Self-treatment queries: Hi there, I... - Pernicious Anaemi...

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Self-treatment queries

Hi there, I posted over a month ago when I had written to a GP and was waiting for an appointment - full details here:

In summary, I was diagnosed this year with RRMS after bad spell of vertigo and mild lesions showed on MRI, but then began to suspect B12 deficiency because of my symptoms.

So last Monday (23rd) I finally saw the GP I'd been waiting for - and she completely dismissed the possibility of B12 deficiency or PA. My serum B12 is within range (I'll post results below), the test for IF antibodies was negative and MCV was normal. I tried to argue politely that I'd read that none of these results is definitive in light of my symptoms, but she just thought I was trying to avoid the MS diagnosis, which is of course a 'perfectly normal' thing to do.

I felt so helpless after this appointment and thought - maybe she's right, maybe I am just deluding myself. But I decided to email Dr ******** explaining my story and my results, just to get a second opinion. He phoned me within an hour of me sending the email and said that I'm severely B12 deficient, don't have MS, can probably be 95% cured and should begin self-injecting as soon as possible.

So I put in a request on B12D the same day for some hydroxycobalamin as he'd suggested. Because I'd have to wait and it seemed that my GP was done with me, I began supplementing with a sublingual 1000 micrograms methylcobalamin that evening and have been ever since. I also composed a very polite but detailed and referenced letter to my GP explaining why I disagreed with her and unless they could put me on a therapeutic trial, I would have to self-treat.

The one test the GP hadn't done this time and should have since I'd had problems with it in the past was serum ferritin (this was down to 5 ng/ml (13-300) in 2013), so last week I also made an appointment to have bloods taken for that. The appointment for this was today, and it turns out that on getting my letter, the GP has forwarded it to haematology and ordered tests for thyroid function, liver function, full blood count, as well as ferritin.

Does anyone know - will the sublingual B12 skew these results? I wouldn't have taken it if I'd known, but I've become scared of suffering further damage. Certainly, my B12 result in May was 176 pmol/l (110-664), and ten days after taking one of these (again before I knew I'd be tested) it was 201 pmol/l (110-664). Dr ******** thought that this might easily have affected that result, but I've no idea about the others.

I really want to begin self-injecting as soon as I can (although it is a bit scary!) but with these recent developments I've no idea what to do. I'm also slightly dubious about Dr ******** certainty - although I hope he's right, I've read that things are rarely so straightforward.

Results from Oct 2nd:

My haemoglobin was 142 g/L (115-165)

Mean cell volume; 91 fl (82-100)

MCH: 30.4 pg (27-34)

MCHC: 335 g/L (324-355)

Sodium: 140 mmol/L (135-145)

Potassium: 4.7 mmol/L (3.5-5.0)

Urea: 2.6 mmol/L (2.5-7.5)

Creatinine: 78 umol/L (65-140)

B12: 201 pmol/l (110-664)

Folate: 7.0 ng/ml (3.4-10.4)

and I tested negative for I.F. antibodies.

My ongoing symptoms include numbness/tingling, slight vertigo, overwhelming tiredness, eye tiredness and pain. I think I have felt slightly better since taking these sublingual tablets, but it's hard to say.

Sorry for the long post, any advice appreciated!

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ktwing

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Gambit62Administrator7 years ago

Unfortunately the sublingual is likely to have affected the B12 test.

Have you felt any better for taking the sublingual?

the IFA test coming back negative doesn't really mean a lot - it gives false negatives 40-60% of the time so is a long way from demonstrating that you don't have PA.

I'm also not sure how someone could be certain that you are B12 deficient from the results above - the range being used does seem to have a lower point of the range lower than I would expect but ... symptoms of B12 overlap with so many other conditions its quite difficult to diagnose purely on the basis of symptoms unless everything else has actually been ruled out.

As you have already written to your GP about things I think the best you can do would be honest with them when the results of tests come back. Ask them to take a proper look at the BCSH guidelines ...

Having had an iron deficiency in the past may point to an absorption problem which could since have affected B12.

Even if it is MS some patients can be helped considerably by taking B12 so you may be able to get your GP to look into that as well.

ktwing• in reply toGambit627 years ago

Thank you, yes, I felt that it was dubious to diagnose so swiftly, but it was a detailed email of my symptoms and history too that he was responding to, not just the blood results. I know from the research I've done that the 2014 guidelines from the British Journal of Haematology state: ‘We believe that the traditional cut-off value of 148 pmol/l is too low. We suggest that physicians should consider treating patients who show symptoms but have vitamin B12 levels above this value, particularly those in the low-normal range up to approximately 300 pmol/l, to see whether their symptoms are relieved’ - so yes, impossible to be certain, but perhaps this is why Dr ******* felt confident about it. But his statements did feel a bit unprofessional, and unlike what a doctor would usually say!

When I was getting bloods taken this morning I did tell the nurse that I've been supplementing.

I do think I've felt less tired and my eyes have been a bit better, but it's all quite up and down anyway, so difficult to be sure, even with a symptom diary. I guess I'll see if haematology get back to me.

Thanks for your advice.

ktwing7 years ago

Thanks for your reply - and I agree about Dr ******** which was why I mentioned it. I don't have abnormal sensations in my trunk by the way, and I haven't listed all of my symptoms here - I have quite a lot which seem to suggest B12 over MS, or potentially both, which is why I began looking deeper into this. That is interesting about the two B12 results, so thanks again, and for all of your advice.

ktwing7 years ago

Ah sorry, I meant 'right side' as in particularly my right arm/hand and leg/foot, nothing happening in my trunk! (Unless you include abdominal bloating and pain!) But thank you, I know that lots of my symptoms do suggest MS too.

ktwing7 years ago

Ah, that's interesting, I didn't know that.

According to the Sally Pacholok book, there aren't any ways to distinguish B12 symptoms from MS and all suspected MS patients should have MMA, Holo-TC or Hyc testing for that reason. She also writes that patients with neurological symptoms and serum B12 in the grey zone (which mine is) should undergo a therapeutic trial.

I also have additional symptoms and history which seem more B12 than MS, but I'd prefer to be accurate!

Do you happen to have any sources to do with the symmetry of PN thing, it would be an interesting route to examine before I start pricking myself!

ktwing7 years ago

Thanks very much, that's very good of you!

fbirder• in reply toktwing7 years ago

When my neurologist was looking into my peripheral neuropathy he said that whether it was symmetrical or not was a very useful diagnostic tool. Apparently the most common causes of PN are symmetrical.

Mine is 'sort of' symmetrical. The sock on my left foot extends about 10 cm higher up the calf than the sock on my left foot.

toph7 years ago

Exactly the same happened to me. Dr's don't learn about b12 and most are ignorant to the disability a deficiency can cause. What you need to do is donate to b12d go on Amazon and get needles, syringes and ampuole snapper. And start a njecting. As b12d is a charity they can only afford to give too many injections. My advice is go to mycare.de and buy a pack of 100 hydroxocobalamin and inject everyday to get your levels up.

Good luck.

ktwing• in reply totoph7 years ago

Thank you, that's reassuring! Do you have any advice as to which needles/syringes to buy? I've been a bit confused by whether to go intramuscular or subcutaneous and where to inject. Dr ****** seemed quite relaxed about it all and recommended the thigh and not to worry about whether it ends up IM or SC. Could you possibly tell me what you do?

Polaris• in reply toktwing7 years ago

Some suggestions on supplies for S.I. here ktwing:

healthunlocked.com/pasoc/po...

Just a thought, with a diagnosis of MS, it might be as well to get vitamin D tested, if not already done, and keep levels optimal - D3 with added K2 to ensure D3 goes to the bones and not the arteries and tissues.

Polaris7 years ago

I believe the immensely experienced Dr ********* was cleared by the GMC (he'd kept meticulous records on all his patients) and they were found to have only benefitted from his treatment, regaining ability to walk, full regrowth of hair, etc. I find it unbelievable that such an experienced and courageous doctor should be maligned and treated this way.

He joins the ranks of the other wonderfully brave and innovative doctors who care enough to refuse to treat their patients as hypochondriacs, but listen to them and dare to think 'outside the box', successfully treating patients in a non invasive way, before resorting to potentially invasive drug treatment. Dr Gordon Skinner, (Thyroid treatment, Dr Sarah Myhill (CFS/ME), etc. to name but two ....)

thejournal.co.uk/news/healt...

thejournal.co.uk/news/north...

Dr ******** and other Indian doctors are generally hugely experienced in diagnosing the effects of B12 deficiency, having seen and treated many Hindu vegan and vegetarians. My relative struggling for years with PA/B12 was eventually correctly diagnosed by an Indian GP in her surgery and given the more frequent B12 injections she'd so desperately needed (regaining ability to walk) before having them removed by another doctor in the surgery and treated only with antipsychotics!

Dr Terry Wahl (vegetarian) was severely disabled and diagnosed with MS, but eventually recovered on her own paleo diet. It appears there are many others diagnosed with MS and MND (also called ALS or Lou Grieg's Disease ) who may benefit from treatment with vitamin B12 injections, usually Methylcobalamin.

http:/alsworldwide.org/what's-new/article/about-methyl-B12def

I personally know of one person diagnosed with MND, who is benefitting from B12 supplementation, surprising his specialists that he is not deteriorating. Yet another, diagnosed with MS, is undergoing treatment which suppresses the immune system completely, before it returns. Apparently, although this appears successful at first, the effects do not last and more treatment is then required.

I, personally, elect not to risk being misdiagnosed and have self injected Hydroxocobalamin for seven months with continuing improvement, apart from Dupuyen's contraction or Vikings Disease, which appears to be connected with PA and more common in those of Northern European descent (most of my grandmother's descendants had red hair and blue eyes!)

ktwing• in reply toPolaris7 years ago

Thanks for this - I definitely was not trying to malign Dr ******* , I was just worried that what he told me seemed too good to be true, and it seemed unusual for a doctor to be so positive! He is certainly hugely more knowledgeable about B12 than my GP and it was incredibly refreshing to explain my whole story to him and not be dismissed. Thanks again for your words.

Polaris• in reply toktwing7 years ago

Sorry, ktwing, if you thought I meant this, as I completely understand that you are trying to find out as much information as possible before deciding what to do next, especially as neurological symptoms of B12 deficiency have a fairly short window of opportunity to treat before permanent damage is risked.

I really hope all goes well for you and you return to full health soon. Very best wishes.

Polaris7 years ago

"After reviewing patient records which Dr ******* has been collecting for 25 years, it was only decided in July he could resume his treatment programme - but with stricter controls to ensure other serious conditions are not missed.

"This is something I've been working on for 25 years and it's a relief to be able to continue with it," he said yesterday. "Patients with B12 deficiency are often labelled as neurotic or `heart sink' patients, because doctors see them as a nuisance and say their heart sinks when they come into the surgery."

Rather ironic I'd say, seeing as my relative's serious condition was missed and physical history and symptoms dismissed by her surgery with catastrophic results.......

Polaris7 years ago

Wasn't that around the time extra payments were introduced to GPs for diagnosing dementia?

FoggymeAdministrator7 years ago

All.

Inline with forum community guidelines, the name of a medical professional has been redacted from the original post and from various replies submitted.

Please see these guidelines for further information:

healthunlocked.com/pasoc/po......

ktwing ,this is no reflection on the appropriateness of your post. New forum members often inadvertently post the name of medical professionals without being fully aware of the guidelines, so please don't worry.

The ability to reply to this post is now being switched off.

Ktwing - again, this is no relflection on your original post and query. If you need any further advice or help, please do put up a new post and forum members will,be along to assist.

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