Still exhausted

[Nanc72]

I am on injections every 3 weeks and all my symptoms are gone except for occasional stomach issues, fatigue and insomnia. I am no where near as exhausted as I was over a year ago, but I am still so tired. Should I go back to weekly injections? All my labs look great. I don’t know what else to bring up to my Dr

[Hidden]

If you have your lab results Nanc72 try posting along with the ranges for the members to give you advice,although we are told our labs were fine the opposite is usually true when we actually get the opinions of the knowledgeable members on here.good luck x

[Nanc72 in reply to Hidden]

It’s not my lab work. I can read those and look for optimal vs “normal!” I am just wondering if anyone else still felt tired after treatment? I’m not anemic and of course with supplementation by b-12 is over 2000!

[Ebonner in reply to Nanc72]

I still feel tired but not as bad as I used to. I have now been diagnosed with asthma so suppose that will be factor in fatigue.

[CarlaEP in reply to Nanc72]

Hi Nanc yes I still feel tired after treatment and although my fatigue isn’t as bad as it was - it’s still there. Maybe it’s a much longer process to ‘completely’ heal than we imagine it would like eh 🤔

Take care

Carla

[CarlaEP]

Btw I am continuing on every other day injections while I’m noticing improvement following loading doses. Maybe you should consider going back to weekly injections until you feel less fatigued. I’m not sure ( and not medically trained ) but isn’t the B12 level in our blood often insignificant as, for some of us, it’s that we lack the mechanism to use ‘stored’ B12 from the liver.

[Nackapan]

Fantastic symptoms mainly gone!!

Vitamin d levels?

Pysio to gently build up physical strength

Pacing

Regular sleep times

Relaxation before sleep

You could try 2 weekly first to see if it makes a difference?

Every time I try and push a bit I go backwards

It's an awful patience to try and find

[Gaudygoat]

At the moment I'm injecting weekly. I've been doing this for about two years and until recently felt like I was improving. Now, while I'm only about 70% of where I'd like to be it feels like the improvements have slowed. I don't noticably feel better following my injection but I do start to feel slightly worse when I have pushed my injections out to fortnightly. For what my advice is worth...I'd probably say try giving yourself more regular injections and see if it helps. If not drop back to the level you're at now and speak to the doctor. Just because you have B12D doesn't mean there isn't something else wrong.

[Twaddletop]

Hi Nanc it sounds to me that you may have another auto immune problem. In my experience, they rarely travel alone. x

[fbirder]

Yes. I've been injecting twice a week for years.

I definitely do not have the energy I used to. I could easily 10 km miles carrying 15 kg of birding and photography equipment. Now I can just about manage 3 km and if I try it with a pair of binoculars round my neck i have major pains.

It's taken me years to build up to this level of stamina. If I didn't have an active hound to drag me around I'm not sure I'd have managed it.

All I can advise is to take it slowly and recognise your limits.

[Nanc72]

Thank you everyone. I had about 2 months that I felt amazing and now I feel horrible again. Just with the symptoms I listed above though. My other symptoms haven’t returned. I was low in Vitamin D back in November, range was 30-100 and I was at 29. I am taking (1) D3 1000 IU daily. I see the hematologist this month. I guess I’ll see what he has to say. Any thoughts on low magnesium as a possibility? It’s not thyroid as I have had a complete work up with both antibody labs. MMA and Homocysteine are excellent, as are all labs pertaining to any type of anemia.

[Retteacher]

My husband thinks that it could well be your vitamin D level. This requires loading doses over several weeks, preferably with K2 vitamin. Your 1000 unit tablets will not bring your level back to normal or rather desirable levels. There are threads that discuss this in more detail.

[Nanc72]

I’ll have to ask today at the Dr. The issue is that since it’s only one point below their “normal” range it’s always a fight to get anything changed! I am sure everyone on here is all to familiar with that! I am 47 and feel like I need to be on disability. I have worked since I was 12! I am exhausted!

[Litatamon]

Hi Nanc,

I am very similar. I have been blessed to have many symptoms disappear. And did feel better earlier on, it was like a brand new world. But the fatigue remains to be the most frustrating symptom left, and exercise/muscle recovery.

I too have low vitamin d (7. 6 ng/mL 19 nmo/L). When I started b12 I didn't feel a lot of difference in my leg strength, fatigue and muscle recovery. But I did with vitamin d loading. I had 10000 iu/day for a month and 5000 iu/day for the next two months. So the previous poster is right, 1000 iu will not do much if you are very low.

To all reading:

Never supplement high doses of vitamin d on your own. One must be retested at three months. It is imperative because these high levels can be detrimental to your health (kidney, vascular calcification*) *I believe that was the term used.

Anyway Nanc, I was disorganized at three months. Did not get in to be re-tested and had to bring my amount of daily vitamin d down for safety reasons, until I get in for testing.

I have noticed quite a difference in my energy. I have also stretched out my b12 injections (I was every other day due to neurological symptoms, but stopped when I noticed no further improvements, as per the protocol).

So not very helpful to narrow down the culprit. But I am on the case!

I know how frustrating it is Nanc. I hope it changes for you soon.

[Nanc72]

I am not not even considered deficient in the US, just insufficient. My hematologist is the one who ordered the test and told me what to take. I have also just (on my own) added a low dose of magnesium as they go hand in hand. Maybe that will help. I am just at the end of my rope. When you go to the Dr and your labs all look normal, but you feel anything but! It’s hard to convince them you are truly fatigued and NOT depressed! I don’t want an antidepressant. I want my life back

[Nackapan]

Yes I've had that problem too. I'm off for bloods today

No reason given for ferritin levels dropping if I dont take iron??