Pernicious anaemia symptoms fluctuating. Seeking support

[Chooper1l]

Hello,

I have pernicious anaemia and have injections from my surgery every 8 weeks. I get by fine with these most of the time - I can go to the gym and go to work and not feel crazy tired or weak.

However, I go through periods where I do feel exhausted, weak and can barely open my eyes or leave my bed. This can be a week after I had my injection or have way through... it seems to be random. Some months im fine and others i feel horrendous yet do the same daily activities? Can anyone explain why this could be happening? Could it be related to how well I'm eating? I do suffer with eating problems and don't have the best diet?

I last had my b12 injection 4 weeks ago. I go to the gym 3 times a week and cheerleading once a week for 3 hours. Some months I can barely get through an hour of cheerleading others I get through the 3 hours fine. What's up with my body? This last month I've spent all day in week struggling and my weekends in bed. My doctors surgery has also closed meaning I can't get an appointment until another surgery accepted me.

Any guidance or thoughts would honestly be gratefully appreciated. I understand I am very lucky to cope so well with life having PA compared with others and for that I am very thankful.

Claire

[clivealive Forum Support]

Hi Chooper1l have you any idea what your Folate level is?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Some symptoms of a folate deficiency are similar to those of a B12 deficiency.

I do hope you find another surgery soon so that your injections can continue uninterrupted.

I'm not a medically trained person but there are others on here who will be able to give you good advice.

[Chooper1l in reply to clivealive]

Hi,

Not a recent folate level no. I'm going to try and get an emergency appointment tomorrow and have that along with my b12 and ferretin tested.

Thank you for your response it's very much appreciated.

Regards

Claire

[Sleepybunny]

Hi,

Have you had a look at the PAS(Pernicious Anaemia Society) website?

pernicious-anaemia-society....

PAS tel no [phone]

Some PAS articles are only available to PAS members

pernicious-anaemia-society....

B12 books

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

Martyn Hooper is 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 book about B12 deficiency with lots of case studies.

B12 blogs

May be relevant stories on Martyn Hooper's blog about PA.

martynhooper.com/

There is also an interesting blog on "B12 Deficiency Info" website.

Some people on this forum find that the levels of NHS B12 treatment is not enough for them and they self treat.

Having one auto-immune condition (PA) can increase the chances of developing another.

Have you ever had tests for diabetes, thyroid disease, coeliac disease etc?

I am not medically trained just someone who has struggled to get a diagnosis.

[Chooper1l in reply to Sleepybunny]

Thanks for your response. I've been tested for thyroid disease which came back negative and so did coeliac! Not diabetes though..that may be one to consider.

Claire