New here and confused: Hi, I've just... - Pernicious Anaemi...

Pernicious Anaemia Society

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New here and confused

Boudica1
Boudica1

Hi, I've just had blood test back and have a B12/folate deficiency so have been give folic acid 5mg tablets and cyanocobalamin 50mcg tablets. This past 6mths have had countless bloods done as a skin biopsy has shown I have Urticarial Vasculitis. The vasculitis rash has been constant for 2yrs along with a whole raft of pains in the abdomen, kidney with blood in pee and a list of symptoms far to long to go into. Dermatologist first treat the rash as hives/urticaria and gave fexofenadine 160mg a day and increased it to 380mg still no better, so on to the biopsy and the vasculitis result. then came blood test galore which showed I was c-anca positive and have 2 markers on some DNA thing. Stopped taking the fexofenadine as it was not an allergy as they first thought and refused to take Dapsone as I don't have a bacterial infection either. The only other medication I take is for asthma and COPD. So I know the b12/folate deficiency is not related to any medications used to treat vasculitis as yet I'm not on any so it's merrily doing it's own thing at this point in time.

My question is does anyone here have the same problem's?

12 Replies
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clivealive
clivealiveForum Support

Hi Boudica1

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Do you "see yourself" among any of the above people or do you have any of the symptoms listed?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Boudica1
Boudica1 in reply to clivealive

Hi clivealive, thanks for your reply. I know its not diet as I eat almost anything except seafood. Age? Could be as I've just crept into that bracket. I mainly wondered if it could be because of the Vasculitis as its an autoimmune disease but the b12/folate has only just shown up in blood tests and I've had a lot of them since February thanks to the skin biopsy.

Some of the symptoms are also the same for Vasculitis so thats why the confusion. But the short term memory problems I had to down to being a batty old bird. So maybe I'm not after all.

Boudica1
Boudica1 in reply to clivealive

Oh I forgot to mention I do have many of the things on your list but as I said some can also be linked to vasculitis as well. So maybe I'm stuck on the fence, neither one side or the other.

Gambit62
Gambit62Administrator

symptoms of B12 deficiency overlap with a number of other conditions which does make getting a proper diagnosis very difficult.

You mention being on 50mcg B12 - this is the treatment for a dietary deficiency - unless you are a vegan/virtually vegan with little meat/fish/dairy/egg in your diet it is unlikely that your deficiency is dietary.

What is your diet like in terms of sources of folate - fresh green vegetables are probably the main source. If your folate deficiency isn't due to lack in your diet that implies an absorption problem and also means that your B12 deficiency is likely to come from an absorption problem.

You should be on B12 shots to correct the deficiency.

Source of the above is BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which you can access here but your GP can also access through the BNF

healthunlocked.com/pasoc

Boudica1
Boudica1 in reply to Gambit62

Hi Gambit 62, it's definately not dietary as I'm a meat eater and love veg of all sorts and eat a varied diet.

I have had a lot of abdominal problems this past 2yrs and have had x-rays, scans and camera's up and down, all have shown nothing not even stones from the kidneys or gallbladder. Some of the bloods have shown over large red cells and c-anca+ and something on the DNA, the last batch of tests that the GP ordered showed the b12/folate deficiency

I'm under Dermatology and Rheumatology at the moment relating to the Vasculitis but as yet not on any treatment, some of which can cause b12/folate problems. So I think I need to find out why it's shown up now as I would hate to make the problem worse with treatment for one condition having a knock-on with another

I'm seeing the rheumatology nurse this morning so will see what their bloods have flagged up. The 2 sets of bloods were taken about 2weeks apart so something may show up on that, some of the tests rheumatology do take around 2wks to get a result through.

I'm just fed up and confused with all the symptoms from abdominal pains, pains in feet with strange spasm's, spasm's with no pain, walking at times and can't feel my feet and sometimes something they call drop foot (flops down and you can't bring it up to a normal position).

The tiredness drives me nuts and a few times I've felt as if I'm wearing a lead suit and can barely walk. Its embarrassing when it suddenly hits you like a brick wall and a little old lady with a Zimma frame fly's past as if she's at Silverstone race track.

Anyway thanks for your responce and sorry for waffling on.

Hi,

I have not been diagnosed with vascultis.

I've left a lot of potentially useful links about B12 deficiency on PuttyPaws recent thread. Suggest you have a look or put Sleepybunny in search box as I've written very detailed responses in past few months. Sorry but too tired to repost all the links.

I've assumed you're in UK.

What does GP think is causing your low B12/low folate?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

More B12 info in pinned posts on this forum.

B12 Deficiency Symptoms

Some vascular symptoms are mentioned on these lists.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

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/

B12d.org

b12d.org/

"have a B12/folate deficiency so have been give folic acid 5mg tablets and cyanocobalamin 50mcg tablets."

I have read that it is very important to treat any co-existing B12 deficiency adequately if having folate treatment. See Management section in link below for more info.

patient.info/doctor/folate-...

Have you been tested for Coeliac disease?

NICE guidelines on Coeliac disease recommends that patients with unexplained B12, folate, iron deficiencies are tested.

Coeliac Disease

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 but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood tests

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

"showed I was c-anca positive"

I have read in past that this may indicate some type of auto -immune condition. Has GP excluded possibility of other auto-immune conditions? Having one auto-immune condition may increase chances of another one developing.

Pernicious Anaemia is an auto-immune condition. Has GP tested you for PA?

Best piece of advice I ever had was to always get copie sof all my blood test results. Some forum members get complete copies of medical records.

Access to Medical Records (England)

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

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

I am not medically trained.

Good luck with finding answers.

Boudica1
Boudica1 in reply to Sleepybunny

Hi Sleepybunny, thanks for your responce. Not been tested for PA yet, I think GP may be leaving that for the hospital consultants I'm under as all the tests the GPs have sent me for are on their records as well.

As yet I can access GP records but don't seem to be able to view hospital records, only those they have sent to GP. I see the rheumatology nurse today and the bloods the consultant ordered also show b12/folate deficiency and that the folate was very low for some strange reason. Don't know why as I eat loads of green veg along with meat including liver which is high in iron.

I rarely drink anything except tea and water, so it can't be that either. I have an appointment with the rheumatologist in about 6 weeks and I know he's been talking with the consultant at the CTD clinic, so hopefully will get closer to the why's and where-fore's.

I have found that since taking the b12 and folic acid tablets this last week or so that I not quite so tired but still fall asleep in the day for an hour or so. Thats a big improvement on 10 hours at night and another 3or4 in the day. I was beginning to think I was going to sleep my life away.

Any way thanks again for you advice and info. Take care.

Sleepybunny
Sleepybunny in reply to Boudica1

Hi again,

"don't seem to be able to view hospital records"

Seems to be more difficult to get hold of hospital records, may involve form filling and visit to hospital records office. Might be worth looking at NHS hospital website for your area of UK and searching for contact number for hospital records office who hopefully could talk you through procedure.

CAB may also be able to help you.

Cherylclaire
CherylclaireForum Support

"Some of the bloods have shown over-large red cells" : I don't know what symptoms or pointers there are for vasculitis, but couldn't this be macrocytic anaemia ? Large floppy red cells that would indicate Pernicious Anaemia.

Hospitals don't seem very forthcoming with specific results and ranges, particularly haematology, who will drain pints of blood off for testing then give you a couple of "normals" as feedback !

Your GP could chase this up on your behalf, as in that case, 50mcg is undertreatment.

Hi, had a biopsy from one of the spots on my back (they look like hives but last for months instead of less than 24hrs). That showed it was urticarial vasculitis hence all the blood tests, at least it kept the vampire department well fed.

Reguarding the very large immature red blood cells, that could be a result of the autoimmune system attacking what ever is involved with the production of blood. So production goes into over-drive and the cells can't mature properly, or something like that.

All to technical for me to get my head around, the rheumatology nurse thinks I should have injections because of it, so will wait to see what the consultant decides. The GP has given me enough tablets to get me through to the next hospital appointment. So its down to them and what they think is causing the problem and how it needs to be treated. GP can't do to much because I'm already seeing consultants.

What I do know is this b12/folate problem has only just shown up in the last 2 tests this month. The only thing different is I'm no longer taking the Fexofenadine tablets since April and will ask the consultant if they were helping to keep things on an even keel or were they masking the problem as bloods done in Feb., did not show a b12/folate deficiency as far as I know. Dermatology specialist would not tell me the blood results when I asked and just said they're fine. Had to find out else-where about the c-anca result.

I just hope the next time I go to the rheumatology dept., I feel better than the last time. I'd been vomiting all morning and feeling some-what dizzy and almost threw up in the room with him. I was not a happy bunny and a bit grumpy to say the least but he's seeing me again poor chap, so I didn't put him off.

Hi

Cherylclaire
CherylclaireForum Support

Sounds like you are having a very hard time of it lately. Sooner the better with proper treatment for an identifiable cause- just make sure they don't miss anything by dividing it up into specialisms.

The drop foot and spasms doesn't sound good at all but really sounds like something that shouldn't be difficult to identify- have you seen a neurologist yet ? I know that's usually a very long waiting list.

Of course, concern about symptoms is all relative -and vomiting all morning could well be what is bothering you most right now.

If you are well enough, it might help to log all of your symptoms on a chart. It may also hopefully allow you to notice gradual improvements later on. If not able to record incidences on a daily basis, just write a list of symptoms and make copies for consultants, starting with the most severe/ dramatic (to hold their attention!) and don't miss out the ones you think are unrelated or a bit trivial- or things you have learnt to live with but that you realise deep down aren't "normal". It's often a long wait to see a consultant, and difficult to get your information across in the short space of time allocated, especially if having a bad day. Sit on your hands, so they can't give you your symptoms list back and have to put it down on their desk ! Who knows ? They might just read it later.

Wishing you the best of luck.

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