Thank you for the really helpful info, links and advice in replies to my previous post a couple of weeks back. I had already read quite a bit about B12 before/after having it found, but now have read and understand lots more (and don't understand some, and some scares me!), and so feel more equipped for my GP appt later today. Although do feel stressed & nervous about it.... silly really but it is so much to cope with already without feeling like you have to make a case.
Precis of my exp to date (in Gloucestershire):
- Unexplained 'very ill' from Sept 2017. Given 2 x lots of antibiotics for supposed kidney infection at outset. I got worse & worse. Blood tests x 2 (in Dec '17 B12 was 190 = 'normal' and not looked at), ultrasounds, Omeprazole (I only took for c.3wks as made me worse), referral to gynae (in case of endometriosis), I took myself to GUM to rule out, and even sent for a CT scan. Eventually went back to different GP with some of my symptoms better/some worse, & they repeated blood tests (none of my blood tests to date have been fasting).
- Blood results of note, Aug 2018: Serum B12 =133ng/L; Serum Folate = 9.4ug/L (this is low too?); Serum Ferritin = 17ug/L (this is pretty low?); IFA = negative; TSH = 1.6miu/L (normal but low-ish end). Heamoglobin concentration =127 g/L; Mean cell volume =87.8 fL; platelet count = 213 10*9L; white blood count =6. Liver function serum albumin level = 38 g/L (low end of 35-50 range) - more on that later.
- 5 x loading doses given over 2 wks Sept '18. Some improvement started from no. 3 - ie. brain felt plugged back in, pins & needles improved, pain and aches improved, mental outlook improved, digestive system improved
- Gradual decline again c. 2 weeks after doses finished. Saw doctor in Nov who said they could not do bloods again yet, had to be 3 months will do then and see if B12 dropped again, otherwise wait til 6 months and re-test then too. Said probably post-viral making me feel low (I had had a cold)....?!
- Acceleration of symptoms coming back from mid-Dec - fatigue, migraines/ headaches and sickness, "IBS" type symptoms, musculo-skeletal pain, brain not working, pins & needles, immobility, and more....
-Blood test done mid-Jan (not a fasting test). I'm kind of disregarding it for purposes of my appt today, but B12 = 293, serum folate = 9.4. Ferritin not done.
Finally seeing GP. Going back to the one I saw throughout 'being very ill with no explanation' because she knew all the symptoms I had been having and is generally receptive.
So! I have a 'plan of attack' as it were - 1: ask for treatment to be 're-started' straight away as per the NICE guidelines for B12d with neuro as it should have been (I am taking the printed out guideline). 2: ask for referral to a neurologist (poss heamatologist? poss gastroenterologist?) as per NICE. 3: ask for other tests to confirm PA and/or other issues.
I have a long list of ALL the symptoms I had prior to low B12 level being found in Aug '18, note of what happened - ie. 5 x loading only in Sept '18 & some improvements happening for c 2 weeks. I have a list of symptoms gradually (now rapidly, esp neuro) coming back since Oct '18 - some worse.
I have a note of other factors, eg. one sibling with v low B12 (happens to be at same practice & has had poor treatment regime too) & others with symptoms but 'ok' (eg. 219 and 263), having symptoms of other associated things, other 'risk factors', and a note of other tests I want to ask for or about, ie. homocysteine - I have been having arm/armpit & chest pains all this week, MTHFR, serum gastrin, parietal cells, thyroid TS4/TS3/antibodies, B6, Vit D, full liver functions tests, check which coeliac test was done (it was negative), plus ferritin to be done again & serum folate to be done fasting....
I'm taking lots of prints outs as well as the NICE treatment guideline, but will only produce them if necessary!
Does that all sound reasonable? Is there anything else I should take/show/say?!
A friend who works for the NHS suggested escalate and/or complain to the Quality Care Commission if they don't/won't follow guidance. Has this ever worked?!
A couple of Questions:
- I am very intolerant to alcohol. This has got worse over years. I do not drink at all now as it became that just one tiny glass of something could make me very ill for 24-48 hours afterwards - extremely sick and with the very worst migraine and feeling basically like death.
Could this be due to low B12, or associated things? Is my low albumin in liver function anything to do with this, B12, something associated? Read the methylation article which makes a lot of sense and I can see the link here.
- I started having short-lived sharp pains & discomfort that could certainly look like heart attack symptoms last Thursday. These have continued, spread and have contributed to disturbed sleep. I was not too concerned initially as I put it down to tight/misaligned shoulder & neck & central back, which I generally have anyway, it being exacerbated significantly by sitting a lot doing nothing & with laptop on lap. That was until I read B12 stuff this weekend to prep for appt..... And the elevated homocysteine levels & link to heart probs..... I will tell the Doc about this pain, but if poss late in the appt as a kind-of secondary point as I want to focus on getting the fundamental B12 issue sorted!
Guess I am looking for a bit of reassurance not to panic til later on...?
- Is it essential to get the GP to formally diagnose PA rather than leave it loose as having found a B12 deficiency? Does PA diagnosis inherently equal better long-term treatment?
- Is it likely that my 9yr old daughter will have inherited PA/B12 d?
Many thanks to all, wish me luck! I may be changing to a Doc in a different County tomorrow - to start the fight all over again!?
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eclilley
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Mean to ask too, I have had bad 'hormonal migraines' for c. 20 years. For last 3-ish years have used Sumatriptan, a fair amount, as it worked quite well. Is Sumatriptan a 'baddy' for B12/folate? I know there is a link to endocrine & B12, but can it be a direct link to hormonally caused migraine? Before having loading jabs, I had hardly had any migraines for about 8-10 months (just had the low-level daily headache most of the time). Once I had loading jabs I had the monthly migraine back from Sept - Dec. Now it's switched back again. ??
I'm not aware of any link between triptans and B12 absorption - they tend to work as vaso-constrictors so not a mechanism that I would expect to interfere with B12.
I had hormonal migraines for many years - mine seemed to happy at each change in hormone levels - still some fluctuations going on.
The pill is sometimes used to help with hormonal migraines - tried but didn't work in my case. This can interfere with B12 absorption.
Thank you. No, I hadn't found any info re triptans either, but just curious in case there were any links/risk factors. Yep, mine have always been change in hormones too - used to be like clockwork at start of period, both when on the pill and when not. For last couple of years seems to have swapped and been at the end instead. When pregnant & breastfeeding didnt really get them, it was great! I did try being back on pill for short time about 2 yrs ago but hated it! Seems like having low B12 also suppressed or levelled my hormonal fluctuations a bit. They have been massively debilitating over the years and I always said I would give anything to get rid of my migraines, but I now know I would rather have my worst one every month than live like i have this last 18 months 😔
The genetics of PA aren't particularly well understood - there does seem to be a genetic component as it runs i families - but exactly what genes are involved, and what other factors are needed to activate them isn't understood - so like type 2 diabetes in that respect.
The BCSH guidelines refer to IFAB negative PA because its so difficult to get a formal diagnosis given the limitations of the IFA test.
It can be useful to have a formal diagnosis in terms of monitoring for gastric complications (like NETs) but the treatment for an absorption problem problem is the same whatever the cause (unless the cause is one of the rare treatable ones, eg tapeworms and possibly h pylori infection). To be honest its easier to rule out other causes.
Thank you for your reply. Didn't go that well..... she wasn't all that reassuring and I was a bit less coherent than i had intended, and got a bit upset as am feeling a bit desperate, having not been able to work for 18 months etc.
I said I needed to have more injections as per the advice.
She tried saying the BNF guideline treatment is 5 loading then wait, and 3 months apart if found to have dropped. I showed her the guideline and pointed out the with neuro treatment, and said that apparently Glos. follows old guidance.
She said that anyway though my B12 is normal now so maybe we should consider other causes of all the symptoms I have back, she wouldnt expect things like pins & needles to come back too much..... 😯 I said it seemed very common from my research, and that anyway the guidance says B12 doesnt need checking at that point if the advised treatment is being followed.
I said about lots of people ending up self-injecting, to which she seemed genuinely surprised and horrified.
She's taking the NICE guideline and loads of other printouts that I took, (I had lists of symptoms from PAS/NHS & others, lists of MY symptoms, info on risk factors, what to look for in testing & why, etc.).
She said she'll look through it all and investigate a bit and come back to me with a plan. I am feeling a bit broken down by it. Maybe tomorrow will feel better!
She also said that ferritin of 17 (done in August) was fine as it was over 10, she wouldn't be concerned by that at all. I thought it was a bit low. But am I right in thinking that my ferritin is likely to have gone lower by now, having had the 5 x B12 jabs in Sept?? (It wasn't included in the Jan blood test & I forgot to ask or challenge about what it might be at now).
I am feeling so weak and wobbly, as well the fatigue, tiredness, cognitive function affected, internal pains and aches, and a lot of joint stiffness and pain, musculo-skeletal pain, slow and/or reduced movement.
ferritin is a measure of iron deficiency so not related to your B12 levels. However, if you have a B12 absorption problem then that can also affect iron absorption - eg through lower acidity levels. Ferritin is only one measure of iron and does need to be looked at in conjunction with other measures - such as full blood count and haemoglobin levels so if those were okay being low in range won't necessarily be an issue.
Would be good to check for other things - eg hypothyoridism as there is a 40% chance of developing hashimotos if you have PA
On the positive side she did take the information you provided and was willing to look at it.
You have had such a hard time eclilley, I can't add much but there are knowledgeable people on this site that are better equipped. I am a nurse, so feel very proud of you being assertive enough to ask re sign guidelines. What I would say, I bet each and everyone of us can relate to a larger or lesser degree of your short and longer term symptoms. For Now I am 'well', whatever 'well' is, so hang in there as there is light at the end of the tunnel....and let us know re progress. Xx
Thank you for replying. I didnt feel very assertive, but I tried. I was in a bit of a state and told her it's ruining my life and I need to get sorted. I think she thinks I'm neurotic!
It is so frustrating that so many GP's seem to be so reluctant to follow a clear treatment guideline.
Thankyou for your lengthy posts just what I need. I too are in exactly the same position as you..it's good but not so good that someone would actually know how you feel..shame the dr.doesnt see it that way..I'm at g.p. Tomorrow and am going armed with the guidelines. I feel so deasperate like yourself it also is ruining my life. Don't want to do anything or go anywhere,I just can't,I am still working which is an uphill struggle every day. Fingers crossed!
Good luck at the Dr. I haven't heard anything back as yet, but somehow I am not overly optimistic. I don't want to go down the self-inject route til I have exhausted the 'official' route. But I am desperate and can't wait much longer, so the idea of changing GP practice etc fills me with despair.
I am not working 'properly'. I was/am self-employed and doing gardening work, so just had to completely stop that. I have a tiny micro-craft business making candles, so was able to do that again Oct-Dec (aided by having had the jabs in Sept so wasn't as bad for 3 months).
Was at a crossroads already and looking at career choices, but now that is kind of on hold (was supposed to have an interview tomorrow for something PT, but am withdrawing as I feel it pointless committing/ to can't do anything til I get the proper treatment plan agreed
Sorry for long posts - I am not sure if that was tongue-in-cheek or not?!
I have experienced they same with Gloucestershire GP
I was begrudgingly given 5 loading doses over 2 weeks as a ‘therapeutic trial’ however dispite this trial clearly making a significant difference I was refused anything more
That was 3 years ago since when I have very successfully SI
( a few blips )
My GP knows I’m doing this and at a recent appointment I told her I am going to write formally requesting I am treated in line with NICE guideance as it clearly wasn’t a placebo effect after 3 years and it felt uncomfortable treating myself
She said it wouldn’t make any difference as they were going to stop all B12 injections in preference for tablet form as research shows it’s just as effective
I told her I couldn’t believe the ignorance and felt very sad patient expirence seemed to be ignored in preference of flawed research
It’s a very worrying time when you are the who expiriences the severity of illness and know the cure is a simple ,no risk ,cheap injection
I just pray I retain my faculties enough to SI for the rest of my life and I can continue to buy B12 post Brexit!
There seems to be the need for some pressure in Gloucestershire. Maybe the PAS could help us with specific lobbying? I joined last week, haven't contacted them yet. Have you asked for help from PAS?
I wonder if in fact the looming Brexit black hole has prompted this suggestion of 'we are going to use tablets instead of injections' - I saw someone mention they had been told this on another post the other day. Most of the supply obvs comes from mainland EU, and is more time-sensitive than tablets, so it's maybe part of their planning/contingency for post March 29...?
My Dr certainly did not seem to 'get it' at all, and questioned some of the very clearly and well-documentd symptoms, wasn't aware of one or two of the risk factors/causes.
I can see myself ending up SI but want to 'exhaust' the official path first....it is ludicrous when, as you say, there is a treatment that clearly works well for so many, and when you think about the paths that others are led down or end up suffering with when they are not treated correctly, and the massive costs to the NHS that are incurred & that could be potentially lessened.
Hi eclilley, unfortunately I'm in a very similar position to you. Also in Gloucestershire and also had a really disappointing GP appointment this week.
I went in armed with NICE guidelines but came out feeling pretty hopeless. My B12 has fallen from 180 to 122 over the past year despite decent dietary intake and over-the-counter supplements (as advised by GP).
I too was given 5 loading injections (in November, when levels fell to 122) and told to come back in 6 months to have my B12 re-checked.
I went back this week because I'm just fed up of feeling so ill, but he basically said that there's nothing wrong with me and that NICE guidelines are just guidelines and no one has to follow them. He agreed to some repeat blood tests (ferritin, FBC and thyroid) which I will get done next week.
He mentioned possibly referring me to a rheumatologist, but said it would be a weak referral. I also have neurological symptoms and gastric symptoms.
As above, it does seem that maybe there's a need for some pressure in Gloucestershire. Maybe the PAS could help us with specific lobbying? I joined last week, haven't contacted them yet. Have you asked for any help from PAS?
I just feel so angry! Having had so long being so worried and not knowing what was wrong with me, to finally work it out and get the low B12 found. I felt so relieved and happy, and assumed that they knew what to do. I investigated because I thought the 'come back in 6 months' was a bit out of line with what I had heard. My brother (treated at same practice), has been even more depressed following his loading doses 'wearing off' than he was before them, but just pushed to 6 months too.
I am a single mum and I have a lot of other stresses and challenges and I feel very alone and let down.
The GP I saw said that current thinking is that B12 deficiency is over-diagnosed and that if low B12 was causing my symptoms I would have felt better after the 5 loading doses. I didn't have the confidence at the time to explain that it takes time to repair the damage done by low B12, or that that's why I should have stayed on 3 x per week injections until symptoms improve and level out.
I really don't want to start self-treating. I feel they will never listen to me again if I do. I'm just hoping that these blood tests bring up something that leads me to feeling better...
It sounds as if they would have just rejected whatever you explained/suggested. Maybe join PAS? I am going to contact them in next few days I think, to try and feel supported and to grumble!
I know, I feel the same about SI - kind of that you take yourself out of the 'official loop' then and they will just not even entertain you on that subject. BUT can absolutely understand why so many do and certainly can't say I wouldn't in the end...
In a way, I am 'lucky' in that I live on the rural borders of Glos/Warks/Oxfds. So if needed I could try changing into a different County and start the process again. But, not sure if they are taking patients, would prefer to keep my daughter at existing practice as they've been good with her and know her probs, but equally would prefer us to be at same doc's. Plus, where do I find the energy and capability to do it?!?! I can't even open my post and deal with it much of the time!!
My GP did seem willing to take away all the things i had and read them. But I am not holding my breath.....
I really hope you are able to tell us who the MP is
I will most definitely be keen to raise awareness in Gloucestershire
I do really think you are all right if you can hang out and get the right treatment from your GP it’s certainly the best way to go about things
I couldn’t, I knew after the third loading dose it was making a difference (it was like magic!) and I couldn’t image stopping the progress I was making and terrified of getting worse again so after a failed feeble attempt to get a regular injections from my GP I took control myself and haven’t looked back
The benefits of SI is that you are in control and you know your body so you can get the best from the right frequency of injection for you
The down side is you are definitely ‘off piste ‘ and on your own Except PAS will support you
I had incredible support from Dr Chandy
The very best way I think is to get injections from your GP what ever the frequency and SI in between You then have the best of both worlds
Good luck and I will write to the supportive MP if we can have his name
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