Hi, I have PA and quarterly injections and find this inadequate also did take iron supplements which doesn't agree with me. Does anyone else

[lupin23]

have a problem with iron supplements? How does one go about having injections more frequently?

[Hidden]

Hi Lupin23,

Read my responses to this question thread:

pasoc.healthunlocked.com/qu...

There are some links in there about the BNF guidelines that might help you get more frequent injections. It is a question of educating your doctor that a) (s)he is allowed to increase frequency according to the BNF, b) greater amounts will not be harmful to you as it is water soluble and non toxic, and c) treatment needs to be symptom led, rather than dictated by blood test results. Do you have neuro symptoms? If yes then in theory the BNF entitles you to an injection every other day until no further improvement.

Regarding iron, I have read that lots of people can't tolerate supplements. Have you tried Spatone? Available from Boots, will take longer to get your levels up, but is usually better tolerated.

Hampster

[Hidden]

I think the first link in there doesn't work. Try this one:

cks.nice.org.uk/anaemia-b12...

On the left click on:

Management =>

Scenario:management =>

Treatment for B12 deficiency =>

[lupin23]

Hi Hamster, thanks for info will give my GP a call to see if injections could be sooner. I sometimes wonder if I will ever feel well again. Thanks again

[Hidden in reply to lupin23]

I think we all wonder that! You need to make sure you have adequate folate as well as iron, do you know what your levels are?

[lupin23]

Hi, don't have any readings at present but I am due further tests in the next week or so. I am also going for an echocardiogram because I am breathless. My whole body is in meltdown, muscles losing tone and now knee pain. Is this normal reaction to PA

[Hidden]

All I know from reading this forum and the PA Society forum is that there are many people out there that need treatment more frequently than 3 monthly. Also, you won't be able to make best use of the injection you are getting, if you are low on ferritin and folate. Breathlessness is a symptom of B12/folate and iron anaemia, take your pick.

I would also ask the doctor to check your thyroid, has this ever been done?

Have a read of the PA Society forum, section called My Story. You don't have to be a member to read it. You can get lots of tips and insights from reading other people's stories.

H x

[lupin23]

Hi I should have mentioned that I have a thyroid condition so my B12 is autoimmune problem. So many problems have appeared since PA was diagnosed

[Hidden in reply to lupin23]

I have Graves Disease as well, I struggle with knowing what symptom relates to what condition, and also what condition came first? Does it really matter? All I know at the moment is I feel better with frequent B12 injections - currently on once a week, moving to every 2 weeks after this week. I keep a symptom diary, that helps. I read the Thyroid UK forum but it depresses me, so much awful medical care and also undiagnosed B12d (my posts are always about B12d). And lots of self supplementing so people end up never getting diagnosed. Would be nice to have some success stories every once in a while!

Take care, H x