Fatigue just won't go away

[Musicgirlie]

I've been SI for four years every other day with methylcobalamin and have seen much improvement, though still bone weary fatigue when I do more than a few things during the day and I crash. I switched to hydroxy about a month ago and I think I'm noticing a little improvement but crashed again when I did too much and I want to know is the fatigue something that can take years to improve? I feel pretty great when I do absolutely nothing at all but just can't seem to get over this fatigue issue. When can I expect that aspect of PA to improve? Thanks!

[fbirder]

I’m several years into treating myself - two injections per week.

I’ve found that my fatigue doesn’t really hit me - if I don’t exert myself too much. I can now walk for miles, especially with the dogs, without feeling too tired.

That seems to be slowly improving. This time last year shooting six dozen arrows at 40 m would have me on the verge of knackerdness, and that’s with a sit-down halfway through. Now I can do it without a rest and I feel I could do more.

But if I try something requiring a lot of effort in a short time (moving one of the heavy targets, for example) it has me on my knees panting for breath.

[Foggyme Administrator]

Hi Musicgirlie. Just a thought...those with PA and B12 deficiency most often have absorption problems and this can cause other deficiencies which can go unnoticed and cause fatigue, general weakness, and other symptoms that can be mistaken for the symptoms of B12 deficiency.

The main culprits are ferritin (one marker of iron deficiency anaemia), folate and vitamin D, so might be s good idea to ask your GP to check these for you (good GPs check these on an annual basis for those with PA - but not many of those about).

Note: best to only take iron supplements if you know you need them and under medical supervision - too much iron can cause iron overload (quite dangerous). Same with vitamin D - too much can cause vitamin D toxicity. And the same with vitamin B6 - too much of that can cause neuromtoxicity / irreversible neurological damage.

Some here take a multi-vitamin and 400mcg folic acid daily, as maintenance doses (no more than 100% of the RDA)...but some don't need too, and over supplementing with things that the body doesn’t need can be detrimental to health (although sticking to no more than 100% of the RDA is unlikely to cause problems for most people - with the exception of vitamin B6 😖).

The bottom line is that there is no 'standard' vitamin and mineral dose that suits all - so always best to try and get tested first so you can assess if and what the body needs. (Most GPs not to good at screening for vitamin and minerals (other than folate and vitamin D and iron) but these can be obtained via private blood testing companies, if you feel the need.

As to the fatigue...well, I'm much the same as fbirder...the best thing to do is try and pace yourself and don't push yourself to the point of collapse. Some days you'll find better than others so when you feel exhausted just rest as much as you can and be kind to yourself.

Some people don't do well on methylcobalamin (nobody knows why - it's an individual thing) so perhaps the change to Hydroxocobalamin will bring benefits. And everyone improves at a different rate - for some the fatigue is present if they over-exert themselves, for others the fatigue does eventually lift.

So keep hopeful and check out those other vitamins and minerals.

Good luck 👍

[Musicgirlie in reply to Foggyme]

I do take an iron liquid supplement and my iron was a tad high so I've backed off for a bit to level it out. I also take 5 mg methylfolate and vit D and a multi and have done for years. I just can't fathom that the fatigue would last this long when so many other things have improved. I'm checking into thyroid now to see if I'm taking enough.

[Foggyme Administrator in reply to Musicgirlie]

Hi Musicgirlie. 5mg of methylfolate is a hugh dose to be taking on a long-term daily basis. The usual maintenance dose would be 200mcg - 400mcg daily - but only for those who need it.

And it can cause side effects, including fatigue, muscle and joint pains etc. (Google methylfolate side effects to see mor information ). Also - methylfolate does not suit everyone - I tired it and it made me feel very ill indeed - and that was only 400mcg daily.

So, unless the methylfolate has been prescribed by a medical professional, suggest you stop taking it to to see if your symptoms improve.

Despite some of the hype about methylfolate on the Internet (usually by those selling it) the majority of people find that folic acid does the trick - and some people don't need to supplement with folic acid at all (400mcg is the usual daily maintenance dose for those who do need to supplement with folic acid).

Also - have you had your vitamin D levels checked to see if you need it - over supplementation can cause vitamin D toxicity.

Likewise - vitamin B6 contained in a multi-dose tablet can be too much for some people - even at doses at or below the recommended RDA (can cause neurogical symptoms and irreversible neurogical damage)

Good that you've stopped the iron - if you're levels are to high, might be something that you don't need at all.

Supplements are a nightmare to get right, and there is no 'standard' rule on what to take in terms of daily maintenance dose - we're all different and our bodies have different requirements. Some people need no supplements - and some need very high doses. So hmm...not easy.

In your case, it sounds like you may be over-supplementing with some things (particularly the methylfolate - then iron, and possibly vitamin D and vitamin B6), so, unless prescribed by a medical professional, suggest you drop the supplements for a while, monitor, and see if your health improves.

Good luck 👍

[Musicgirlie in reply to Foggyme]

Thanks for this. I had stopped the methylfolate when we were moving and I noticed I felt better but thought it was because I sucked it up and just had to get through the move. I'll stop it now and change nothing else and see how I feel.

[Foggyme Administrator in reply to Musicgirlie]

That’s a really good idea - especially if you noticed an improvement when you stopped it before. Suspect that might be the cause of your continued fatigue.

Might be a good idea to look up the signs and symptoms of folate deficiency and if these appear, just try including 400mcg folic acid a day to see if any new symptoms abate 😉.

Hope you're bouncing around with renewed energy before too long 😀.

Good luck.

[pvanderaa]

Are you supplementing with folic acid and a daily multivitamin?

[Musicgirlie in reply to pvanderaa]

yes, 5 mg methylfolate and a daily multi vitamin.

[pvanderaa in reply to Musicgirlie]

I also take B6, B1 and TMG (trimethylglycine) to support energy and nerve repair.

Also, 5 mg methylcobalamin sublinguals any time I’m feeling fatigued.

[Marz]

Low thyroid can be a cause of fatigue - am wondering if you have had more than the TSH tested ? Low thyroid and low B12 seem to go hand in hand ...

thyroiduk.org

[Musicgirlie in reply to Marz]

I do take 3 grains of Armour thyroid daily and my FT4 is in the mid range of normal and FT3 are in the upper 3/4 area. The other day I accidentally took a 1/2 grain more than usual and I noticed I felt better the rest of the day so I began increasing it to 3 1/2 grains daily and I think it's making a difference. I still crashed but it's only been days since starting new dose. I felt like I was at the upper end of dosing based on my tests but because I still crash I thought maybe I do need more.

[deniseinmilden]

I hear where you are coming from and my feeling is you should be less tired if the B12 is working properly.

Some of us need more frequent injections and I know of people who need up to 3mg per day. If you feel you aren't getting other B12d symptoms then I would think you may be getting enough but the only way to know would be to try more jabs, ie daily, and see if that helps. If not, it's not the problem.

As Foggyme says, you may have other deficiencies going on which may be limiting the effectiveness of your B12.

I must go to work now but there's more information on this in my recent replies to people which you can find by going to my profile and looking under the heading "replies". If you have any further questions please ask again.

Because I seem to have problems absorbing and utilising other vitamins and minerals I need high levels of everything to make my B12 work properly and I still suffer horrible fatigue if I don't get everything right.

We are all different and have different things that are "broken"! For instance I need methylfolate instead of folic acid and Heme iron is particularly important to me.

Good for you for asking more questions and feeling you should be better than you are. I'm sure there is an answer out there for you.

[Musicgirlie in reply to deniseinmilden]

I may try the daily shots as I do know I seem to need more B12 than most. I'm currently taking a good amount of vitamins and minerals and they don't come up as deficient. I'll check out your other posts. Thank you.

[MoKayD]

I mistakenly thought that I didn't need to continue taking iron supplements once I started with B12 supplements. While I felt better after receiving my B12 shots I was still, periodically, very tired. My doctor tested my iron level, which turned out to be very low, He told me to resume taking an iron supplement. After starting back on iron my energy level shot back up immediately.

[Musicgirlie in reply to MoKayD]

My iron was a tad high but that was a few months ago after I'd been supplementing. I know it's important so I'll keep an eye on it.

[Ryaan]

1 injection every other day for 4 years ? You might be overdoing it since it’s been so long.

What happens if you cut down to 1 per week ? I think you should cut down and try it for a few weeks and see how you feel.

Also make sure your Folate, Iron and Vitamin D are in good range as they will cause fatigue if low.

If you don’t have Thyroid problems you should get a blood test as that can cause fatigue also.

[Musicgirlie]

If I take less B12 I crash and feel horrible, so every other day has been working. I'm going to increase to daily shots and see what happens