New normal???

[Nana321]

Has anyone gotten back to normal after severe B12 depletion? Yes, I feel better, more stable emotionally, but I'm still exhausted most of the time. I have no stamina. I become short of breath with little exertion. I just cannot find the energy to do very much. Is this as good as it gets? I've increased my injection to every 3 to 4 days. I take a good multivitamin and have increased my potassium intake. I'm 2 yrs into this battle and thinking of my future. All advice welcome.

[Nackapan]

I'm over 3 years in.I feel I'm still making gradual improvements.

I'm also hoping for a better quality of life.

I'm now realising g I do not think i will return to the person I was .

Still a rollercoaster with no rhyme or reason .

Try and stay positive .

I know difficult that is.

I saw an ex colleague/friend who hadn't seen me for over a yesr.

She saw the progress more clearly .

Thank goodness .

[Nana321 in reply to Nackapan]

Thank you .

[Nana321 in reply to Nackapan]

Nackapan I feel better just knowing there are more like me. Strange, but I guess I'm afraid it's only me, I'm doing something wrong or its all in my head. Or I've gotten old and lazy and this is how I'm supposed to feel at 59.

[Nackapan in reply to Nana321]

Same age on diagnosis. No coincidence there if you look at other posts and connections with the menopause- !!

We used to be told listen to your body .

If I did that I wouldn't move all day.

My brain gives me false messages .

So very hard to gauge how far to walk for instance without getting into real problems.

With me head pains. Balance goes. Then weakness .

So tend to walk in big circles as got very stuck once and with thr exertikn to get home had a migraine that lasted days.

So that saying

'Where there's a will there is a way. '

I used to truly believe.

I don't anymore

I've a strong will but my body unable

Unwilling.

Never think you are bring lazey

More brain tricks.

It's a hideous condition.

So difficult to explain.

So you are not alone. No one knows what's around the corner.

I'm learning to live in the present .

Onwards and upwards as they say

.

[Vk7GOD in reply to Nana321]

Same here exactly at 60

[Hidden]

It does take time, but I wonder if you can increase your injections to every other day?

Perhaps try for 2 weeks an EOD approach to injections and see if that changes things. It will only help and couldn't hurt you. Just be careful to rotate injection sites and muscles and keep to a small dosage (1ml)

[Nana321 in reply to Hidden]

I'm going to try eod. Can't hurt,right? Thank you.

[WiscGuy in reply to Nana321]

I agree that increasing the frequency of injections is a reasonable response. But I think the trial period should be at least 3 months. The potential benefits of a shorter trial period range from none to small, while potential benefits of increasing frequency include better, quicker recovery. Risks of smaller, less frequent doses include less improvement in both the short term and the long term. There are no medical risks (such as toxicity) of increasing dose size or frequency.

I do not have medical training.

[Nana321 in reply to WiscGuy]

Great advice. Thank you.

[Ajane]

I also agree to increase to every other day for several months to see if this is the answer. I am 4 years in & every time I try to decrease injections to even every third day, symptoms return after a few weeks. I don’t think I will ever be back to the energy levels I had before, but I am pretty much symptom free & able to get on with life again!

All the very best 😊.

[Divine1990]

Hi

I was also diagnosed with Pernicious Anaemia just before my 60th birthday in June 2020

As I had neurological symptoms such as numb finger tips, a tingling sensation in my legs and shooting pains in my chest. I was able to 'persuade ' my GP to give me loading doses (50+ ). Following which I found that I needed to self inject si every other day. I did try to extend the time between injections but symptoms worsened.

Although I did feel somewhat better I still felt so tired, lacked any energy, my brain was foggy, my mood was flat and I felt nauseous. I had read on the forum that often autoimmune disorders can often come as a pair. I had been diagnosed with Hypothyroidism many years previously.

With the help of HU I discovered I had Hashimoto's and now take T3 (Liothyronine) due to my poor conversion . I feel so very much better now. Much more energy. I also sort the help of a private physiotherapist to improve my core strength. I had just been sitting around for so long. My GP as with many doctors had not been treating me correctly.

I have also had to seek advice on the forums and B12deficency.org regarding my vitamin levels. From what I have read multivitamins are not always your best choice. You would need someone on the forum who is much more knowledgeable than me to advise on vitamins.

I now take vitamin D , K2 mk7 , Methylfolate, Magnesium, Powdered liver supplements and B complex as recommended following my regular private blood tests and advice.

Not sure if this helps but it may give you some other avenues to think about.

Good luck

[Nana321 in reply to Divine1990]

I,too have hypothyroid and take levothyroxine daily. Have for 20 plus years. Not sure what T3 means or T4 for that matter. Had level checked 3 Mos ago and was told it was fine. Are there other tests I should request? Thank you for your reply. It is so very similar to my case.

[Divine1990 in reply to Nana321]

Hi

Hypothyroidism can be another autoimmune condition (Hashimoto's) that medical professionals know little about. So often people do not receive the necessary blood tests or treatment so we are left feeling unwell. Sound familiar?

What helped me was finding ThyroidUK and the forum on HealthUnlocked just like this one but supports people with thyroid problems.

Post including the symptoms you are experiencing, any blood results with ranges and dose of Levothyroxine onto the ThyroidUK forum. Someone will reply to guide you through the blood tests etc. When you have the results they will advice you as to what to do next.

I know all the information can be a little overwhelming at first but one step at a time. Never be afraid to ask questions no matter how ridiculous you think they might be. People are so helpful and supportive on the forums.

I now feel better than I have in a long time. It took me a little while so hang in there.

Good luck

[mcg-woo]

Hello, I understand your frustration. PA is a complicated, sneaky condition that can really take a toll on the body. At my lowest, I had just about every symptom and I’m lucky that I didn’t suffer permanent neurological damage. I don’t know whether it makes a difference in recovery as I was younger at diagnosis—age low to mid-forty.

I will say this though—I continued to recover over a period of years but I never had loading doses and my weekly doses were cut back way too soon. This resulted in a delay in my recovery. I agree with other posters that once injections are increased, it can take some time to see improvement. I had been injecting every other week for a few years and just wasn’t ever able to fully recover on that frequency. It took at least a year of weekly injections to really see an improvement for me. So, don’t give up hope. If you haven’t been injecting every 3-4 days for an extended period of time, then it will just take some time.

Don’t be discouraged and stick with it. Some symptoms take longer to resolve than others. Don’t despair and hang in there. I bet in no time you’ll be posting about feeling better. Best of luck!

[Nana321 in reply to mcg-woo]

Thank you

[LizWilsonpa]

Hi. I feel I got back to normal after around 18 months self-injecting every other day. I now inject about twice a week or less (because I forget). If I have tinnitus or pins and needles (hands and feet) it’s a prompt that I’ve forgotten.

It feels miraculous. I work four days a week and walk 5km at least 3 times a week. The only thing I don’t manage so well is aerobic exercise but this could be a fitness thing!

As others have said I found increasing to eod was the answer so worth trying. Good luck - I wish you ever improving health!

[SigNi]

Also 58. I feel the same after a few months of injections. Still struggling to get on top of the simplest things. Three trips up the stairs and I’m wiped. I have noticed my coordination seems better & my mind is a bit clearer. Pins & needles gone along with stabbing pains. Fewer unexplained anxiety attacks. But still the sense of never-ending jet lag, hearing loss, itching, blurred vision & body-wide pain. I feel very, very old. When I start to feel a sense of rage building up, I know I’m overdue an injection. I think it’s the exhaustion & overwhelm.

[Nana321 in reply to SigNi]

Yes! Can't hear, can't see. It's too much!

[Cherylclaire Forum Support]

For some, the improvements in B12 deficiency symptoms are evident almost immediately. For others, it is a long hard slog to see any improvements- and of course, this can make you feel as if there must be something else, something they are missing ... and this is where a good GP is vital.We aren't all the same. There is no harm in continuing with B12 treatment while looking for other reasons for symptoms. Referrals currently could take quite a while. Best to rule out possible others.

It took me a couple of years of EOD injections to get to the stage where I was confident about reducing this to every three days. When I had covid last year, I could not self inject at all, but afterwards, reverted to every other day just for recovery -then back to every three days.

I have made gradual improvements- worth keeping daily symptoms records so that you can see over time what is happening. It may be worth seeing if more frequent treatment would help.

I was given my first loading injection in 2016. I still believe that there is more of my old self to be gained.

[Rosydawn]

Hi, I have bee reading everyone’s posts for years and asking myself the same thing. Will I ever to get back to where I was. I am 60 and have had confirmed PA since about 2014, but only started SI in Nov 2020 first monthly then weekly and now every 4 days but like many still struggling.

In my quest I was recommended a holistic practitioner. Through him I was recommended a sub lingual b12 in addition to the SI. I was sceptical since other pills and sprays had not worked/had side effects, and I know this forum has doubts. But I tried it because I am paying good money for his advice, and I am very glad I did.

This one has worked for me. Moral of my tale is to keep trying different things and find what combination of things work for you.

The b12 pill that worked for me is methylcobalamin and adenosylcobalamin 500ug/500ug taken daily in the morning. Although it says sub lingual I put between cheek and gum and leave to very slowly dissolve It has helps with brain fog and stress situations and seems to help delay symptoms returning before the next scheduled SI of hydroxycobalamin.

In addition I was also started on CoQ10 100mg which if I don’t take I quickly lose focus and energy.

This along with a major review of diet … going gluten and dairy free and some FODMAP work made me realise my whole digestive system was in crisis. I already new I had some PA damage anyway. I am still working on this but because of this diet change I have also been able to stop statins with my GPs blessing.

Now within 3 months of starting all the above plus a regular trip to the subbed, multivits and some additional gut and supporting supplements …. After years of just coping …. I am slowly getting back to walking the dog … not yet every day … and doing a weekly yoga class… done 3! Tiring and I need to recover after each session but I now know some of this is about being hopelessly unfit not just PA.

These things worked for me, but I don’t think I was as bad as some people. I now realise it is not a single thing that will fix me and it will take time to recover.

Now I am hoping things will continue to improve as I recover a certain level of my fitness and energy and find a diet that is sustainable. I am looking forward to the next little win and on good days I can see a back to (nearly) normal, though a few years older!

[Nana321 in reply to Rosydawn]

I'm going to add the CoQ10. Thanks.

[JohnnyConger]

14 Months ago my B12 count was 50. I SI every weekend, I feel pretty much stable now. I also take folic acid vit D, but not every day as to many vitamins make me feel yuk.

[Nana321 in reply to JohnnyConger]

I'm going to check into the folic acid. Thank you.