A little help pls :)

[Lukeygirl1]

Hi everyone, just wondering if someone could tell me if im on track.

Diagnosised with low levels of b12 (130) had monthy injection for 6 monthly, changed to 3 monthly. Started to feel 'bad' again around two month mark, doctor refused any help, had to wait another month. Ok. He ordered b12 serum right after my injection 1400, got flagged but normal for 1000mcg of cobalamin. Another three months my b12 is 200, got flagged for being too low. Im being treated for a nutritional deficiency but i eat well, dont drink, dont take drugs, dont smoke, b12 tablets dont work.

Heres my working theory: the quick drop inducates im not storing b12, due to injections, im bypassing things such as nutritional b12 deficiency and IF problems. So im thinking that i am unable to convert the cobalamin.

Im going to move on to a transdermal oil containing methyl/aden.

My research indicates that i should also watch my potassium and folate.

I wish my doctor cared even a little about this.

Symptoms: swollen tongue, teeth grinding, migranes, headaches,sharp pain in my eyes, problems swallowing, shortness of breath, memory loss, problems with findi g words, fine motors skill loss, loss of balance, nerve pain, pins and needles, torn tendons, muscle cramps, burning stomach, swelling under ribs, vomiting, diarrhoea, heart beating like its coming out of my chest, bells palsy, severe depression, exhaustion, do small jobs completely worn out and it goes on. I used to be really fit and happy, i dont think living like this is normal. Im sure ive forgotten some symptoms but i did get alot of relief after a few months of injections, started to feel good again, didnt breath like an asthmatic anymore, got my mind back, it was great. Now im going backwards.

Does anyone else self treat? What can i get my doctor to do to help?

By the way i live in australia. Thanks!

[fbirder]

Not t sure what the guidelines are in Oz. Here in the UK there are several guidelines of relevance. The National Institute for health and Clinical Excellence (NICE) have these guidelines for the management of B12 deficiency - cks.nice.org.uk/anaemia-b12... - which say:

"

Assessing B12 deficiency

How should I investigate a person with vitamin B12 deficiency anaemia in primary care?

Determine whether there is an underlying cause for the serum vitamin B12 deficiency (for example pernicious anaemia), by checking for serum anti-intrinsic factor antibodies."

So the first thing your doctor needs to do is check for anti-IF antibodies. I'm not sure why you're 'bypassing such things as nutritional B12 deficiency and IF problems’ as the most common cause of B12 deficiency in non-vegans is Pernicious Anaemia caused by lack of IF.

Secondly, several of your symptoms suggest neurological involvement. In the UK the dosing guidelines (in the British National Formulary) say the people with neurological involvement should have a series of loading doses (1000ug every other day) until symptoms improve. Followed by maintaintence doses of 1000ug every two months.

You need to take this very seriously. Some of your symptoms are those of Sub-acute Combined Degeneration of the Spinal Cord. If this is the case, and it is caused by B12 deficiency, then they will not improve without treatment. Indeed, they will continue to worsen.

Here's a document by the Pernicious Anaemia Society on the topic - pernicious-anaemia-society.... - I recommend you contact them if you have any problems getting your treatment sorted.

[Lisahelen in reply to fbirder]

Good info as usual frank, the annoying thing is, if we can see what is probably wrong why the .... cant the drs! Lol

[fbirder in reply to Lisahelen]

I think they just don't know enough about it. I'll bet they have no more than 30 minutes of B12 deficiency in their 5 years of learning.

My GP (and the rest of the practice) had a talk on B12 last year. Plus I gave him a copy of Martyn's new book, which he read and is passing round the rest of the practice. So I'm not too suprised that he's one of the better ones.

[Lukeygirl1 in reply to Lisahelen]

The last nurse i dealt with for a b12 injection told me to put on my big girl pants and deal with the symptoms and there are children with cancer that have it worse then me. Thats true but i just want to be well again.

[Lukeygirl1 in reply to fbirder]

Thank you, im only just realising how serious this can be. The information im sharing, outside of the serum b12 test and the injections ive had, has come from me reseaching and trying to understand. My doctor is not interested in why. I think thats kind of crazy. I appreciate all your help😊

[BethattheBeach]

facebook.com/groups/6536867...

lukeygirl, I have pasted the link to the Australian FB support group. You will find information relevant to Oz there.

At my latest Dr app't I was told I could have injections whenever I wish - just make app't with the nurse. This was after 9 months of sorting out treatment - I kept a diary of symptoms and when they returned after injections.

You need an enlightened doctor!

[Lukeygirl1 in reply to BethattheBeach]

Thank you so much for the link. I was thinking of finding another doctor but its regional australia, i dont think that will change anything. Maybe i can educate the doctor ive got😊

[BethattheBeach in reply to Lukeygirl1]

It did take me months to begin to understand what the diagnosis meant. It would be best if you could ask your doctor to thoroughly investigate your absorption issues. If that is not possible then ask for a referral to a haematologist and request gastric Parietal cell Antibody and Intrinsic Factor Antibody tests. I also had an endoscopy with a biopsy to confirm diagnosis and damage already done.

This way you will have a diagnosis which is credible. This week I took my paperwork to a new Dr - I'm on an Australian island for a holiday - and he readily gave me an injection. He expressed satisfaction that I'd had a proper workup for the diagnosis. I did not have to argue - just a professional discussion about the implications, a jab and a goodbye!

Imagine having to fight every time you see a new doctor? Besides you need the information to enable you to treat yourself properly into the future.

If you wish to educate the doctor I suggest you learn as much as possible. Take your journal notes of symptoms (this convinced my Dr to increase frequency of the jabs) and be ready to argue your case - in the calmest voice possible. Take someone who knows you well so they can explain your symptoms are not your usual self. My husband was able to confirm that I am not normally clumsy etc. It is up to you but you will be awesome once you get your head around the issue.

Good luck!

[Lukeygirl1 in reply to BethattheBeach]

Thanks for that. I see that you're the second closest person to me by distance, you must be holidaying on a queensland island! Hope the weather stays good for you😊

[BethattheBeach in reply to Lukeygirl1]

Norfolk Island, actually! We have just experienced a reasonably strong low system right over the island. Lots of rain which was desperately needed and some strong wind during the last 12 hours. Now some sunshine is just peeking through the clouds so back to beach weather tomorrow.

[Gambit62 Administrator]

As beth suggests keeping a diary of when and how the symptoms return is a good idea and gives something concrete to look at.

In Australia I believe you can actually get B12 shots over the counter, so possible to treat yourself.

Potassium is generally an issue if you have anaemia and in the early stages of B12 treatment - which you are through by now - but still worth eating a banana a day.

Folate and B12 tend to be used together for a lot of processes, as well as folate being needed to absorb B12 - if possible try to get it in your diet.

There are numerous absorption problems that can lead to a B12 deficiency - including gastric surgery affecting the ileum (which is where 99% of B12 is absorbed), Pernicious anaemia (autoimmune condition in which the body either attacks the cells that absorb B12 or destroys the binding agent that enables to B12 to be absorbed in the ileum - known as intrinsic factor (IF)), lowering of stomach acidity as you get older, and drug interactions - ironically including manydrugs that are used to treat warning signs that a deficiency is occuring.

The tests for pernicious anaemia are even more problematic than the B12 serum test so can be done several times before you get a confirmation ...

To be honest I think you could drive yourself mad trying to get to the root of what the problem is and as the treatment is the same not sure it is worth it - which seems to be where you are - that is a personal feeling on my part. In theory if it was a drug interaction then stopping using the drug could make the problem go away ... but given that many of the interactions are treating symptoms that could be B12 ...

Under normal circumstances the body is really good at storing and recycling B12 but the recycling mechanism depends on the liver releasing B12 back into the ileum in bile so if there is an absorption problem in the ileum then you aren't going to be storing B12 - which is why the treatment is for life.

In theory you can flood the gut and rely on enough getting through from the 1% but that's nigh on impossible with dietary B12 and doesn't necessarily work with high dose B12.

The low levels in serum is indicative that your kidneys are doing a good job of removing B12 from your blood, meaning that you need it more frequently than the 3 months that seems to have become a treatment norm in many countries - though nobody seems to be able to trot out some good scientific evidence for this being okay - and many people seem to have problems with it for various reason .... so in answer to your questions - lots of people self medicate.

I actually find that nasal sprays work well for me - but if you find the oil works well then stick with that - but it's just another possibility.

So, basically you are thinking along the right tracks - hope the link that Beth gave you is useful for support closer to home.

You could try giving your GP 'Could it Be B12?' and seeing if they are open to educating themselves. Unfortunately B12 is 'just a vitamin' and generally isn't something that is included in medical syllabuses. There are a lot of myths around it - like its a form of anaemia (no, anaemia is an effect) ... and that having high blood levels can be a problem. My GP was very caring but totally useless when it came to B12 ... and totally dismissed the idea that my anxiety and depression were being affected by my B12 because I was being 'treated' for it ... and it was being given a standard test for depression and realising that anyone with B12D would score high on it even if they weren't depressed that was the final nail that had me treating myself. It isn't a decision that I have ever regretted ... and it has given me the freedom to experiment with what really works for me.

[Lukeygirl1 in reply to Gambit62]

Thank you. Its a real boost to know others like yourself are confident to seach for and find answers to regain your health. I will be following your example😊

[Lukeygirl1 in reply to Gambit62]

Can ask another questions, as all my symptoms have been attributed to several different things, i didnt even know what to report as a problem. Has anyone else had problems forming a fist or holding things, i have tennis elbow, just from doing ordinary things, both my achilles tendions have scar tissue from partial tears and i cant run anymore, the spastic cramps that my legs cant pull out of. Does b12 even have anything to do with these things. And i have white spots like bits of me cant tan anymore. Like a said i whinge alot😂

[Lisahelen in reply to Lukeygirl1]

Well if its not connected ive certainly got another problem then!!!! Lol

Ive had loads of 'unexplained' muscle aches and even tears. Achilles one hurt like hell and one mid calf really was loud when it tore. I went to a&e because i thought i had broken a bone on that occasion. Ironically both in my right leg. My right elbow often feels like the bones are rubbing against each other and both hands get unexplained pins and needles and lack of grip ie. Difficulty holding a sewing needle.

This was pre diagnosis which isnt being correctly treated by gp. I self treat using tablets, spray and patches which do help but havent made all my previous symptoms go away it has to be said, but i did have all them for about four years prior to diagnosis. unfortunately my gp will only deal with my highish blood pressure and refuses to consider the b12 or lack of it as even a possibility to my many b12 d symptoms!

I fully expect to soon be using amazon de in the near future and then plucking up the courage to do my first injection.

See, i can whinge too! Lol. Its all part of the condition. Lolololol

[Lukeygirl1 in reply to Lisahelen]

Thank you for sharing, i have never suffered from tendon problems before this. Now im just getting determined to find my way back to health!!

[Gambit62 Administrator in reply to Lukeygirl1]

All the problems you mention sound as if they could be B12 and aren't unusual.

I'm having a few problems with my right hand at the moment - gripping can be quite painful - not sure whether that is carpel or something going on in the neck ... and also not sure if it is B12 related - something that I'd associate with water retention during menstral cycle aggrevating in the past but my periods stopped a few months ago so there is always the possibility that there is something else going on - though wrist posture does help a lot ... may just be one of the delights of the menopause for me

The spots also sound like they could be B12 ...

And for me finding that my ankles are painful and stiff is a sign that I need to take some B12.

[Lukeygirl1 in reply to Gambit62]

Omg, my ankles do the same thing and i hobble, im 43 and used to be quite fit. I cant believe the lack of help available

[deniseinmilden]

Definitely sounds like you need B12 more often. Thousands of people around the world self inject.

I suggest you also read through previous posts for more information as there's lots here for you.

Best wishes for feeling well again soon!

[rockinHippy]

My cousin in law is in Oz & going through the process of diagnosis now. We realised when she came to stay with us early in the year that we had a lot of medical problems in common & so I've been sharing & bookmarking stuff for her

I'm trying to remember the name of the hospital that your guidelines are set by, I'm pretty sure I book marked it for her, if I can find it I will post again" but I do know that you can buy B12 over the counter for self injection in Australia & needles etc & even help from the pharmacist is easy to find too & it's cheap - if your doctor really won't help you & you already know B12 is safe for you & works, then by pass them & have a word with a pharmacist about getting supplies for SI

Good luck

[Lukeygirl1 in reply to rockinHippy]

Thank you, i appreciate your help 😊