Pernicious anaemia help

[Hedgehogs15]

I was diagnosed with pernicious anaemia 40 years but a couple of years ago this young doctor said after a routin blood test I no longer had it and stopped my B12. I have slowly felt poorly since to the point of despair. Help please. Thank you. Jeannie

[Nackapan]

Is it not on your medical notes ? You know your body .

List symptoms and get your injections back.

Once on injections your body needs higher levels it Seems.

PA .You need injections for life and no testing is required.

Get helpl from PAS

Write to your Gp short and sharp. Copy in practice manager.

Tjus will be scanned onto your notes

Don't decline anymore

Take action.

[Hedgehogs15 in reply to Nackapan]

Thank you so much. I’m having blood tests and seeing a new doctor next week. Really kind of you to explain. Keep safe.

[Derz in reply to Hedgehogs15]

You definitely need injections back, also I am buying some B12 liquid form under the tongue, and this helps as well, look for B12 methylcobalamin this is the best natural form. You need to take it regularly and the result will come within few weeks.

[Derz in reply to Hedgehogs15]

To add to my previous comment, it might be a good idea to start some prebiotics as well, as they help will help a lot.

[wedgewood]

Pernicious Anaemia is an autoimmune condition that CANNOT be cured . A patient with P.A. should be on Vitamin B12 injections at a regularity that keeps B12 deficiency symptoms at bay, FOR LIFE . .Ask your GP to look up the facts about Pernicious Anaemia (as politely as possible , which I would find difficult) Also ask him /her ( as politely as possible ) what PERNICIOUS means . Perhaps put this all in a letter with a copy to the surgery manager .Your symptoms are returning, and you need your B12 injections reinstated ASAP .

[Hedgehogs15 in reply to wedgewood]

Thank you so much for taking time to reply. That’s really helpful. I have blood tests next week and seeing a new doctor so I shall be ready to insist I get a B12 jab. I’ve slowly been going downhill to the point I feel really tired/anxious and depressed. Also my sore tongue and pin and needles have returned. Thank you again. Keep safe.

[wedgewood in reply to Hedgehogs15]

Let us know how you get on . We hope that you get your injects reinstated .If not, further action will be required .

[Hedgehogs15 in reply to wedgewood]

Thank you. I will let you know. It’s very kind of you to take time for me.

[Hidden in reply to Hedgehogs15]

These doctors need a kick in the arse.How can they say after 40 years of b12 injections your cured. Dont they know its incurable and that b12 is needed for life...... where were these medics educated or in thier cases not.

[Hedgehogs15 in reply to Hidden]

Thank you. I had a big stomach operation when I was 28 and it was after that I started on BT12 injections. I’m going to be serious with the doctors now thanks to you guys

[wedgewood in reply to Hedgehogs15]

Just read that you had a big stomach operation some years ago . This could well be the reason for your B12 deficiency , if the part of your stomach called the FUNDUS was removed . The FUNDUS contains the PARIETAL cells which produce the INTRINSIC FACTOR and also STOMACH ACID , both of which are ESSENTIAL to break down and absorb Vitamin B12 . This is one of the reasons for patients requiring B12 injections FOR LIFE . You need B12 injections often enough to keep all the B12 deficiency symptoms that are returning , at bay . You must insist on reinstatement of your B12 injections ASAP . This must be done . Best wishes .

[Hedgehogs15 in reply to wedgewood]

The surgeon mentioned my intrinsic factor after the operation. He removed my gall bladder and part of my bowel. I started to feel poorly soon after and that’s when I was diagnosed with PA. thank you for you help

[wedgewood in reply to Hedgehogs15]

Lack of intrinsic factor for whatever reason means that you have incurable Pernicious Anaemia . But with correct treatment one can live a normal life as long as treatment is sufficient and not delayed . All the very best . Come back to us if you don’t get your injections re-instated !

[Hedgehogs15 in reply to wedgewood]

Thank you so much x

[Derz in reply to wedgewood]

I have been told the same from my GP that I don't have PA anymore, but I did not trust them as I can feel that the symptoms are there, but since I was buying B12 methylcobalamin sublingual and taking it regularly and at the moment I feel better than the injections from the GP.

[wedgewood in reply to Derz]

Well PA is incurable . You must be one of the lucky few PA patients who can benefit from sublingual B12 . I cannot . Have to S.I.

[Hedgeree]

Hi Hedgehogs15,

Make sure to point out to them that you had a serious stomach operation many years ago and that's when you started B12 injections as it affected your ability to absorb B12.

Also make them aware that you've been having injections for 40 years.

Good luck.

[Hedgehogs15 in reply to Hedgeree]

I will do that. Thank you so much for your advice. I really want my life back. Take care

[Emsworthy]

Hi Jeannie,Also, due to the length of time you have gone without the injections, you should see about having loading doses to start your regime again.

[Hedgehogs15 in reply to Emsworthy]

Thank you. I have made a not of this. You keep well too

[robinsnestwalke]

Doctors are the 6th leading cause of death in the US, though I've been told closer to 2nd leading cause. I've also been told by Doctors that I no longer have to take b-12, as I no longer need it. This is following a recent battery of bloodwork, but keep in mind, of course your b-12 is showing within the normal range, as you are getting supplemented by shots. Your doctor, my doctors and many that have told patients this, and I'm sure lots have suffered the consequences and should be fired. Period. Once you have nerve damage from lack of injection's, there is likely no turning back and you will be left with permanent nerve damage to you nervous system, like me. Sorry for the rant, but this is a serious problem within the medical system and it seems likely to be an ongoing issue, even experienced physicians are guilty of.

[wedgewood in reply to robinsnestwalke]

100% in agreement ..And B12 ampoules are so cheap ( of course that’s a part of the problem , isn’t it ? -think about it ) . It can also be administered successfully by sub-cutaneous injection , which makes it very suitable for self- injection, just like thyroid patiens who self-inject insulin . . People’s lives are being ruined for lack of this cheap vitamin . It is a scandal . But at least we have our PAS , thank goodness . But unfortunately not everybody who needs help has the necessary wherewithal to get in touch with the PAS .

[Lurcher-lady in reply to wedgewood]

Totally agree. Had my daughter not had a friend with B12 deficiency, I would not have found the PA group and likely still be feeling ill thanks to my GPs. Thank goodness we can bypass them and SI ☺

[Hedgehogs15 in reply to Lurcher-lady]

I agree this group have been a god send and I thank you all sincerely. I’m an elderly lady and I thought this was the end I’ve felt so I’ll but you have given me hope. I’m going for my blood test next week armed with all this information and saying I want my B12 injections reinstated. Keep safe and well everyone ❤️

[Lurcher-lady in reply to Hedgehogs15]

Good luck, us oldies need to speak up for ourselves.

[Hedgehogs15 in reply to Lurcher-lady]

You too x

[LolajaneB]

I had exactly the same thing happen to me. I was diagnosed with PA at 19 (35 years ago) after a short stay in hospital when I was very unwell and required a blood transfusion. I have been on the injections ever since. I moved recently and my new GP did a routine blood test and said my levels were good so she was stopping the injections as I no longer needed them. I ended up feeling so poorly that I phoned and begged them for my jab. They did relent and let me have one but since then I have bought my own supply of B12 ampoules and injections. I am never putting myself through that again.

[Hedgehogs15 in reply to LolajaneB]

Hope all is well with you now. Dreadful that we have to fight for our health to be ok x

[Litatamon]

stichtingb12tekort.nl/engli....

Hi Jeannie,

So frustrating. Here's a great resource. It is succinct and not aggressive for those doctors who don't like to be *told*.

Between #4 and #5 talks about errors in treatment.

[Hedgehogs15 in reply to Litatamon]

I totally agree. They don’t like to go against each other either

[wedgewood in reply to Litatamon]

Brilliant — Thanks so much for that link !

[Litatamon]

stichtingb12tekort.nl/engli...

Also helpful.

All the best to you.

[wedgewood in reply to Litatamon]

Thanks again for this great link 👍

[Brokenbutbeautiful]

This is a subject that raises my blood pressure! If you’re diagnosed with PA, you don’t suddenly stop needing injections! I have had some doctors tell me that my almost losing my life could never have been caused by a simple vitamin deficiency. I counter that with asking them just what the definition of pernicious is! You said they stopped your injections a few years ago, it’s a wonder you’ve made it this far without it! I’m not 100% sure how things go overseas, but I’ll be rooting for you, that they wake up and realize their mistake could cause someone their very life!

[wedgewood in reply to Brokenbutbeautiful]

Those references that Litatamon quotes are brilliant , They are published by aDutch foundation for B12 deficiency . There is the only B12 deficiency Clinic that I gave ever heard of in Amsterdam . The Dutch seem experts in this field .