

[Boudica1 in reply to Polaris]

Thank you Polaris. I have found some papers/research that connects B12/Folate and some types of Vasculitis. I'm not sure what to ask the Rheumatologist when I see him next week. I've been keeping a diary of symptoms this past 6 weeks and am thinking about printing a copy and giving it to him. Maybe he can make sense of it as to me some thing connect with one thing and some another. On the other hand it could also look like I'm some raging Hypochondriac, but believe me some of it is not only painful its also a bit alarming at times especially when I find myself putting the kettle in the fridge or a little old lady with a Zimmer frame is racing past me at a rate of Knots as I seem to be wearing a lead suit.

[Polaris in reply to Boudica1]

It should be really useful that you've kept a diary and might be a good idea to take someone with you for extra support to ensure you are taken seriously.

This link may give a few ideas of what to ask ?

hopkinsvasculitis.org/resou...

A misdiagnosis of long standing ME, then later, dementia, finally vasculitis - late and inadequate treatment with injections that were eventually stopped, had devastating consequences for a vegan/vegetarian member of my family.

I'm afraid that few clinicians are aware that PA/B12 def. is very common and that there is strong evidence it's v. effective if treated early and adequately.

[Boudica1 in reply to Polaris]

Thank you, as you can imagine I've been doing a lot of reading after having a biopsy result for vasculitis. Then finding out about the B12/folate deficiency was a bit of a curve ball.

It's back enough one specialist from one department saying it's one particular type and another agreeing on part's of the diagnosis but non-comital as to which type, choosing to re-do the bloods and talk to another specialist in Connective Tissue Disease's.

I think I was lucky I didn't blindly follow the first one as they wanted me to take Dapsone but I refused as some of the side effects are the same as symptoms I already have and they said it wouldn't matter. I had of late been reconsidering so re-read the information on Dapsone. Glad I did as it warned against people with anaemia taking it.

I will be taking a copy of my symptom diary and some one with me next week. Hopefully this time I won't be so nauseous and out of sort's so I can pay more attention and hopefully ask the right questions.

Thank you again you have been of great help. Fingers Crossed for next week.