B12 deficiency and wrinkled fingertips

[Deronda77]

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.

[fbirder]

It sounds like my fingers.

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.

Now my Raynaud's is coming back again.

[Deronda77 in reply to fbirder]

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?

[fbirder in reply to Deronda77]

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.

[Sleepybunny]

Hi,

I hope you find answers.

The links I have included have a lot of information in them and sometimes there may be some details that could be upsetting.

Have you considered joining PAS?

They can pass on useful info and offer support.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

B12d.org have some online meetings during pandemic.

b12d.org/event

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Lots of useful info on this website.

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.

healthunlocked.com/pasoc/po...

Impact of Pandemic

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)

b12deficiency.info/blog/202...

I wrote a detailed reply about impact of pandemic in another thread. See link below.

healthunlocked.com/pasoc/po.....

Challenging GPs

If you want to challenge decisions on treatment, I suggest putting queries about treatment into a brief as possible, polite letter to GP.

Try to include extracts from UK guidelines etc that support your arguments. Should be useful info in the links I included in this post.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about writing to GP if under treated for B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

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.

UK B12 treatment

BNF

bnf.nice.org.uk/drug/hydrox...

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.

pernicious-anaemia-society....

If you think you are not being treated correctly then I suggest seeking support and info from PAS etc.

"in her words the lowest level of b12 you can have which she thinks is the cause of the problems"

Do you mind me asking what your B12 level was?

I am not medically trained.

[Deronda77 in reply to Sleepybunny]

Thank-you for all that info. I will have a good read! My b12 before jabs started was 148. My ferritin before I started iron tabs was 7 and is now 15.

[Sleepybunny in reply to Deronda77]

Do you also have results for folate, full blood count (FBC) and Vitamin D?

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Vitamin D

nhs.uk/conditions/vitamins-...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been asked questions about your diet?

Do you eat plenty of B12 rich food such as meat, fish, eggs, dairy, foods fortified with B12?

If yes to B12 rich diet then any B12 deficiency is more likely to be due to an absorption issue in the gut.

Have you been tested for PA?

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Tested for Coeliac disease?

NICE guidelines Coeliac Disease (UK document)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection?

patient.info/digestive-heal...

Any exposure to Nitrous Oxide?

gov.uk/drug-safety-update/n...

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.

Other UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

"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

[Showgem]

Has a doctor seen your nails? Health problems often show up on our nails and some can be quite serious.

My nails are much healthier since my PA diagnosis and treatment.

[Deronda77 in reply to Showgem]

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.

[Deronda77]

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

[Deronda77]

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?

[Deronda77]

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.