Hi new here

[Donnae]

I have pernicious anaemia and I have injections of hydroxycobalamin every 3 months. I had my first injection in August 17 and these symptoms - swollen throat, hard stool, leg weakness, cold intolerance, looking tired and pale, palpitations, losing hair and eyebrows. Any advice please?

B12 197 (190 - 900 pg/L)

Thanks

[Gambit62 Administrator]

are you based in the UK - protocols for treatment vary from country to country.

Did you have any loading doses or did you just go straight into maintenance shots?

Did you notice any improvement after the first shot?

[Donnae in reply to Gambit62]

Thanks I am based in the UK and I went straight into maintenance shots. I noticed some improvement after the first shot and I think this is now wearing off

[Gambit62 Administrator in reply to Donnae]

nobody has ever managed to trot out any scientific evidence to support 3 monthly for hydroxo maintenance shots so quite possible that you really do need it more frequently.

Best advice would be to keep a diary of symptoms to provide some evidence that it is wearing off as talking to GP can be quite difficult - particularly given that you also have thyroid problems and the overlap in symptoms is quite significant.

[clivealive Forum Support]

Hi Donnae do you know what your Folate level is?

[Donnae in reply to clivealive]

FOLATE 2.1 (2.5 - 19.5 ng/L)

[clivealive Forum Support in reply to Donnae]

You may need to supplement with Folic Acid as Folate and B12 help your iron to make red blood cells.

Have a word with your doctor or pharmacist about what strength to take. It can be bought cheaply over the counter.

Personally I have taken 400ug every day for more years than I can remember and I've had P.A. for 46 years.

[plug]

Hi,

a thyroid function test may be a good idea. Thyroid problems are common with P.A. and can cause some the problems you are experiencing.

kind regards

[Donnae in reply to plug]

I have thyroid problems thanks

[Donnae in reply to plug]

TSH 8.3 (0.2 - 4.2 mIU/L)

Free T4 13.8 (12 - 22 pmol/L)

Free T3 3.5 (3.1 - 6.8 pmol/L)

[Ryaan]

3 monthly is not enough for a lot of people hence they self inject and your Folic Acid is too low which works hand in hand with B12.

I had 1 injection per week for 12 to 16 weeks together with Folic Acid 400ug 1 daily and felt much better, then I cut down to 1 monthly injection.

I still felt I needed more so by experimenting I now self inject 1 in 2 weeks.

Your B12, Folic Acid, Iron and witamin D should all be at a good level as they all have overlapping symptoms.

🙂

[Wowo23]

Hi Donnae. I'm wondering the same as Gambit62. Did you just get one shot at first? Have you had any other tests? Instrinic factor, folate? I would defiantly talk to my doc and ask for more testing and let then know how you feel