Chronic tiredness

Hi, thanks for your reply will look into this as it is becoming a major problem.

Hi thanks for reply, I'm not taking anything at the moment, is there something you could suggests? X

You can buy a spray from most health food shops or sublingual lozenges from an online search. I always used the spray as a top up, and it helped me. It was called Boost and came in yellow packaging.

Hi, the forum probably won't allow me to put exact details of the supplements I take, but here's the as many details I can give. The B12 I take is Methyl-B12 (methylcobalamin) 5000mcg and they are cherry flavour, and you just let them desolve under your tounge (sublingual). The theory is that some of the B12 is absorbed into the blood stream skipping out the digestive system, plus with it being the Methyl-B12 its absorbed better by the body. The Folic acid I take is Methyl-folate (again it's meant to be better absorbed) 400mcg, which I believe is the normal RDA, but it is quite important you don't exceed the RDA greatly (the BNF gives quite a list of side effects and cautions). I get my supplements from one of the well known buying sites. I would have regular blood tests then you know if it's working for you, plus blood tests will rule out any other issues.

I would also encourage you to talk to your tutor about this because issues with placements are the hardest thing to resolve and put right!

I have also read your last message to Clive, sadly it does sound like the nurse doesn't have a clue! As Clive will probably recommend the PA Society is a good source of information, which you can present health care professionals with!

Good luck!

Kelly

That's another "sad story" Kelly

I was diagnosed with P.A. in 1972 and for the first 39 years I was totally ignorant of what it was about as I knew no-one else with it and neither the succession of doctors I saw (for other reasons) or nurses (who gave me the four weekly cyanocobamalin injections) ever asked me how I was coping.

Down through those years I had noticed a return of neurological symptoms in the week running up to my next scheduled injection and so I used to "slip in" an occasional three week one until in 2010 the then nurse "caught me out", refused to give me the injection and reported me to my doctor who called me in and I was "forbidden" from having any injections at any time that were not 4 weeks apart. He said the pains were all in my head and couldn't be due to the P.A. because I was having the B12 injections.

I then joined the Pernicious Anaemia Society and asked the question "am I the only one in the world who feels the need of more frequent injections?" and was amazed to find that there are hundreds of "us" out there and so the battle began.

Long story short, two years ago when I was diagnosed with Type 2 diabetes, I changed from my adamant "one size fits all" doctor to another one in the practice who eventually agreed last July to increase the frequency of my injections to every three weeks.

Have you ever been tested for Intrinsic Factor Antibodies or Gastric Parietal cell Antibodies? Is there a family history of P.A?

It is good that you are aware of the importance of folic acid as this is essential to process the B12 you are supplementing.

I suggest you make a list of your symptoms, present it to your doctor and ask to be given B12 injections in accordance with the B.N.F. and N.I.C.E guidelines on treatment of Cobamalin Deficiency for patients with neurological symptoms.

If possible take someone with you who can verify your symptoms as they are less likely to be dismissed in front of a witness.

I wish you well.

Hi Clive, we have had a long chat about this before! It goes to show our storys and Nikitas story is not a one off! And I really feel for her, because when I was on placement I remember being so tired on the train on the way back from placement and being so tierd and falling asleep where I sat, then sort of coming too and being totally disorientated to where I was so much so I actually got off the train at the wrong stop a few times, plus I was so tired and depressed I must of seemed that I was mad! as I said before the irony is one of my supervising nurses had a B12 deficiency/P.A and I was criticised/disciplined for not requesting to go to the doctors properly, and then not coming to placement afterwards even though I would of spent about a hour there! Then I told them the next day what had happened and the G.Ps were quite concerned, plus I showed them my puncture mark where I had the blood test, now you would of thought that would of been the que for a bit of tea and sympathy! ... wrong! ... more criticism and disciplinarys! I just now think that a lot of health care professionals now spend a lot of time caring for their patients and themselves, they don't and can't give anymore care and support to anyone else.

Hi Clive , I have just read your post and am shocked, you are describing treatments run by unfeeling medical persons , people who report you for wanting an additional injection. Is this common? I'm so glad you were able to get a dr. That has a more logical approach to treating all medical situations.

Hi Kelly ,  I'm Suzanne from the US. I have had PA for over 20 yrs. If ever I could be of any advice or just an ear to listen. I hope you are feeling better and recovering your life. All the best   Suzanne

I can answer the same questions about B12 treatment from 10 different people every day on another forum - that's how widespread the lack of knowledge is over here. I lived for nearly forty years in ignorance and believe me ignorance is not bliss when it comes to B12 deficiency.

I wish you well.

Hi Clive thanks for your reply. My nurse keeps telling me that it doesn't matter how often you have the injections! Very annoying. Is there any advice you can suggest so I can take it to her and argue my case? I feel as though she hasn't got a clue if I'm honest.

Nikita

I can only repeat what I said before that if you have Pernicious Anaemia with neurological symptoms then you should be having your injections of hydroxocobamalin (at least) every eight weeks and not twelve.

I think your "argument" should be with your doctor and not with your nurse who can only give injections as prescribed by the doctor.

Your doctor should be following the British National Formulary (B.N.F.) and the National Institute for Health and Care Excellence (N.I.C.E.) guidelines on Treatment of cobalamin deficiency and the relevant paragraphs for you as highlighted below: 

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

The N.I.C.E guideloines read:

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.?"

It is also important that your Folate level is monitored as this is essential to process the B12.

Make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even restart you on loading doses "until there is no further improvement".  

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I wish you well and hope you get the treatment you need and deserve.

  

Hi Kelly09968, 

Thank you for sharing your story. I am 26 from Australia & was diagnosed a few years ago with PA and have regular 4-6 weekly injections which seems to be helping & luckily my doctor has been supportive. I am interested in your recommendation of taking RDA of folic acid.. do you have a recommended brand, or tablet that you would be happy to share? 

thanks again, I wish you all the best. 

liv

Hi, I have to be honest I'm not sure about the mechanisms about taking folic acid and B12 deficiencies / P.A. But from just reading the posts over a few months after I was diagnosed with the B12 deficiency it became apparent that Folic acid is needed to process B12 and more often if you're B12 deficient you will be Foliate deficient, in my case it made sense because I'm a bit of a veg phobe! Now to sort of answer about the RDA/RDI of the folic acid question! The BNF is the book that doctors and nurses in the UK use to look up and reference medicines. In UK and a lot of other countries 400mcg plus what you get from your diet is recommended to women who are planning to get pregnant and those who are in the early stages of pregnancy to prevent spinabifida (please excuse the spelling), plus it's now starting to be widely excepted that elderly, dementia patients can be folic acid deficient, but this does not mean that you should load up granny with folic acid! It just demonstrates that folic acid is strong stuff, and the reasons why the BNF advises caution in exceeding the RDA/RDI. Now the question about type and brands! I can't recommend any due to the moderators, but I must admit I probably have fallen into the marketing trap a little bit, because as I have said before I buy the Methyl type B12 and folic acid because they are allegedly better absorbed! And guess where I mainly get that information from particularly in the case of the folic acid! ... yes you guessed it! Off The bottle! But if you accept that B12 and folic acid is processed in a similar way it makes sense to take the Methyl form of folic acid. All I know in my case this combination seems to work for me, because I used to have high blood pressure, and I became a touch mentally sharper plus slightly less tired that was until the doctors started to play with my thyroid, although my blood pressure is still very good! And every time I have my B12 tested my levels come back high. So as I said before what I'm doing is working for me, but it may not work for everyone, and always consult your doctor before trying anything new!

Personally I have taken 1 – Folic Acid 400µg tablet every day for more years than I can remember as a "maintenance" dose in addition to what is fortified in my daily breakfast cereals, vegetables etc and when last tested it was 60% of the normal range.

I was diagnosed with P.A. 45 years ago and have injections of cyanocobamalin every three weeks.  Folate is essential to process the B12 and gets "used up" doing so.

In the UK folic acid can be bought cheaply over the counter at any pharmacy but I would recommend having your Folate level checked before supplementing so that your doctor is aware.

Hi Kelly, thank you I really appreciate you getting back to me. I spoke to my doctor just the other day and he was in agreement that taking folic acid would be of benefit. I wish you all the best. Thanks again 😊😊

Thank you, I will definitely talk to my doctor re a blood test to check my folate levels. Thanks for your reply, Liv