Is it normal that your deficiency gets worse over time that you have to increase the frequency of B12 shots?

[Escher783]

I just want to know how many of y’all have had to increase your b12 shot frequency? My b12 isn’t lasting long enough… and I don’t really understand why. I think I need a better work up…. But how many of y’all had to increase?

[Nackapan]

Hopefully your deficiency isn't getting worse over time.

Some find as they are getting better they do more .

Some needing more b12 to sustain the new level of activity .

Or it might be be you can't do the same as yiu did before and have to make adjustments.

As how ever much b12 you have it doesn't change things

Ive aways needed frequent injections and am nowhere near functioning at 4o% yet.

So many, needing different regimes to hopefully reach an acceptable level of getting on with their lives as best they can.

I agree an invisible condition

alot of the time.

I shocked someone recently when I said I'd not been on a train or bus since early 2018 or been on holiday or watched a film or read a book.

We can 'appear ' so okay.

Doctors have difficulty understanding too., don't they how it affects us daily.

[Escher783 in reply to Nackapan]

I have a feeling my problem is getting worse over time. I’m 38, diagnosed last year. I was trying to walk 4 mi a day to lose weight a couple months ago but now I’ve just felt zonked so I stopped after a couple weeks of doing that in June.

[Nackapan in reply to Escher783]

Perhaps too much too soon.?Or try different things . Just be kind to yourself.

One of my daughtersxis 30. She has to swim for 'safe' exercises as walking she simply cant sustain.

Hope you find a way.

[mcg-woo]

What is frequency of your injections? Mine weren’t frequent enough to begin with so of course I needed to increase to get better and feel normal. If you are injecting frequently enough, you will not feel like you need an injection. You will just feel normal between injections. I am curious though to hear from people with long term PA, whether they did have to increase shot frequency over a long period of time?

[Escher783 in reply to mcg-woo]

I get 1000 every month

[Escher783 in reply to Escher783]

I’m 38, diagnosed last year. I take one injection of 1cc a month. And I feel normal for about 2 weeks 48 hrs after an injection. So maybe every two weeks would be better.

[mcg-woo in reply to Escher783]

I would definitely try every other week.

[Hidden]

I found I was needing an injection after 6 weeks when I had been having them for just over a year. From then on it wasn’t long before I needed to inject after about two weeks. Gradually this came down to a couple of days then went back to where I am at the moment at two weeks.

The problem is the burning, tingling sensations of peripheral neuropathy which gets to be a damned nuisance during evenings.

The GP has refused all requests for necessary ampoules and this is backed up by a neurologist, despite EMG study demonstrating the neuropathy. They will, however prescribe painkillers to deal with the irritation so I am on between two and four 30mg codeine a day at the moment.

Fortunately my stock of ampoules from Germany should last for about 80 weeks.

I will be 77 in a month and one of my friends suggested yesterday that as we near 80 she feels the doctors are using such as waiting for sample results and consultations is kicking the problems further down the road until we drop off our perches and solve them permanently.

I also find sitting watching TV with feet in a bowl of hot water helps as does a nice soak in a hot bath. These can extended the re-injection period for a day usually. It is whatever works for you.

I think P.A. is just like a marriage as it is till death do us part, except for actually agreeing to it in the first place.

[Escher783 in reply to Hidden]

I’m 38 and I feel like I’ve been having problems like this for about 7 years that weren’t treated until last year. I just thought I was depressed because there was a lot going on. It wasn’t until December 2019 where I felt winded and thought… that’s not okay. Based on everyone’s response, I guess I should try to see if they will increase my dosage. Thank you for letting me know what could be in store if I don’t get a handle on this.

[Gambit62 Administrator]

I don't think it is common for things to deteriorate once you have found the frequency that is right for you so what you are describing suggests to me that there may be something else going on - eg thyroid problems. The overlap with other conditions, particularly thyroid problems, is quite high. In terms of thyroid and B12 energy release processes need both so one can mask another to some extent.

[Escher783]

I don’t have thyroid issues according to my labs and the endocrinologist. So I guess that can be ruled out. My folate looks normal also. But I’ve only been taking 1cc a month for a year and I’ve had symptoms about 7 years that got worse in winter 2019-2020. I feel ok for about 2 weeks after an injection then I start to drag until I feel no so great. The last two months I feel incapacitated after two weeks.

[Sleepybunny]

Hi,

Just wondered if you had had iron levels and Vit D checked as well.

"I don’t have thyroid issues according to my labs and the endocrinologist. "

Which thyroid tests did they do?

In UK, GPs often only test TSH which won't give a full picture of thyroid function.

Might be worth putting your thyroid results on Thyroid UK forum on HU.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

[Hamayeshguy]

I think just the frequency is not everything you have to exercise but so mild and longer hours. It's seems to me blood circulation improvement is the most important factor and you have to see it for yourself what frequency of shots you can endure along with maintaining blood circulation in it's best shape! Without this kind of exercise I think just injection not only is not helpful but also causes many side effects due to changes to blood circulation . In the meantime you have to watch your diet. Low to no carb. No sugar at all. Protein Saturated fat in proper amount along with exercise make Mylene sheath repair much faster. Good supplementation and having good sleep which comes with good long time exercise free mind. So you have to see it for yourself what frequency can suit your needs. You may see everybody saying hydroxycobal amin is better option but based on some researchs cyanocobalamin is better option because it should processed in liver and gradually get added to our blood stream so our body can't make antibody for that but hydroxycobal amin doesn't need processing in the liver and directly get added to blood stream so our body starts to make antibody for complex of hydroxycobal amin + Holo transcobalamin and it causes cancelling it's effect. Hydroxycobal amin has more retention in our body because its natural to our metabolism but if it happens to be in antibody complex form can not do its job. Why hydroxycobal amin is recommended because it has zero toxicity and doesn't get affected by liver enzymes activity so all of the studies are done based on that. With that said weekly loading cyanocobalamin along with proper nutrition , supplementation and the best form of blood circulation can repair damaged nerves in less than six months but depends on extent of damage and duration of damage existence. Remember that B12 causes side effects like vascular smooth muscles relaxation so local blood pressure drops and causes severe fatigue in muscles, numbness, burning feet and dizziness or vertigo and imbalance so exercise is crusial to canceling out it's side effects.

[LizWilsonpa]

Hi. I feel that I did have a sudden deterioration after about 3 years on injections. I was getting the injections monthly and it seemed to be the right level. I didn't associate my 'new' health problems with B12 deficiency at that time - I just felt I was never well. I have no idea what triggered the change - possibly peri-menopause. I got referred to a Chronic Fatigue clinic and the GP did thyroid tests.

Two years later I was still ill - with Covid the surgery refused my B12 injection. I was surprised how quickly I deteriorated, experiencing pins and needles, tinnitus etc. I decided to do my own loading doses - and haven't stopped. I inject every other day and after 15 months it still feels like a miracle as I am able to work and exercise and generally manage all activities. I buy my B12 from Germany - and haven't told my GP as I've had such trouble with prescriptions in the past. I pick up my monthly prescribed ampoules as I want to ensure the need for B12 is on my medical record.

Good luck with however you decide to take things forward.