New here: Managing B12 dosage, "crashes" and antibiotics

[Benji76]

Hey folks. I'd be grateful for any insights here if anybody has the time...

I've lived with this health issue for almost a decade, without treatment. It has been called many things including IBS, Fibromyalgia, chronic fatigue and my personal favourite "some sort of mental health issue". My last GP struck the nail on the head when she explored the possibility of Pernicious Anaemia. The intrinsic factor test came up negative but she said this didn't rule out PA as test not fully reliable. She figured my b12 might be borderline and started me on oral doses. Made no difference to how I felt. She then said, she'd get advice, but thought injections were likely to be needed.

At this point I moved house 🏡 . Also changed doctors practice since the distance would be too great to blag it. New GP declined any possibility of PA and offered no alternative route to explore. I have found that the symptoms come and go in intensity, so can understand why someone might find me less believable at times. One day I "crashed" as I call it, became suddenly 90 years old, shaken, confused, exhausted. Walked to surgery to insist to be seen. Effort made me cry. Doctor who saw me scheduled a range of blood tests which, thankfully, picked up b12 as issue. Loading jabs started next day. Been topped up every 3 months since. Magic!

Except that it's not enough. Symptoms return within a month. It is so painful to experience, in contrast to feeling well. Super hard too, as a parent of a three year old. All those years I dragged myself along like that! Amazing, but really unnecessary.

Whilst docs seem happy to inject me every 3 months indefinitely, they still do not agree that I have Pernicious Anaemia and so will not talk to me about changing treatment frequency as per NICE guidelines (definitely got neurological symptoms). So I started self-injecting and found I needed to do this every month minimum. I'm not super comfortable with doing this but felt all other avenues are closed and my priority is managing my condition. I'm not up to anything else otherwise.

About 3 weeks ago I had to take a short course of antibiotics for an infected insect bite. I expect to feel rough on antibiotics, but I found that I "crashed" again. I read somewhere that when this happens you should start loading doses again. Conversation closed with GPs so opted to inject with 1ml every few days for a few weeks and hope that replicated what they did. A week after my last dose of this I crashed again. I am wondering what I'm getting wrong. Without being able to talk to a medical professional, it's hard to see my way out of the woods.

Now you know the story, I would like some pointers on the following please:

1. Has anyone had negative intrinsic factor tests, but been advised since they are clearly symptomatic and jabs work, diagnosis of PA can be given?

2. Does anyone else find their symptoms come and go in terms of what they are and their intensity?

3. Can anyone advise what comeback I might have on my really unhelpful GP (he happens to be the practice manager)?

4. How do I get docs to give me diagnosis of PA so I can start to treat it properly?

5. Does anyone know about the impact of anti biotics and how best to manage this?

6. I've watched the vids, but sometimes I bleed or bruise a bit after self-injecting (thigh). Can I be getting this wrong and limiting effectiveness of jabs?

Please offer any tips you have, share similar experiences if you have them. Feeling very alone with this. And a bit sad. X

[spacey1]

Hi

My symptoms come and go; stress, physical unwellness, busyness all seem to use up the B12 in my system quicker. I imagine antibiotics would have the same effect. I just inject as and when I need it. I've had a negative intrinsic factor test, so I'm 'labelled' B12 deficient, but not PA. I did get my surgery to agree to jabs every 8 weeks, but they won't do it any more often, and don't know that I SI in between.

A bruise or a dot of blood every now and then is really normal - sometimes you will hit a little vein but you won't hurt anything in your thighs. Really, don't worry, you will be injecting just fine!

[fbirder]

1. I’ve not had a test for IF antibodies, but I do have a diagnosis of PA. My haematologist told me I didn’t have it. So I asked him if what other cause could explain: low B12, positive parietal cell antibodies and metaplastic gastric atrophy. He grudgingly agreed to write PA in my notes.

2. If I don’t inject twice a week then they do come and go. It gets especially bad is I push myself too far.

3. I would write to him asking for more frequent injections as you wouldn’t want him responsible for you getting Sub-acute Combined Degeneration of the spinal Cord. Apparently a letter stays in your record. So you can sue the pants off him if you do end up with SACD.

4. If only there were a way.

5. Not sure about antibiotics. I know they can affect absorption, but that shouldn’t apply if you’re injecting.

6. If the needle passes through a small vein in the skin then you can get a small amount of bleeding. Google the Z-Track method of injecting.