Help Needed

[Thompson36]

Having some weird symptoms, severe headache, dizziness type symptoms. Also suffering from vegus nerve irritation which is causing palpations. These were bloods taken in October. Also had bloods done in Greece end of September where I was treated for B12 and Magnesium. I have attached these as well just in case someone can figure them out. GP keeps saying everything looks normal so are unwilling to do any further tests.

[Foggyme Administrator]

Hi Thompson36. The image of your results contains the name of a health care professional (bottom right corner) so I've had to delete it to protect their identity (and adhere to forum posting guidelines).

Please can you redact the name and then re-post the image of your results?

You can edit your post via the drop down tab at the bottom of your post.

Often done inadvertently so please don't worry 👍.

[Gambit62 Administrator]

you have signs of macrocytosis in that your red blood cells seem to be rounder than normal - the high MCH and MCHC. Your GP may be looking at the MCV which would indicate that your red blood cells are larger than normal but they aren't - but it could also mean that you have a mix of both macrocytic and microcytic (iron based anaemia - in which your red blood cells are smaller than they should be) and the two are masking each other. This isn't uncommon as the most common cause of B12 deficiency - PA is an auto-immune disorder of the gut that attacks the mechanism that allows you to absorb B12 but it also reduces stomach acidity and can result in problems absorbing other minerals and vitamins - notably B12 and folate,

Both B12 and folate deficiency will result in macrocytic anaemia

What treatment did you have for B12 deficiency whilst in greece - if it was injections because you were deficient ... and the cause isn't dietary (no or very little meat/dairy/eggs in diet) then it sounds as if you have a B12 absorption problem.

I would suggest you go back to your GP - particularly as you seem to have some neurological symptoms - and ask them to look again and investigate further around why your red blood cells appear to be a bit rounder than they should. Point out that 20% of patients who are B12 deficient don't present with macrocytic anaemia anyway as detailed in the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which they can access through the BNF, but can also be accessed here

onlinelibrary.wiley.com/doi...

At the very least ask for a referral to a neurologist re the headaches etc.

[Thompson36 in reply to Gambit62]

I generally eat a healthy diet with plenty fruit and veg, dairy and protein. I’ve had GERD for years but most of the time do not need medication and can manage with Gaviscon. I’ve had endometriosis since being diagnosed at 21 and had a full hysterectomy in Feb. This past year have suffered with lots of joint pain in lower and upper back and vascular pain in my calf which has been ruled out for DVT. Persistent shoulder pain despite physio every week with x-rays looking normal. In Greece they said it was B12 at the clinic but due to the vegus nerve palpitations sent me to the main hospital where they did an echo which was ok and said it was magnesium. Had infusions for both and have been ok until about 3 weeks ago where I started with the odd dizzy spell but ended up in A&E last Tuesday where they said inner ear and prescribed some tablets which did nothing back to the GP last Friday who said migraine but the tablets she gave me did nothing. Have had temple pain for over a week and had to leave work yesterday afternoon as I couldn’t cope. Saw the GP who agreed more bloods but just found out she’s only checking for FSH. I am currently on 50mg HRT oestrogen only. Sorry for the long post but really don’t know what to do next. Phoned my boss and got really upset which is unlike me 😥😥

[Gambit62 Administrator in reply to Thompson36]

A serum B12 test at this point is unlikely to be useful because of the 'infusion' in September but worth doing as it may come back low (if not done so already). Really you want to get hold of the medical records from Greece and share those with your GP.

I would definitely query what the GP thinks is causing your red blood cells to be rounder than they normally are.

[Thompson36 in reply to Gambit62]

The Dr’s here wouldn’t look at the results from Greece. Been again today and they are adamant that there is nothing wrong with my blood results and got quite bolshy when I asked if it could be PA. absolutely adamant that it’s not. Had some more drawn today but will have to wait until Tuesday for the results. Just so fed up, one minute he said it could be an infection then the next breath said it wasn’t and wanted to prescribe 600mg ibuprofen.

[Gambit62 Administrator in reply to Thompson36]

unfortunately GPs can be like that.

If it is one particular GP you are seeing then it may be worth trying to see another one.

[Thompson36 in reply to Gambit62]

He was one of the better ones, he’s usually quite good and doesn’t rush you. He went over previous bloods and said they’ve tested everything and they are all normal. He thought it quite amusing and laughed when I showed him your first response to my post 😞. I have an appointment with the pain clinic on the 3rd so don’t know if it’s worth trying with them instead.

[Sleepybunny]

Hi,

I wrote a very detailed reply with lots of B12 info eg links to UK b12 documents, B12 book lists, B12 websites etc in this next link to another thread on this forum.

healthunlocked.com/pasoc/po...

If you suspect PA then worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

There are many possible causes of B12 deficiency eg Coeliac disease, H Pylori infection, fish tapeworm infection, Crohn's disease, some medicines/drugs, exposure to nitrous oxide, diet etc

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

BSH Cobalamin and Folate Guidelines (UK document)

b-s-h.org.uk/guidelines/gui...

BNF (UK info on treatment for B12 deficiency)

bnf.nice.org.uk/drug/hydrox...

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Lots more info on that other thread I linked to.

I am not medically trained.

[Thompson36 in reply to Sleepybunny]

Definitely think I’m having neuro symptoms and have been for the last 8 months. Persistent calf cramping, severe joint pain in shoulder, lower back, groin, upper thoracic. Also have IBS and multiple bowel polyps. All they want to do is put me on gabapentin. I have a hiatus hernia but try to avoid oemprezole and only take Gaviscon when I need it. My bloods have been the same since September. Like I said Dr was adamant that it’s not PA but agreed to do full bloods. They’ve pretty much wiped their hands of me and referred me to pain management 😥