Been to my Gp. Quite confusing. Said about not absorbing b12 tablets. She thought my b12 deficiency dietary at start?? I eat meat regularly and have diary eggs and do not have to omit anything. So why do i get no benefit from tablets ?? I asked about doing sc b12 injections at home and having a IM one at the surgery say once a month and if the sc work aim for 2 monthly IM. She looked it up and said sc b12 is absorbed more slowly. Has to be a deep sc. She disnt want me to si at home incase I'm tempted to inject daily!! (Happy to prescribe diazepam sertraline amitriptyline ect )
She will let me trial sc done by the nurse .To have IM or sc. I think it's a start .still 2 weekly and to take tablets to get to 3 weekly! I've said they dont seem to do anything.
! Also to try Duloxatine. So I can get on with my life!! Not having it yet until I've read about it . Has anyone tried this drug?? No explanation for needing iron. Did say ive been so ill. Shes not seen this before. I said she could get more info from PAS for health professionals. She thanked me for information. She did comment on my b12 being very high . Above 1500(injection day before) Despite writing on the blood form folate only. B12 not needed as in injections it was done. I replied to Go "but it dosent mean anything does it?? Since taking fewer supplements mu folate is now at last just in range. At the top. 20ng/ml Annoyingly
Vit D not done as just 3 month gap. Gp said it should have. Even on iron ferritin 39 ug/L.
Very hard to get over to any doctor I'm trying very hard to 'get on with life's also scary 'episodes' of pain weakness and balance issues and days of different sorts of headaches.
Any information or views appreciated.
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Nackapan
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My ferritin is 39 . I take ferrous fumerate 210mg every other day and spartone on the other day.
I'm waiting to see a neuro Opthalomogist. I wrote to the Go with a report do r by a ophthalmologist I did yo see and made uk printed glasses. Si my suggestion. Go did di referral early Jan. It's at Queens in Romford. So hioe that is useful.
I agree Go out of her depth. She at least did NHS referral. Also 'letting me' try subcutaneous b12 I jections at the surgery. I keep getting discharged back to her care. As you know all very difficult.
Sorry about typos!! Tinted glasses were made up by Opthalmologist to help with light sensitivity and reading . (Usually for people with dyslexia ect.can help people with this or migraines. My actual eyes are healthy. Must be signals from eyes to brain. I read about occipital neuralgia ??
My view is the same as before - self inject B12 every other day for the foreseeable future - many months if not years. It’s the only thing that allows many of us to ‘get on with life’. I admire your patience with the GP but their understanding & advice is clearly lacking & appears to be to the detriment of your health.
Sorry, can't remember : have your eyes been checked by neurologist, Nackapan ?
You said "brain to eye", could it be that you have optic nerve damage ?
My optician once showed me what back of the eyes look like if there is damage caused by B12 deficiency, put it on my record that I am B12 deficient and always checks now to ensure no damage there. Luckily none.
The other thing: ferritin.
I was told by my GP that anything over 60 ug/L should eliminate symptoms. The Oral Medicine consultant that I've been seeing for my angular cheilitis (sore, split, bleeding corners of mouth)* said he would prefer to see it at 80 ug/L. I tried doubling up - taking an additional 14mg iron on top of usual 14mg in multivits. Three months later, it had gone down from 61 to 59 ! He said not to worry, must be my natural level.
Your level needs more work though, I would say.
Good that your GP acknowledges how ill you have clearly been, but needs more awareness of the extent of B12 deficiency damage and accompanying deficiencies to check for and address. Closer monitoring. More investigation. She picked up on the vitamin D.
It did take me a very long time initially to get my ferritin level from mid-40s up to 60s after ferrous fumarate from GP for 3 months, then down again to mid 30s. All over the shop from 2016-18, and only now seeming to stabilise.
My GP stopped checking B12 level in 2016 as she is well aware it will be over measurable amount at 2000 + ng/L. Waste of her/my time - you can't fatten a calf by weighing it .
Any referrals to consultants in the offing ? If GP is struggling to help you, she could refer you/take advice and guidance herself. We know they are busy, but you have to prioritise those with ongoing, severe and complex conditions surely. You are working hard on making improvements yourself, but need professional support.
Take good care
*PS: Tip for those who do have angular cheilitis, stop using lipsalve in lipstick form (harbours bacteria) and try nipple cream ! Don't recontaminate - squeeze a bit out on finger and no need to go back for more as it's very thick. Seems to be effective so far, although collects in corners and makes you look a bit rabid. Gets you space on the bus though!
Thank you. Yrs ferritin was 61 17m ago. Besn taking iron for a year now lowest was 29. I wants it above 50. I'm not shaking od breathless when I 40s at least. So odd needing iron for the first time I my life. Yes have a referral for a neuro opthalomogist. Havs had eyes checked by 3 specialists who say optic nerve okay. This hospital want original images of 2 brain mri scans which ice now recieved on a CD to take. That was a very efficient NHS
service. Eyes have not been checked by a neurologist. Ivr seen 3 and they having touched me!
Ivd been low on vit d for a few years . Go seems to dk what I ask bug apart from prescribing drugs diest know what to do. She admits this. Shd did say tk havd s hearing test then possible ent referral. What other investigations do you think I should ask for?
Seem okay on about 2 a week now, but not on I a week. Still keeping records, because as you know, this can be a very slow process - in improvements and in deterioration.
I was told I had B12 deficiency, then functional B12 deficiency, and folate, ferritin and vitamin D low - have osteoporosis of the spine so get the D on prescription. All since 2016. Now finally seeing healthy blood test results - was very difficult to stabilise for a long time. Until 2016, I always thought of myself as a very healthy person.
Yes, it is difficult to get GPs or consultants to see/address the whole picture sometimes, because they seem to have been taught very little about the true effects of B12 deficiency, the symptoms discussed here all the time and common knowledge to us.
It always surprises me how little they will actually attribute to B12 deficiency, when surely they must hear the same stories over and over. Is it only medical research that would alter their beliefs -or would hundreds and hundreds of people saying exactly the same thing become something more than just anecdotal ?
I wonder why do they think so many of us end up self injecting ? It's no picnic.
As forasking for investigations, this is a difficult one.
I have been to various consultants that have told me:
That B12 is carcinogenic
That B12 is toxic
That B12 is highly addictive
That self-injecting B12 gives you a feeling of euphoria
….. and of course it is then difficult to trust these people, because either they are deliberately trying to deter us by lying or they are completely deluded. Either way, it is a complete waste of time refuting these ridiculous allegations during the consultation, which you will no doubt have waited months for, and an unwelcome distraction from what you are there to discuss. It also is disappointing to realise that you are dealing with someone whose opinion is already so biased.
So, just in case anyone reading this starts worrying:
- B12 is an anti-toxin: it is used in massive amounts in cases of severe poisoning
- B12 is occasionally prescribed by the NHS at a frequency of 2 injections a week for those with proven functional B12 deficiency problems (at cell level, for example)
- There remains no proof that B12 has any adverse effect -and there would be by now
- Sadly, no accompanying euphoria either !
I have found that presenting with visible symptoms gets you further.
For instance, I once met an ENT consultant who looked at me, looked at photos and told me that it was obvious that I had B12 deficiency and that I was doing exactly the right thing by self-injecting frequently but that I would need to continue for a long time- it was a long slow process - and not to lose heart. No blood tests, no scans, nothing: he just knew through experience.
I have had many things ruled out and inconclusive results, for Coeliac disease, SIBO, etc but no answers (or none that stuck !) I have refused antidepressants about three times - but that was very early on and I don't think anyone now believes I am depressed. Having a clear brain MRI scan and knowing early on that you don't have bowel cancer is a relief.
I have tried to treat myself as if I had functional B12 deficiency as this was the finding of my GP and confirmed by the bloods lab on MMA test result - for which the only advice I can find is to inject frequently [ Turner and Talbot 2009 ]
I believe our answers may well be found by the current PAS research. Might have to wait awhile ! Has your GP spoken to Martyn Hooper- a far more reliable source of knowledge regarding B12 than most of the consultants I have met.
This latest GP at least admits she doesn't know- but she is more in a position professionally to investigate on your behalf than you are. After all, she knows that you have been very ill- and there has been no effective treatment yet so that remains true and remains her responsibility.
Have you had small nerves tested by biopsy - or just large nerves by electric testing ?
[Warning: it is apparently very painful.] I met someone recently who had this when nothing showed up on electric testing - and small nerve neuropathy was found. She also has shakes, which is why I thought of this. I haven't had this myself.
By the way, I met this woman at a local PAS meeting. Have you got one near you that you can get to ? Really good to have support from people who understand what it feels like to be you. Take care, Nackapan
Thanks. I told the Gp on Friday she can get advice free from PAS . She appeared receptive. So who knows.
She is open to me trying sc. But then changed her mind about havi g then at home. Sge thought 8d be tempted to I ject more than 2 weekly.
Why I'm not sure as the amount of drugs ive turned down ...
She says I'm not improving as unwilling to take tablets.
I've said I trialled amitriptyline. HRT. I've even had one diazepam (well 1/2) when desperate.it I locked me out for much needed sleep when head/skull muscles was in a spasm. Sbe says to have them as often as needed. No mention of how addictive they are.
So to have had 1mg since last June I think I'm in control.
I've turned down sertraline twice and now duloxetine. If I truly thought they would be the answer I would take them. Also propranolol.
I'm just hoping the neuro opthalomogist will have an idea what I'm left with at present
I've finally got NHS pysio. Ti work on my neck and general muscle tone as now reconditioned. Tension g with pain and after losing nearly a stone put it back on without being g able to do enough exercise. I paid for pysio but was discharged until headaches settled!!
I will find out about PAS meetings. Not sure how to join.
Cant use the landline yet.
The shaking has mainly stopped I think was low ferritin. My last bloods were the most stable to date.
Since Oct. 18
Wi ask for ENT after I've had the suggested hearing test. Tinnitus and ears poppin and fullness behind their and ears. She looked but appeared okay.
Anyway hope tour regime will continue to bring improvements .
Yrs more research. Hast been dine as no bug drug company ti profit out of a drug??
I've had electric test, but not the small nerve biopsy (that's the very painful one).
The electric nerve testing doesn't hurt. It's a way of checking and measuring that large nerves are able to transfer electric currents down arms and legs to hands and feet at different strengths and from different positions. Mine were all fine.
However, it will not tell you anything about nerve damage to small nerves. For that I believe only a biopsy will give up information.
Have you joined the Pernicious Anaemia Society ? It's not expensive and there's a lot of help available there. Also you can find out about local meetings on their website.
Maybe because I'm a teacher, but I really like the poster on the Pernicious Anaemia Society website: the Teachers and Lecturers Information Sheet to advise teaching staff about what to expect from a B12 deficient student. It's simply written and easy to read, contains a useful list of symptoms, is all on one page and has a PAS telephone number at the bottom. Perhaps give a copy to your GP, if its relevant to you ?
Might remind her to make that call .
Far, far better she talk to them than a haematologist who believes that you can get addicted to B12 !
I did take a leaflet and a poster ti put up in the surgery. It was on a lonk from sleepy bunny . I will look at the one toh suggested and print it off.
I will have to join PAS to get it. I cant use a landline at present but will get someone to ring for me.
I was was a Nursery Nurse in the NHS for 36 years so also interested in education of all sorts.
I'm wondering now why after seeing 3 neurologists they haven't done that testing I had all my reflexes tested perhaps the one that did those didnt seem further testing necessary. I wi check.
It's the nerves in my brain most affected. So hope neuro opthalomogist will help.
Look at the latest posts today on here and you will find a link to some research from the Mayo Clinic called "The Many Faces of Cobalamin (vitamin B12) Deficiency" - where the PAS research is already being mentioned.
It might give you a bit of a lift.
I would stick with this GP- she has shown she cares (enough to want to learn more ?) and this is a start. If you wait for a GP in your practice who already has a good understanding of B12 deficiency, you may have to wait for one who has it themselves - and I really wouldn't wish that on anyone !
Yes that's why I've stuck with her.she is allowing me to try sc at the surgery to see if they work for me. Aksi 2 weekly still.
The last neurologist I saw has b12 deficiency !! He said he certainly knew when he needed a injection.
He thought I had a delay in treatment and no easy fix?? . He also said some need more injections to stay well.
He however could not explain my symptoms...light sensitivity head pain ect. He discharged me without telling me to my face.wrote it in letter to Gp. Also suggested to Gp to put me on propranolol again for anxiety anx mah help head pain.
This was a private one i paid for. So even with b12 deficiency/PA he dismissed me. Said to continue with b12 injections thank goodness. He said he specialised in headaches!! Almost because he didnt havd those symptoms they dont exist.
The NHS neurologist also discharged me(he thought b12 toxic and could overdose. Nog pug in letter thank goodness) but on amitriptyline 10mg taking me to to 150!!! Ineeded . I couldnt tolerate 10mg. Or 5mg. So took myself off it with full approval of Gp. She saw me drugged up on it.
I haven't taken propranolol .
The pysio I paid to see discharged me saying to wait until my headaches settled. I went for headaches thinking if my neck could release if would help. That quite upset me as he saw people for headaches.
Seen an NHS pysio once. So fingers crossed hr keeps me on for a bit.
Not only do my symptoms scare me at times but I think they scare others it seems.
So it was only something I read about occipital neuralgia that lead me to a neuro opthalomogist. Go just went along with it and did the referral. I do wish she would think of a referral rather than another drug to try.
Im not on anything apart from b12 and painkillers if needed.
So you are so right in needing a lift.
Like you on previous posts it's hard just to keep on going. Seemingly doing the research and work for ourselves.
Yes I've read some of that research from the Mayo clinic. Looks sensible and promising.
It was from MoKayD - it's quite long, but worth the read.
It might help you too, or your GP. A more rounded picture than I have yet seen in research. And good to see professionals already showing interest in current PAS research and initial findings.
Do you know what, Nackapan ? Sometimes I wish these consultants would put in written reports the utter rubbish they say to our faces - then GPs might trust their own judgement more, and their's a lot less.
Keep on keeping on - all we can do for now.
Have found 2 a week okay. Still deteriorate if attempting 1 a week. So won't.
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