Let down by Dr's and "Specialists" in NHS - Where to now ?

[Ajay999]

I have tried to keep this as brief as possible, however please bear with me as I feel let down by the NHS and I’m at the end of the road.

My Grandfather and Father were both diagnosed with Pernicious Anaemia and my father received monthly injections of B12 for life.

I’m a 45 year old male with the following symptoms…

-Ectopic Heartbeats (confirmed by DR as I had a 7 day HR monitor fitted)

-Diarrhoea that comes on randomly and at short notice

-Short term memory and concentration deteriorating fast, my “head hurts thinking”

-Unexplained Tiredness (I need to go for 20 mins sleep at lunch time in my car)

-Horizontal ridge on my Thumbnail

-Shortness of breath when walking up stairs

-White Pigment patch of skin on my stomach (appeared in last 6 months)

I first consulted a GP 7 months ago and since then I have had over 10 appointments trying to get to the bottom of what’s going. In that period my results, some of which I have paid private for, are…

-B12 = 430 / Active B12 = 61 / Intrinsic Factor = Negative / Parietal Cell Antibodies = Positive

-Methylmalonic Acid 15.3 (9-32) = / Homocysteine = 10.0 (5-15)

All within range, expect PCA.

My Dr has ruled out “PA” every time I have seen her and she has refused to take on board the latest BJH guidelines. She did agree to refer me to a local Haematologist “specialist” however he is refusing to see me and he has commented that “my B12 levels are within range and therefore I require no further treatment” !

So where now ? Is my DR right and I don’t have PA or b12 deficiency ? She has pretty much said there is nothing more she can do for me.

Are there any Haematologist out there that are aware of the latest guidelines, preferably in Scotland, that I can get referred to ?

Do I just start and self-treat ? If so, I’m assuming it will be forever and my records will never record the fact that potentially I have PA.

Or do I just sit back and wait for my B12 to fall lower, my health to deteriorate so that the NHS eventually confirm that I do actually have PA ?

Any views or input on my position would be greatly appreciated as I’m running out of options….

Tks

A.

[fbirder]

The parietal cell antibody test can produce false positives. The facts that your MMA and homocysteine levels are OK indicates that your B12 is functioning properly.

Has your GP tested for other possibilities, like hypothyroidism or Vit D deficiency?

[Ajay999 in reply to fbirder]

Hi - Thanks for your reply- I'm not sure what you mean by False Positives but she hasn't checked the things you mention - I think she has gave up on me

Frustrated by the whole thing so think I will see what happens over the coming months.

Tks

A.

[Laura5]

Have you had your ferritin level measured? If you do have antiparietal cell antibodies, they will probably have lead to low stomach acid. Eventually this might lead to your B12 level falling and MMA and homocysteine levels going out of range (but not necessarily). However, iron deficiency, even without anaemia can cause all the symptoms you have listed and is likely if you have those antibodies.

I also had ectopic heartbeats, extreme tiredness, memory and concentration problems, shortness of breath - all of which have improved with extra iron - although I still have problems with fatigue but my ferritin levels are stubbornly low.

Edit: I also have gastro symptoms which I think are due to the low stomach acid rather than iron deficiency and I have the horizontal grooves on my nails - no change there from either extra iron or B12.

[Ajay999 in reply to Laura5]

Hi Laura- Thanks for your feedback.

My ferritin levels are fine 174 (12-300) so I don't think that's the issue. All other blood tests were fine except Liver Function tests which showed slightly high.

I'm a bit frustrated by the whole thing - might be best to let time pass and see if my B12 levels drop however not ideal.

Tks

A.

[Laura5 in reply to Ajay999]

Well that's good.

What about your full blood count? Do you have high MCV?

Which LFTs were high?

I think it is easy to focus on B12 - particularly with a family history - and it is true that you can have a deficiency even with a normal serum level, but I think the fact that active B12, MMA and homocysteine are all within range points to the problem being something else.

I would go back and say - ok so you don't think it is B12 deficiency but I feel awful. Please do some more tests to try to find out what it is!

If you have PA in the family, other autoimmune diseases are more likely so getting your thyroid hormones tested would seem sensible.

[Ajay999 in reply to Laura5]

Hi laura,

My MCHC was slightly high and my protein, Albumin, Globumin were also slightly high.

You may be right re being too focussed on PA. I have another appoitnment, with another DR, next week so will take the approach you suggest.

Tks

A.

[Polaris]

Very difficult Ajay. Going on BCSH guidelines and latest BMJ research document (which clearly state there is no gold standard test) as well as a 40% higher chance of PA if it is already in the family, all your symptoms suggest you have PA/B12 def. If left, your MMA and homocysteine would probably rise further and your symptoms get worse, which you, obviously, want to avoid.

Have you tried writing or emailing the practice with link to the latest BMJ research document and asking for a trial of B12? At least it would be on record and it states that MMA will reduce if it is the right treatment.

We are having the same problem with my relative's surgery in trying to get more frequent injections for her severe neurological and psychiatric symptoms - they would only prescribe a psychiatric drug, which didn't work last time and turned her int a zombie- dangerous as she is finding it difficult to walk anyway. They are refusing to accept that all the symptoms are B12 def. in spite of having emailed and written with, history, guidelines and research.

We have given up on these psychopaths and have ordered b12 from Germany.

[Ajay999]

Hi Polaris - Thanks for your comments.

That's a good idea to put my concerns in writing to the practice - I have tried to explain it at every appointment however they are not interested in reading or referring to the guidelines. Perhaps if I put it in writing they will at least refer to them.

I share your frustrations and the lack of understanding at GP level is astonishing. Where can you buy the b12 from germany ? Can you pm me the details please.

Thanks

A.

[Polaris in reply to Ajay999]

Thanks to a recent post here by FBirder, we ordered B12 from Germany and needles etc. from the UK site for first injection today ! I believe you can also buy B12 from Dr. Chandy's b12d.org for a donation.

"B12 from amazon.de - amazon.de/dp/B009M3TRQ4... - the site is very similar to amazon.uk, so if you're familiar with that navigation is fairly easy. Otherwise you can amazon.de open in one window and google translate in the other.

syringes, needles and wipes from amazon.uk:

Green needles to draw the solution up into the syringe - amazon.co.uk/dp/B00KI0CYK6/...

Blue needles for the actual injection - amazon.co.uk/gp/product...

2ml syringes - amazon.co.uk/gp/product...

Sterile wipes - amazon.co.uk/gp/product...

ampoules aren't scored (or aren't well scored) so I use these to open them -sepha.com/en/products/v..."

[Sleepybunny]

Hi,

Have you ever rung the PAS, they are helpful and sympathetic. In some cases they are able to intervene. If you leave a message they will get back to you.

pernicious-anaemia-society....

01656 769467

This link deals with writing to your GP/Consultant

b12deficiency.info/b12-writ...

I have written some detailed posts on recent threads and there may be something in those that might help.

[Ajay999 in reply to Sleepybunny]

Hi Sleepybunny - Yes I have joined PAS and have spoke to Martyn. When I last spoke to him he suggested there was a high probability I have PA and that I should self-inject however to be fair that was before I had all my test results.

i think i will give him another call today and talk through the full position.

Tks

A.

[Coastwalker]

Shortness of Breath whilst walking upstairs, consider:-

Low Iron = Low Oxygen = Breathlessness.

Also consider Low Thyroid (Hypothyroidism) as B12 Deficiency mimics Hypothyroidism or you can have both together.

Brain Fog and tiredness are symptoms of both B12Def. and Hypothyroidism.

[Lilnicki]

Id say your first job is to line up your ducks.....by that I mean do everything you can for optimum health. Does sound like your thyroid is struggling a bit, and you may well have low folate, iron and vitD. Here are my suggestions:

Give up gluten. It has been shown to be the cause or trigger for thyroid problems for some people, and can also block absorption of nutrients across the gut. You get pretty much all your nutrients for optimum health from the food you eat. Make sure you're getting all the vitamins and minerals you need.

Make sure you're hydrated, that's 2 litres a day, and I would give up coffee if you drink it. This can badly impact the adrenals. ( thyroid , adrenals, pituitary and B12 function are all intertwined, so make sure you're doing what you can to balance them all ).

Cut out refined sugar.

Try and cut out any stressors, and sit and do some quite breathing for at least 10 minutes a day.

Once you've done all that for a couple of weeks, you should feel some improvements. Then you'll know whatever symptoms you're left with are what need looking at.

A couple of points to bare in mind. MMA and Homocysteine can both fluctuate in untreated B12 deficiency, so negative results don't rule it out. Also the serum B12 level can be normal in functional deficiency, so somewhere in the 400 's doesn't rule it out either.

Get yourself as healthy as possible, then take it from there.