Advice needed.

[Evane7]

Hello all. I’m sorry to barge in here as have not been diagnosed with PA but am trying to take my health into my own hands. I’ve been to so many specialists over last 3 years for so many random symptoms which all started as neurological but have been thoroughly investigated and nothing showed up. One doc said fibromyalgia. I literally have every Symptom of b12 deficiency even though I’m now being sent to a Hematologist as b12 is consistently high and am not supplementing. I feel I’m dismissed as a hypochondriac but I know I just don’t feel right and I’m not anxious or depressed! I’m so fed up of feeling this way and it’s really affecting my quality of life.

Symptoms-

Awful Stomach pain (investigated)

Migraine (investigated)

Numbness and tingling (investigated)

Dizziness

Ringing in ears

Palpitations

Awful Brain fog

Loss of libido

Nausea

Urinary urgency/frequency

Fatigue

Just generally don’t feel well

I thought I’d include pic of blood results to see if anything jumps out at anyone. Sorry for long post and thanks so much for reading.

[Nackapan]

Has a reason been given for high serum b12 off supplements?

Keep going with spevislists to find the right one with answers

You know your body . They are missing something.

Symptoms overlap with so many things.

Functional b12 ?

Autonomic dysfunction?

Hypermobility (Ehlers Danlos )

Keep going to get answers and treatment

[Evane7 in reply to Nackapan]

Thanks so much for reply. I’ll keep going for sure.

[Hidden]

I too have all your symptoms plus burning in arms, knees, legs, wrists.

I’ve been working with a nutritionist and tested positive for Small intestinal bacteria overgrowth plus Candida in gut.

In three weeks am starting with a private functional doctor known to my nutritionist. She was a GP but can now deal with stomach issues.

Having SIBO can give a false reading on B12 serum. I started injecting to see if it makes a difference. My symptoms started with stomach and D. Trouble is a lot of doctors don’t understand SIBO.Good luck and hope you find answers soon.

[Evane7 in reply to Hidden]

Funnily enough I have looked this up before. Do you mind me asking how you got tested for Sibo? Was it endoscopy? Thanks a lot for reply.

[Hidden in reply to Evane7]

It was through a breath test with a company called Invivo in Stroud, Glos.Problem is you need to work with someone so they can order and interpret and treat.Try calling them and they may have someone for you to work with or to interpret for you. That may not be the only issue for you. Good luck.

[Cherylclaire Forum Support in reply to Hidden]

You can get hydrogen breath test on the NHS. Mine was arranged via haematology because B12 deficient and struggling on injections , my methylmalonic acid (MMA) was tested and came back as raised - which can indicate renal function problems (none) or functional B12 deficiency (GP's confirmed diagnosis) or small intestine bacterial overgrowth (SIBO).

My results were indicating either SIBO or "fast transit" ; IBS (irritable bowel syndrome). Since SIBO was what was being tested for, I was put on a trial of antibiotics which I had an adverse reaction to, but which did not alleviate any symptoms. This was the second time that antibiotics had given me any problems: bad headache and vertigo.

Hidden , maybe the route to SIBO test is via MMA test with a raised result ?

SIBO bacteria can steal a number of vitamins from you, including B12. I think the others are all oil-based vitamins (A, D. E, K) but I'd check that.

[Hidden in reply to Cherylclaire]

Thank you for that info. I’ve been through everyone over the last five years. I’ve done two MMA tests with nutritionist. Both times they were raised. She’s told me to keep to injecting as I am 3 x a week until I see private functional doctor. Have done a recent SIBO test too and should get results back from new doctor. My last SIBO test showed positive for Hydrogen but gastro doubted it was SIBO so never was treated. I have Candida too .

I have read SIBO shows serum results to be higher than they are. I feel better in myself for injections but think a lot of damage may have been done hence burning pains.I will wait and see what this doctor says. I was nearly deficient in Vit D but got that to 80 now and told need it at 100.

Ive been told antibiotics for SIBO can have side effects and it’s not plain sailing getting rid.

[Cherylclaire Forum Support in reply to Hidden]

Think the problems with SIBO treatment to be to do with difficulty in getting rid, so frequent antibiotics courses mean having to alter type of antibiotic before SIBO become immune. Obviously, this means replacement of probiotics needed after treatment course.

I had one course of antibiotics to see if it was SIBO - problem with antibiotics reaction only seems to have become an issue since B12 deficiency. It also happened when I had different antibiotics for infected gum prior to tooth removal. Same reaction though: bad headache and vertigo.

Why B12 deficiency might affect antibiotic tolerance, I don't know.

Have got osteoporosis of the spine now so vitamin D on prescription. Only need a multivitamin and mineral as ferritin and folate under control. B12 injection every three days helps me manage symptoms.

[Hidden]

Your folate and ferritin levels are really low.

Low iron levels can cause a lot of your symptoms. Raising your iron levels might help?

[Evane7 in reply to Hidden]

I thought this but doc doesn’t seem concerned but I know something is not right.

[Hidden in reply to Evane7]

Drs don't seem concerned by low levels so long as it's 'in range' but your folate is only 10% through range.

You will likely feel quite different when that is even 50%.

Ferritin is a paltry 6% through range!

Too much iron can be as problematic as too little iron though, so before taking supplements it's recommended to up your iron intake through foods first.

Or start supplements but ensure you're testing your levels regularly.

[Cherylclaire Forum Support in reply to Hidden]

GP told me that ferritin below 60 ug/L can cause symptoms. Oral medicine consultant wanted it to be 80 ug/L but after many months of strong supplements, only got to around 60, so had to accept that as maybe my limit.

My folate started at about 5.5 and took a while to stabilise too. Often dropped as soon as additional supplements course finished.

Both of these are likely to be low with low B12 , vitamin D too, often thyroid struggling a bit also. When B12 high, but symptoms of B12 deficiency, could indicate a functional B12 deficiency. MMA results being high can confirm this, once all else ruled out (as mentioned above ).

All of this can be tested for and treated by NHS.

[Hidden in reply to Cherylclaire]

That's really interesting; I just checked my own levels. My ferritin was 66 in 2013 and has been steadily dropping ever since! 🙄

I absolutely think it needs looking into properly by a Dr but in the mean time, eating more leafy greens won't cause any harm. 🙂

[Evane7]

Thank you all so much. This is all so helpful. I’m in Ireland but will be checking this all out with Hematologist on Tuesday and am determined to be listened to once and for all.