Exhaustion

[Sea-blue]

Is exhaustion just something we have to put up with if you have PA? I’m SI Hydroxocobalamin twice a week with folate supplements , in between getting it from my GP every 2 months. I’m taking a B complex with 5 mg of B6. Potassium is fine, ferritin on the up 65 but I’m still taking gentle iron supplements. Could a transferrin saturation index of 18% not be helping . I am seeing my GP and having lots of blood tests again. Just can’t function . I’m just worried this is the new me . Of course I’m not expecting medical advice just wondering if exhaustion is what you get and there’s nothing you can do about it

[Nackapan]

I still struggle with fatigue .A kind I've nevef experienced before b1e deficient.

It is improving but very very slowly .

You are doing all you can by the sound of it .

Hope it improves with time.

[Sea-blue in reply to Nackapan]

At least I’m not alone thanks

[LizWilsonpa]

Hi

I was diagnosed with post-operative fatigue and after a year referred to a Chronic Fatigue Clinic. This was helpful and really advised breaking things down into small steps and varying activities and rest - and not overdoing things. However, I still found fatigue very hard to cope with, so frustrating to have little mental and physical energy. At the time I was having monthly injections with GP.

With lockdown I was taught to SI and with brilliant advice from this forum I started injecting eod and regained 90% of my health back- even returning to work for 4 days a week. It felt like a miracle!

My health has deteriorated again - I think after Covid last year. I now SI daily and stay well half the time when I’m active with few problems- then I get a cold or stomach upset and I’m knocked out again.

I feel concerned about how often I SI and whether it will need to increase again (someone on this forum SIs 4 times a day). However, eod and now daily has made a huge difference to me.

Good luck with next steps.

[Sea-blue in reply to LizWilsonpa]

Thankyou for your input. Yes I’ve had a big cardiac op too and it wiped any B12 I had left. I believe I had PA about 7 years prior to op but no GP recognised symptoms. Thought I was having a TIA . Which I hadn’t . After surgery I couldn’t stand , walk , function at all so i have made some improvements on EOD. But it’s hard going isn’t it. Hope you continue to improve

[Sleepybunny]

Hi,

Just wondered if you'd had the following checked

1) Vitamin D

Many on here report deficiency or insufficient levels.

2) Have you had thyroid tests?

Many forum members report thyroid issues as well as PA/B12 deficiency

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

There are other thyroid tests that a GP or specialist can order.

thyroiduk.org/thyroid-funct...

You could put any thyroid results you have along with your story on Thyroid UK forum on HU. Apologies if you've already done this.

3) Were you ever checked for coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be checked.

nice.org.uk/guidance/ng20

If you were tested and had a negative results, read guidelines to see if your GP followed recommended diagnostic procedure...some don't.

It's possible to have coeliac disease and get a negative result if

1) person has IgA deficiency

IgA is an immunoglobulin.

2) person was not eating enough gluten before blood tested

More info on Coeliac UK website.

coeliac.org.uk/home/

Some forum members have said they benefitted from going gluten free even when not coeliac.

What's in your B complex and how much folate are you taking?

Are you getting enough sleep?

I found that taking a magnesium supplement with RDA (recommended daily amount) helped my sleep.

From personal experience, if you've been ill for a long time, it can take a while to see improvements. Some forum members report that symptoms get worse for a time before starting to improve.

Might be worth keeping a symptoms diary. Track up to ten symptoms (more if you have time/energy) and record severity each day or each week. Seeing improvements day to day is hard but month to month or year to year improvements might be more obvious.

I'm not medically trained.

[Sea-blue in reply to Sleepybunny]

Thankyou so much sleepybunny for all the excellent info. I’m taking 5mg folate until I’m able to reduce SI . I will look into Thyroid and Coeliac again. They were tested but as you say probably not properly I shouldn’t think. B complex has only 5 mg B6 . And just the other B’s. I’m taking vit D as I was prob deficient due to Sheilding over the pandemic and having to have heart surgery . I was indoors a lot. I’m only taking 20ug a day so that’s prob not enough . I’m not allowed to take K2 with it as I’m on blood thinners. I think I’ll get a private vit D test. And poss thyroid too. I’m going to look up everything you’ve suggested . Thankyou again

[Dilly_blue]

Hi - I am not an expert (!), but I think you are below range on the transferrin saturation level. It is supposed to be 20-50 per cent I think (from memory, but please do correct me anyone if I am wrong!). Yours is at 18 percent; it is part and parcel of iron transport / processing etc (not too sure about details), so further tests from your GP to drill down into possible iron problems / anaemia might be helpful.

My transferrin saturation level was 10 percent last year. I went to the private anaemia clinic in Cambridge (regarding B12 issues etc); and they also gave me an IV iron infusion (due to the low transferrin saturation.

[Sea-blue in reply to Dilly_blue]

Thanks Dilly Blue. Yes I was wondering about that level. The GP’s don’t know enough about Iron/ Anaemia etc. Gosh yours at 10 you must have felt dreadful

[Dilly_blue in reply to Sea-blue]

Yes, I think so - I was also under treated with B12 as well at the time, so feeling pretty awful generally! I hope things sort out for you..

[WIZARD6787]

I used to suffer bone pain at night and not be able to really sleep. I am currently injecting .50 mg hydroxocabalamin three times a day and administering 25 mg oral Pyridoxal-5-Phosphate twice a day and unless I tweak my back I am for the most part pain free. I expect my back will go back to normal with time and use.

I without any experts went with my body including my neurological system works differently at night and that being in pain at night did not mean my neurological system was fine during the day.

[Purplegirl2]

I also feel very disabled by the extreme fatigue from the pernicious anemia and I’m holding onto hope that it will get better once I start more frequent injections. I want my life back so bad. I’ve been low for a long time so I know it will take time to restore my levels but I really hope my fatigue and concentration issues can go away. I don’t care how often I’d need to inject to make that happen (even once a day) I’d do whatever it takes. Fortunately my doctors have finally come to their senses and will make sure I have the b12 I need and will teach me to self inject.