I am so confused

[danielcox5]

Hi, I am totally new here and not even sure if I should be here but I am 59 years old and I hope you can help me. I don’t like going to the doctor (White coat allergy) but a couple of years ago was admitted to hospital and was diagnosed with Chronic Cardiac Failure and was told I needed to have a regular GP rather than only going once or twice a year to s medical centre if I was so sick I needed time off work as I am now on 18 tablets a day plus nitro spray. I have been telling this doctor since I have been seeing him that my feet have been getting pins and needles originally and then developed into completely numb soles to the point where, because of the added stress on them due to expansion because of fluid retention (CCF related) which I coped with by not wearing shoes whenever I could avoid it so they were getting probably abused by me but with not much feeling in them it continued. Anyway 4 days ago I had a blood test for a lot of things and the following day got a call from the surgery to come in asap. Most of the results like kidney, liver, blood sugar, cholesterol etc were ok but the vitamin D was almost non-existent and B12 was very low. He prescribed a vitamin D supplement and hydroxocobalamin 1mg Vials and told me to have his nurse give it to me 1 per month. I had the first of these on Thursday afternoon and this morning (Saturday) I awoke as if re-born! I was so astounded by the fact that not only do I feel 20 years younger but I actually noticed that my feet did not have the extreme numbness that they did before. I have been going through some tough times the last couple of years with having to stop work because if the heart condition then my mother has vascular dementia and I have been flat out so the confusion, blurred vision, depression and stuff that I have been experiencing I have attributed to my circumstances but after a bit of reading about B12 I am feeling that perhaps there is more to it than just a diet related B12 deficiency. I had not heard of pernicious anemia until today and was wondering if you can give me some advice because from what I have read it seems that GPs are sometimes not on the front foot so to speak. Should I get another test or something considering the vitamin D relationship? Is the one vial per month sufficient considering the first one has produced such a mind blowing difference for me? It has cleared my head, my vision is no longer blurring out, I have done more cleaning and home maintenance today than I have been able to manage in the last month and I still at 8pm feel invincible even though I have not dozed off at all. Sorry to ask so much but it has been life altering!!

[wedgewood]

You wrote this one hour ago , stating that it was 8pm , so I’m assuming that you might be in the USA , not the UK , where the Pernicious Anaemia Society is based? Yes you are right , the medical profession here has very poor knowledge of B12 deficiency/ Pernicious Anaemia. . Pernicious Anaemia is the most common cause of vitamin B12 deficiency.. it is an auto-immune condition , which cannot be cured , but causes no harm if it is diagnosed early ,and the correct treatment given ( injections of vitamin B12 as often as is required )

Having P.A. means that you cannot absorb B12 from your food . B12 is only found in animal products -meat , fish , eggs and all dairy products..

There are other reasons for B12 deficiency— vegan or strict vegetarian diet .— The taking of PPI s over a long period which depletes stomach acid And some other prescription drugs ( google for information)

In the U.K. if P.A. is diagnosed or suspected , a loading dose of 6 injections of B12 is given over 2 weeks, and then every other day if there are neurological symptoms, until there is no improvement. You would need injections for life if you have P.A.

If neglected , irreversible damage to nerves can be caused .

Unfortunately, the test for PA. called the Intrinsic Factor Antibody test is very unreliable . I’ll send you a fact sheet which might be helpful .

Best wishes.

[danielcox5 in reply to wedgewood]

I saw the second message first but I am actually in Australia and it seems the knowledge level here may be worse! The doctor has prescribed one injection per month for three months then one injection every three months after that. From what I have read from locals here, there are very few who have had a satisfactory experience with a general practitioner and also, it seems that previously Hydroxocobalamin was available over the counter but now that is not the case. Its a bit confusing because I am reading some things that are a few years old stating that it is available OTC but I have asked two pharmacists who insist it is not.

[wedgewood in reply to danielcox5]

If I were you I would read at least one of the books that our Chairman and founder has written about Pernicious Anaemia. Go to Amazon and look up books by Martyn Hooper . Excellent knowledge.,

[Gambit62 Administrator in reply to danielcox5]

I am not based in Austrailia, but I am not aware that there had been any changes to the OTC status of B12 in Australia - though we have in the past had Australians on here who said they had a tough time getting pharmacists to recognise that it is OTC - and that was from years ago so it may just be that the pharmacists haven't checked properly rather than a change.

[Sk1ppy in reply to wedgewood]

Hi Wedgewood, This post struck a nerve with me and I would be delighted if you could also send me the fact sheet thank you.👍

[Nackapan]

Wonderful you had such a good response to your b12 Injection . Unusual if you are in the U S you got Hydroxocobalamin.

Getting your vitamin d levels up will help you too.

Just keep an eye on folate, iron, ferritin ,and thyroid.

I'm b12 deficient. It's not dietary.

Had a negative parietal cell antybody test. Not supposed to be used as a diagnostic tool for PA?? Usually the intrinsic factor antybody one is done. Usually done before injections are started as high levels of b12 in your blood can give a false positive. Wedgwood will explain the unreliability of the test.

So I've not got a diagnosis of PA but need Injections for life. Was told that at the start as such a low b12 level.

Tried tablets. Sublinguals and they dont do a thing.

Have enough injections to keep your symptoms at bay. Hope you continue to benefit. T C

[danielcox5 in reply to Nackapan]

Thanks for that. I’m in Australia by the way if that maybe explains the Hydroxocobalamin but the doc has put me on one monthly for 3 months then one every three months after that and from all the info I have looked at even here GPs are apparently either ill informed or restricted by “guidelines”. I have received Wedgewood’s message and have s good starting point for the treatment. I was totally blown away by the all-round effect the first injection had. I had no prior knowledge or experience with PA (had never heard of it) prior to two days ago snd considering what I have seen and read I really don’t understand why not especially considering the damage it can cause and the extremely adverse effects it can and does have on people's lives. Anyway it is great to be in this place where I can talk about it, ask questions and you good people are willing to offer a helping hand because, for whatever reason, the doctors don’t. After the nurse at his office gave me that first injection I actually said to the doc that “I could do that couldn’t I?” and he basically told me that was not allowed “because we need to keep track of it here” Anyway I am hoping that I don’t have too much permanent damage as that seems to be a common issue here. I have been complaining for over two years about the continuing numbness especially in my feet with barely any response or reaction from the doctor other than “I will refer you to a podiatrist. Again, thanks a lot for your support. D

[Bing67 in reply to danielcox5]

Hi

I am in Australia and recently recieved my loading doses which was by injection alternate days for 2 weeks then monthly.

Unfortunately my neurological symptoms came back after 2 days so restarted the loading doses.

I used the UK protocol to discuss with GP and as she only prescribes 3 vials at a time, I have also been purchasing online with no issue.

Chemist Warehouse and various others do OTC (with quick chat to pharmacist).

I am giving the injections myself though as my GP is happy with this, I also keep my GP informed.

I was struggling with large amounts of time of work and do not want to go back to that. I wish you well with talking to your GP.

A regular GP would definately help to manage your medication and health conditions.

Cheers

[danielcox5 in reply to Bing67]

Thanks heaps for that.

[Litatamon]

Daniel,

I did the same thing. I played everything off as stress of caring for my mom, who had dementia. And not fully recovering from sepsis. I too was very low vitamin d and b12.

You said your mother has vascular dementia. Please get her levels checked as soon as possible. And please don't rely on her doctor's words on the levels. Get a paper in hand.

Your mother's dementia might have absolutely nothing to do with pernicious anemia. I am not pedaling false hope. However while I was researching after my diagnosis two stories left me in tears. So everyone with a dementia diagnosis should be tested, just in case.

--------

Your vitamin d might not change much without a short term aggressive protocol. Short term because your numbers must be rechecked at three months as too much vitamin d can be detrimental to your health (heart). And even more care with testing and dosage for you, with your medical condition. I am sure your doctor is on top of these issues, simply checking.

All the best to you.

[danielcox5 in reply to Litatamon]

Thsnk you very much for the info

[wedgewood in reply to danielcox5]

If you take a vitamin D supplement , ALWAYS take it with Vitamin K , unless you take a blood-thinning medication . You can get a tablet that combines the two .

[Midnight_Voice]

We picked up a couple of sets of ampoules in March, in Airlie Beach, Queensland. Had to see the pharmacist, not an assistant; fair enough.

No prescription needed, no ID requested, even with our Pommie accents 😛

We had heard conflicting reports about needing prescriptions in Oz; could it vary by State/Territory?

[Martin_12]

I am also in Australia.

If you are very lucky and one B12 jab per month clears up all your symptoms related to B12 deficiency, and keeps them at bay, then you could continue with that regime. It is possible that some of your symptoms will improve briefly then return after a few days or weeks.

Some of the very broad range of symptoms of B12 deficiency:

pernicious-anaemia-society....

There are many others, e.g. heart palpitations and arrhythmias, voice problems, and immune system derangement.

Here is an Australian product information sheet for B12 from the TGA:

ebs.tga.gov.au/ebs/picmi/pi...

For neurological symptoms it suggests a jab every 2nd day for two weeks, then a jab every 2 months. For some people every 2 months is adequate, but some find they need jabs more frequently than every 2 months. Frequency should be adjusted according to symptoms, not according to total serum B12 tests.

I self inject or ask one of my daughters (both nurses) to inject for me. A tame GP in a local bulk billing GP practice does the jab quite willingly whenever I ask him.

I had no problems getting hydroxocobalamin (in packs of 3) from local pharmacies, but I now get it from the German pharmacies (that many on this forum use) in packs of 100. Cheaper (even including delivery costs) and much more convenient. I also think the Rotexmedica B12 Depot from might be better that the Australian made stuff. It is preserved in acetic acid which one article I have says is better than hydrochloric acid, the ampules are darkened glass which protects the B12 from light, it arrives with a very long expiry date, and the ampules break open more cleanly. I keep it a dark place or in the fridge during summer months.

I get syringes, needles, filter needles for drawing up the B12, and sharps containers from medshop.com.au or aimsmedical.com.au. Filter needles reduce the number of glass particles accumulating in your muscles.

researchgate.net/publicatio...

GPs don't have filter needles, so when I get a GP to do a jab I provide a filter needle (and when necessary show them how to use it!)

[danielcox5 in reply to Martin_12]

Thanks for the great information!

[Suzibelle]

Hi Daniel

I'm in Qld and have no problem buying the ampoules/syringes/needles/etc on line or occasionally from the chemist - it seems to depend on the chemist as to whether they will be difficult or not but B12 is not a scheduled article in Australia.

I got lucky with my GP who diagnosed and started treating me but another doctor at the practice started to interfere with my treatment regime (tried to put me back to one every 2 months when I asked to go to 1 per month) so that pushed me into self injection and I haven't looked back (although I still don't like doing the actual injection!). Follow the NICE guidelines to start with and then stretch out the intervals until you find what suits to manage your symptoms. Good luck!

[2561]

I had numb feet for the 1st 15 minutes of the day. Felt full but didnt look swollen. Gone after the shots. My diagnosing Dr didnt know to do the 30 daily shots before maintenance shots. As as result I take 5000 mcg under the tongue 14 days before my shot. You will know when your body "runs out". My head feels tired & my body has energy all while being tired. It like a brick wall.

Vicki2561