B12 deficiency treatment

[Cheekycow8]

Hello, I have been deficient for over 5 years I believe, at the least. My main symptoms are burning and weak muscles (can't even dress my child!!) And I cant breathe, it feels like my chest just doesn't open enough for a proper breath , and im also breathless on moving around etc. A month ago I started injections for b12, im still struggling massively with both of these symptoms. I dont know if its too early in treatment to see any improvement or if I should be looking for something else? Looking for advice from people who have been through this i guess, thanks for any help

[Nackapan]

Always best to see your doctor and get full bloods done.

Include thyroid and iron panel.

Meanwhile b12 will help you whatever. List your symptoms and get things ruled out or in!

Get referred to specialist too if needed as everything I'd do slow you need to get into the system.

[Cheekycow8 in reply to Nackapan]

B12 and folic acid were the only things to come back low. B12 at 171 and folic acid at 7. Both just above the range for my area but my doctor is treating anyway as my symptoms match that of b12 deficiency. My thyroid and iron tests came back as normal.

I have breathlessness, burning arm and leg muscles when trying to use them. Fatigue. Brain fog. Nerve pain. Restless legs. Irregular and painful periods. Headaches. Tinnitus and dizziness. Heart palpitations. Ibs like symptoms. Just generally feeling like im double my age and heading to the grave tbh.

As I said before, ive been on injections and folic acid every other day for a month now, but the breathing and muscle weakness is still a big issue for me. Is this likely to take longer to heal or improve from other peoples experiences?

Thanks for reading

[Nackapan in reply to Cheekycow8]

Was your ferritin okay?

It does take time to see improvrments. Some get worse before any improvements.

I've had the above and more. Only bresthless at the start and occasionally . Have you seen a neurologist?

Did you have thd intrinsic antybody test? It picks uk 50% of thises with PA.

Treatment the same.

It is early days. Keeo a diary. Was your vit d tested ? And any other vits or minerals.

I hope things start tk change soon for you.

[Cheekycow8 in reply to Nackapan]

No neurologist, no intrinsic antibody test. I got injections after going to the doctors for 2 years and being fobbed off with the pill and an inhalor. When I asked what about the rest of the problems he asked what I was talking about!! So I got my results and went to a different doctor, who said they were low and we could do a trial to see what happens.

[Nackapan in reply to Cheekycow8]

I didnt get a a IFA tst either .

Also had been a few times to Gps afer about 7 years of not needing to.

Falls vision down fatigue. No blood tests at all.

Ha to wait for a dramatic collapse and virtigo . Then got bloods done!! Alot of time lost. I'd been through A and E as well as so many neuro symptoms. Grateful for brain CT. Ungrateful to be told I was having an anxiety attack on discharge. grrr. Had to crawl as coukd walk. Totally ignored lol in hindsight. I remember feeling more concerned about washing my hands .

[waveylines in reply to Cheekycow8]

It does take time. You could always try daily if you feel there is no improvement. Thats what I did which really helped.

[Cheekycow8 in reply to waveylines]

I was wondering this, as I feel a lot better on injection day, start feeling poorly again on the day in-between and feel rubbish come the actual day. It doesnt help the breathing or muscles , but my anxiety goes way down. Makes it so much harder to do the injection as well lol

[waveylines in reply to Cheekycow8]

Sounds like you need daily then. You could trial this and see if it helps. You excrete out what you dont need.

[Vps1980 in reply to Cheekycow8]

What thyroid tests did they do? Your symptoms are so similar to mine xx

[Cheekycow8 in reply to Vps1980]

It was the plasma tsh level I think?

[Vps1980 in reply to Cheekycow8]

Anxiety has been ten times worse for me since starting injections grrrrr

[Narwhal10]

Hi Cheeky (love the name by the way)

Sorry to hear you aren’t well and how it impacts your life. This is a link to b12 info and how ferritin and folate must be monitored and treated.

b12deficiency.info/media/10...

So the results may look NORMAL but they aren’t OPTIMAL. Wishing you better soon. X

[Parksy]

Did they check your vitamin d levels as that can cause some of those symptoms. Also if you are b12 deficient sometimes another autoimmune disorder accompanies like rheumatoid arthritis maybe because of the pain. Maybe ask them to do your inflammatory markers.

[NJPoet in reply to Parksy]

I also have low Vit D (5.1) along with low B12. I was not aware that vitamin D deficiency could cause such symptoms. Is the recovery time similar with vitamin D?

[Cheekycow8 in reply to Parksy]

Thank you, I will be heading back after another 2 months if nothing improves, and I will ask them to check these.

[Showgem]

Are you taking vit d supplements now as your level and is extremely low?

[Cheekycow8 in reply to Showgem]

I dont actually know my vit d levels, I would have to assume they are low living in sunny old England though lol

[Kezdez]

A few years ago when my vitamin d was at 7 I felt like I might be dying. I had breathlessness and muscle weakness plus extreme fatigue, numbness, bone pain and my muscles used to cramp all the time. Join a vitamin d group for advice. You need a daily dose of vitamin d3 ( with cofactors) and a group will be able to advise you on how much to take. The amount the NHS recommends is pitiful and you need a lot more. Hope you are feeling better soon.

[Cheekycow8 in reply to Kezdez]

I was looking into this, i will join the group for more advice

[Nackapan in reply to Cheekycow8]

If vita.in d is low your go should prescribe loading doses . I had that . I still need 25ug maintenance daily which is above the recommended doses in the wi terminal of 10ug. This us to keep levels at a modest 73

Grassroots is a helpful website too

Vit K2 mark 7 is recommended by some to have with it. You need to take vit d with your fattest meal. Some come in oil. Sone ate combi ed with vit d.

[waveylines in reply to Kezdez]

You actually need to be tested at your GPs for vit D. If its low the GP will offer your a course of vit D treatment. The stength of the capsules and duration of time will be decided by what you blood test result was. However I must say the range once again is wide and the nhs yet again lets matters get really quite serious before they treat. You need to be somewhere between 80-100. To check is a simple blood test. Too low vit D long term can cause a problem with your bones as you are unable to absorb calcium. The body compensates for this by releasing calcium from your bones instead causing weakness and eventually a bone breakage which is what happened to me. So its important to get your vit D level checked.

Symptoms of low vit D are fatigue, non restorative sleep, aching, generalised weakness.

However you have a known low B12 and that is important to keep treating. You need to check your folate level and you may benifit from a low bcomplex whilst you are trying to heal. People differ on whether this is needed but some people find it helpful. Sadly it does take time to recover so there are no quick fixes.

[Bellabab]

I have been injecting every other day for 8 months and the tiredness and many other symptoms have slowly declined. They took a long time to develop and they take a long time to go. I suspect I will need to continue with this self treatment for perhaps another year before spreading the injections slowly further apart. I expect the maintenance level to be once a month.

[Cheekycow8 in reply to Bellabab]

I think its worrying me because its taking so long to feel anything much. Other people seem to feel better after the initial 6 loading doses, but other than a slight uptick in energy after the third one, ive been back to the same since. I suspect I've had it a long long time though, ive been diagnosed with ibs, menieres diseases ( which causes dizziness and tinnitus) anxiety and depression through the roof and been on many meds and therapy sessions for that over the years) All started appearing after I had my first daughter 15 years ago 😢

So I wonder just how long it might be before I do feel better, if im likely to feel better after all this time 😬

[Nackapan in reply to Cheekycow8]

It takes time. Meniers does improve but slowly. I've that or similar vestibular disturbance. Its a k own b12 deficiency secondary and or a fall can causes this.

[Nackapan in reply to Bellabab]

I'm hoping for that too. I'm at present having every 6th day . I tried a whole year on every 2 weeks as prescribed!