Pernicious Anaemia Society
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The power of two words: 'medical' and 'negligence'

I thought I would post an update on my situation as it may be of help to others and, well, I need to tell someone as I’m quietly fuming.

I’ve just had a call from my doctor apologising to me because “I must’ve pressed cancel instead of send or something”, referring to the letter I asked her back in September to send to a haematologist as with neurological issues my treatment is supposed to be supervised from the start by one. I have asked multiple times since then for her to chase the appointment up, each time she’s said she would, which I find strange as still no appointment, so how would you chase up a letter that’s not been sent?

Back last summer I’d gone to the doctors due to continual headaches, and one of the blood tests done in August was for B12, which came back as 155pg/mL [180-914]. I was given a set of loading doses and nothing else, no follow-up appointment, nothing. I ended up asking the nurses what the plan was, one told me I had to have injections every three months after, then they’d check me again after a year. Another told me I’d have to have injections for life.

These initial loading doses made me feel awesome - like night and day, I was back out cycling, and at the beginning of September I went up to London for a long weekend to attend an entrepreneur conference. I felt great and even went out dancing one night till the wee hours. At this time I had no idea what B12 was, or that alcohol could affect it, or that eating gluten was potentially one of the issues that had caused trouble throughout my life.

Shortly after this conference I crashed, and crashed badly. That’s when my research started and I discovered this group and a few others. I went back to the doctors and showed them the guidelines and that I should’ve been injected alternate days and supervised by a haematologist but was told they could put me on another set of loading doses and they would write to the haematologist, the letter would be sent the next day. I took along a folder-full of printouts I’d made, the only thing she’d take was the form I’d filled out with the neurological and other symptoms, and was told that would be included in the letter. I’d listed out all the signs that pointed towards B12 deficiency since birth and that this wasn’t a simple loading doses then three monthly fix-and-go, she said “Well the best I can do is change them to monthly”, and I’m sure she said “at least they can’t say we didn’t do anything”. Since then I’ve audio recorded every meeting, I may have that one as well, will have to check.

By that time I couldn’t hardly stand up, wobbly gait, unable to focus, five second memory, and all the signs of Subacute Combined Degeneration (‘SACD’) of the spinal cord. I had the first of my second loading doses, then a call came saying the nurse was away and it would be another week before I would have my second. From research I saw there’s only a short space of time for SACD to be treated properly before damage is permanent, and I didn’t want to be permanently like I was, it was nightmarish. I also discovered the stress factor and the sheer amount B12 does in terms of your thinking and eventually your body movements.

This is when I took the plunge and decided to self-inject, today I’ve just done my 111th injection since 30th September and am self-injecting twice a day, along with taking all the cofactors and my ‘sweet spot’ of 2x5mg Methylfolate. It’s keeping me able to do things, but I feel the underlying issues are not changing, in fact I feel they’re getting worse but perhaps that’s just because I’ve been stressing about the lack of support I’ve had from the NHS.

After more help from the support groups I went back and asked for further blood tests, including Vitamin D. In October, it was 35nmol/L [40-250] so the doctor called me back in and she said I’d need to take 20,000IU twice a week. After more research online I decided to follow a vitamin D protocol and started on 5,000IU daily, I’m now up to 20,000IU daily which seems to be my ‘sweet spot’. I was told I’d need a calcium test in three months and depending on the results of that, a test for parathyroidism. I asked about the haematologist, was told it would be chased up.

As I continued my research and getting the right cofactors in order just to be able to function and not be bed bound as I have for almost three years I saw parathyroidism is just another symptom, and as nothing seems to be getting better and my current cost is around £150pcm which I’m having to borrow I realised nothing was happening and again I’d have to push things along.

For the past week I’ve been compiling a letter, saying I’m concerned my serious B12 deficiency issues aren’t being addressed, only current plan is a parathyroid test which is another symptom of B12 deficiency. I said the only reason I look awake and alert is because I’m on this expensive regime, if I wasn’t I wouldn’t be there. I said I’d tried going a day without injecting and trying sublinguals, they did nothing no matter how many I shoved under my tongue for hours. I again listed out all my previous pointers to B12 deficiency and my mis-and-missed diagnoses, from depression in 1994 to large red blood cells in 2015 which is a sign of advanced B12 deficiency.

I asked for Ferritin, Folate, CBC, including Potassium & Magnesium blood tests to check as I’m on this supplementation and injection regime I’ve only discovered through groups on the internet and nothing “official”. I mentioned the pins and needles / tingling in my feet, sometimes hands and face, and that it can not only be a sign of parathyroidism but also B12 deficiency, and maybe with the occasional pain the vitamin D working pushing calcium into the bones. I mentioned I’m still getting the dull headaches, and that they’re in the same place I had a head injury as a child so was a little worried. I asked again for an MRI scan to see if there were any issues caused by the SACD, and I asked again for a neurologist appointment. I also said I’d been gluten free now for three months and that I haven’t drunk alcohol for over two. I don’t even have the want for it now, or for the red meat I used to be such a massive eater of, making my own beef chillis and practically living off those. Ten or so years ago I’d given up gluten and had lost a lot of weight but had attributed that more to the exercise I was doing and not realising that giving up the gluten had actually given me the energy to do the exercise.

I finished the letter saying that if nothing changes in the non treatment of my B12 deficiency then I would be investigating my options. I said I’ve not been treated according to the NICE and BNF guidelines for B12 deficiency with neurological issues and three months on I feel this is now bordering on medical negligence. I said I continue to bring more evidence and information which you choose to ignore. I also said I was donating two books, “What you need to know about Pernicious Anaemia and Vitamin B12 deficiency” and “Could it be B12? An Epidemic of Misdiagnoses” to the surgery in the hope of a proper diagnosis and to help others, and I left them on her desk as I gave her the letter.

A half an hour I was in there, she tested to see if I could stand up straight and walk in a straight line, I said well I did my second injection of the day ten minutes before I left the house. She then went on to compile a letter to the neurologist (so obviously one hadn’t been written) and I ended up in there for half an hour whilst she tapped away, apologising for her lack of typing ability.

So today I get a call with this apology for the ‘mix-up’ in the letter that she absolutely did write to the haematologist then must’ve accidentally pressed cancel instead of send. No mention of the follow-ups she must’ve accidentally not done, but apparently the letters have both been faxed off now and so something should be moving along. She mentioned I’d left my books there, I pointed out that it does say in the letter I sent her that they were donations to the surgery. She said her whole family has B12 deficiency so knows the situation, I said well I don’t see how that can be as I wasn’t treated according to the current guidelines which is why I donated the books. Incredulous.

I don’t personally think there’s anything anyone can do now which will improve the underlying system apart from me ensuring I have less stress, keep my diet going and hope that at some point my body might absorb B12 more, but I’m only three months in and I’ve seen that’s very early so will just have to be positive and keep going. I’m understanding myself more so can see when I start sliding as I get snappy and stuff, soon rectified by another shot of B12.

So once again thanks for the support and help of this group and again apologies for times I may have been more reactive than I should’ve been, I wish you all the best in your recoveries. I don’t know this is gonna pan out but so far I’m pretty disgusted with the lack of awareness and hope I can do my bit whilst I’m around to help there.

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Hi b12d so saddened to read this....

You say you "asked for Ferritin, Folate, CBC, including Potassium & Magnesium blood tests" to be done have you actually supplemented your Folate?

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Yup, we've had this convo before I rage quitted due to discussions around it. I rejoined under a different username ;)

I first tried folic acid but it didn't do too well so went on methylfolate which is awesome. I'm currently taking 2x5mg daily, I've tried going without, again no good, so happy I'm on the current level I am. Well, I'd rather be on nothing and not injecting but hey...

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Are your twice a day injections subcutaneous or intramuscular?

I'm asking because, eventually, scar tissue builds up in the muscle if you're doing IM injections into the same place. If you're injecting twice a day, you may run into that problem sooner than most people.

Also, please keep in mind that vitamin D, unlike vitamin B12, is a fat soluble vitamin and can build up to a toxic level in the body. So while 20,000 IU might be a sweet-spot currently, you'll want to monitor your level and back down from there.

I'm sorry your experience with your doctor was less than great. The fact that she offered once a month injections is actually a refreshing improvement over what most people on this forum seem to experience.

Regardless of what doctor you see next, I recommend getting copies of all the lab work that you've had done. You are entitled to have copies of it, though you may be asked to pay a small administrative fee for making the copies. Make sure they've included the reference ranges with the results. It becomes a helpful resource if you go to a new doctor and they want to run the same tests over again trying to re-assess whether there's really a medical problem.

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Hiya - I'm alternating thighs at the moment and hoping my twice a day doesn't have to last long but I'm also needing to do things apart from just be bedridden all day and whenever I do anything that requires thinking it drains my B12. I'm not going to get supported financially for that much longer, so have to do bits each day to build up my business again.

I'm not sure where else I can inject that I'm going to be able to, I'll do some more research.

I asked for Vitamin D to be checked, she put it on the form but said they might not do it as only every six months, we'll see on Thursday when I go to get them done at the hospital drop-in.

I've got all my blood tests and a huge spreadsheet with dates, ranges, and a colour-coded system for whether it's low, mid, high or out of range :D

I'm also keeping a journal of symptoms which I was doing on a daily basis but now it's more every few days.

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Oh, they're IM btw.

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...I'm also taking K2 complex (MK4 & MK7) as in the protocol I'm following it says taking that at night helps when having the D in the morning. I'm also taking 100mg of B2 daily as it recommends that if you're taking more than 10,000IU daily. Others I see for different illnesses take seemingly vast amounts more than that. I will try taking it down again in a few days.

Not sure how 'fat soluble' works but I've got plenty of fat for it to be soluble in ;) I'll do some more research, thanks for the heads-up.

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A half an hour I was in there, she tested to see if I could stand up straight and walk in a straight line, I said well I did my second injection of the day ten minutes before I left the house.

Are you saying that your ataxia is fixed 2 hours after an injection?

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I wobbled a little bit but not as much as if I hadn't have injected, I guess I was referring more to the fact that I'd be a writhing mess if I'd been on their monthly shot regime with no cofactors.

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(i.e. wobbled when eyes closed, just tried it out again and swayed more than I did in the doc but that's cos I've just spend a few hours doing stuff)

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I wouldn't tell the doctor any of that.

If your ataxia is caused by demyelination of the nerves then it will take weeks for any noticeable difference either way.

If it improves/degrades over hours then it's not B12.

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I'm definitely more unstable with my eyes closed if I haven't taken stuff for a while. I'm going to have a couple of weeks off the B complex to see if I'm having too much B6 at the moment.

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...I see from wikipedia there's 'gluten ataxia' too so perhaps that contributed to my extreme wobbliness and gait previously - I've been gluten-free for three months now.

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My neurologist told me that gluten ataxia is non-existent. There are papers published, all by one person. Nobody else can replicate his results.

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Interesting! The biggest effect that happens is my thoughts although I do realise that's also because I'm still stressing out way too much. I noticed a couple of weeks back on one of my weekly walks (apart from short shopping trips that's all I'm managing at the moment) that my legs were going wobbly again but not had that much lately, it's mostly just feeling exhausted all the time, and I realise that's also due to lack of exercise. Much fun eh.

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fbirder, I don't think demylenation is the only possible cause of ataxia -

ncbi.nlm.nih.gov/pmc/articl...

B12 could be involved in a process somewhere else that leads to ataxia - eg muscle weakness - and this system might respond much quicker to adequate levels of B12.

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Indeed, there are many causes of ataxia. Mine isn't caused by B12.

But I know of none where B12 reduces symptoms within hours of a dose, nor can I conceive of any mechanism whereby that could happen.

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That's good to know, I didn't so was worried I would seem fine when all is not fine!

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b12d - do you mean hypothyroidism rather than parathyroidism? would be interested to know if you have a source that links parathyroidism as a symptom of B12 deficiency as it's not something that I can find.

I'm also not aware that anyone has established that either hyper or hypo-thyroidism are caused by or can cause B12 - though there is a high incidence of autoimmune thyroid problems and PA ...

I am not aware that any of the guidelines say that you should be under a haematologist if you have neurological symptoms - though they do recommend referal to a haematlogist to establish the exact nature of the cause of B12 deficiency, particularly where there are neurological symptoms.

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Oops, seems I got that wrong, still, pretty obvious she didn't read the letter in full so doubt she'll notice. I was searching the books on kindle and found "Hypo or hyperthyroidism" in Appendix 2. Still, my point was that was a result of the Vitamin D test that I asked for and not the underlying B12 issues, i.e. the main problem wasn't being dealt with. Even on that point, I noted in the letter:

Also, according to parathyroid.com/hyperparath...

"You need to get Calcium, PTH and Phosphate done at the same time by the same lab to get accurate results”

as she wanted calcium test first then PTH, when it seems the above is a better process.

Will respond to the other points separately

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I took the haematologist point from the NICE guidelines:

"For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."

So not specifically supervision but I wouldn't say 3 months is "seeking urgent specialist advice"!

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probably just terminology 'being under' is a term that I would associate with saying that your treatment needed to be supervised by the relevant specialist - rather than a referral for advice.

to be honest, give that many haematologists are just as ill-informed as GPs about B12 deficiency I'm not sure that I'd personally regard it as a particularly useful recommendation. At least your GP did follow the alternative - which I think is far more important - many find that the start of their treatment actually gets delayed whilst GPs seek a haematologist referal.

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Oh I'm expecting nothing from the haematologist or neurologist, I'm just going through the process as I don't know what the future holds so I need to ensure there's a paper trail in case I need state support at any time, or say I want and am able to go abroad and need to take any medication with me.

They only sent the letter cos I asked, the only thing I've ever had from her was the original loading doses, everything else is on my request, including the Vitamin D test which showed I had a deficiency there.

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ncbi.nlm.nih.gov/pmc/articl...

"Hashimoto’s thyroiditis (HT) is the most frequent autoimmune disease, and it has been reported to be associated with gastric disorders in 10–40% of patients while about 40% of patients with autoimmune gastritis also present HT. Some intriguing similarities have been described about the pathogenic mechanism of these two disorders, involving a complex interaction among genetic, embryological, immunologic, and environmental factors. CAG is characterized by a partial or total disappearance of parietal cells implying the impairment of both hydrochloric acid and intrinsic factor production. The clinical outcome of this gastric damage is the occurrence of a hypochlorhydric-dependent iron-deficiency anemia, followed by pernicious anemia concomitant with the progression to a severe gastric atrophy. Malabsorption of levothyroxine may occur as well.

We have briefly summarized in this minireview the most recent achievements on this peculiar association of diseases that, in the last years, have been increasingly diagnosed."

"(3). The natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22).

These alterations interfere with absorption of essential nutrients leading, at first to iron-deficiency anemia, followed by PA" !

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Thanks, it all looks confusing at the moment but I'll look into it. I had my TSH levels checked when I asked and on 26 July it was 2.79mu/L [0.3-5.6] then on 9 Oct, just over a week after self-injecting daily, it was 0.88mu/L which she said was in range so they wouldn't do the other thyroid test I asked for but she said she could book an appointment with the thyroid doctor.

I went to this rickety old shed which looked like some remnants of wartime and this guy cupped my neck with his hands and said I was fine.

I wanted to be sure so I got a thyroid test from medichecks and on 30 November my results, which I checked with the thyroid group here, seemed to be ok:

THYROID STIMULATING HORMONE 1.43 mIU/L 0.27 - 4.20

FREE THYROXINE 16.7 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 103.0 nmol/L 59.00 - 154.00

FREE T3 5.1 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES 11.1 IU/mL 0.00 - 34.00

From the fact I lost a lot of weight when I gave up gluten in 2004 (went from 18stone to 12.5) and I've lost 1.5stone since giving it up again two/three months ago I think that's been the issue both mentally and physically. I didn't realise it back then as I thought it was the cycling, swimming and gym that lost the weight and didn't realise it was giving up the gluten that actually gave me the energy and mindset to do all that exercise!

I'm hoping as I lose more I'll start absorbing B12 better, but maybe not. I'll be glad to be a lot lighter though, hate being knackered & fat :(

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Well your antibodies are negative for hashimotos disease. But going gluten free is known to reduce them! Professor Toft, ex president of the British thyroid association and royal college of physicians in Scotland said people are not generally well until their tsh is 1 or under and their t3 & t4 at the top of the range or just over.

Join the thyroid forum on health unlocked for more information on that. I have had hashimotos for over 20 years and my b12 deficiency is due to that causing low or absent stomach acid. That means deficiencies in other vitamins too!

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