Dismissive g.p.’s!

[Frankieluca]

I was diagnosed with PA six years ago. I struggled badly working every day, with colleagues that really didn’t understand the condition- or want to. I’ve now retired and obviously find symptoms easier to deal with. My biggest bug bare now is my sleeping pattern. I can either not get to sleep for hours , or fall asleep and the wake after a few hours and cannot get back to sleep. Whenever I mention this or other ailments such as dizziness, feeling spaced out to my g.p.’s ( never see the same one twice) and ask if it’s related to my PA they totally dismiss it. Am I the only one that thinks they know or don’t want to know much about it!!???

[clivealive Forum Support]

Hi Frankieluca what frequency of B12 injections are you on?

Sadly a lot of doctors attitude is "it's vitamin for goodness sake".

I suggest you do what I did after "living in ignorance" for nearly forty years before I joined the Pernicious Anaemia Society eight years ago - click on the link below and scroll down

.

healthunlocked.com/api/redi...

There you will find reams of useful information on which to "gen up" on P.A. and B12 deficiency and maybe you can "educate" in turn each of the doctors you get to see.

Fortunately I was able to persuade my "one size fits all" doctor to increase the frequency of my injections by being confident in what I was saying to him.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years and I'm still "clivealive" aged 77.

I wish you well.

[0406 in reply to clivealive]

Hi there, so many stories here resonate with me. Currently struggling with light headed feeling, tired and weak, the list goes on! Blood tests all borderline so having no luck getting treated. Can you advise me where to buy B12 + which needles etc are best? Most people say to buy from Amazon Germany... also which B12 i.e CY/meth/by? I'd be grateful for any advice 🙏

[clivealive Forum Support in reply to 0406]

Hi 0406 I'm sorry I'm not able to advise on purchasing B12 from abroad as (fortunately) I've never had to do it.

I suggest you post your question on a new post as there are lots of members on here who will be able to help by providing advice and useful links.

I wish you well.

[0406 in reply to clivealive]

Thank you so much... I will 😊

[Melbourne-Girl in reply to 0406]

I really feel for you 0406. It is not easy to get a definitive answer as to wether you have got P.A. The stomach is lined with parental cells which extrete intrinsic factor and hydrochloride acid. Both are necessary for creating a healthy red blood cell & life.

One has to have the cells already mentioned as well as Folate (B9) and iron for the proper creation and function of a red blood cell.

From what I understand there may be 2 things hindering a proper diagnosis of P.A.

One is that Scientists around the world cannot agree at which level the red blood cells in the blood are deficient and that you may or may not have P.A.

As if that isn’t enough to cope with the test for P.A. Is called the intrinsic factor test and is only 50% accurate so that you may have P.A. but there is only a 50% chance the results will be right so 50% of people treated may have a negative test result and yet have P.A.

My advice would be to see if you can find a good Gastroenterologist to treat you properly. If you have P.A. You need to be treated ASAP with intramuscular B12 injections as well as taking Folate (B9).

In terms of the B12 injections they usually come with a syringe with the product in it and the needle attached. It has to be a intra muscular injection so the needle gauge should be sized 23. A 25 sized needle is only used for subcutaneous injections (just under the skin) and a 21 sized needle is usually used to draw up the correct amount of B12.

My understanding is that is safer to inject in the main muscle at the top of your arm.

Good luck in finding a good Gastroenterologist who is interest in and deals a lot with P.A. This won’t be all gastroenterologists as when Drs Specialise they have particular diseases that they work with mist of the time.

Best of luck & let us know how you get on,

Melbourne-Girl

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[0406 in reply to Melbourne-Girl]

Thanks for your reply... I'm hoping to have an injection of B12 tomorrow with a private Doc and have been using transmuscular patches for the last 3 days which are definitely helping. I've also ordered my own 'supplies' so I can learn to self inject once I've had a supervised shot. My daughter is a nurse too so I can always ask her to do it if I bottle out!!

[Melbourne-Girl in reply to 0406]

Hi 0406 I am so glad you are having. B12?injection soon. Have you got some folic acid (B9) as you will need that as well to make the most of your B12, they work together.

Is the Private Dr a Specialists? Hopefully a Gastroenterologist who has P.A, as one of the main diseases he concentrated on.

Your daughter will be able to help you with teaching you the injection protocol. Does the B12 come in a totally prepared syringe? I think that they are great & will cut down any potential infections from injections.?which country do you live in& does your daughter live close to you in the same country? If you are not totally happy with your consult tomorrow I know your daughter could help you find a good Gastroenterologist. She will be a real gem for you to give you support and help you go in the right direction. 👩‍⚕️ (Your daughter).

I am in Australia as you can see from my name so there are some different laws etc

from country to country.

Keep us in touch as you progress to better health. It’s great to hear success stories,

Melbourne-Girl

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[wedgewood]

It sounds as thought you may need more B12 injections . You can try to obtain them from your doctor . If that proves impossible , you could think of self-injecting .Its cheap

to do .if it comes to that, you can get help. And advice from your friends on this forum . Don’t forget that you need folic acid to work in conjunction with B12 .

[deniseinmilden]

One of the most frustrating things about B12d is you are desperate to go to sleep and wake up refreshed but can't - and being dismissed by everyone is another.

You have my heartfelt sympathy and I'm sure that of so many fellow sufferers reading this too.

If you get enough B12 and supporting supplements it does help. Please read through the replies to various posts on here and ask for more help if you need it.

[Nicole223]

Hi, I feel exactly the same. They keep telling me they have never seen this before although reading online hundreds of people have the same feeling. I also feel the dizziness/spaced out feeling which is very hard to explain as it comes and goes. Hope you feel better soon!

[Melbourne-Girl in reply to Nicole223]

Hi Nicole223,

I really feel for all of you sufferers who have yet to find the Specialust who is your champion and will have your back at all times. You should be Ble to get the B12 intramuscular injection easily from such a doctor and folic acid.

I know you must feel so frustrated & exhausted etc by your symptoms but if it is possible to find a Gastroenterologist, Cardiologist or Neurologist who can be your champion you will feel so much better. Unfortunately in each specialty thre are lots of sub specialities so it may take while to find that right specialist who has P.A. As one of their top interests (other specialists in the same area may have a few other disease states as their main interests and not know much at all about P.A. It can be quite a process to find the right fit in terms of both GPs& Specialists but don’t give up if you keep at it you will find the right one. One way to look is look on line at Clinical Papers & if you find the same Specialist in lots of the papers then that is a Dr who has a great interest in PA. Another way is to find out at your top universities who does the main of theivtrials & clinical workbin this area.

Try never to be disalusioned about your process as you may simply have a Dr whose main interests lay in other areas. You are an expert of you own bodies & often Drs won’t admit to you that they don’t know much about that area. Never be afraid to ask them how many patients they treat with P.A. & along the way you will find out the amount of treated #’s that would be up to date here & right for you.

Good luck in your journey I am still trying to find my right Specialist in some areas.

Best always

Melbourne-Girl

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[Melbourne-Girl in reply to Melbourne-Girl]

I M finding it difficult to type as I have a lot of pain in my arms, elbows, wrists, fingers & hands do apologise about the typoes xx

[Melbourne-Girl]

Hi Frankieluca, it totally disgusts me that you see a diffetent Dr each time time for your P.A.

It is an autoimmune disease where pereital cells attack gastric glands or your gastric lining in your stomach so you are never going to be able to produce healthy red cells which pretty much affects your whole body.

Is it possible to ask for a referral to either a gastroenterologist, a cardiologist or a neurologist that deals with P.A. All of the time and you need to stay with that specialist who understand and treats your disease properly.

I know you will have to do some research to find the right one who will be proactive & give you vitamin B12 daily intramuscularly until your red cell count is normal and then follow up with B12 as necessary to keep you in good form.

A child will need a Paediatrician for their P.A.

It can badly affect your intestine, spinal chord or heart as well as other organs and even though you must be feeling down by all of this you need to push forward forget all the differing G.P.s (except to get a referral to the Specialist) who will give you all of the appropriate care that you need. Hopefully you will get one that is right for you straight up but if you dont keep going until you find one who will give you the time, care & treatment that your disease needs and that you deserve,

All the best Frankieluca keep us in touch with you progress,

Melbourne-Girl

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[Belsfield]

No I have the same problem, both with the doctors and the nurses that give me my injections. Now I don’t mention how I feel. Come to the conclusion that they don’t know anything about B12 and the problems.

[Frankieluca in reply to Belsfield]

I think you are right. There is just a ‘general’ way of dealing with PA, and we all have to fit within their guidelines, but we don’t! We are all different with different symptoms.

[Melbourne-Girl in reply to Frankieluca]

That’s right you don’t have to put up with someone who knows little about the disease!

See my other posts 🍀🍀🍀

[Melbourne-Girl in reply to Belsfield]

Belsgield don’t give up, I know you have come across many who don’t understand the disease so look for Drs who do! Look at what I wrote to Frankieluca

Good luck

Melbourne-Girl

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[Linda730]

I lost my job because I would fall asleep at work, sort of like narcolepsy. More frequent injections helps, but if I'm stressed by anything, sleep patterns go haywire and my falling asleep at odd times increases again. So, you are 'normal' for b12d and the doctors are ignorant. I'm in the US and it's no better here. Even specialists see no relation between a myriad of issues and b12. But they sure do like to say it's all in my head!

I'm still searching for a doctor who knows more than I do. I hope you find yourself... don't give up.

[Melbourne-Girl in reply to Linda730]

Good luck with that one Linda as you will find

one if you don’t give up!

All the best

Melbourne Girl

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[Lohikaarme]

what I found is that unfortunately most dr's know little to nothing on the subject of B12D/P.A

My inlaws are highly trained medical professionals, one a professors and the other a consultant and both knew little about it or how nutrition affects health and mental health. I even taught the professor about the efficacy of the use of vitamins and minerals whilst he underwent chemotherapy - he had won awards for his research in chemo yet knew nothing about how it affected vitamins and minerals and as such some of the sideeffects being cause by the leaching of the vitamins and minerals.

Moral of the story: research P.A as much as you can and take printouts of the information so they can't fob you off and hopefully you'll get better treatment. Also, have a look at the co-factors needed for b12 and how your symptoms could be eased with the use of other various vitamins, minerals enzymes and fermented foods.

love and light.

[Melbourne-Girl in reply to Lohikaarme]

Lohikaarme look at notes between myself & Frankieluca. It may not seem fair that so many Drs don’t understand the disease therefor can’t treat you properly & just keep searching until you find the right Specialist to treat your disease and look after you properly as you deserve to be.

Shame your not in Australia I could give you some names of such Drs to make an appointment with,

Best wishes

Melbourne Girl

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[Melbourne-Girl]

Could you please send 2 or 3 of those 6’6” boxers down to Melbourne please. Paid on delivery of goods as long as they are still healthy lol

[Melbourne-Girl]

Frankieluca have you managed to source a gastroenterologist yet who treats a lot of P.A.?

I hope you have as all of us deserve to be treated by a Specialist who deals with P.A. on a regular basis that has you back

If you haven’t yet keep plodding til you get that right person for you, you will get the right one sometime if you keep at it.

You could always look up clinical medical papers on P.A. & find the Gastrogist or other Specialist who is heavily involved with P.A. & see that is pa main interest of theirs & find out if they seen patients clinically & get your GP to refer you. If they don’t see patients clinically call their rooms and ask their nurse who does treat a lot of P.A., get names etc that has to be a start as we all deserve to be treated by a Specialist who understands P.A. & will fight for you to get you feeling better with normal blood cells etc

Keep us in the loop & good luck to you & others like you in a similar situation,

All the best

Melbourne-Girl

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