Possible Pernicious Anemia

[ae0200]

Hello all, I have been feeling ill for months now. As I write, it is August 2022, I was diagnosed with low iron stores, ferritin of 13 ug/l in March this year. I have been on tablets for the past 6 months or so. Although recently I have been experiencing, headaches, vomiting, weakness, dizzyness to name a few. I have been in contact with a Dr. K of the iron clinic Cambridge. He suggests that I may have pernicious anemia, there are some people in my family tree who have had it before, all passed away now.

I have an appointment with Dr K for an iron infusion and for him to show me how to self inject B12, but this is 4 weeks away. I honestly feel like I am living every day as it comes. Any advice?

Thank you

[Polaris]

So glad you’ve found a helpful and knowledgeable doctor, ae0200, who will help with self injection 😊

Many of us here buy B12 for self injection from reliable pharmacies in Germany, after having difficulty getting a diagnosis or find once every three months is not enough. Once you get over the initial nervousness, it is very easy and becomes part of a routine. More information available on the forum if you decide you don’t want to wait another four weeks?

I also have other family members, who’ve had gene testing showing difficulty in absorbing B12 and other vitamins.

Am finding Solar Brewer’s Yeast B12 with other B vitamins, seems to give an extra boost to energy, etc. at the moment.

[Winniepoo15]

Hi. I’m sure he will get you sorted. I was I’ll too & went to see him. He listens attentively to everything you say & puts you at ease. He will def put you on the road to recovery. All the best.

[MartynLewis]

I also visited Dr K after over a year of severe symptoms and my experience was excellent. He will certainly help you.

[Lowblow]

How much is an appointment with this person please ? Does he definitely understand b12 deficiency and pernicious anemia

[ae0200 in reply to Lowblow]

Take a look at his website. The Cambridge iron clinic. Seems to have a lot of good reviews. I think in total it will be about £1000

[Rexz]

Sounds like you've found a decent GP that has an understanding of the nature of PA and not jumping to conclusions which is also important. It is known that PA has a hereditary component. When I was first diagnosed I had never heard of PA but since then I've looked back at my family history and found all my male line died from this disease.

If you are interested in supporting research into this area you may want to consider joining the Autoimmune Registry. Take a look at:

autoimmuneregistry.org

Best wishes, Rex

[Sleepybunny]

Hi,

Apologies for a quick reply but having a difficult day.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Have also read that a pepsinogen test may be useful in helping to diagnose PA.

PAS website has a page for health professionals that you could point your NHS and private doctors to.

pernicious-anaemia-society....

They also have lots of useful leaflets/articles.

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Two pieces of advice I usually give to UK forum members are

1) Always get copies of or access to all blood test results.

Always check for yourself even if you're told everything is normal.

2) Get hold of the local guidelines on management of B12 deficiency for your area.

Local guidelines on treatment/diagnosis of B12 deficiency are likely to change in next year or so as CCGs (Clinical Commissioning Groups) have been replaced by Integrated Care Systems.

Read blog post below if you want to know why I suggest reading the local guidelines for your area.

b12deficiency.info/gloucest...

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

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

BSH Cobalamin and Folate Guidelines

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

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 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.

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 am not medically trained.

[kfeedil]

hi ae0200 appreciate this was some time ago but what was your experience like with Dr Klein?

[ae0200 in reply to kfeedil]

hi, just got an email with this which is why I’m replying so quick. Dr Klein was amazing, he’s such a kind and understanding Dr. If you Google the Cambridge iron clinic there are quite a few positive reviews about him.

[kfeedil]

thank you ae0200 I sent him my ferritin results and he was super quick to respond and helpful. The cost is high hence the question! But I guess that’s the cost of someone who knows what they’re doing.