Help and advice needed please - Pernicious Anaemi...

Pernicious Anaemia Society

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Help and advice needed please

thenotsocrazycatlady
thenotsocrazycatlady

Hi I'm feeling really really bad, very spaced out, brain fog, fatigued, breathless, dizzy, depressed, fluttering in chest, headache, neckache, I've always had tinnitus but now it is worse than ever and is so loud it's painful. I'm unable to do the most simplest of tasks as when I go to do anything I feel like I am either going to pass out or throw up (haven't been sick just feel nauseous). It was discovered that I had p.a. 18 mths ago during a hosp admission for heavy blood loss (3-4 pints), after 9 years of heavy bleeding and 8 weekly iron infusions due to other reasons. My diagnoses of p.a. Was never discussed with me at the hosp, I was just discharged with folic acid tablets Approx 2-3 months later my g.p. telephoned to tell me that I had to have b12 injections and to book them with the nurse, he didn't tell me that I had p.a. After my first couple of injections I asked the nurse why I had to have injections and she told me I had p.a. and that I would be on injections for life. I have not seen a haematologist or discussed my p.a. With my g.p. I also have quite bad menieres currently in remission after two years of hell (have had it for 21 years), fibromyalgia and I am on blood thinners as I get blood clots due to may thurners syndrome. All in all I am feeling quite suicidal with it all as I am unable to function and can see no light at the end of the tunnel. I have an unfinished house that I was in the middle of renovating, three sons with autism, and a daughter who doesn't speak to me as she is fed up with my being Ill all the time, so I don't get to see my grandchildren. The guilt of being useless is overwhelming especially as I am normally a strong coper who gets on with things.I didn't feel much better after the loading doses and subsequent injections so I decided at the beginning of the year to self inject and up until Aug had been injecting but not on a regular basis. I hadn't been feeling too bad up until August when I had been working quite hard in the garden in the heat and I had a really bad dizzy turn, I have not been right since then getting progressively worse. a few weeks later I was rushed to hospital with suspected brain infection/stroke and had all the tests over a week and they were all clear. I am currently injecting everyday 1mg hydroxocobalamin, sublingual methylcobalamin 6000mcg, folic acid 400ug, cranberry tablets, my blood thinner and a multivitamin. I've changed my diet and it is now relatively good with little to no dairy, sugar, wheat or processed food. I'm 54 so could it be hormones (menopause)? or am I taking too many or the wrong supplements? I'm at my wits end as I feel so strange and Its difficult to sort it all out when you feel so rough so I would be very grateful for any input or advice I've tried to help my self but I'm really struggling as I don't know what the culprit is in order to correct it. I can cope with pain but feeling spaced out and weird to the point where you cant function is impossible to deal with. Is this the p.a. Or something different thank you

19 Replies
clivealive
clivealiveForum Support

Hi thenotsocrazycatlady your descriptions of how you are feeling takes me back to how I was 46 years ago when I was diagnosed with P.A and put onto cyanocobamalin every four weeks for the rest of my life. The words "walking Zombie" comes to mind.

It is quite possible that your ups and downs are because of the irregularity of your previous B12 injections.

I am not medically trained but I am still "clivealive" at the age of 77

I wish you well.

Thank you for your kind comments, has your regime worked for you for the whole 45years? or have there been times that you gave had to tweak it either due to excessive work or the weather or other illness? The trouble with p.a. Is that you don't know that you haven't got it right until you get symptoms and then it takes ages to correct it, that is if you can find out what it is you need to do to correct it. It doesn't seem to be as easy as the nhs website says it is, 'easily remedied with an injection'. Although it could be worse we could be having to eat raw liver. Thank you again for answering

clivealive
clivealiveForum Support in reply to thenotsocrazycatlady

Oh yes I too had ups and downs and although I was supposed to be getting my cyanocobamalin B12 injections every four weeks (on a Tuesday at 10.30am) I began to notice when it was the fourth week by a return of neuropathy so occasionally (as I booked my forward appointments with reception) I scheduled the occasional three week one.

This was fine for years until in about 2010 I made the mistake of saying to my then nurse "see you in three weeks". She immediately said she couldn't give me an injection in three weeks because my prescription read "every four weeks" and she reported me to my then "one size fits all" doctor who categorically refused to alter my prescription, denying that my symptoms were "anything to do with the P.A. because I was getting the injections. Go away"

I joined the P.A. Society and on their then forum asked the question "Am I the only person in the world who feels the need of more frequent injections in the run up to my next scheduled one"? I was amazed by the number of replies. No! I was not alone.

Then began a long dispute with my doctor until I eventually got the prescription changed to "as instructed" and I now have them every three weeks and supplement with a Methylcobamalin B12 spray in between.

The reason I'm not on hydroxocobamalin is that when I was put on it in the mid 1980s I had a bad allergic reaction to it.

Your mentioning raw liver three times a day - reminds me that that was one of the options my doctor gave me in 1972 and I questioned whether that was before, after or with meals :) She laughed and offered the injections instead.

Sadly that "old" doctor from way back when died last year and I went to her funeral. I shall ever be grateful to the late Dr Wool for "sorting "Zombie" me out"

It's really terrible that there aren't any specialists, or that doctors are not educated properly. A good doctor is worth holding on to, it's just a shame that aren't that many of them about. What folates/supplements do you take with that?

clivealive
clivealiveForum Support in reply to thenotsocrazycatlady

Personally I have taken 1 – Folic Acid 400μg

and 1 – Iron Ferrous Fumarate 210mg every day for more years than I can remember and because I was deficient last year and in view of my age (77) I was also prescribed 1 – Colecalciferol 800 Unit 20mcg (Vit D) daily. In addition I take an over 70's multivitamin and Brewers yeast tablets.

Thank you. I too am frequently deficient in vit D mainly I think because I feel too ill to go anywhere. I take 400ug folic acid and multivitamin will try brewers yeast as well. Thank you for your reply

Hi!

Loved your name so much I had to look up your post!!

Must go and work now but will get back to you later or tomorrow. Please remind me if I don't (not that I'm B12d or anything!!! 😁).

Brilliantly well done for doing so much to help yourself and try to keep positive - lots of us have been there and are much better now - it's just a case of finding the right balance of the supporting supplements.

You probably need more (maybe a lot more) folate - more folic acid probably or possibly methylfolate or even folinic acid.

In the meantime please look up about Potassium and Magnesium deficiencies and excess. You may need more iron, especially heme iron.

We'll get you back together!

Catch you later. x

Thank you for your reply, in your opinion is it worth paying for an online blood test for mineral and vitamin deficiency or should my doctor be able to do it on the nhs. It is such a stab in the dark at times but it is so heartening to hear that others have been there and come through it as it doesn't feel like you could ever be normal again at the time and there is always the dread and panic that the rug can be pulled from under you at any moment (Meniere's is horrible like that 😪) I am normally such a positive person that I hate feeling so negative. Thank you for taking the time to show me that there is hope that things could get better

NHS blood tests are fine and your Dr should do them at your request but don't hang too much on them as they aren't perfectly accurate and only give you a snapshot of what your levels are at the moment they are taken.

Knowing the symptoms of deficiency and excess are more practically useful once the tests have given you an idea.

2-3 months of folic acid with no B12 to accompany it?! That alone can make you feel suicidal due to the folate trap effect (google it).

B12 should ALWAYS be started before folate, and the supplement should be folate not folic acid (the synthetic form). The reason for this is because over 50% of people have a gene variation called MTHFR which means you can’t process folic acid properly.

It can build up in your system and make you feel worse than taking nothing at all. Also makes it difficult to perform natural processes such as liver detox that your body just does normally. This can make you very unwell and MTHFR can also raise homocysteine (which then raises heart attack risk).

I’d seek out a natural form of folate from a good brand (eg. Jarrow, Swanson) and start supplementing. A high quality B Complex would be a good idea too to avoid imbalances.

I hope you feel better soon!

Thank you for your reply, I shall look that up and try to get my head around it. Trying to get the balance of everything right without the help of the medical profession is very difficult especially as we all have lots of other things to contend with in life. On the subject of the heart my pulse is always ridiculously low (37 -57 resting 60 -85 on exertion) and I am certainly not a super athlete. Blood pressure is between (100/60 & 120/85) I think they want to check my heart to see if that was the cause of my collapse, but no-one has thought it could be connected to my b12 and when I mentioned to one of the doctors that I was self injecting she told me off and said I was to stop as too much would be bad for me, when I asked her why, she couldn't answer as she didn't know. So needless to say I haven't stopped. I am so grateful for sites like this as we all need help (and hope) and we certainly aren't going to get it on the nhs.

You were absolutely right not to stop. It’s been proven time and again that B12, even in excess, does not cause harm. Your heart rate is far too slow.

Have you had your thyroid fully tested? And by fully tested I don’t mean the NHS testing just 2 things (TSH and T4) and telling you it’s “normal”

You need a full panel to cover iron & ferritin levels, folate, B12, Vitamin D, TSH, free T4, free T3, thyroid antibodies (to check for Hashimoto’s Thyroiditis - the autoimmune version of underactive thyroid that it’s estimated around 80-90% of people with underactive thyroid have - where your body mistakenly attacks your thyroid slowly destroying the tissue over the course of many years, after which you develop the underactive thyroid condition when enough of your thyroid has been destroyed that it can no longer produce enough hormone and finally is no longer “normal” via NHS tests for TSH and T4.)

Many of your symptoms correlate with low thyroid function. If I were you I’d insist on a full panel of tests from your GP, and if you don’t get it, simply buy a private test online that you can do at home. I recommend Thriva and I know most people use Medichecks. They’re both legitimate and produce quick and reliable results.

I don’t want to bamboozle you but I do think it’s worth fully looking into as B12 may not be the whole picture for you (as it wasn’t for me).

Hi

Thank you for that info. My daughter has hypothyroidism, so maybe I have it too, I don't eat much and although I'm only slightly over weight I just can't lose it and I'm so tired all the time. I will probably get it done privately as my doctor's not very good. He's missed three life threatening events where I've had to be rushed to hospital the next day after seeing him and left me waiting for three months with an iron level of 4 for an iron infusion because he had forgotten to book it.

That’s absolutely crazy! I’m so sorry to hear he’s missed not one but 3 serious things. In that case it’s even more fuel to the fire of looking out for yourself and your best interests.

Definitely worth looking into private testing if you aren’t getting anywhere. I hope that you can figure out what’s up and get it sorted. It’s not nice feeling tired all the time :(

Especially with a previous experience of low iron it could be low again couldn’t it?

I asked for a test for my iron levels as I get very breathless too but they came back normal which surprised me as I thought it must have been that too.

That doctor was wrong about B12 . You cannot overdose . Ask for scientific evidence ( there isn’t any !) There is evidence to the contrary though . Have you had your thyroid tested ? PA and thyroid problems often go hand in hand. Also one autoimmune condition is seldom alone . There might be something else in the equation.

When I asked her why too much was bad she looked puzzled and said too much of anything is bad for you, I then said that the body gets rid of any excess so you can't overdose and she looked puzzled and then said look at your levels (2000) you've got enough you don't need any more. She was a neurologist who saw me when I was in hospital. But it was clear that she knew nothing about p.a.

Just because the blood serum level is high for B12 , it doesn’t mean that it’s getting into your cells . Your symptoms are more important than any B12 level .

I haven't forgotten you - just doing long days grape picking.

More maybe tomorrow.

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