Hi - I hope you don't mind me posting here as I don't currently have a PA diagnosis, but I'm so lost trying to understand my symptoms and b12 deficiency and I'm just looking for any insight.
I had from mid March a numb middle toe on one foot and a band like feeling and numbness on the ankle of the other foot. My toes were also frequently cold although I have always had poor circulation and cold feet. A few weeks after this started my fingertips went permanently wrinkly / pruny and pink on the pads and holding indentations too long. This was worse when its cold or I'm gripping and improves a bit when I'm really hot and with a glass of wine. The gp initially thought low ferritin and low vit D so have been on that about 6 weeks. They also get over cold when outside and the pads are sore and red looking. I also noticed my finger and toenails are weird colours. A mix of red bands at the top, really white patches in the middle and red patches. Theres also red mark's under the nails near the cuticle bit. I then got a weird non itchy set of brown patches under my arms which I was given steroid cream for.
Also in background to this I had chronic gastritis for a couple of years (several scopes / biopsies done), was thought to be going through early menopause (I'm 43) with a number of symptoms re my cycle, full body jerks, burning cystitis type problems, no libido but no hot flashes. Before starting the iron I hadn't had a period for 5 months and now they are normal again. I was also on hrt for 6 weeks 4 weeks before numb toe and have been slowly withdrawing from fluoxetine since early last year and I developed sciatica in oct last year that although better than it was has remained chronic.
Due to the lockdown the gp's were only treating me over the phone and as I have health anxiety I was getting very distressed about my fingertips. One gp said raynauds and prescribed me a blood pressure drug which I was too scared to take especially as I wasnt sure I had typical raynauds symptoms (no recovery or colour changes and only tips). I spoke to an understanding practice manager as I'd got so distressed and she agreed I needed to be seen in person. So I got to see a lovely gp who did a doppler thing on my feet and said pulses normal although noting my toes were cold, an ecg which was normal (I've also had palpitations) and ordered a load of blood tests. The blood tests all came back normal apart from iron and in her words the lowest level of b12 you can have which she thinks is the cause of the problems. I've just had my third loading dose this morning and still no changes. If anything I think my fingers have some slight improvement and then they get worse. I also feel tired all the time. I had read about the 6 loading doses only in the uk and then every 3 months and asked the nurse today if any chance of more b12 and got told no.
Has anyone else with low b12 had these types of fingertip problems?
Is there anything I've described that makes any sense from a b12 deficiency point of view?
Thank-you so much for anything you can advise.
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Deronda77
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I was being treated for high blood pressure, so I asked to doctor if I could be put on nifedipine as I'd read it was good for Raynaud's. The doc agreed and I spent the first winter for many years without painful, cold, fingers. And the prune-factor got a lot better.
But, last summer, I started getting giddy spells when I paused exercise. When I measured my blood pressure it was very low and my heart rate was very high.
I was swapped to another drug, but the effects were much, much, worse.
I did a 24h BP monitor and it was normal, so I quit the drugs completely.
Hello! Do you get full colour changes with your raynauds? What age did yours start if you dont mind me asking and does the cold only strike the tops of your fingers? Is the pruning basically constant without medication?
I first noticed it around five years ago, not too long after my PA diagnosis, when I would have been 57. The cold starts at the tips and works down my fingers. The pruning was almost constant.
It's been about 9 months since i came off the medication and the symptoms are slowly creeping back. But nowhere near as bad as it used to be. I had to wear gloves through most of the year, whenever the temperature was below about 25° C. Now it's only below about 10° C. The pruning is still there all the time, but barely noticeable at the moment, probably because it's 24°C.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, and other B12 info which you might find helpful.
Lots of UK forum members are struggling to get adequate B12 treatment at moment due to impact of pandemic.
Some have had B12 injections stopped/delayed/frequency reduced or swapped for oral tablets so it is a hard time to argue for more frequent B12 injections.
Warning
Oral B12 treatment
1) There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.
Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)
Your local MP or representative of devolved administration in Scotland, Wales, NI should be interested in your story if you are struggling to get appropriate treatment.
If you have neurological symptoms then my understanding is that you should be on following pattern of treatment if in UK...
A B12 loading jab every other day for as long as symptoms continue to get better then a maintenance jab every 2 months. The every other day loading jabs can continue for weeks even months if symptoms are still improving.
"I had read about the 6 loading doses only in the uk and then every 3 months "
6 loading doses then an injection every 3 months is a pattern used for those without neurological symptoms. See BNF link.
Your GP may not be aware that BNF treatment guidance was changed about a year ago.
There are other possible causes of B12 deficiency eg some medicines/drugs can interfere with B12 levels, fish tapeworm infection, Crohn's disease plus others.
It is vital to get adequate treatment or there is a risk that symptoms could deteriorate.
If you have any neurological symptoms, you could ask to be referred to a neurologist and a haematologist.
"I had chronic gastritis for a couple of years (several scopes / biopsies done), "
What were you told was the cause of the gastritis?
May be more effective to ask for referrals in a polite letter to GP along with supportive evidence of need for referral eg symptoms, extracts from UK B12 documents.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Hi - I only saw the gp once after I started crying and I did mention it but dont think they paid much attention. They do seem to be improving slowly though with the b12 and the iron so fingers crossed.
Hello again. Just had the last loading injection today at gp's. There has definitely been improvement. My fingertips that were pinky red and sore have normal colour patches on them now. The pads are much more paddy and dont hold indentations very long at all and if I am inside wrinkles go completely and tips also not as cold outside, much quicker to warm just from walking back inside and dont wrinkle as bad. My toes seem to be warmer and my palpitations are almost gone.
I noticed when I have jabs I get burning sensations in my feet and pains in my toes for 2 days which I thought may be a good sign of nerves trying to heal?
As today was last jab I set up gp phone call to try and make my case for continuing regular jabs until symptoms plateau. I made notes and was all prepared and the gp called me 3 hours early when I was asleep so threw me all off balance! He kept saying I dont see any reason to go outside of standard treatment and just fobbed me off to speaking to original gp who is not back till nxt week 🙄 He did say hormone tests normal which is interesting as had so many problems for last 2 years and told early menopause and now all normal since starting iron tablets. He also said my folic acid was normal.
When I had jab nurse said improvements could be a coincidence and it sounds like raynauds cause her friend has it with constant wrinkly cold fingers even though I pointed out colour changes and temp triggers different. I dont mind if it is raynauds I'm not in denial it just seems odd my symptoms are so atypical and improving with jabs and I feel I need to exhaust vitamin options first before moving to other causes.
Have set up another app for when other gp back next week so will try again to get answers / nxt steps but was feeling rather depressed as local private hospital doesn't seem to do jabs either but then saw an under the tongue spray in Holland and Barretts containing 1200mg of b12 so maybe that would be a good substitute? Hope everyones well and thank-you for all your comments x
This is such a frustrating journey. I prepared more notes for my upcoming appointment on tuesday but this time emailed it as a letter to gp to the surgery. I included links to nice guidance etc but honestly am dreading phone app as everything I've read on this page re doctors and nurses comments is everything I've also been hearing from my own surgery. Feel like symptoms have plateaued and even regressed slightly even though taking daily tabs of 500 b12. I'm terrified of having to go the self injection route as such a hypochondriac will convince myself I give myself gangrene or something! Has anyone had a good result from a gp? Or obtained jabs from a private gp in the uk?
Totally bemused and unclear 🙁 I had app with gp who had read email and said we need to refer to a neurologist. I could just about afford private so she did a referral but placed emphasis on wanting to know consultants name so she could send a summary.
Neurologist called the nxt day for phone app. I described symptoms and he had a list of my tests. He said he thought b12 deficiency a reasonable conclusion but that he needed to see me in person nxt week to be really sure hes not missing anything and that b12 deficiency symptoms can be different for each person. He felt gp's b12 regime (6 previous loading jabs and then every 3 months) was adequate. When I raised nice guidelines re neurological damage he said that's only for serious numbness such as whole leg or paralysis and that mine was not that bad.
After call I had post which inc letter from gp to neurologist. It starts "Thank-you for seeing this 43 year old lady who attended the surgery with a history of ongoing anxiety" then goes on to get my symptoms wrong saying pins and needles (never once told her that) and intermittently cold feet (toes not feet and what about fingers!). Was quiet upset about it as felt it was undermining. Good part was she inc all blood tests from 20th May which are extensive and apart from iron, b12 and one point wrong on liver all normal.
Abnormal
Mean corpuscular volume - 100 but should be 76-96
Mean corpusc haemoglobin 32.1 but should be 27-32
Serum b12 148 normal considered 180-914
Serum ferritin 15 normal 20-275
Liver function test - serum alt level 9 normal is 10-31
Normal
Liver autoimmune ea4563
Anti nuclear factor
Mitochondrial absorption
Anti smooth muscle autoantibod
Parietal cell auto antibodies
Anti liver kidney micro ab levels
Thyroid peroxide abs
Haemoglobin estimation
Total white cell count
Platelet count
Red blood cell count
PCV
Neutrophils count
Lymphocyte count
Monocyte count
Eosinphil count
Erythrocyte sedimentation rate ea4563
Rheumatoid factor
Ca125
Hba1c
Serum folate
Serum progesterone
Serum prolactin
Serum LH level
Serum FSH level
Serum C reactive protein level
Serum TSH level
Non fasting lipid pr
Serum cholesterol
Hdl cholesterol
Non HDL-c
Bone profile
Serum calcium
Calcium adjusted level
Serum albumin
Serum inorganic phosphate
Serum alkaline phosphate
Liver function
Serum albumin
Serum total bilirubin
Serum alkaline phosphatase
Serum testosterone
Renal function
Serum sodium
Serum potassium
Serum creatine
Giomercular filtration rate
Last blood pressure 118/72
Vit D was 33 before I started pills in April and anti nuclear factor was negative
Have been taking b12 mouth spray sat-Tue until I had a horrible bout of acute gastritis (probably related to sneaky colas - I'm prone) and now scalp has come up in itchy spots (b12?). And last night had to do emergency run to vets which involved being outside or in cold car for nearly an hour in stupid clothes and got home to very wrinkled and bit numb right fingers and right big toe. Ever since jabs left side improved more than right side. So very fed up and cat admitted and worried sick about her ☹
I'll see what neurologist says nxt week when I wave fingers and toes at him but as heat wave expected I suspect he will not be impressed but I finally have acupuncture app for 6th July so praying he can perform the same magic he did on my chronic gastritis and ibs ( when I'm not sneaking cola).
I think b12 nerve damage has triggered raynauds type symptoms but dont think they will ever believe or allow me more regular jabs to see if it would help.
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