Extremely Tired

[fx9898]

Feeling very sleepy of late. When I first started injections I was extremely tired but it then wore off. I am now 4months into injections 1.5 months of that Methylcobalamin and have seen no improvement. Fatigue is becoming a regular thing now. Is it normal for someone to be this fatigued 4months out?

[Nackapan]

It's very early days .I still had severe symptoms 4 months in .

If no improvement wth change yo methylcobalabin go back to what B12 you used before.

Methylcobalamin in some cause more symptoms and is more expensive.

Just keep going .

Keeping a log can help

Some improvements are subtle

[fx9898 in reply to Nackapan]

What symptoms did you have and when did you first notice improvement?

[Cornwaller]

Have you any blood work results for other vitamins and minerals? There are a number of cofactors for b12 and these may be limiting your well being despite restoring your b12 levels. Additionally people with b12 deficiency can also have other deficiencies at the same time.

If you search on HU you'll find details about these.

It is not uncommon to supplement with magnesium, vitamin D +K and methyl folate, and others, as required.

Have you had your thyroid function tested?

Best wishes

[Oneash]

I'm 18 months into self injecting. I'm dealing with a real low, I've had a cold, at least this year I haven't needed antibiotics for severe sinusitis yet, and am still not doing the tail end of my tax return, just to give myself unnecessary anxiety, because of brain fog. So cheers for the added procrastination excuse! I've taken extra, which I know to do when ill. So yes expect periods of deep sleep necessity. Just rationalise it that you need to sleep to mend.

I've just managed to order thicker needles than usual.... Hancock's Half Hour over!!

Give it 2 years.

My husband keeps telling me I'm much better than I was 🙄🤪

One half day at a time, chuck!!

[Raven_Cat]

I am 4 months in as well and going back to the doctors early because I am so unwell (not due to see her until March 5). My initial dosage from the Gastro doctor was 3 injections daily, 3 injections weekly, 3 injections monthly, then 1 every 3 months for life. My initial injection was in hospital from crashing (3 day admission), September 14, my last monthly injection was November 19. Do the frigging math, my doctors surgery stuffed up, my last monthly injection should have been December 30.

I can tell you honestly that I didn't want to turn up to Xmas Day because I was not feeling well and have gone through a sharp decline since. On November 18 (day before last monthly injection) my B12 levels were 280, my Ferratin was 40 (it was at 182 in September, lost 142 points in 2 months and my doctor asked me to take some supplements and see her in 3 months time, with the advice that the oral iron supplements may not work).

No brainer to why I am feeling like crap! Unfortunately many GP's look at the guidelines and work off them. BTW, many of the guidelines for people who are severely lacking B12 are the elderly, I am not, nor wish to have my abilities reduced to that level.

What I have taken from this experience is that I need to take charge of my own health, at this point I want a good GP on my side to assist me with this, I know I have done hundreds of hours researching this condition. (I have tested positive for PA antibodies, luckily, but regardless of the cause the result of malabsorption of B12 is the same/similar). My condition is a 1 in 1,000, so I don't believe my GP has had the time to research the topic,

I hope she has now, if not I will be looking for a new one (I have only been with her since 1-2 weeks before I went to hospital in September, and she did the right thing by me, did the correct tests and ordered me to hospital in the first place, on the morning I was to see her for the first B12 shot). There is hope!

Anyway, I am booked in to see her next Tuesday and I hope it will be a positive experience.

It is an up and down process for me at the moment, don't be disheartened that you are feeling fatigued, it seems that yourself and your doctors need to work this out, hopefully in unison. I know that I was severely fatigued and unwell for 3 years before diagnosis, to expect an overnight solution is a wish and not a reality.

Like you, I am so much better, but going down hill again, so there is some recalibration required. I have at times been over the moon in that I have energy and feel my old self coming back, then my energy deflates and although, I am not as bad as I have been for the last 3 years, it is disheartening. I want proper energy as the rest of the population has it, at 100% or lacking for reasons that you have a sickness, doing too much and need to slow down.

Good luck, I wish you well, verry much well, not just okay!

[Oneash]

How often are you getting injections? How fresh are your B12 ampoule supplies? I just realised the reason I'd gone down hill again was my ampoules were getting old. I've resolved to only get 3 months supply at any one time.