I know I have PA. My GP says I don't!

[Babygodmother]

Hi all new to this forum, was kindly given details of the PAS as I thought I had a thyroid issue and was on that forum until I posted my blood results. They directed me to B12 deficiency sites, I have been on many including Martyn's wonderful site and read all the info on this and Dr Chandy's site and I know I definitely have PA. I emailed/called Martyn & he called me back the same day. He says he hears my story every day...

I have a smorgasbord of B12 symptoms and a long medical history that now points to this. No doubt, very like a lot or most ppl here, I have had this for years.

IBS

Fatigue

Tinnitus

Migraine

Chest pain

Pins and needles, burning feet

Irritability/unexplained rage

Post natal depression (after both kids)

Eat no dairy & very little meat

"Growing pains" when I was going through puberty

Last few weeks, chest pain, palpitations, constant headache, visual disturbance, confusing, memory problems, mixing words up, leg weakness, tremor, balance problems, bladder issues etc etc

To name just a few....

My B12 has gone from 423, to 362 to 264 in a matter of weeks. My ferritin is 10 and I was told that I was a "bit anaemic" and should eat more meat! FBC "normal".

I have researched, read, absorbed and digested the literature, read the online info, reade Martyn's book and Sally Pacholok's book, read the updated guidelines from the British Committee for Standards in Haematology etc etc.... I could write a book myself. All of this information (backed by research) says that "neurological manifestations precede (sometimes by years) changes in the blood; a normal serum 12 does not rule out PA & you must treat immediately so as to prevent neurological damage".

My GP says that I don't have it and that they (GPs) are really good at diagnosing PA!!! He refused to discuss it!

The irony of this all is I am a Practice Nurse and have been working with GPs for the last 16 years! I give B12 injections daily. Argh! I thought I knew about this condition but realise I know nothing!

Meantime, last week, my health is going rapidly downhill. Struggling to work and look after my kids. Went into work of Thursday, my day off. Crying in the office with practice manager/senior GP telling them I have PA & my GP says I haven't (my boss practically mocked me when I said this as I told him my blood results, showed him all the info I printed off re inaccuracy and STILL he didn't believe me! ) They asked if I could phone my GP as "a concerned boss". My surgery phoned a few hrs later to say the GP had rang the neurologist who had agreed to a course of B12 injections as it "wouldn't do me any harm" (like I don't know that!).

So, I have had two so far and due to have my third tomorrow (self injecting, brave me!) I am already feeling a bit better.

I am also iron tablets, which are delightful. Instead of pale, loose stools I now have black loose stools (sorry, TMI)

Sorry to prattle on so much, is probably the same as everyone else's story.

My questions are :-

Should I be getting and further blood tests? I have intrinsic factor/parietal cells checked on Thursday plus I asked the nurse to repeat my B12, folate, ferritin (she was trying to fob me off, but I didn't leave until she marked it on the form). What else should I be getting? I've read about other things like homocysteine, cortisol, vitamin D etc....

Also, what regime of hydroxocobalamin should I be on? I am going to inject every other day for 2 weeks, not sure about after that? The guidelines say continue up to three months or until the neurological symptoms don't make any further improvement. So, stay on every other day?

What else should I be taking? Assume folic acid (think Martyn mentioned this should be taken with hydroxocobalamin). Other B vitamins? Pro biotic? Read something about vitamin C?

Anything else?

I will be taking all the information and guidelines to my follow up appointment on Thursday when I will be placing it on my GPs desk & ask him to read it. I think I will wait in the waiting room til he brings out my prescription...

ONE LAST THING BUT VERY IMPORTANT. My 7 year has long standing constipation. She had been complaining of tiredness recently and "sore feet", "my legs feet weak" and last week she said her leg felt like "it wasn't there for a bit". I am now very worried about her. In Sally Pacholok's book, she has several "red flags". In fact, so has my partner. I have advised him to get tested, too.

Thank you for reading. Any tips I would be really grateful. And if anyone is in Glasgow, maybe we could meet up? Or do some of you do that already?

Cheers!

[Gambit62 Administrator]

What you have is a B12 deficiency - PA is one cause but there are many others.

Could be diet if you don't eat much dairy or meat - though sounds like you have probably ruled diet out as source rather than problems in the ileum.

Most of tests you mention - homocysteine etc are clarifiers if B12D is suspected.

Probably worth doing some investigations to try to tie down the cause but unfortunately most of the tests involved are pretty inaccurate so can have IFA done several times before it comes up positive, so quite easy to drive yourself nuts looking for a cause.

Not sure where you are based - guessing UK.

bcshguidelines.com/document...

protocol recommended by BCSH, where neurological involvement is 3xweek until no further improvement with a review after 3 weeks, then maintenance every 2 months.

However, tere's no real scientific evidence that anyone is able to trot out for the 2 months and many countries that use hydroxo go with 1 month for maintenance shots.

It's not toxic and, although there is a correlation between higher rates of cancer and larger tumours in patients receiving B12 therapy no causal link to cancer has ever been established and much more likely that the cancer was already there but the B12 then promotes growth of some of the cancer cells as well as healthy cells.

So, more frequent not a problem if you can get hold of it.

You need folate to absorb B12 - best if you can get this from diet.

If you have anaemia then your potassium levels need to be monitored as you can experience hypokalaemia in the early stages of therapy as the body uses up postassium in processing B12.

If you have an absorption problem then other absorption problems are quite likely so worth keeping an eye on other vitamins, like vitamin D.

Suggest you get your sons B12 and folate levels checked if you are concerned. If GP won't listen then you could trial him on B12 .

Note: oral can be effective in very doses as 1% of B12 is absorbed outside the ileum but doesn't work for everyone. There are also sublingual and nasal sprays that may be easier than injections and can be quite effective but again varies from person to person. Other forms of delivery haven't been researched very much and generally aren't on medics radar. However, CDC (equivalent of UK NICE) does mention nasal spray as an effective way of treating where there are problems with injections.

[Sleepybunny]

FBC "normal".

Were you told this over the phone? I always get paper copies of test results. I learnt from experience that even when told results are normal over the phone, sometimes they are not.

There can be very useful clues in an FBC test. Have a look at your MCV and MCH if you get a copy of the FBC.

High MCV and high MCH can indicate the possibility of a macrocytic anaemia. Low iron (ferritin) makes red blood cells smaller (microcytosis), low B12 and/or low folate makes red blood cells larger. If someone has both low iron and low B12 and/or low folate then the MCH and MCV may appear normal and a GP may miss problems because results appear "normal"

patient.info/doctor/Macrocy...

"My ferritin is 10"

What is the reference range in your area? in my area, a result of 10 would be below range and I'm pretty sure would get treated.

"Should I be getting any further blood tests?"

As well as Homocysteine test, some people get MMA and Active B12(transcobalamin). These are available privately if your GP does not order them. Supplementation prior to these tests may mean that the results are not reliable though.

Another test that is rarely done on NHS but can be done privately is a blood smear or blood film, This can show up unusually shaped blood cells. B12 deficiency can cause shape changes in some cells. A blood film may also show if there are both macrocytic and microcytic red blood cells in your blood.

patient.info/doctor/pernici...

For B12 treatment to be effective you need good levels of iron and folate. Hopefully a good GP would monitor someone who takes iron and folate as there can be side effects.

Other useful links/books/articles

bmj.com/content/349/bmj.g5226

ukneqas-haematinics.org.uk/...

Could It be b12 by Sally Pacholok Comprehensive book, well worth reading

Pernicious Anaemia; The forgotten disease by Martyn Hooper

Living with pernicious Anaemia by Martyn Hooper

martynhooper.com/

ww.b12d.org

b12deficiency.info/

I cried while reading "Living with pernicious Anaemia" as it was like reading about myself. I have been unable to get a diagnosis or treatment from NHS and also have relatives I am concerned about.

"if anyone is in Glasgow"

I'm not in Scotland but you may be interested in the fact that a petition about B12 went before the Scottish parliament.

scottish.parliament.uk/.../...

scottish.parliament.uk/Gett...

There is a b12 Facebook group but I don't know much about this as i'm not on facebook.

[rusholme in reply to Sleepybunny]

Can I ask what the side effects are Sleepybunny, and what the GP needs to monitor/look for?

My B12 is very high now (>1500ng/L) and I have bi-monthly injections. My ferritin was low (25.6ug/L) so am taking (prescribed) ferrous gluconate 2x300mg three times a day (was up to 42.7 last blood test) , and a 5mg folic acid tablet daily plus a strong Vit B tablet daily, also both prescribed.

[Sleepybunny in reply to rusholme]

Links to side effects

nhs.uk/Conditions/Anaemia-i...

nhs.uk/Medicine-Guides/page...

[melissamoo]

Hi, Sorry to hear how you have been treated, it's horrible to be fobbed off. I just want to share with you another cause of low B12, folate and ferritin. My 14 yr old son was struggling to get out of bed in the mornings in Feb this year for a few weeks and seemed like he was struggling with anything using sustained concentration. He is at a grammar school and they said his concentration was not there at all and he was looking tired all the time. I took him to my GP, they said it looks like he has chronic fatigue syndrome. I insisted they did B12 tests which they reluctantly did. The B12 came back at 342 which is 'in range' but they said my sons folate levels were low 2.2. All his tests for intrinsic factor, glandular fever etc. were clear. The GP said he has CFS. The GP offered to prescribe folic acid but no B12.

At the same time my sister had results from her MTHFR C677T test which is a gene mutation which can cause issues with folate. She had previously had B12 injections which had been stopped when she changed GP as they said she was in range, even though her symptoms of tiredness were severe! ( She had a double mutation which means both our parents had this mutation) My mother has MS and my father died at 51 from a PE.

Anyway I became convinced my son had it too. The NHS were not prepared to test for it so I went private ( they did test it but at £299) but ended up doing the 23andme test (£125, which tests thousands of gene mutations). This revealed he had the C677T mutation ( 1 mutation) plus MTRR A66G which prevents recycling of B12!!! I had my answer!! He did need B12. Also, his genes pointed to him being an overmethylator which meant he can't tolerate methyl donors, so methylcobalamin and methylfolate are no good for him.

He started on 1mg hydroxycobalamin lozenges and 5mg folic acid and within a week his energy levels started to improve, plus I noticed he seemed more sociable. He also takes 10mg of NADH ( active B3) which is good for overmethylators. He's continuing to improve so I think this treatment has helped him a lot.

Hope this helps someone!! Good luck with everything!!

[Polaris]

Very few GPs understand the symptoms of PA/ B12 and are only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate. As you already know, devastating neurological symptoms can appear before this stage and you and your 7 yr, old should be treated aggressively without delay according to the BNF guidelines - particularly as you are in the high risk group, for B12def. being vegetarian.

Here are some links you may not have seen:

ukneqas-haematinics.org.uk/... :

b12deficiency.info/b12-writ.... (an excellent film and info on folic acid if not already seen)

chriskresser.com/what-every...

The Vegetarian Myth: youtu.be/rNON5iNf07o(Not working as expected?)

cmim.org/pdf2014/funcion.ph... :

The above latest UK research document is supported by many research papers and is peer reviewed. It tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

theyworkforyou.com/wrans/?i...

"To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed."

Countess of Mar - Crossbench

PS.

Many researchers believe leaky gut and intestinal disease is the ground zero of autoimmune disease and thyroid / PA/B12 def. are often linked both ways and symptoms overlap.

[19191919]

Have they done a colonoscopy and endoscopy yet. Mine found mild stomach atrophy and diverticulitis. It was useful. I found dairy milk boosted b12 . Good luck and take care x