Still experiencing Symptoms

[Quinny99]

Hi, as some of you know that i had my 6 doses of B12 injections in August. Then I had my first injection since then in November... I’ve noticed a pattern, I’m okay for about a month then after that, I start to deteriorate, and I’m in pain and extremely tired for two months, desperately waiting for my next injection. I’ve been to the doctors about my symptoms, I’ve gotten nowhere with this, nothing’s getting better. They’re thinking that I am overreacting and it’s my anxiety.

I don’t know anymore. I feel like I’m losing my mind, and I’m starting to lose hope. I still don’t know what’s caused this, and it seems like none of the doctors are interested. Is there any way that I can stop the pains in my hands and feet and stop me from feeling so tired all the time?

[Marz]

It could be you need injections more often. Also do you know your VitD level ?

[Quinny99 in reply to Marz]

I live in the UK, so many people have low vitamin D levels😂 we rarely get the sun here😂 I know that they are low and I take supplements for it

[Hidden]

Do you know your folate level too ? You need the two together for the B12 to work.

I tested negative for PA but I can still only go 8 weeks max between Injections before I begin to sink. I have Fibromylagia too but I can tell the difference in the feeling. It's very subtle, it'd be hard to describe to a doctor so I think they'd probably say I'm imagining it, or reliant on the injection.

Have you thought of self injecting ? It's cheap, works out about £1 per injection and you have total control over it.

I started out with alternate day injections then allowed 2 days between , then 3. It took a lot more than 6 injections before the symptoms improved.

[Quinny99 in reply to Hidden]

So while I found out I had low B12, the doctors prescribed me 3 iron tablets a day, for a month. I didn’t get told to go get a blood test after I had everything done and taken everything (B12 &Iron) to see if everything’s okay. I took the iron tablets because my ferritin levels were low, and not my actual iron. I eventually got a blood test done, and went back for my injection, my nurse told me that i should be taking b12, iron and vitamin D supplements. I didn’t know any of this, as I went to the doctors quite a few times, and no one told me that I should be taking supplements. I was also thinking, if my stomach can’t absorb B12, then why am I being told to take the B12 supplements? Yet I have to have these injections for the rest of my life? I’m so confused.

[Hidden in reply to Quinny99]

I'm not surprised you're confused with the muddled medical information.

Blood tests after supplementing will always show higher levels. Doesn't mean your body can use it all though.

And you're right, if you have P.A. taking B12 by mouth is nonsense and if a dr or nurse doesn't know that, what else don't they know?

After my third misdiagnosis at the GPs I gave up going. Just glad none of them are vets.

I really hope you can get it sorted.

[lilly60]

I have been having B12 for 8 years now every 12 weeks I feel ok!!!! For about 4 weeks then I sink again

Went to see the doctor on Fri because not due my next until 11th January so will suffer over Christmas but no is the answer

I also have Lupus but you can tell the difference in how you feel and pain and fatigue

I do have sympathy for you hope you find an answer

I do not like the sound of self injections my Specialist warned me against them you can over load x

Hope you have a very merry Christmas 🎄

[Quinny99 in reply to lilly60]

Thank you so much for you reply, and to be honest I don’t think I can self inject as i am afraid of needles anyway!😂 I’m just confused with a lot of things, and none of the doctors are interested in helping me. Like what can I do now?!

Also,

Merry christmas to you too🎄

[Howard39 in reply to lilly60]

Hi

You cannot overload on b12 injections. It’s important people aren’t scared unnecessarily.

The only way you can die from it is by drowning in a bath of b12!!

If you take too much your pee turns pink and you excrete it. I self injection daily as my levels were nil and after 15 years I’ve only just exceeded the top of the range. I am symptom free. My gp gives me my needles to help.

Yes it’s not cheap but I have a life.

See wwwdrmyhill.co.uk and on the home page in the top right hand corner type b12. She’s 4000 or so patients on it.

[jarlethblue in reply to Howard39]

Howard....thanks so much for this information.....can you tell me how long before you felt a decent improvement on the self injections? I began self injecting every second day three weeks ago and move that to daily a week ago......some improvement but not as much as I hoped for considering how often i am doing it. Thanks. J

[Howard39 in reply to jarlethblue]

Hi there,

I was juggling thyroid meds and a gluten free diet as well as adding in vitamins and magnesium injections so it’s hard to be spot on. I’d say 5 months for most neurological symptoms to improve. I was on 1 ml injections and felt more energy after 4 months.

When I reduced the dose to 0.5 ml I definitely noticed a difference. More tired.

Also I was lucky I got to try metho. I can only speak personally but I found that amazing. Pity my specialist could not source it continually.

However everyone is different and it depends on how long you have suffered for. I’d say my overall vitamins were ok except b12 d3 and magnesium. They were really awful and my t3 thyroid levels were nil together with dhea.

So all together 3 years to fix everything but I was lucky to have a fab specialist and I just about hung on to my job.

That’s not to say I’ve not had to review areas since.

It’s like spinning plates.

Good luck and please do ask if you need anything.

[Hidden in reply to Howard39]

I'm another fan of dr Myhill,msensible woman and knowledgeable.

If only all drs were.......

[Howard39 in reply to Hidden]

Hi

Yes definitely the best I know. Also she does so much research she updates her web pages and patients all the time.