Urgently need advice please

[Babygodmother]

Hi everyone, I posted about a week ago with -

"I know I have PA, my GP says I don't!"

SORRY, THIS IS A LONG POST, SO THX FOR YOUR PATIENCE

First of all, THANK YOU ALL SO MUCH FOR REPLYING, YOU MAY HAVE SAVED MY LIFE.

Secondly, sorry for the lack of replies/acknowledgement of your time you all took to help me out. This is because the last week has been like a nightmare. I have still yet to be "officially" diagnosed...

My mum and I spent time early last week preparing all the fantastic information you posted (guidelines/BMJ article etc) and wrote a letter for my GP. It took ages, as my concentration levels are next to zero. Mum delivered it on Tues, I saw my GP on Thursday morning who I think has now got the hint that I have B12 deficiency (still awaiting my IF antibodies, but will take result with a pinch of salt).

My GP was very jumpy and we didn't have much interaction (I found it very hard to look at him and my mum was there) and said he was going to get me admitted to hospital "in case I'm missing something". His letter for the admitting doctor said "possible B12 deficiency in line with multiple symptoms, although serum B12 is normal" NB I'm in the "grey zone", although it has dropped by nearly 200 in a few weeks, now at around 260.

I had begged him the week before (as it does no harm) to start me on B12 injections, which he did (to "humour me" and only at my instance as my neurological symptoms were getting worse. The neurologist said it was fine). I have now had 6 doses of hydroxocobalamin 1mg/1ml on alternate days. My neuro symptoms are improving, though still getting some pins/needles and burning sensation in my toes, some dizziness and definite fogginess.

I want to continue with these every other day until I feel my neuro symptoms have improved as much as possible (and in line with BNF UK guidelines). I am self injecting as I am a practice nurse and do this every day in my job. Not as easy to stick a needle into yourself, though!

My issue just now is I am getting constant chest pain. I have had this for around 2 weeks, sometimes I get a migraine with it (I also have a constant, mild headache). It was so bad on Thursday, I thought I was having a heart attack and had to call 999. I got all the tests, all negative. The 2 times I was in hospital on Thursday, I asked if I could see a haematologist as my GP and I both felt I had PA - four doctors told me "your B12 is fine" (argh!!) THEY DO NOT HAVE A CLUE ABOUT THIS DISEASE!

I explained about the "grey area" and that PA can cause heart problems. They all said it was stress or indigestion. My reply "I know where my heart is, and it's hurting" - not one doctor prepared to take it further, passed my back to my GP for referral, whom I am getting a telephone consult with tomorrow.

I have a 48 hr monitor on from palpitations clinic, as that is what I initially went to my GP for a couple months ago.

So, my questions are

1. Is it just the anaemia that is causing my chest pain? My HB was "low normal", my ferritin was 10, so currently on iron supplements. I am VERY, VERY concerned about this.

2. Should I be worried about this pain? It is horrendous, sometimes... has anyone else experienced this? I am worried that I will have permanent damage.

3. I am concerned about my management, or lack of .... I will stay on B12 alternate days as long as I feel the need, but my GP should, at the very least, be taking urgent advice from a haematologist re my symptoms and referring me/admitting me directly to haematology.

4. I have asked my GP to find out re extra vitamins, ie folic acid. I believe you should be on 5mg of this, is that daily, just while you're having injections, or for life?? Also, I've been told I have to take vitamin C as it will help absorb the iron.

5. What bloods should I be getting? I think I should be getting my TFTs/cortisol rechecked, also aware U&E should be done (for potassium levels, got this at the hospital and it was OK).

6. Can I stay on my HRT patches, ie is it safe?

I am also awaiting a colonoscopy for "unexplained anaemia" and am now freaking out about bowel cancer as I have had these symptoms for years.

Any advice would be so, so grateful. Thank you all, I don't know what I would have done without you. I am sure I would be in a really bad way, with increasing neuro symptoms and lots of doctors scratching their heads and ignoring the big neon "This woman has PA!" sign flashing over my head! Sorry if any of this is garbled, still very hard to concentrate.

[Gambit62 Administrator]

Glad you managed to get your GP to listen and that things are moving.

I don't have anaemia and wouldn't like to say what might be causing it. It could be related or it could be unrelated however, in connection with the previous post on MTRR A66GG mutation I did come across a few articles on impact of this genetic mutation (along with MTHFR C677T) and their effect on methylation of B12 ... and interactions with migraine and homocysteine. Homocysteine would certainly fit with cardio-vascular problems ... though I guess it isn't clear that the chest pain really is cardio-vascular.

ncbi.nlm.nih.gov/pubmed/114...

ncbi.nlm.nih.gov/pubmed/229...

I have problems with migraines - hormonal - but they get really bad if I don't have enough B6 - mainly the gut spasms. My theory is that it's a chain of body using a lot of folate (though I do supplement folic acid) and stripping out B6 to make more B9 (as body can convert one to the other ... but I'm certainly not a bio-chemist.

B12 deficiency can take decades to manifest (because it gets stored and recycled very efficiently through the liver and ileum) - I had 4 decades of depression before it really started to get bad and other symptoms started to manifest significantly, so it may just be that the symptoms you mention were the first ones to start manifesting. The deficiency does tend to snowball towards the end though.

Anxiety itself is one of the neuropsychiatric symptoms of B12 - which isn't to say that your fears are groundless - just to say that the mechanism that tends to regulate those types of thoughts doesn't work particularly well when you have a B12 deficiency so things that you'd just shrug off normally will go round and round and be very intrusive.

Unfortunately higher risk of cancer is also a consequence of B12 deficiency. However, the colonoscopy may be one way of ruling out advanced affects on the ileum of PA.

I used to get excruciating pain in my chest in the year or so before diagnosis and the year after before I got my levels right for me - which was acid reflux - never thought it was a heart attack or anything because I associate that with pain in the arms and that never occured ... and on occasion the only way to get rid of it was to throw up. Acid reflux is another potential symptom of B12D.

I would be surprised if B12 affected or was affected by HRT patches, though I'm sure you are aware that HRT has been linked to cardio-vascular problems - namely thrombosis.

On the tests and other vitamins - folate levels really need to be mid range - you can get through a lot of B9 if you are metabolising a lot of B12 so some supplementation can help but best form is folate from food and other forms can cause problems.

You need vitamin C to be present to absorb iron but I don't think it needs to be in enormous quantities - just trace seems to do the job from the studies that I saw - albeit that was about 10 years ago.

If you have an absorption problem then B12 injections will be for life - though at a reduced rate ... well, that's the theory - doesn't work for all of us ... although I seem to manage to use a nasal spray as a good proxy to injections.

Balancing vitamins is an art rather than a science as there is a lot of variation from one person to another so probably best to listen to what your body is telling you. My body tends to crave spinach - which I take as being about folate levels as it is a lousy source for iron (contains something that generally inhibits the uptake of iron) ... though interestingly brocoli is probably better for both.

If you have an absorption problem then it is quite common for other vitamins - eg D - to be an issue ... definitely something to watch if you are on HRT as both are risks for osteoporosis ... as indeed is B12D.

Unfortunately it is quite common for B12 absorption problems - particularly when caused by PA to be concurrent with other autoimmune problems and because of the overlap in symptoms it gets very difficult to rule things out. Tests can help but just as tests for B12 aren't 100% specific tests for other conditions can also require a bit of interpretation.

[Babygodmother in reply to Gambit62]

Hi thank you so much for your reply, I am feeling a bit better than earlier and chest pain to a minimum. My worry is that nothing specific triggers it...

I have a long history of many symptoms - IBS/chronic gastritis the main ones, and using meds for reflux (which I have now stopped). I know the pain is definitely NOT indigestion/reflux cos I know what this feels like. I am a nurse, I know where my heart is and I know this is what is hurting - it is totally different to the reflux/indigestion pain. On Thursday, it was severe and into my left shoulder, throat and upper back (symptoms like a heart attack). I am 49 and usually really fit - I had horrid hip surgery 2 yrs ago and have got back to fitness, now I feel so ill, it's awful. I am also loosing weight.

Thanks for all the vitamin advice, I am taking vit D anyway because of my bone issue, also started vit C today and taking OJ at breakfast. I am taking folic acid but only the tiny amount in the supplements, I am sure this is not enough - guidelines state 5mg/day. I am sure I should be taken an all-round B-vitamin, just trying to find a decent one... can you recommend anything?

Do you know any good sources of folate from food? I don't eat any dairy, just cos I don't like it, and not a great shellfish/red meat fan - maybe that's where my problems started.

I think this disease has been creeping up on me for years. You're right - the snowball effect started about 6 weeks ago when the neuro symptoms started.

Thanks

[Gambit62 Administrator in reply to Babygodmother]

Although B12D can be dietary it doesn't sound like that is the case for you - most breakfast cereals are fortified with B12 these days.

most fruit and veg is good for folic acid - think brocoli is particularly good but I'd need to double check that to be sure.

It might be worth finding out if nitrous oxide was used as an anaesthetic in your surgery - it's a super 'oxidiser' when it comes to B12 so will have taken out a lot of your B12 reserves and made them useless ... though that won't have shown up in the serum tests.

[Babygodmother in reply to Gambit62]

Hey, thanks again. I will phone my surgeons secretary and see if I can find out. I know about this. I remember having it during my first labour (I think entonox is the same thing?) Didn't have it long cos it made me feel sick.

I also teach birthing classes and know that this analgesic is used like chocolate, everyone seems to use it. If some ppl are low in B12, it could be a catastrophe waiting to happen. My second baby was premature and small, that would explain a lot too. I am worried about her, she is 7 and being saying a lot of weird things recently.

I think I will be giving up gluten as I am struggling with it and have been for a while. I am not coeliac, but a doc suggested (gastroenterologist) that I was "intolerant".

Pitty I don't like broccoli!

[Gambit62 Administrator in reply to Babygodmother]

spinach also good for folate - but lousy for iron if you have anaemia.

[Astridnova in reply to Babygodmother]

Hi,

Have you considered the recommendation of cauation of rate introduction and amount of B12 supplements and enlarged red blood cells, which can cause heart problems? Also, "Use cautiously in people with low serum levels of potassium, as the correction of megaloblastic anemia with vitamin B12 may result in fatally low potassium level - See more at: ww5.komen.org/BreastCancer/...

And, is there any possibility of Lupus or Hashimoto's disease concurrently? They often go together with B12 and diabetes. Lupus, as you would be aware, can cause pericarditis and Hashimotos can cause heart problems.

Someone asked about your homocystein levels, which was a good question.

Good luck.

[Sleepybunny]

I'm sure the PAS might be able to help especially as your symptoms seem so severe. In some cases they are able to intervene.

pernicious-anaemia-society.... 01656 769467

"1. Is it just the anaemia that is causing my chest pain?"

As you have started to supplement with B12, is your potassium level being monitored?

Some people experience a drop in potassium level when starting B12 treatment. When I googled "hypokalaemia UK", there were lots of links to UK hospital guidelines.

1) patient.info/doctor/hypokal...

2) BCSH Cobalamin and Folate Guidelines mention that potassium relacement therapy may be necessary but can't remember which page.

3) Googling "Hypokalaemia chest pain" gives plaenty of links. US spelling is hypokalemia.

4) b12deficiency.info/what-to-...

"3. I am concerned about my management, or lack of"

If you are unhappy with your treatment.....

1) b12deficiency.info/b12-writ...

The person who runs this site is very sympathetic. Her contact details are on website.

2) nhs.uk/chq/pages/1084.aspx?...

nhs.uk/choiceintheNHS/Right...

nhscomplaintsadvocacy.org/w...

3) england.nhs.uk/contact-us/c...

4) I have in past contacted my MP. MPs can be useful in getting replies from the NHS and other official bodies such as Health ministers. The minister for long term conditions is Jane Ellison mp I think.

"4. I have asked my GP to find out re extra vitamins"

There is some advice I think in the BCSH Cobalamin and Folate guidelines.

[Babygodmother in reply to Sleepybunny]

Thanks for your reply and all the useful links...

I have emailed/phoned the PAS and waiting for them to get back to me. I'll ask them re the folic acid, I don't think I am getting enough. I read you are supposed to have 5mg.

My potassium was taken last week at hospital (a wk after starting B12 inj) and was fine. Do you know how long I need to have this monitored, considering I am taking B12 every other day at the moment? I had the chest pain even before I started injections...

I live in Scotland, health is a devolved issue. I need to get in touch with my MSP (Scottish Parliament), I got him involved with a previous issue and he was useless. Ironically, I know my Westminster MP personally - but she is not the right person to contact, she would be great...

I will see what tomorrow brings from my GP. He won't miss B12 deficiency again.

Thanks xx

[humanbean]

Please note : I'm not a doctor and I never got any proof of any of the following - this is all anecdotal, for what that is worth.

As someone who also got severe chest pain with low ferritin and low-normal Hb, I came to the conclusion after lots of research online that the problem was probably caused by a build up of lactic acid in my heart. This can happen when the heart receives insufficient oxygen. In my case I probably also had low blood volume too, caused by a GI bleed that went on for a very long time.

Obviously, the usual cause of lactic acid build up in the heart is blocked coronary arteries that cause angina or a heart attack, but if the blood is unable to deliver enough oxygen to the tissues of the heart I would have thought it could have a similar effect. I had an angiograph done to check the state of my coronary arteries and although there was a small amount of calcification, none of my arteries were close to being blocked, so I'm convinced the problem was low iron, low Hb, and low red blood cell counts.

Some questions :

How much iron are you taking? What kind? And I would agree with taking vitamin C with the iron. How much of that are you taking?

Do you have gut problems? E.g. Indigestion, diarrhoea, acid reflux, heartburn. Do you take acid blockers or antacids? It took me nearly two years to get my ferritin up to mid-range, and it was only when I gave up gluten that I succeeded. I had been tested for coeliac disease but it came back negative. I eventually gave up gluten out of desperation, I really didn't want to do it and thought it would be a waste of time. It really wasn't. If your gut is in poor condition then you won't absorb the iron.

I have good levels of B12 in serum and also good levels of Active B12. But I still had loads of problems that suggested a B12 deficiency. In the end I started supplementing with methylcobalamin and it has been amazing - my brain has started functioning well for the first time in years.

Also, I have a thyroid problem, and taking T3 on its own has helped me hugely.

I'm sure the iron and the T3 were the biggest contributors in reducing my chest pain. I never get it any more, other than the odd twinge. Over a period of about three years I either went to hospital myself or called an ambulance 6 or 7 times with the chest pain - it really was excruciating and I had it solidly for about two years, with no respite even in bed. I haven't needed to go to hospital at all (for chest pain) for about 15 months now.

[Babygodmother in reply to humanbean]

Hi humanbean

That is really useful information, this is certainly my theory - I am a nurse and my detective hat is truly on at the moment - I diagnosed my B12 with the thanks to all of you on here, read all the guidelines etc and, thank God I did, as I am in no doubt whatsoever I would be in a bad way had I not basically held my GP to ransom and insisted he treat for B12 as my health was going rapidly downhill. I work in a doctor's surgery, my boss was practically mocking me when I said I have a B12 deficiency!

I reckon the low oxygen is doing this - I am just concerned re damage to my heart and will be asking for an angiograph, too. I think your theory makes complete sense. I don't have a GI bleed as I had a recent gastroscopy 6 months ago and all was normal (for increase in reflux, but now I know why that was happening too).

I just got my vitamin C today, 500mg. Taking a glass of OJ at breakfast. Iron supps are Ferrous Fumarate, 210mg 2-3 times a day. They can make me feel nauseous and may/may not be upsetting my stomach (well, it is always upset). If I can only take 2, I am taking some Floridix as a top-up.

I have long term IBS, also gastritis. I have stopped taking my omeprazole as this is probably contributing/accelerated my symptoms. I recently got tested for coeliac, also negative. But, gluten does upset me and it has been suggested I have an "intolerance". I try not to eat too much of it and have certainly improved my diet. I think I will have to throw all my cereal out!

Is porridge OK? Did you find it hard to cut it out completely? I have 2 kids to look after and this is a real problem.

Thanks so much xx

[humanbean in reply to Babygodmother]

For info on reflux, some useful links :

scdlifestyle.com/2012/06/hy...

scdlifestyle.com/2012/03/3-...

scdlifestyle.com/2012/03/ho...

scdlifestyle.com/2013/10/4-...

Also do a google search for "Chris Kresser" and "GERD". He did a very interesting set of 6 articles that explain his theories about how and why reflux occurs, and they make sense to me.

Taking 500mg - 1000mg of vitamin C with each iron pill is a good idea. It is supposed to help the body to absorb the iron. But possibly even more important - iron supplements cause constipation and vitamin C in high enough doses will cause diarrhoea. If you get the balance right between the two it will make supplementing a lot more comfortable.

If you find that you can't tolerate ferrous fumarate then remember there are loads more iron supplements available, and you don't need a prescription.

There are loads of posts about iron supplementing on the Thyroid UK site. Helvella's post on this thread is very interesting :

healthunlocked.com/thyroidu...

Going gluten-free... I didn't/don't find this fun, and I still find it annoying I have to do this. Unfortunately, going gluten-free just some of the time doesn't really help. It has to be done 100%. It isn't like a diet you can cheat on occasionally. I am not an expert on being g-f, I am still a reluctant novice. There is a community on HealthUnlocked that might interest you - Gluten Free Guerrillas which you can join here :

healthunlocked.com/glutenfr...

There are some people with gluten problems who can't eat oats either. I don't have any obvious problem with oats but I do buy g-f porridge, and gnash my teeth and swear about the price of it.

Good luck.

[wedgewood in reply to Babygodmother]

Dear Babygodmother,

Sorry that you are having such problems. But you have come to the right place! There are so many kind and knowledgeable people on this site! I have P.A., and it has been a terrible journey to get diagnosed and still not get the necessary treatment. It took forever. And then the attitude of the docs----quite nasty at times as you will have discovered. At long last I have got a gastroenterologist to state in writing that P.A. sufferers have low or no Hydrochloric stomach acid. Also there is no NHS treatment for it. (Hypo or Achlorhydria) .This caused in me I.B.S.-similar symptoms. This was greatly helped with a water-based probiotic called SYMPROVE. It's quite expensive, but worked wonders for me.I now, after 6 months manage on half the dose, which helps financially! Low stomach acid causes many problems not the least of which is poor absorption of other vitamins and minerals. This may be of use to you. I hope so. With very best wishes .

[Jo55]

Hi

Have you tried the Fodmap diet. Although a bit restrictive at first it has helped with my IBS a lot

[Sleepybunny]

"I have stopped taking my omeprazole"

I guess you know that this drug can affect the uptake of B12 in your body. Some diabetic drugs or asthma drugs can affect uptake. There is a chapter in the book "Could It Be B12" by Sally Pacholok that has a list of drugs that can interfere with uptake.

b12deficiency.info/what-are...

pharmacologyweekly.com/arti...

nhs.uk/medicine-guides/page...

"Going gluten-free... I didn't/don't find this fun"

I chose to go gluten free which stopped the IBS symptoms I was having. I also went dairy free as well. My coeliac teste were negative. Coeliac UK mention on their website that it is possible to have negative tests and still have coeliac disease. I was never referred to a gastroenterologist even thoough I had IBS symptoms for severeal years.

nhs.uk/Conditions/Coeliac-d...

coeliac.org.uk/coeliac-dise...

"I live in Scotland"

Have you seen the petition that went before the Scottish Parliament about B12 treatment?

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

scottish.parliament.uk/Gett...

Potassium...."Do you know how long I need to have this monitored"

Sorry I don't. Perhaps the PAS can answer this.

[Sleepybunny in reply to Sleepybunny]

More info on nitrous oxide

gov.uk/drug-safety-update/n...

[Polaris]

It could very well be that your homocysteine is high as you've not enough B12 - but difficult to say without testing.

I've had Hashimoto's thyroid and, later, B12 issues, for years with accompanying gastritis, heartburn, gall bladder pain, migraine, H/pylori, IBS, etc. The severe chest pain I experienced occasionally, usually at night, could have been mistaken for heart problems but was not (I have two leaky valves).

Over the years, I found these effective solutions, thus eventually avoiding the acid suppressors, PPIs, etc.

Gall bladder pain. : Apple cider vinegar (with the mother)

Heartburn: Vogel's Centaurium drops, ACV

IBS: Swedish Bitters (start gently) - and avoid gluten

H/Pylori: Sauerkraut

Gastritis: Sauerkraut

Since avoiding gluten though and taking a few spoonfuls of sauerkraut a day (better than any probiotic), as well as supplementing with Jarrows Methylcobalamin 5000 mcg SL, I'm now mostly pain free

Many researchers believe that leaky gut/intestinal disease is the ground zero of autoimmune disease. I believe this, and vitamin B12 as the builder of DNA, is the key to it all and at the bottom of all our family autoimmune issues.

Hope this helps....

[Bluedragon]

You asked for recommendations on B complex - look at Thorne and Jarrow - both on Amazon. I take the Thorne - I used to take Integrative Therapeutics but am rubbish at reordering and they take ages as come from US.

Are you taking K2 and magnesium with the D3 - build D3 upto 10,000 iu a day.

How are your thyroid levels? Something else that is not diagnosed or treated well. Got to be all tests, not just TSH - free T4 and free T3 at least - antibodies too if can get them.

I had lots of heart palpitations before starting B12 - I self inject - thigh or stomach sc every two or three days. Don't have then now.

[shevie]

you are right about the folic acid. most people would take 5mg a day, but you try getting your doc to write a script for it! The 400ug tabs are really cheap to buy in aldi, lidl, tesco, asda etc and you would need to take 12 a day, yes 12!! but it is essential because neither folic nor b12 can work well without plenty of the other!

[MariLiz]

I've been hospitalised with severe chest pain and told it was oesophageal spasm caused by the acid reflux. It was very scary and hurt around my chest and up into my shoulder and throat. I would be too frightened to stop the PPI's I take to prevent it. MariLiz

[Coastwalker]

Yes! like Bluedragon asks what are your thyroid levels ? Doctors will often say they are NORMAL, when they are not, same as B12 Deficiency and it's 'Grey Area'

Also B12 Deficiency mimics Hypothyroidism, or the two can often go hand in hand, Just a thought mind you, Babygodmother.

I always ask for my blood result printout and ranges. Do you know what your Thyroid results were ?