What's the best kind of specialist for pernicious anemia?

[douray]

My bout with PA may have begun in summer of 2017, or maybe a lot earlier. I was being treated by a lot of specialists for AFIB, prostate cancer, taste disorder et cetera. At some point I began losing weight very rapidly because nothing tasted good and I couldn't eat anything. Its onset coincided with (and may or may not have had something to do with) my cardio ablation for AFIB. After losing 65 of my 265 pounds, I plotted an excel sheet of my weight over time (3 months?) and took it to each of my specialists in turn. To each, I asked "you can see from this graph I will soon be gone. If I die on your exam table, what will you tell the coroner is the cause of my death?" I kept digging on the Internet while each of them kept doing what they were doing - in most cases nothing. But suddenly three of us (me, my oncologist, my electrophysiologist) concurrently announced "Aha what about pernicious anemia?" I started getting B12 shots and immediately (like a couple of hours) started feeling better. I know this is unlikely to be the end of the story. I would like to restructure my medical team to put more attention on PA and less on diabetes, prostate cancer, possibly de-emphasizing ear-nose-throat, neurologist, radiologist, urologist and other specialists I have accumulated over several years. Suggestions / questions / stories welcome

[Foggyme Administrator]

Hi Douray. Well, that's not an easy question to answer.

Historically, PA was placed under the remit of haematology since it was assumed that everyone with PA developed macrocytic anaemia (where red blood cells are larger than normal, producing a specific kind of - macrocytic - anaemia).

It's now know that macrocytic anaemia is not always present and so is not a defining characteristic of PA.

All the cells and systems in the body require vitamin B12 to function properly, so any system in the body can be affected. Furthermore, PA affects everyone differently and we all seem to suffer different symptoms, depending on what systems in the body are impacted. There's no 'general' rule and no 'typical' pattern of symptoms - though some seem to be more consistently experienced, than others.

There is no one specialism that deals specifically with PA (unfortunately). It’s also reported here that many consultants have little to no knowledge of PA and B12 deficiency. Sometimes it's a just matter of 'luck' if a consult with good knowledge is discovered (there are some, but apparently far too few)

Generally...

For gastric symptoms, see a gastrologist.

For neurolgical symptoms, see a neurologist

For macrocytic anaemia, see a Haematologist

And then if other things crop up (thyroid issues (Hashimoto's thyroiditis - an autoimmunity ne csure ndition) and other autoimmune conditions are quite common since autoimmune conditions tend to travel in clusters).

So...if this happens...

For thyroid issues, see an endocrinologist

For potential underlying autoimmune conditions - see a rheumatologist

And there are probably plenty of others that could be added here...

And sorry, I seem to be extending your list, not reducing it 😖.

Here's the 'ologies' I've been subjected to (because my GP failed to diagnose and treat B12 deficency)...

Endocrinology, neurology, gastrology, dermatology, opthomology, gynaecology, rheumatology, ENT...and perhaps more that I can't now recall...

I must have cost the NHS a fortune, and all for the want of B12 injections! Not to mention the extreme impact on my health.

Like you, I lost two stone in one two week period, continued to lose weight...and was left with the overall felling that all these specialists were simply watching me die (albeit slowly and horribly).

Diagnosing and treating the B12 deficiency was the first step in the right direction (identified eventually by GP but under-treated / treatment stopped - partially restored and I now self-inject B12 at a frequency that I need to keep well).

And the gastrologist picked up on an underlying autoimmune condition so I now see a rheumatologist and have recently started on immunosuppressants. So another step in the right direction.

All-in-all it's taken me just over three years to get to where I am now, and it’s been a long hard fight, with much research, help from this forum, and positive determination not to give in and be beaten by some fairly unpleasant experiences with doctors. (Strangely, the ones I didn’t need were the ones who treated me best).

So...no easy answers, I'm afraid. Because of some of your others medical conditions you may have to stick with certain specialists.

About the PA - the key to getting as good a recovery as possible is to ensure that you get enough B12 (the frequency of licensed prescription in the UK is insufficient for most people).

How do you know what is enough B12 - enough to get and keep you well. Some (but not many) are okay with three monthly injections, some have to inject every day to stay well. Some have complete symptom remission - some have symptoms that linger and never entirely go away...or,perhaps have good days and bad days. A lot depends on how long the deficKen your existed prior to treatment...and getting the right frequency of injections.

As a rule-of-thumb, if symptoms return before the next B12 injection and then return before the next injection is due, this is an indicator that more frequent injections are needed, the aim being to time the frequency so that injections are given frequently enough to stop the recurring/remitting pattern of symptom return.

However, getting the right frequency is injections is no easy matter, since most GP's insist on sticking to the one-size-fits all prescribing practise (and unfortunately, the current guidelines do not help).

It's also worth noting that those with neurolgical symptoms need much more frequent injections (after the initial six loading doses, injections every other day until no further improvement). This is called the neurolgical regime - not many GP's have heard of this and rarely prescribe it, so many have a 'missed step' in their treatment regime - and this can impede on the body's ability to effect neurolgical repair.

So...a lot of words, a bit of history, not many suggestions...and not a lot about restructuring your medical team, since B12 deficiency is a bit of a moving feast, symptom and specialist wise (though it's certainly not a picnic).

And so....make sure you get enough B12, ask for referrals to specialists, as necessary (depending on what symptoms you have - and referrals are usually to rule out other underlying causes, rather than to treat the PA).

Also note: those with PA often have other absorption issues so good idea to get ferritin (marker of iron deficiency), folate and vitamin D levels checked (the main culprits and deficiencies in any of these can make you feel very ill indeed. As if B12 deficiency isn't enough 😉).

If you have any specific symptoms that you want advice about, or just general advice about PA / B12 deficiency...or perhaps about ways to persuade your GP to help you, or information about guidelines etc., then put your questions in a new post and folks will be along to help and support you.

Don't know if any of this is remotely useful...but perhaps somewhere to start.

Good luck with the consultant cull.

👍

[Frodo]

Does the Pernicious Anaemia Society have a list of UK specialists in B12 disorders, or are there none?

Gambit62 Foggyme

[Gambit62 Administrator in reply to Frodo]

I'm not aware of a list. They do have a few people that they work with in terms of campaigning etc but both Foggyme and I are volunteers working on moderating this forum. PAS-admin would be in a better position to answer

[douray]

I thank you all very much - your letters all seem to be pitched straight to the middle of my general intellect, a great piece of good luck. I will have to seek out a practitioner whose brain is roughly in the same place. I can't imagine going through this wrinkle in time successfully without one. What fun having a rare disease! As a lifelong reductionist and solver of engineering problems, I am always surprised by such complications, but I try not to deny them. I found a website titled something to the effect of "100 symptoms of pernicious anemia" - I had approximately 85 of them before B12 injections began, and still have a few more than I'd like. Ah here it is: blog.vitasciences.com/vitam...