Recently diagnosed with PA

[Nikkimae]

Hi my name is Nikki and I am 24 years old, in the last few weeks I have been diagnosed with pernicious anaemia. Looking back I have been suffering for a long time. Symptoms mainly consisting of extreme tiredness, especially when waking up on a morning. Dizziness, palpitations, aches, stomach upset, breathlessness and tenderness/pins and needles. Most alarming was probably the slight memory loss and anxiety.

I eventually visited my doctor to be told I must be suffering from depression, I was then given antidepressants which I refused to take. I knew it was not that. I returned to the doctor once again to be told it must be stress and again I was given more medication. By this point my symptoms were just increasing and it became difficult to go to work of even walk anywhere.

I once again returned to my GP and asked for some blood tests. My blood test showed my b12 was severely deficient below 50pg when they should of been between 200-900 my folate was also only 3.8 with the guidelines been given as 3.1 - 20. My GP didn't really say much about this and ordered another blood test again showing the same thing. It was also noted my MCV level was also high.

It took myself and my partner to make yet another appointment to ask what this meant, by this point I had done my own research and was alarmed at how bad my condition was. Once again I returned for the doctor to tell me they had run some 'autoimmune' test and it had come back negative for coeliac disease. She then diagnosed my with pernicious anaemia it was ordered for me to have 6 loading doses which have been over 3 weeks I have had my 5th and feel no better. In fact I have had incredible pain in my arms legs and back. My GP has now advised I will only have them 3 monthly after that also. But I feel this will not be enough.

They have also now run tests for chron's which I am waiting for the results.

I have not been offered any folate supplement and this is now a concern. I just don't feel like I am being taken seriously. I have advised the nurse of my ongoing symptoms to be told 'you'll be fine, it might just be a coincidence'.

I feel my doctors don't really know how do handle any of this and constantly feel rushed out of every appointment. Knowing this is a common thing i would love some advice on how to handle this further. This is effecting my job severely and they do not seem to understand how serious this condition is.

Any advice would be helpful.

Thanks,

Nikita x

[Gambit62 Administrator]

there is a lot of useful material on dealing with GPs etc on the following site

b12deficiency.info/

However, at the end of the day possible that it may prove more effective to take on treating yourself - no problems with toxicity, though you do need to make sure that folate levels get sorted out ... and really need to be at the high end of the spectrum not just in range - and as you seem to have some signs of anaemia need to keep an eye on potassium levels as these can be depleted in early stages of treatment.

Assuming you are UK based

You have some neuro symptoms which means that recommendation would normally be shots every other day until no improvement though practically that ends up as 3 weeks and a review. Maintenance shots would be every 2 months under that regime ... but even that doesn't work for a lot of people.

Anxiety is not a good symptom to have - feel for you as it used to be one of my big bugbears before I started treating myself.

[Sleepybunny]

Hi,

If you are in the UK

1) I recommend you ring the PAS (Pernicious Anaemia society) ASAP

pernicious-anaemia-society.org

Head office: 01656 769 717

You can leave a message and they will get back to you.

2)google "BCSH cobalamin and folate guidelines"

This is a lengthy document about B12 and Folate deficiency. Have a look at the diagnosis flowchart on page 29.

3) bmj.com/content/349/bmj.g5226

High MCV can indicate a macrocytic anaemia.

These books may be helpful

Pernicious Anaemia; the forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

[morgan45]

Things I have found out

1. Not a very well researched disease so keep on at your GP you may have a battle on your hands. Due to the lack of research you may end up as knowledgeable as your gp you however have personal experience.

2. You not feel better for a while. my analogy is if you go to the shop and buy butter, flour, eggs and sugar you don't have a Victoria sponge by the time you get home. Equally so your body needs time to get back to normal.

3. There is a B12 'range' like anything else because everyone is different. If you feel you need injections more than 12 weekly then make a nuisance of yourself at the Doctors. I function best at the high end of the range others are different.

You are at the start of a learning curve but you will find out what is best for you. Don't let the doctors fob you off as I said earlier it is not very well researched so with personal experience you can quickly end up with more knowledge than them.

Hope I have helped

[Nikkimae]

Thank you everyone for you replies, I am very grateful.

I have just rang the PA society there and left a message.

Yes I am based in Scotland - sorry should of mentioned that!

The links are really helpful and I am also planning on purchasing those books.

It's really nice to be able to hear from other people dealing with this condition.

I thought I would have an argument for having more regular injections, as the neurological symptoms have been quite bad.

I am due to see my GP on Wednesday and hopefully we can make some head way and also get my chon's results!

Thanks again everyone.

Nikki

[Sleepybunny]

Hi,

Good luck with your GP appt on Wed.

Another book I forgot to mention is

"Could It Be B12" by Sally Pacholok

Really interesting and detailed with case histories.

If you find Martyn Hooper's books helpful, he is in the process of writing another one to be published later this year. "Living with Pernicious Anaemia" made me cry because I could recognise myself in other people's descriptions of what they had gone through.

Other websites

b12d.org

b12deficiency.info

b12awareness.org

There's some good videos on Youtube about B12 deficiency and PA.

Another useful document

ukneqas-haematinics.org.uk/...

[Sleepybunny]

Hi,

Just remembered that there is a scottish petition about PA treatment.

scottish.parliament.uk/.../...

[Nikkimae]

Thanks sleepy bunny that's all been really helpful!

Hopefully ill be able to get the treatment I need come Wednesday - I really hope so as I just feel like a zombie at the moment! Trying to explain the condition to work has also been a nightmare.

Thank you again everyone

Nikki