Hi Isobellecooper all I can suggest if you are in the U.K. is to try and persuade your doctor to increase the frequency of your B12 injections as I have had to - either that or self inject as so many on here have had to resort to.
I am not a medically trained person and I wish you well.
I can only second what clivealive has written . I had to resort to self-injections to keep well, as 3 monthly was not sufficient . You may be lucky if you ask your doctor for more frequent injections as one hopes that doctors are getting more knowledgeable about Pernicious Anaemia. Otherwise , come back here and ask for information about self-injection. Best wishes .
I try to keep myself busy all the time. Volunteering, study,dancing, also amino aside supplements... But sometimes feeling terrible. Doctor have prescribed to me tons of antidepressants, but still avoiding that. My support to you.
Follow Clive are Wedgwood’s recommendations. It looks like you really need injections more often... So go back to GP, armed with photocopies of guidelines re: treatment of PA. Look up the PAS posts .
Incidentally how often do you have iron infusions? Which type are you receiving, if you know. How does it feel while receiving it and afterwards? How long did it take before you felt an improvement in energy levels?
Sorry to bombard you with so many questions but am due to receive an iron infusion for 1st time on Thursday next week as a trial... Haematologist said he didn’t think it would help me but give it a go and see if it makes any difference. My iron levels at 4 (range 8.8 to 24)... has been low and even lower for years . My saturation level is 8% (range 20-40) so feel pretty rough as though am going to faint all the time , difficult breathing, can’t function at all, heart behaving erratically... have to lie down often. Scary. I have B12 deficiency but suspect it’s PA ... but no one wants to make the diagnosis although agreeing I need B12 injections! How odd is that? Mind you I had to fight with GP for a year to get treatment approved.
Thanks if you feel able to answer my numerous questions and wishing you luck in trying to obtain the treatment you require.
Do you know if you feel better after your injection and if you do, do you feel much worse or return of symptoms before your next injection... if you do it means more frequent injections.
Also have you had your Folate levels checked. If your Folate levels are good then knowing your D3 is in good range is the next thing. Vitamin D3 helps greatly with depression and your mood.
I’ve been taking D3 2000iu for the last year and it’s just in mid-range and have upped it to 4000iu a day just recently after my blood test.
I don’t have any idea of Iron transfusions but you need adequate amounts in your body so if it drops so rapidly then I would talk to the doctor to see if he can prescribe you Ferrous Fumarate if needed but that’s only a suggestion.
Apart from that I’m guessing your doctor would have done Thyroid tests already which needs to be right.
Eating right and taking some time out for exercise helps greatly depending if you’re able to exercise, even just walking for 20 mins a day outside helps you to a great extent.
Taking a broad spectrum multivitamin may also help together with a good diet.
Hope you get to the bottom of your problem.
Wishing you well.
I’m not a medical professional but just some suggestions from my experiences over the last couple of years,
Note:Having more injections than you need may not help although it’s not harmful as in overdosing but having an injection before ‘return of symptoms’ is what you need.
I don’t know if it’s ok for you to take a stimulant such as Korean Ginseng 500mg which you can buy from Holland and Barrett but I would talk to a doctor before taking it ax it can interact with other medication and is not advisable in some conditions so do take advice from a medical professional before taking it.
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