Questions & Advice for a newbie please! - Pernicious Anaemi...

Pernicious Anaemia Society

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Questions & Advice for a newbie please!

Spiralizer profile image
4 Replies

Hi all, I've been investigating possible causes of long-term fatigue. My symptoms & PA risk factors are listed below.

I'm currently waiting on results for the Intrinsic factor antibodies test (bloods taken over 2 weeks ago through GP).

On advice of a nutritionist I've been taking an oral B complex, recently with a megadose of B12 (1000ug) and have been sleeping better, but have had more digestive issues than usual...

Questions:

- Has anyone else experienced digestive issues with oral B12? (mostly just wind!) If so, can anyone suggest remedies?

- How long does NHS Intrinsic factor antibodies test usually take to come back?

- If I am positive, what should I ask my GP for? Would knowing my homocysteine level be useful?

- If I’m negative would it be worth me paying for B12 shots anyway to see if I have I see improvements?

- Would there be any down sides to B12 shots?

- Has anybody experienced Hypoglycemia with B12 deficiency? (I get very low blood sugar during my periods, which really knocks the stuffing out of me every month. Nobody has as yet explained the cause).

Blood tests:

- My Mean Cell Volume was at the high end of range 97.3 fL [80.0-99.0] (05/11/2021)

- Mean cell haemoglobin level 32.3 pg [27.0 - 33.5]

- Serum vitamin B12 level 358.0 ng/L [211.0 - 911.0] but I have been supplementing for years and I understand this can be misleading?

Symptoms include:

- Insomnia

- Neuropathy down one leg

- Fatigue

- Dizziness

- Brain Fog

- Occasional chest pain

- Non diabetic Hypoglycemia

Risk factors:

- Family history of pernicious anaemia:

My dad got diagnosed at about 30 (but sadly was untreated) and had heart failure in his early 50s...

- Family history of B12 deficiency:

My mum was treated with b12 injections

- Hashimoto's (High TbAb)

- Digestive issues:

- Low stomach acid & Pancreatic insufficiency

- Family history of rheumatoid arthritis

- Genetic tests have shown a strong need for B12

Any comments or advice very welcome! Thanks very much in advance!

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4 Replies
Nackapan profile image
Nackapan

Was your fokate tested ? Usually done with b12.Iron/ ferritin.

Vit D

Thyroid

If you have a positive IFAB trst yoh have PA and will need b12 injections fof life.

6 over 2 weeks loading dose

2- 3 monthly thereafter.

Many need s higher frequency.

Depends on your symptoms.

MMA test can diagnosd functional b12 deficiency.

I'll but a 'normsl' b12serum level

If folate low b12 shoujd be treated first.

Itd s matter of ruling out alot of the time .

Get a referral to a gastroenterologistaz seems to ve worst symptoms.

Rule out SIBO.

PAS hax lots of information.

Look ag Sleepybunny posts flummoxed links .

I hope you get results soon

.

Spiralizer profile image
Spiralizer in reply to Nackapan

Thanks for responding so quickly!

Serum folate level 16.51 ug/L [> 4.12]; This is a good level I think?

Serum ferritin level 26.0 ug/L [10.0 - 291.0]; On the low side?

Vit D hasn't been tested this year but I supplement and was at a good level last year.

Thyroid panel has so far been in range except for High TgAb (usually between 300 - 500) 375.3 kIU/L a few weeks ago

TSH 3.1 mIU/L (Range: 0.27 - 4.2) this has been slowly creeping up. . .

Free T3 5.1 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 16.9 pmol/L (Range: 12 - 22)

I investigated sibo a couple of years ago when I was getting Loads of food reactions. Generally my digestion has been much better since treatment, but I'll look into it again - thanks for the suggestion 👍

Thanks again.

Sleepybunny profile image
Sleepybunny

Hi,

Apologies for a quick reply but have to go out.

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

PAS can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

You do not need a confirmed PA diagnosis to join PAS.

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....

Testing for PA

pernicious-anaemia-society....

I've also read that a pepsinogen test may be useful.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

Some UK B12 documents

NHS article about B12 deficiency and Folate deficiency

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages)

Local B12 deficiency guidelines

I suggest you find out what's in the local B12 deficiency guidelines for your ICB (Integrated care Board) or Health Board. Try an online search or submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

CCGs (Clinical Commissioning Groups) were replaced by ICBs in England in July 2022.

Read blog post below if you want to know why I suggest doing this.

b12deficiency.info/gloucest...

Two useful b12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK BNF treatment info is out of date in above book.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Health professionals sometimes have wrong ideas about PA and B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I'm not medically trained.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

Hi again,

I thought you might be interested in these links

Petitition

There is currently a petition to get injectable B12 available over the counter in UK.

change.org/p/dr-june-raine-...

Tracey Witty of B12 Deficiency Info has been campaigning on this issue for 8 years.

b12deficiency.info/eight-lo...

Have you managed to find your local B12 deficiency guidelines yet?

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