Hives after B12 injection: I've been... - Pernicious Anaemi...

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Hives after B12 injection

Impala
Impala

I've been having three-monthly B12 injections for almost three years now; a few days ago, for the first time, I had an outbreak of hives about an hour after my jab. I wonder if anyone has any suggestions about why this might have happened all of a sudden?

For context: I've never previously been prone to hives, but over the past two years, while I've been quite unwell due to hypothyroidism and chronic fatigue, I've had them develop four times after consuming, respectively, cod in tomato sauce, quorn in curry sauce, antibiotics, and a mince pie. I haven't had hives for several months, until this jab.

Oh, before I forget: the day following my jab, I ate from the same loaf, butter dish, milk carton and jam jar for breakfast without any reaction, so I think it was to do with the jab rather than food.

I'd be very grateful if anyone has any insights or experience with this.

25 Replies
oldestnewest

A common cause of hives is stress. Could that explain your, seemingly, random attacks!

Impala
Impala in reply to fbirder

Thank you! Do you know, I had no idea of that?! I will factor it in to my observations if I have any further outbreaks. I didn't *feel* stressed around the time of the jab, but it's possible my body was physically stressed as I'm still tired most of the time.

Hi! I am sorry - it is horrible, isn't it?

I had an attack of hives when my B12 levels were low. As I was doing daily injections I know it wasn't that and I couldn't find any other reason. The only thing I could think of was maybe my damaged nerves were getting better as I was finally getting treatment and therefore had a silly session when some new bits started to work.

As you say you have been given a label of CFS (what Dr's often call B12 deficiency), could it be your system is just broken due to the B12 deficiency and needs more than 3 monthly injections so your nerves can heal and not go into hives?

I'm sorry you had this too, on top of everything else. That's a very good question about B12 deficiency and possibly needing more frequent treatment. I've sort of concluded that B12 isn't at the root of my issues because I don't feel any different after having jabs / sublingual lozenges. You've made me look again at this reasoning that I've slipped into, and I think I'm going to go back to having daily sublingual lozenges and seeing if there is a difference now that other things in my body are improving a bit.

re the chronic fatigue: I just don't know whether my issues are due to hypothyroidism and/or B12 deficiency being undiagnosed for so long, meaning my body's attempts to compensate eventually caused systemic damage, or if it's something else, as I've never been right since I contracted a virus 11 years ago. I've been seeing an integrative doctor who follows Sarah Myhill's work, and his treatment regimen for my poorly functioning mitochondria has helped quite a lot. He's never been overly interested in the B12 diagnosis, though; perhaps I need to pick that up with him next time I see him, and to do something about it myself in the meantime!

Thank you for helping me take a step back and look again at everything.

All the things you have just said make sense to me.

It is not my place on here to make suggestions but if it were me I'd do as you are doing.

My CFS diagnosis was 20+ years ago, after 10+ years of B12d symptoms, also following a bad virus, in my teens and now I believe a lot of my problems are because of lots of years without proper treatment.

Good luck and feel free to ask more questions!

Thank you *so* much for the advice and encouragement! It's truly shocking how long it took for you to get a B12d diagnosis. I do hope things are improving for you.

Hi,

I'm assuming your 3 monthly injections are from NHS.

Is there any chance that the NHS used a different brand of hydroxycobalamin this time? I think different brands might have slightly different ingredients.

Did you have any neuro symptoms when first diagnosed/after diagnosis eg tingling, pins and needles, tinnitus, memory problems, balance issues, tremors plus others?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

UK recommended B12 treatment for B12 deficiency WITH neuro symptoms...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

UK recommended B12 treatment for B12 deficiency without neuro symptoms...

6 B12 loading jabs over 2 weeks followed by a jab every 3 months.

See following links for more info on UK B12 treatment.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

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 is up to date with UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

"and chronic fatigue"

It's not unusual for people on this forum to be diagnosed with ME/CFS at some point.

Misdiagnosis of B12 deficiency as ME/CFS

martynhooper.com/2018/02/10...

b12deficiency.info/blog/201...

b12deficiency.info/misdiagn...

I am not medically trained.

Impala
Impala in reply to Sleepybunny

Wow - thank you so much for all of this! I'm particularly interested in the misdiagnosis of B12 deficiency as CFS. I fought the CFS diagnosis tooth and nail (and still don't accept it, though I'm willing to concede that I have chronic fatigue) because I was in no doubt that the medics who tried to stick the label on me did so as a last resort - they as much as said so, and wanted to pack me off to have graded exercise therapy, which I believed would make me so much more ill at that point, along with CBT.

All of that said about CFS, mitochondrial testing, following Dr Myhill's research, showed real problems at that level. What I don't know - and I don't know if anyone *does* - is what is cause and what is effect. Maybe B12 deficiency causes the mitochondria to stop functioning efficiently, given the way everything is interconnected.

Yes, it's the NHS who give me my injections. I'll ask the surgery about the injection so I can find out if it was a different brand this time - thanks for the suggestion.

I did have neuro involvement when first diagnosed, to the point where, before anyone thought to test for B12, I was shuttled off as an urgent neurology referral, where they gave me a brain MRI. But compared to so many people on this forum, I seemed to get away really lightly with symptoms given that my B12 was at 158 (190-500) on diagnosis: tinnitus (which I still have), very dodgy balance, almost constant bad headaches, a bit of burning skin and occasional pins and needles. All the latter have gone since I started B12 and hypothyroidism treatment (unhelpfully both at the same time, so I still don't know what was due to which condition!). I had memory/cognitive clarity problems too, but they're ongoing and I've been putting them down to exhaustion.

I really do need to do some reading and thinking. Having read such helpful responses, I realise that I've slipped into a way of viewing my condition, and it's about time I re-examined my underlying assumptions now I'm feeling a bit stronger and have a bit more mental clarity. Thank you so much for all of this.

Sleepybunny
Sleepybunny in reply to Impala

Hi,

You describe symptoms at point of diagnosis that would be usually be considered as neurological eg poor balance. Tinnitus is a neuro symptom.

My understanding (I'm not medically trained) is that in UK, you should be on....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months. GP can find details of this neurological treatment regime in BNF (British National Formulary) Chapter 9 Section 1.2, a slim book they are likely to keep on their desk.

BNF concentrates on pernicious anaemia and other macrocytic anaemias so if you don't have a PA diagnosis , may be worth showing GP the BSH Cobalamin and Folate Guidelines which to my mind makes it clearer that neurological treatment regime applies to any cause of B12 deficiency with neuro symptoms.

NICE CKS link in my post above suggests that GPs should contact a haematologist, if a patient with B12 deficiency has neuro symptoms. Has your GP ever done this?

Have you ever seen a neurologist? It's important to exclude other possible causes of neuro symptoms.

It's vital to get right level of B12 treatment or further deterioration can occur.

Neurological Consequences

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Words of warning...

B12 deficiency is sadly not as well understood as it could be by some GPs and some specialist doctors. I suggest being well-prepared for any appts.

Do you have a PA diagnosis?

If no, were you ever tested for PA? In UK , this would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. See BSH guidelines.

If no to PA diagnosis, what does GP think is causing your B12 deficiency?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you ever been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version) recommends that anyone with unexplained B12, folate or iron deficiencies is tested for Coeliac disease.

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

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done in UK. Total IgA test shows which patients have IgA deficiency ( an immunoglobulin).

People with IgA deficiency cannot make the antibodies to gluten that the tTG IgA test checks for and they need to have different tests for Coeliac disease.

Coeliac Blood Tests

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

Thought it might be worth mentioning that sometimes people with Coeliac disease, can get a skin rash called Dermatitis Hepetiformis. I have read that occasionally this can look like hives.

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

For H Pylori infection?

patient.info/health/dyspeps...

For internal parasites eg fish tapeworm?

One sign of possible fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found on Full Blood Count results.

Is there a family history of PA or other auto-immune diseases? If yes, does GP know family history?

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

b12deficiency.info/what-to-...

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-...

UK B12 Blogs

May be stories on these blogs that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

"I fought the CFS diagnosis tooth and nail (and still don't accept it"

You are not alone, so did I.

Took me more than ten years to get doctors to agree that my symptoms were characteristic of B12 deficiency. I had many typical symptoms including multiple neuro symptoms. My difficulty was that most of my B12 results were well within range and IFA test negative.

Best piece of advice I got was to always get copies of all my blood tests

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

I am not medically trained.

Impala
Impala in reply to Sleepybunny

Oh my word, thank you *so* much for all of this really comprehensive and on-point advice. It's going to take me a while to work through these links and get my head around everything.

re the neuro symptoms: before my B12 was tested, I had a consultation with a neurologist who suggested I had late-onset (I was 50 at the time) chronic migraine, and ordered a brain MRI just to check; this showed "one or two foci of white matter hyperintensity that were entirely non-specific, and recognised to be more prevalent in those with migraine". From what Google told me, this happens to some extent with ageing, so I decided there was no need to worry further (rightly or wrongly).

My previous GP did, at my request, months after B12 diagnosis, test for the PA antibody, which came back negative, although according to the BCSH flowchart, my levels at diagnosis put me as having antibody-negative PA. Nobody's ever suggested a haemotologist, and I didn't think to ask for a referral. The doctor who gave me the diagnosis never suggested a reason for the B12 deficiency, and honestly, at the point of diagnosis I was so exhausted and ill that it didn't even occur to me to ask - I just grabbed onto the diagnosis (and the one I got at the same appointment of hypothyroidism) as a lifeline.

I do have low stomach acid, though; I don't know whether that might cause the low B12 or if it's autoimmune, given that I have autoimmune thyroiditis.

I was tested for Coeliac and my results were negative. I have a slight concern about the results because I've read that one should be eating the equivalent of four slices of bread per day for weeks before the test, and I haven't eaten that much gluten for *years* (I don't really do bread or cakes or pies or biscuits). But on the other hand, shortly after the test I went gluten-free for two years because so many people with hypothyroidism find it helps, and I didn't feel any different, so probably I don't have Coeliac. Never thought about a parasite, though. I have an old FBC test result filed away somewhere; I'll have to look at it again with fresh eyes.

My maternal aunt has RA, but that's the only autoimmune disease I'm aware of in my immediate family. Very good question,though - I've never been asked by any of the various GPs I've seen about family history.

Wow - sorry this reply is so epically long, but thank you again, so much, for all of this. I've absolutely taken on board about needing to be prepared; I can't say that any of the guidance in the guidelines you link to has been followed by any GP I've seen. In fact the one who saw me to pass on the blood test results that diagnosed B12d and hypothyroidism rolled her eyes when she saw the long list of blood test results from my previous appointment and said scathingly about the locum always ordering far too many tests. At that point I was too polite (and ill) to point out that it was only because of his thoroughness that my illness had been found.

I'm so sorry to hear of your long battle. And with B12 levels and IFA looking okay, I have no idea how you managed to get anywhere; I can only imagine you went equipped and kept fighting. It's an inspiration to me to do the same. :)

Sleepybunny
Sleepybunny in reply to Impala

Hi again,

"doctor who gave me the diagnosis never suggested a reason for the B12 deficiency"

I'm sorry to hear this. I would have thought it was part of their job to find out. These days after my experiences with medics, which included being shouted at, I am very cynical.

The cause can affect the treatment given.

A few causes can be temporary eg temporary diet changes, pregnancy. Some causes can be treated, eg H pylori infection, fish tapeworm infection , so B12 treatment does not necessarily need to be lifelong in all cases. Coeliac disease ( can lead to B12 deficiency due to gut damage) can be managed with lifelong gluten free diet and may mean that once GF diet has been established, B12 treatment may not need to be lifelong. Treatment for PA (Pernicious Anaemia) is lifelong.

PAS website has a leaflet "Treatment is for life " in library section. Access to PAS members only.

pernicious-anaemia-society.... See Page 1 of articles.

In UK, dietary B12 deficiency is sometimes treated with low strength cyanocobalamin tablets. Even dietary deficiency is should be treated with injections if neuro symptoms present. Sometimes B12 loading injections are given in cases of dietary deficiency in order to get B12 levels up quickly.

Was diet as a possible cause ruled out?

Having a vegan or vegetarian diet can be a risk factor for developing B12 deficiency. B12 rich foods include meat, fish, shellfish, eggs, dairy, foods fortified with B12.

"was tested for Coeliac and my results were negative"

Do you have copies of the Coeliac test results? Did you have both tests, I mentioned in my post above..

1) tTG IgA

2) Total IgA

I learnt from experience not to trust what I was told about test results unless I has copies in my hand.

There is a useful summary of mainly UK B12 documents available in third pinned post on this forum. I suggest reading it.

GPs and specialists in UK and elsewhere, sometimes have misconceptions about B12 deficiency.

Misconceptions about a B12 deficiency (English language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

There are other interesting English language articles from same website.

stichtingb12tekort.nl/weten...

"I do have low stomach acid, though;"

Link about low stomach acid

drmyhill.co.uk/wiki/hypochl...

"never been asked by any of the various GPs I've seen about family history"

Bit shocked by this. Asking about family history is usually done when a patient joins a UK GP practice. To my mind, it is basic medical detective work to find out what illnesses run in a family.

"aunt has RA"

Having an auto-immune disease in the family can increase the chances of developing an auto-immune disease. PA is an auto-immune disease. I hope GP has excluded possibility of auto-immune diseases in your case.

"I didn't think to ask for a referral"

It is your right to ask for a referral but GP does not have to agree. I preferred to put requests for a referral in a brief, polite letter to GPs along with evidence eg symptoms, family history and extracts from UK documents that supported my request.

"rolled her eyes when she saw the long list of blood test results from my previous appointment and said scathingly about the locum always ordering far too many tests. ....too polite (and ill) to point out that it was only because of his thoroughness that my illness had been found. "

Some people find it helpful to have a supportive person with them at appointments, even better if they have read up about B12 and can intervene on your behalf. My impression is that GPs are sometimes kinder when a witness is present.

"re the neuro symptoms: before my B12 was tested, I had a consultation with a neurologist "

An "on the ball" neurologist should have considered B12 deficiency as a possibility. Migraine can be associated with B12 deficiency. I saw several neurologists and B12 deficiency was only on the radar of one of them. The other neuros were too busy diagnosing me with psychosomatic symptoms and depression.

Proprioception

Did neurologist check your proprioception sense? This is awareness of your body in space. It can be affected by B12 deficiency. I feel that most of the neuros I saw did not check this as fully as they could have done.

Vital that any tests for proprioception are carried out by doctors at medical premises due to risk of falls from loss of balance.

Two tests that can help to check proprioception sense are

1) Romberg test

2) Walking heel to toe with eyes closed.

If you did not have any neuro tests with eyes closed then it's possible proprioception was not tested.

"foci of white matter hyperintensity"

I have come across articles that link white matter lesions in brain with b12 deficiency.

"can't say that any of the guidance in the guidelines you link to has been followed by any GP I've seen"

I don't think your experience is uncommon, sadly. It might be due to the fact that your GP could be following out of date local area NHS guidelines on b12 deficiency. Some of these local guidelines have not been updated since the BSH Cobalamin guidelines were published in 2014.

Might be worth tracking down the guidelines your GP surgery is using by

1) Asking practice manager for a copy.

2) An internet search for B12 deficiency guidelines for your area of UK

3) Search on local area NHS website. Check under haematology guidelines.

4) FOI (Freedom on Information) request to local area NHS website.

5) Local MP may be able to help.

parliament.uk/mps-lords-and...

MP should also be interested in cases of people who are not getting NHS treatment they are entitled to.

Help for GPs

1) PAS website has section for health professionals. They can join PAS for free.

2) PAS leaflet/article "An Update for Medical Professionals: Diagnosis and Treatment ", access to PAS members only.

3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

"I can only imagine you went equipped and kept fighting. It's an inspiration to me to do the same"

I would warn you that some GPs find it difficult to cope with assertive patients and GP/patient relationship can suffer. I was always polite but pressure was put on me to leave one practice.

I managed to keep fighting because I had learnt a really hard life lesson and that was that in my case the only person who was going to help me was me.

Faced with a slow decline into dementia type symptoms and increased neuro problems that made me concerned about developing SACD (see Consequences section in previous post) I resorted to self treatment for a while as a last resort as GPs at time refused further B12 treatment.

"treatment regimen for my poorly functioning mitochondria has helped quite a lot"

Interested in this as I suspect mitochondrial dysfunction is a possibility for me. Perhaps if you have spare time , you could PM me.

I hope you find a way to greater improvements.

Impala
Impala in reply to Sleepybunny

Thank you again, Sleepybunny, for such thorough and helpful answers. I wanted to let you know I will answer you (and will definitely PM you re the mitochondrial stuff and anything else I might be able to share that's helpful), but having done a few things today I've run out of steam, so will do so tomorrow when hopefully my brain is functioning rather better.

Impala
Impala in reply to Sleepybunny

Hi Sleepybunny, thanks again for *all* of this. I've checked, and I didn't have the Total IgA test re Coeliac. Somehow I'm not surprised. But for all that Coeliac was in the frame given some of my symptoms (unexplained weight loss, unhappy digestive system), the fact I noticed no benefit from going GF nor any rebound when I started eating gluten again after two years makes me think it (thankfully) isn't a problem for me.

There are so many valuable things in your posts that I still haven't worked through and fully understood yet, but I'm jumping to what I *have* done in the meantime, which is the proprioception tests you mentioned, neither of which were done by the neurologist when I saw her.

It tursn out I'm catastrophically bad at them with my eyes closed, particularly the walking heel to toe one. This scared me enough to phone the doctor this morning and I've just come back from my apointment (the practice runs a telephone triage system, which means most of the time you don't get to see a doctor, but on the positive side, if they think you should see one, you can see one on the same day). The doctor did various nerve tests on mainly feet and hands (vibrating, pricking, scratching) and tested if i could resist her pushing down and up etc on my hands. All clear.

Great to hear there is no nerve damage, but I hit a brick wall in terms of the symptoms I *do* have and B12. No, you didn't have neurological issues at the time of diagnosis, I was told. So why was I referred to the neurology department, I asked. Well, they determined there weren't any neurological issues, so that's why you were put on the non-neurological involvement treatment. So the diagnosis of late-onset chronic migraine isn't a neurological symptom? No. And anyway, it went away when you started B12 treatment.

I almost gave up at that point, but I did ask why, if my issues weren't neurological, I only had severe balance problems with my eyes closed. The answer, which didn't answer the question I'd asked: everyone gets balance problems as they get older, and you are a bit young to have them (I'm 52), but you're slowly getting better generally as you keep having the three-monthly B12 injections* so just continue with those and do some balance classes.

*I haven't told the GP surgery I'm seeing a private GP, whose treatment is, in my mind, unmistakably responsible for my slow improvement. I will tell them at some point, but can't be bothered to put up with all the judgemental crap I'll get.

I'm not surprised, especially with your warnings about the medical profession generally not understanding B12d, but I am quite cross. I'm going to channel that anger into dosing myself up with B12; I think I'm going to start with sublinguals as I have a few bottles already in the house, but I may also try nasal drops as some people find them so good. The difficulty is I can' be *sure* my problem is B12, with so many other things going on with me, but it's stupid to risk it, especially when the proprioception tests were so damning.

Sorry this is a bit of a rant, and, once again, very long! But I can't thank you enough for alerting me to the fact my B12 deficiency isn't dealt with just because my headaches are gone and my serum levels are high.

I'll PM you re the mitochondrial stuff in a few minutes.

Sleepybunny
Sleepybunny in reply to Impala

Hi,

"proprioception tests you mentioned, neither of which were done by the neurologist .... tursn out I'm catastrophically bad at them with my eyes closed"

To anyone else reading this, I would stress that tests for proprioception should be carried out by a doctor at medical premises due to risk of loss of balance.

Did the GP witness you walking heel to toe with eyes closed? Average GP may not be able to spot proprioception problems...even some neurologists may forget to check for it.

The neuro tests you said the GP did, as far as I know would not test proprioception sense. Perhaps you need to see a neurologist who really understands proprioception.

Proprioception problems are associated with B12 deficiency.

Article below mentions B12 and propriocpetion.

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

"Great to hear there is no nerve damage"

As GP has not carried out a full range of neuro examinations, I am not sure they can be confident there is no nerve damage.

Do you have any tingling, pins and needles, burning sensations? These can be signs of neuropathy.

nhs.uk/conditions/periphera...

Have you ever had a nerve conduction test?

Ever had a Romberg test with a neurologist?

"dosing myself up with B12"

Some people on forum choose to self inject B12.

I still think it might be worth joining and talking to PAS . Costs £20 for a year.

pernicious-anaemia-society....

Have you considered writing a letter to GP?

This has to be filed with medical notes in UK. The down side is that writing letters may irritate some GPs (I gave up worrying about that although I was always polite.

This link is about writing letters when person thinks they are not getting correct treatment for B12 deficiency WITH neuro symptoms.

b12deficiency.info/b12-writ...

Have you ever given your GP a list of all your neuro symptoms?

See Symptoms lists in one of my posts above.

Can you take someone with you to next appt?

Good luck.

Impala
Impala in reply to Sleepybunny

"To anyone else reading this, I would stress that tests for proprioception should be carried out by a doctor at medical premises due to risk of loss of balance."

Er, yes - I'd definitely second this, having tried it. I think 'catrastrophically bad' was an overstatement as I didn't fall over, quite, but it wasn't good.

I mentioned the heel-to-toe walking when she sat down after the (sort of) Romberg test, expecting her to do that one next, and just got the response "Yes, that is difficult." THAT was the point I realised I wasn't going to get anywhere, though I did keep trying.

Thank you - I did wonder about the nerve damage conclusion given how unaware she was of some other things. I don't think she got proprioception at ALL. I did the Romberg test with her - she asked me to put my shoes *on* for it, which again makes me think this isn't her area of expertise - and I was like a high building in a gale; she had to grab me a few times, but still said there wasn't a problem that a balance class couldn't sort out for me.

I'm sure it won't be a shock to you to learn that no, I haven't had any of the tests that you ask about conducted by a neurologist.

I'm considering writing a letter, with supporting evidence, though if I do so, I need to get it right and not rush into it. I'm also thinking about who I can ask to come with me if I have another appointment.

Thing is, I don't have the tingling / burning / pins and needles so many people have. What I do have sometimes are fingers that feel like grilled sausages that have burst out of their skins because the innards are too big for the skin. And yes, I did tell her, but when I passed all the tests on my hands, I think she saw it as irrelevant - there wans't time in the appointment to bring it up again when I was pursuing the cause of other symptoms.

I've thought, ever since diagnosis, that when I was well enough to earn an income again, the first thing I would do would be to join the PAS (and Thyroid UK) to support the work they do. I'm now thinking that perhaps I've got the cart before the horse in this respect. :) The reason I'm not sure about writing the letter is that I'm sort of doubting my own conclusions about the proprioception, while at the same time I'm also not doubting them. I think joining the PAS would help me to educate myself more so that, when I need to push, I can do so without sabotaging myself with self-doubt.

Thanks again for all your advice and support. I'm sorry I've been so verbose in my responses!

Sleepybunny
Sleepybunny in reply to Impala

Hi,

Another link about peripheral neuropathy. This one is aimed at doctors.

patient.info/health/periphe...

fbirder has posted about neuropathy on this forum. If you are interested , may be worth looking up some of his posts.

Have you looked at PAS article on SACD, sub acute combined degeneration of the spinal cord. You would need to be a PAS member.

pernicious-anaemia-society.... See Page 2 of articles.

There are other posts about Proprioception on this forum. Just put "proprioception" in search box on forum.

Back to Coeliac disease.

So you only had tTG IGA test but not Total IgA . It appears GP did not follow NICE guidelines on Coeliac disease (link in one of my posts above). Did GP tell you why Total IgA test was not done? It is possible to get Total IgA test privately in UK.

You are now eating gluten.

Coeliac symptoms can vary from patient to patient. Some patients present purely with neurological symptoms (see link 2 below)

1) Coeliac Symptoms

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

2) Coeliac disease can present purely with neurological symptoms

coeliac.org.uk/campaigns-an...

Some people develop gluten ataxia which involves problems with balance.

Do you have or have you ever had gut symptoms?

If yes, have you ever been referred to a gastro-enterologist? An endoscopy may show gut damage caused by PA, Coeliac, H Pylori etc.

Might be worth talking to Coeliac UK. They have a Helpline 0333 332 2033.

Impala
Impala in reply to Sleepybunny

Thank you, yet again - until I read your post I always assumed Coeliac always presented with quite severe GI symptoms (I had loose bowels and unexplained weight loss, but both seem to have been largely rectified by B12 and/or thyroid treatment). It shows how a little knowledge is a very dangerous thing!

In terms of gut symptoms - I bloat if I don't take HCL betaine with pepsin; I'm very, very rarely hungry; I occasionally have loose bowels (but I'm taking large amounts of magnesium and Vitamin C daily); most puzzling of all to me is the fact I'm not really putting on weight. I'm not eating a huge amount due to lack of hunger / energy for eating, but I'm certainly not dieting, and I've spent so much of my life having to be very careful in what I eat to avoid putting on weight that this a real change.

I was given no explanation re the Coeliac test, though I supposed to be fair to the GP I was seeing at the time, I didn't ask. The only reason I was tested at all was because I was fortunate enough to see a locum who was extremely thorough - and who also said on hearing my symptoms that he's noticed people with red hair / pale skin, as I have, often have Coeliac. I did try to see him again, but alas, he was only pulled into the practice on rare occasions (possibly because he earned the practice owner's disapproval for all the tests he ran!).

Once more, *thank you*. Sorry for the delay in replying; my energy levels are still very variable, so I have days when I don't get to the PC.

fbirder
fbirder in reply to Sleepybunny

I’ve checked every batch of B12 I’ve had from the NHS and all, bar one, had the same ingredients - water, hydroxocobalamin, salt and vinegar (sodium chloride and acetic acid). The ingredients may list other substances (like sodium acetate and hydrochloric acid - which produce ions of hydrogen, sodium, chloride and acetate: exactly the same ions as produced by salt and vinegar).

The exception is Cobalin-H which uses sodium dihydrogen orthophosphate as part of its pH regulation. Although it’s a fairly common chemical it has been known to provoke allergic reactions, including hives.

Impala
Impala in reply to fbirder

Oh, interesting - thank you! I'll definitely ask the surgery about this.

My understanding is that hives is an allergic reaction - a sensitivity to certain foods or chemicals and treatment with B12 could have triggered It to get worse before it eventually improves?

As well as ensuring B12 is optimal, so is building a healthy gut with fermented foods and bone broth.

My eldest child had hives, eczema and asthma. I realise now I was a bit too clean and was more relaxed with the second, who had no allergies, although eczema and Hashimoto's thyroiditis runs in the family 😳 All the professors are saying it's much healthier for our biome and immune system to be exposed to a bit of dirt and, ideally, we should be digging allotments and keeping animals.

Impala
Impala in reply to Polaris

That's really interesting, and your reply, with others, makes me realise I've assumed my B12 deficiency is successfully managed / the damage done recovered from, and that my ongoing symptoms are due to other causes. Which is a *huge* revelation, so thank you! :)

When I'm well, I enjoy gardening, I will always fuss any dog who stands still long enough for me to do so, and I spent almost my whole childhood at the local riding stables, so I don't think an excess of cleanliness is/was an issue for me (although one of my sisters is prone to eczema and asthma, interestingly). But I probably should look again at my diet now I have enough strength and energy to do something about it, because everything does seem to go back to the gut, as you say.

Thank you again for your help. I hope you and your eldest have found a way to manage their conditions; it can't have been easy.

Polaris
Polaris in reply to Impala

I borrow my son's lovely dog, who always greets me with a thorough ear licking 🤗

Interesting to hear about you and your sister. I'm sure genes play a part too and have been pondering on this. I've just realised that those in our family with allergies appear to have no obvious problems with digestion but those of us with digestion problems have no allergies (my father, brother, son and me) mmm.....wondering if those with allergies have a more sensitive alert system warning their bodies not to eat certain foods.....

Being gluten free, and taking daily spoonfuls of sauerkraut has certainly worked wonders for me after years of painful gastritis, IBS, etc. I also now try not to have anything processed or high in sugar.

Five women in our family have had various autoimmune problems over the years - variously misdiagnosed as CFS/ME/fibromyalgia. It made me wonder whether the fact that we have Irish/Austrian genes, with ancestors surviving extreme poverty (B12 deprived - a primordial molecule we cannot do without), has affected our DNA/gene pool.

Very best wishes for a good recovery very soon Impala.

PS I found these books by Dr. Datis Kharrazian - a Harvard neurologist' - the most helpful in understanding the gut/brain connections:

'Why Do I Still Have Thyroid Symptoms?'

'Why Isn't My Brain Working?'

Impala
Impala in reply to Polaris

Thank you again, Polaris, for all of your help (not least the lovely visual of the dog licking your ear in excitement every time you meet!!)

"wondering if those with allergies have a more sensitive alert system warning their bodies not to eat certain foods....."

That's a fascinating idea, and seems to me to make a lot of sense.

How interesting to think about genetics in all of this. I'm sure we must be affected to some extent by nutritional deprivation of our ancestors; I wonder how far back that goes and how long it takes to be sorted out.

Thanks again - I have a lot of reading (and some thinking) to do in the near future!

Foggyme
FoggymeAdministrator

Hi Impala. Just a thought...have you thought of taking an anti-histamine tablet when the hives are troublesome. Helps some people.

Best to take advice from a pharmacist if buying over the counter...or talk to your GP if regular treatment is required or if the hives become more of an issuue.

Impala
Impala in reply to Foggyme

Thank you, yes - after the first couple of outbreaks, I took to having some antihistamines in the house just in case. And yes, I'll definitely ask for medical advice if the hives become more frequent or troublesome.

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