Monthly B12 injections

[Margo]

I have monthly B12 injections for the past 5 years, presuming it is to do with the fact that I have no thyroid which was removed in 2003 (cancer). I didn't bother to ask questions, as I hear from others how hard it is to get B12 injections, and thought maybe it was a good thing..

Whenever I have my injection I never feel any different. I only begun to think about this when a friend of mine had a B12 injections privately and came out of the surgery skipping, full of vim and vigour.....I asked my friend if she had Methyl and she said yes, and I know for a fact my injection is Hydroxy.

Then I found this article which I have kept in a file which I believe I got from the HU site :-

'You are being connected! You need to take the active form of B12 Methylcobalamin, which is reserved for the private sector. No NHS doctor will cough up this information. They may go as far as giving you the inactive form, Hydroxycobalamin, which will not work on many people.

I would welcome any opinions on this please?

[shaws]

Do you have a B12 deficiency or Pernicious Anaemia. If you have P.A. the usual NHS is a blood test every three months. I'd check with the Pernicious Anaemia forum and they will explain in more detail. If newly diagnosed then the injections will be more frequent until you're at a good level.

[Margo in reply to shaws]

I should find out shaws whether I have P.A. or B12 deficiency, I just have never asked which is unlike me, and nobody has said.

Thank you for your reply.

[shaws in reply to Margo]

I doubt doctors are aware of the difference between low B12 in the blood which could be due to our diet and is that alone or is it Pernicious Anaemia. The latter is a very serious condition if not treated properly - we must be diagnosed first and don't supplement until you find out. I had (this was a long time ago) a nuclear test which confirmed my diagnosis.

Well, I quite understand why people don't think of enquiring from the GP as we assume that they must be aware of all the consequences of autoimmune conditions but we discover that this isn't the case.

I am also aware that PA can cause stomach changes which can have very serious consequences.

[Margo in reply to shaws]

I have only just got it together with my medication and no thyroid shaws . Since October last year I actually feel well on TR Mann, it has only taken 16 years to find the right medication after my thyroidectomy. However, that all changes when I run out/expires in March 2022, but I shall worry about that nearer the time. Prior to that, finding out about P.A./B.12/Parathyroid hormone/calcium....has been hard to grasp. I am now on a mission to try and understand the B.12 question.

I can all the boxes of symptoms of P.A.:-

Balance Problems. ...

Dizziness/Feeling Faint.

Numbness/Tingling/Pins and Needles. ...

Vertigo. ...

Tinnitus. ...

Sensory Impairment.

but these ailments could also be due to no thyroid/low thyroid.

I have another injections due tomorrow morning and hoping to find out exactly why I am having them.

[shaws in reply to Margo]

I have hypo, alopecia areata, pernicious anaemia and vitiligo. P.A. diagnosed by a good doctor years ago, who had taken a blood test and at my next consultation he was anxious and he said 'your blood test shows something unfamiliar' and I said my mother has P.A. This was then tested properly at my next blood test and that did confirm P.A.

[Margo in reply to shaws]

Did the doctor give you B12 injections straight away shaws ?

[Beverleyb]

Hi Margo, you have just answered what I have often wondered why some people feel great after B12 injection ,I too had injections few years ago and didn’t feel any different.

[shaws in reply to Beverleyb]

I would get your B12 tested again. Both B12 and Vit D are prohormones and have essential work in our bodies.

ncbi.nlm.nih.gov/pubmed/156...

I don't feel any difference after B12 injections but my mother died through her GP withdrawing B12 injections which - at that time - both my sister and I thought that was good. Little did we know what hell was ahead.

[Beverleyb in reply to shaws]

Thank you shaws..

[Margo in reply to shaws]

My last B 12 blood test a year ago read:-

1287 ng/L 120 - 900

Not sure if that means much, as it is the B12 getting into the cells as I understand things.

Thank you shaws

[shaws in reply to Margo]

That sounds as if you're sufficient. Madonna probably hasn't a problem with her thyroid gland and as they pay large sums to doctors, they will expect some advantage if taking supplements.

Due to an excellent doctor diagnosing my (undiagnosed) B12 deficiency )and had no symptoms I found I actually had Pernicious Anaemia which could have gone on for years without being diagnosed. As was the diagnosis of hypo - which I had to diagnose myself (TSH of 100) and told three days earlier I had no problems whatsoever.

I have just read an article by Dr Childs re the importance of zinc which is necessary for the conversion of T4 into T3 plus hair problems.

I am going to put up a fresh post about this. Excerpt:

"A deficiency in ANY of these may cause limited thyroid function leading to a reduced quality of life and hypothyroid-like symptoms.

Does that mean you should just blindly take these nutrients?

The answer to that is obviously no, and taking that approach may lead to problems...

Instead, my goal here is to walk you through how to properly and safely use targeted supplements to help naturally improve your thyroid.

The 9 nutrients below have been hand-picked by me because I think they are the MOST beneficial for thyroid patients. This is based on my personal experience and in treating over 1,000 patients.

restartmed.com/zinc-thyroid/

[Margo in reply to shaws]

Thank you so much shaws

[waveylines in reply to Margo]

Margo & Shaws once a b12 deficiency has been diagnosed and injections prescribed there should be no further testing of B12 -NHS guidelines. It a myth this testing of b12 when on injections as it leads to false conclusions like you are now sufficient & need no more. This is incorrect as people in need of injections seem to need a saturation level of b12 for good uptake....as yet the reason/science behind this is unknown.

Also your ongoing symptoms would show you are experiencing neurological symptoms and as such you require alternate days of b12 injections as per the guidelines. This should continue until no further improvement -in many cases thats months or years.

You can find the guidelines on the the PA Society -would be worth showing your GP them when requesting.

I inject subcut I do not get a sudden improvement -seems to take several hours before its in my system so I do it before bed!! The improvement I experience is a calming of tremors in my legs & arms, less tired & vision improvement. Whats important is that you are gradually improving & not experiencing a drop back between injections.

[Margo in reply to Beverleyb]

I have another friend who is on this site, and she too felt no different after her B12 injection on the NHS Beverleyb . Bizarre isn't it!

It seems the "stars" i.e. Madonna and the likes have these injections to give them a bit of oomph. It was notable that my friend looked different, more energy, less anxiety and she looked much younger......it was quite extraordinary what one injection could do. She STILL feels fantastic, and says it has changed her life, she can drink without a hangover.....!!

[Beverleyb in reply to Margo]

Yes , I’ve often read celebrities have had b12 injections now I realise why....oh to not have a hangover , I only have odd glass of wine now...

[Margo in reply to Beverleyb]

I don't really suffer hangovers, but don't drink more that 2 very occasionally 3 glasses of wine, mostly weekends. I am wondering if it also due to the fact I am better medicated. Since being on TR Mann I feel SO much better, perhaps even normal (whatever that is!!). Which is why I would like to understand this B12 thing, and gauge whether I need it or not, or if it is a good thing for me.

All of that said, I know that I feel even better when I drink nothing at all, alcohol doesn't do me any favours, my sleep is messed up weird dreams (I keep dreaming about Simon Cowell and couldn't fancy him baked fried or poached...?!!)....but not a hangover. I am on a mission to cut back, tried dry January and failed on the 2nd day, just hoping I am not too addicted,.......mind you I try to limit just to weekends, but January the weekend was starting on Wednesday!!!

Are you still feeling ok Beverleyb ?

Isn't that bonkers to have an injection just to stave off a hangover....

[Beverleyb in reply to Margo]

Thanks for the giggle today! really helped..I have my two adult children living back home , I don’t think hubby will ever be the same since his breakdown , we have my sons 3 small children visit every other day so I’m struggling with all this ....if I’m feeling under par I put it down to family problems also having my bloods tested regularly...Are you on a new Thyroid treatment?

[Margo in reply to Beverleyb]

So glad you got a giggle out of me this morning Beverleyb , we have to find the laughs in life....

I am sorry that you are struggling, it is an awful lot to deal with. I agree with all that on your plate I would think it is that that makes you feel under par.

YES, I struggled on with Nature-throid and was very poorly which I now realise made me hypothyroid. All manner of ailments and I looked awful.

I read on here about some people trying Thai thyroid medications, which I really didn't want to do, particularly as I still had a large stash of Naturethroid to use. I took 2 tablets and for a couple of days felt ok. Then suddenly I had crippling vertigo and felt terrible, iIcarried on like this struggling. Then suddenly John my fiancé suggested splitting the dose, and that was the key. Since October I have been doing fine a tablet a.m. and another p.m., I am now the best ever in my whole life, I actually feel normal (whatever that is).

I hope things get better for you Bev.

[Beverleyb in reply to Margo]

Oh wow that is great to hear that you feel better,so pleased for you. Long may it last x

[Margo in reply to Beverleyb]

Thank you Bev x

[shaws in reply to Margo]

Its a wonderful feeling when your body/symptoms responds to the correct dose and the correct medications.

[shaws in reply to Margo]

This is an excerpt from the following:-

"Abstract

Cobalamin deficiency may cause cognitive deficits and even dementia. In Alzheimer's disease, the most frequent cause of dementia in elderly persons, low serum levels of vitamin B12, may be misleading. The aim of this work was to characterize the cognitive pattern of B12 deficiency and to compare it with that of Alzheimer's disease. Nineteen patients with low levels of vitamin B12 were neuropsychologically evaluated before treatment and a year later. Results were compared with those of 10 healthy control subjects. Final results suggest that there is a different pattern in both diseases. Twelve elderly patients with dementia improved with treatment. Seven elderly demented patients did not improve; they deteriorated after 1 year although their levels of cobalamin were normal. Analysis of the initial evaluation showed that the 2 groups of patients had a different neuropsychological profile. The group that improved had initially more psychotic problems and more deficits in concentration, visuospatial performance, and executive functions. They did not show language problems and ideomotor apraxia, which were present in the second group. Their memory pattern was also different. These findings suggest that cobalamin deficiency may cause a reversible dementia in elderly patients. This dementia may be differentiated from that of Alzheimer's disease by a thorough neuropsychological evaluation.

[Margo in reply to shaws]

Very interesting shaws , thank you for posting.

[Gambit62]

The quote about methyl isn't supported by scientific evidence. The process for transferring B12 from blood to cells should make the form that is in your blood totally irrelevant as it involves stripping methyl/hydoxy/cyano/adenosyl element and then the B12 gets recombined with methyl or adenosyl element inside the cell depending on which process it is needed for.

Having said that some people do find that they respond differently to different forms of B12 but reasons aren't understood ... but for most people it is irrelevant.

[BadHare in reply to Gambit62]

I inject hydroxocobalamin, but followed some links via my (now closed) B12 share group regarding the source & vagaries if injecting methylcobalanin. There was a chart, which I don’t have access to now, which explained which form of B22 was best for certain conditions. I’m sure neuropathic pain responded better to methylcobalanim. This is available in the UK but expensive & seemingly more complicated to use as it’s dry so needs to be mixed with a saline solution for injecting. I took sublingual methylcobalanin with success prior to injecting, though find hydroxocobalamin far more effective with regard to thyroid hormone efficacy, even when do a quick subcutaneous rather than intramuscular injection.

[Margo in reply to BadHare]

Thank you BadHare

[Margo]

Thank you Gambit62

[BadHare]

We’re you affected by radiotherapy treatment for your cancer, My friend developed PA as soon as she had RAI for Graves.

[Margo in reply to BadHare]

I had Radio Active Iodine BadHare - maybe, can't remember. Thank you

[BadHare in reply to Margo]

There could be an association. My friend’s doctors gave her no warning regarding the potential side effects of this treatment. I’m sorry you’re affected too.