After two years of treatments for Pernicious Anaemia I still struggle with fatigue. I've been working out and riding a bike as much as energy levels allow me. I'd like to lift weights more but two days a week is all I can handle and need time to recover afterwards. Some weeks I can not go to the gym at all. I feel exhausted after nearly any distance on a bike with moderate amount of elevation gain. I'm frustrated with the lack of insight from my doctor who seems to feel that this is the new normal for me as I age. But I know this is not the case.
I'm improving diet slowly and not consuming alcohol. The Perfect Health Diet (Jaminet), The Paleo Approach (Ballentyne), The Wisdom of the Chinese Kitchen (Young).
I'm also working with a non-traditional doctor who does hour long sessions with advice and instruction. This has been quite helpful but I would love to get more insight from others with this type of issue.
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The most common response will probably be "have you tried increasing the frequency of your B12 injections?". It's always worth a try and might do the trick for you.
In terms of the diet books mentioned they seem to promote a paleo-style approach - this contains some healthy foods but can also include (depending on the diet pattern) many foods which are unhealthy and should be limited or eliminated in the diet.
For example, the "perfect diet" book (from what I can tell from the website) recommends the consumption of butter, coconut oil, beef tallow, duck fat and pork lard, all of which are high in saturated fat and should be reduced or eliminated. It recommends avoiding grains, vegetable oils, beans and .... peanuts, which are largely healthy foods, especially wholegrains, beans, nuts and rapeseed/canola. In short, I would seek better sources on the nutrition side of the house. You can find some tips in my profile.
You mentioned Sarah Ballantyne - she recently changed her nutrition opinions a lot and has come over to a significantly more evidence-based approach. It's an interesting journey which she relates in the interview below.
The frustrating issue with diet is the lack of expertise from a general physician. We turn to others for information. The podcast was quite interesting. I did not know that Ballantyne's book had come under this type of criticism. Good for her for admitting mistakes and making adjustments. Thank you for your recommendations.
It's a minefield out there and most GP's are very ignorant on nutrition topics, their inability to properly understand nutrition is what landed me into a severe B12 deficiency and this forum.
You may be correct in that I might be expecting too much too soon. I hope to resolve the testing and injecting schedule soon. It's frustrating that no rational program of monitoring has even been discussed. I have to drive this by requesting complete blood counts and trying to stay ahead of B12 levels dropping. Shouldn't the medical professionals be the ones to establish a consistent schedule?
I appreciate your comments they have been quite helpful.
I concur with Orchard33 here. There are a few clues here. One is It is common for us with PA to have iron malabsorption issues. Two your extreme fatigue. And thirdly your increased RBC. If iron is low your body will produce more red blood cells to try and compensate for the lack of oxygen and anemia. Unfortunately these red blood cells, called reticulocytes, are not mature and don't function properly. If you've got AIG/PA, a chronic inflammatory condition, then Ferritin in normal range is not considered a valid marker so you may want to ask your physician to order a complete iron panel or TIBC. Or if you're in the US you can go self-order it from LabCorp or Quest etc. Be aware there is a condition called Iron Deficiency Without Anemia (IDWA) where Ferritin is below normal but RBC and Hemoglobin are normal. Most doctors when they see this will tell you your Iron levels are fine since you don't have anemia! So have a complete iron panel done. Also see my post on Iron Deficiency Without Anemia.
All other measurable metrics fall within normal levels. No sleep apnea, vitamin D normal, taking supplements. It is not a stand alone element but it looks like B12 is the center of attention. Diet continues to improve with nutrient dense foods, high fiber, doubling down on fruit and vegetables. No fast food, no snack food or sugary drinks, and I'm trying no alcohol for an extended period. What do we know about B12 levels? Mine hover around high 400's always under 500 with monthly injections. I read where in Japan they have moved the limits from 200-900 to 500 to 1300. What's up with that?
As PA is an auto-immune condition I am wondering if you have considered auto-immune thyroid ? It could explain your fatigue - along with low Ferritin Folate & VitD...
Open your mind to the possibility of other issues, at least to cross them off.
I thought everything was my b12 deficiency (diagnosed in 2019) & I have ended up since having vitamin d deficiency, a thyroidectomy & being diagnosed with sleep apnea - the latter that I believe has been there for many decades. CPAP for sleep apnea has been life changing in many areas I was convinced was b12 deficiency.
This could absolutely be all pernicious anemia, it is debilitating enough on its own. With exercise recovery, issues with that, being a classic impactful symptom. But make sure you cross other issues off as well.
Hi ,i dont know if this may help, but i have started taking Magnesium Glycinate as i have struggled with severe Lethargy for over a year ,now i feel so much better and more energy ,i have PA and inject once or twice a week .Maybe your injections of b12 are not enough too x
Ongoing fatigue is my issue too... I SI daily, have good levels of folate, ferritin, vitamin D, etc. I think COVID was what floored me. I keep going...
If you have difficulty absorbing b12 you may have difficulty absorbing other nutrients as well, so it may not be enough to supplement a few of them. Overall nutritious food and a general multivitamin/mineral could be useful. Minerals are absorbed better from a proper sourdough bread, because of it has less phytic acid which binds minerals. If you exclude dairy you may be low on iodine. Not everything is easily tested for.
I have also experienced a similar issue with exercise. My GP told me at my age I should just do gentle pilates. (I'm 56!) 😡 I took matters into my own hands and was well on the way to recovery, but after a very active holiday climbing mountains and mountain biking in Scotland, followed by consecutive weekends fell walking, I crashed. (Energy levels I mean, not on my bike!)
You'll need to check out or obtain your own blood tests here, but it seems I've used up my iron stores. I see Rexz has posted some useful info already and I would very much advise reading his post on iron deficiency without anaemia. There are a few articles to be found online about this and Rexz's post definitely pointed me in the right direction.
Basically, I've worked out that I've had a long-standing iron deficiency, coupled with a vitamin B12 and D deficiency. This may be diet related, as I've been a vegetarian for over 30 years. Whatever the cause, I need more than I've been currently obtaining through my diet.
There are also articles online about iron deficiency caused by exercise. This is what I believe has happened to me, so I need to get my levels built back up again before I can do the exercise I'd like. One of the symptoms along with fatigue, is 'exercise intolerance'.
Re: diet. Again, Technoid is the expert here, but I definitely saw an improvement in my health when I changed my diet to cutting out most processed foods, cooking from scratch and building good gut health through lots of fresh veg and introducing saurkraut and natural yogurt as pre-biotics. Basically the Zoe diet without the cost!
Good luck with this. I know how frustrating it can be when you just want to be out there!
I'm 62. I was sleeping 16 hours a day and was still so tired before learning I had PA. I have lots of energy now. I play hockey 5-6 times per week, often with men when I am not skiing. I also take Zumba and other dance classes 5 times per week. Make sure you are getting injections of B12 often enough. It also would be worthwhile to get a full work up to make sure you don't have any other problems causing your fatigue (e.g. thyroid, diabetes). I like to do at home workouts with Bodi and you might find that easier than having to go to the gym. 21-day Fix is a good workout program.
After learning that you had PA, what did you do? Did you pursue a deeper analysis with more blood work, change your diet, adhere to an injection of B12 schedule. To what do you attribute the increase in energy?
I did not get any more blood work. I had cravings for eggs and was eating them every day before I was diagnosed. I don't eat as many eggs now. I was not short because of a lack of B12 in my diet. Initially, I got by with 1000mcg of B12 taken sublingually every day. Some people with B12 can absorb enough with that, others need injections. The increase in energy compared to the past 2 years was immediate. Because of that, my doctor and I did not feel a need for any more tests. I had more energy because I was not absorbing B12 and with the really high dose, I was getting enough. Several years later I had tingly and painful toes. My doctor suggested injections. I tried them and that fixed the problem with my toes but it took a few weeks. I am positive that the increase in energy came from the B12. It was a miracle drug for me. I don't think I declined as much as some people do before the initial diagnosis. Maybe that is why I turned into an energizer bunny as soon as I started on the B12. On this forum, it takes longer for some people to bounce back than it did for me. With time, hopefully you will end up being completely back to normal. I have my husband give me injections now once per week because I start seeing symptoms again if I go for 3 weeks without an injection.
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