Hi, friends. Just checking to see if I’m alone or if any of you have found solutions…
I’m 34F, diagnosed with PA and IDA at 30. Though fixing my levels took a while (about two years until most of my symptoms resolved), I’m mostly good now! I’m able to give myself monthly injections of cyanocobalamin, prescribed by my PCP.
Good, that is, until I try to do too much. For ex., this week I had more time than I usually do to exercise. So I did a lot of easy biking and yoga (40 mins. on R, 60 mins on F, 60 mins on Sat.), as well as some errands and chores — though, I should note, nothing out of the ordinary for a normal, healthy 34-year-old.
The end result is that I went to bed at 9 p.m. on Saturday and slept until nearly 9 a.m. the following morning — woke up, ate breakfast, and then was mostly in bed again until 2:45 p.m., when I finally (!) felt less drained.
Today I tried to go on an easy bike ride with my husband and really couldn’t hack it. I had to turn around early.
What IS this?? I used to run marathons, after all! Any tips or tricks for this? I feel so badly for my poor husband, who has so much more energy than I do and I’m sure would like to do more with me.
PS — anyone on this form have any success with nasal spray treatment? I absolutely murdered my thigh last week trying to self-inject and would love either a supplemental or alternative administration option…
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what are your b12 and ferritin levels now?? Have you recently had them tested…..
There’s a big difference between normal and optimal levels, and doctors don’t always know the difference, your levels could of improved but might not be where they need to be..
Also have you had vitamin D and folate tested?? Since these are the main things people are deficient in
Ok then, considering your on monthly injections 400 is quite low for someone with PA, I’d suggest you trying hydrox, it’s absorbed better by the body, you want your levels closer to a 1000 if you have PA.
And what are your actual folate, vitamin D and ferritin levels??….. we can give you advice if you let us know the figures
My ferritin is actually higher than the usual range because I over-supplemented a while ago and it takes ages to come down — I know that can be a cause of fatigue!, but since it’s come down so much, it’s not SO much higher than a usual level…
The only time you’d experience fatigue from high iron levels is if your ferritin was well over the range like 500ug and upwards, assuming your vit D, iron and folate are all in healthy optimal range, my guess is it’s your b12, change your b12 to hydrox and try injecting every 2 week… only thing I’d suggest is make sure your inflammation marks (CRP in the UK) aren’t high, since high inflammation can falsely raise ferritin levels
I’m sure you will get several replies about the possibility that you are undertreated for B12 deficiency. Many folk on here have needed more B12 than you are currently having myself included. I self inject as the 8 weekly IM B12 I receive from my doctor is not enough . I currently have it every 4 days . There is much info on here about treating yourself should you wish to do that. You will find a level that is right for you. Good luck
I self inject twice a week and still felt drained. So I did some research about different vitamins etc and decided to buy a high dose vitamin D even though my level was in range. All I can say is that I feel alive and have more energy than I have in years. Do some research into vitamins and minerals as it could be that you are lacking elsewhere too. Dr berg is great for understanding vitamins D. Search vit D Dr Berg on YouTube. Its important that you take vitamin D with K2. I too used to run a lot and now I'm hoping I can get back into it.
I have to disagree that "Dr berg is great for understanding vitamins". In fact he is somewhat infamous. (Not a medical doctor) Berg does not understand much about anything diet and nutrition-related.
There's no evidence that high dose vitamin D is useful for much at all other than quickly correcting severe deficiency. Vitamin K2 also has quite poor evidence for benefit and it is not necessary to take K2 with vitamin D when taking reasonable doses of Vitamin D. I would not be certain either that you would prevent hypercalcemia by taking Vitamin K2 with dangerous megadoses of Vitamin D over 10,000IU, for example. In 2023 in the UK, an 89-year old man died from Vitamin D toxicity.
I think I may have taken high dose Vit D many years ago, prescribed by my GP as my levels were dangerously low. I've never taken a higher dose than 4000 IU since then, always with K2. I don't think K2 is needed on doses at 2000 or below. I personally follow this doctor who uses vit D with his patients and am sharing an interesting video of him talking to a doctor based in Israel about his experience of Vit D and Covid.
John Campbell is not a medical doctor. His has a phd in nursing education. As a reminder for those unfamiliar with who John Campbell is and and the kind of misinformation that he promotes, this video will help illustrate:
Anecdotes from a doctor do not trump the preponderance of evidence as presented in the immunologic blog above showing that supplementation of vitamin D beyond that necessary to correct severe deficiency, is not beneficial.
Vitamin K2 supplementation has little convincing evidence of benefit no matter whether it is taken with vitamin D or not as explained in the Nutrition Made Simple video. The whole idea that it simply keeps calcium out of soft tissues and going into bone is a massive oversimplification of a complex process that is described in the presentation from Vitamin K researcher, Sarah Booth (from 26:36).
Adequate dietary vitamin K remains an approach with the best evidence of benefit and obviously means the consumption of many kinds of healthy foods.
Whoops, silly me, calling him a Dr out of habit. Yes I know he's a nurse Technoid
The claim of him being an anti vaxxer is BS. He’s one of the very few people that has given a voice to those who have been seriously injured by it & questions the efficacy of a drug that’s being pushed on us by big pharma. I trust him over pharma any day and he always includes links to the data & research so people can read for themselves.
He doesn’t claim to be a doctor but he interviews many top doctors & specialists who endorse his channel without any hidden agenda.
You seem to go to a lot of trouble to discredit Nurse Campbell and other people PAS members follow by sharing these types of videos, which I find a tad suspect. Who are these debunkers anyway?
Yes, I go to a lot of trouble because I don't want too see people hurt by misinformation. The one I posted is from Dr.Dan Wilson who has a phd in molecular biology and has done a lot of good work exposing the misinformation coming from John's channel.
Another good one to check out is Susan Oliver, who has a PhD in nanomedicine and actually appeared on John's channel in his early days (its an interesting story to look into). Her channel is:
Spend some time with these channels and you'll hear a different side to the story.
From Wikipedia on John Campbell
"He has been criticised for suggesting COVID-19 deaths have been over-counted,[4] repeating false claims about the use of ivermectin as a COVID-19 treatment, and providing misleading commentary about the safety of COVID-19 vaccines."
I disagree that your understanding which is based on your experience/expertise/perspective as a vegetarian definitive to all people including but not limited to those with PA. Oh Great One. In fact I find it harmful if anyone follows your advice when it is not applicable. Confidence is not competence.
Consider disclosing other that in your profile that you know how to treat issues arriving from your dietary choices. Also consider "I" statements instead of pportending knowledge which you do not personally have.
Your experiences are meaningful just like the rest of us. You personal choice of who you want to follow is not meaningful across the board.
Have to agree with you, Dr Berg is my go to, understands and explains all that your GP dos not,the fact he's not a 'medical doctor makes me trust him more. Check out Dr Ken Berry also so knowledgeable regarding health and diet. I suffered a kidney stone due to not taking vitamin k2 with my vitamin d as calcium build up in the wrong place ( soft tissues) instead of bones, so be aware. Your GP would never give you that information as they know s..t about nutrition as mine keeps telling me.
Yikes. Eric Berg to Ken Berry ... from the frying pan into the fire.
"For those with better to do than wade through the trial data concerning vitamin D and calcium supplements: Vitamin D does not of itself appear to increase risk of kidney stones. Calcium supplements given with vitamin D supplements appear to raise urine calcium and stone risk, and in at least one very well done trial raise the rate of actual new stone formation. The message: Vitamin D + calcium supplements may well increase kidney stones, but vitamin D alone does not seem to do this."
Fredric Coe, MD, is a nephrologist at the University of Chicago Medicine who founded the University of Chicago Kidney Stone Evaluation and Treatment Program in 1969.
It is thus unlikely that your Vitamin D intake led to the kidney stone. There are many possible causes of kidney stones. How much vitamin D were you taking?
I am having problems with my account & somehow my reply disappeared.
It is important to talk about vitamin d toxicity.
I had to take very high doses (10000 iu a day for 30 days & then 5000 iu a day for 60 days for a severe deficiency). But it was explained to me that it is important to test at three months due to the slight possibility of toxicity. It was explained to me that large quantities over time can impact the heart and kidneys.
I thought 'Okay, whatever' with a smile and followed that. And I was fine. I was barely back into the normal range.
However, a nurse that I know has told me she has treated a marked uptake of issues around vitamin d toxicity. And it is frustrating because it is simply due to over supplementation without regular testing.
You're welcome. I wasn't concerned about you. I pressed you only due to the previous conversation, that I felt did have validity for others reading along. My original post that disappeared stated I was happy you found your missing piece, Sunshine.
The doctor that prescribed the temporary high doses for my severe deficiency (19/7.6) let me know how it can affect other organs, in prolonged high doses.
I thought it was alarmist when I was first told. I found it clearly is not. And good information to have out there, during these kind of back & forth discussions.
Quite simply you’re likely under treated for PA and maybe also need to check levels of folate, ferritin, vit D, etc. It’s not about getting your B12 blood levels just high enough, it’s about treating frequently so your levels are very high and your body can grab what it needs consistently, forever. And maybe not being able to exercise hard unfortunately for some of us.
I long for the days when I can go back to harder forms of exercise. Oh the feeling!
In the beginning I would still do it, not quite the same but close. But choosing that meant I would be D.O.N.E done for two to three days.
Exercise recovery, sudden lack of, was such a very clear sign for me, that something was very wrong. I used to chirp it at my doctors over and over. To blank - probably filled with judgment - faces.
This is so validating for me (if unfortunate for us both) — yes, I do remember what it felt like to be tired after a long, hard workout! It wasn’t anything like this, where the absolute worst parts — not feeling sore, but feeling utterly drained — don’t have an onset until much after the acute activity, and take a whole day to recover from.
It is so frustrating but there are a couple of posts here that have given me hope. Five years in I am now suddenly burning my fingers peeling eggs (great sign!). So there are still improvements to be had in this journey. May exercise recovery be the next one.
❤️🤸❤️
(I would say, May we do a series of cartwheels soon but I remembered I am so not skilled at them. 🤩)
I can't find any answer above to your ferritin level. Low ferritin and therefore low iron stores without apparent anaemia are often part of the PA profile. And the symptoms are very similar.
So — interestingly, I’d over-supplemented iron in the past, and my ferretin is still over reference range (albeit better than it was a year or two years ago, when it was sky high). I know this can contribute to fatigue, but I’m used to it taking the form of headaches and daily fatigue (rather than sudden but debilitating bouts of fatigue after a series of exercises/errands)…
Can you explain a bit more? I find it very odd that all my numbers are absolutely fine, but my hemoglobin tends to be just one or two points into our norm here. I think our ranges are 120-160 and my hemoglobin sits about 121, 122 often. Yet all the other numbers are well into normal.
I wonder about it every now and then but am aware of overload/hemochromatosis. And that stops me from experimenting.
Also, I did have a couple of blood transfusions when my hemoglobin was around 68 (ill). I am sure that means nothing now, as it was taken care of back then with the transfusions.
There is a condition, ferritin deficiency without anaemia which can be part of the PA profile. It is recognised but not treated by most GPs. That's why I had a ferritin infusion followed by heme iron, which I still take and will continue. My haematologist recommended this. If your blood counts don't indicate haemachromatosis then, if it were me, I wouldn't worry about iron supplementation.
I'm not medically trained but I'm guessing that exercise would use up B12 faster.
Have you considered having B12 injections more often?
There are forum members who inject weekly and even daily...we're all different.
In UK, the NHS usually uses hydroxocobalamin for B12 injections. I believe this stays in the system for longer than cyanocobalamin.
Do you know your folate, iron and Vitamin D levels?
Forum members often report deficiencies in these or less than optimal levels.
Has your doctor ever checked your potassium levels?
Some people can experience a drop in potassium levels when B12 treatment starts.
It's also quite common for forum members to report thyroid issues. Have you had tests to check your thyroid function? Might be useful to post thyroid results on Thyroid UK forum on HU.
Pernicious Anaemia Society (PAS)
Did you know that PAS accepts members from across the world?
So helpful as always, Sleepybunny! (I’ve been an occasional lurker/poster for about three years now.)
Yes, potassium and thyroid et al. are all normal. My only above-average value is ferretin (from oversupplementation). I’ve been waiting patiently for about two years for that value to go down (since I know too much iron can contribute to fatigue just as much as too little can), but I’m more used to the more acute effects of too much iron (the headaches and daily fatigue vs. the overexertion fatigue).
Including a picture of my very own sleepy bunny to say thanks for the resources!
"My ferritin is actually higher than the usual range because I over-supplemented"
Ferritin is a form of iron that is stored in the body.
There are several possible causes of raised ferritin including
over supplementation
inflammation in the body
a genetic condition called Haemachromatosis (Hemachromatosis in US) which can lead to iron building up in the body's tissues. Symptoms can include fatigue, joint pain and a tanned look to the skin.
I'm just mentioning this in case there might be more than one issue causing raised ferritin levels.
A level of 400 sounds low to me if you’re having B12 injections. The last time I was tested mine was above the upper limit provided by the lab (I can’t remember the actual figure but it was 2 or 3,000 at a time I was probably having monthly injections).
When I was first diagnosed, I was unable to exercise to any extent due to exhaustion and the lack of will to do it. It took about 18 months to 2 years of increasing frequency injections to get my fitness back. Some years down the line I now si hydroxo twice a week and I’d say I’m as fit as I’ve ever been.
I don’t find that I need more B12 the more I exercise, I stick with the same twice weekly routine, the day before my main bike rides on Weds and Sun each week. On Sunday I did a 230km cycle event, felt fine on the event, very tired on Monday (normal I think) but still ok to meet friends for a walk of around 6 miles in Kew Gardens. Today (Tuesday) I’m feeling lazy-ish and am catching up on household stuff but I don’t feel any crushing need to have my injection yet, I’ll have it tonight.
So if I was feeling as you do I would increase the frequency of my injections. I started off with every 2 months, then monthly, then weekly and finally settled on twice weekly which has allowed me to feel fit and active.
I do subcutaneous injections as I don’t get on with injections in my thigh which have always felt very painful and tend to bleed. I did try sublingual tablets and also B12 sprays but neither were any help.
Good luck to you, I hope you find the solution you need.
Yes, I can see the logic of SI…like so many people, though, I hate needles and I’m so bad at it! (When I say I murdered my thigh for my most recent injection, I mean it — I stabbed myself about 23 times before I was able to sink one in.)
Have you tried the nasal spray at all? And do we know why high-dose B12 oral supplements don’t tend to work given that the cure for PA before the synthesis of the vitamin in a lab was just to eat raw liver? (🥴)
Good to know that being active once more is possible if I really want it!
I haven’t tried a B12 nasal spray mainly because sublingual doesn’t work for me so I’ve assumed a nasal spray would be no different.
I might be wrong as I have no medical training but I’ve been under the impression that eating raw liver kept people with PA alive. However, that’s very different from feeling well and living a full and active life.
It may well be (looks that way) that your B12 is still very low and that is causing this issue but....I have an athletic friend who became unable to exercise without getting headaches and cold like symptoms/exhaustion afterwards. She felt fine doing the exercise but eventually had to stop because it took her so long to recover. Turned out she was caeliac and after cutting grains and seed oils from her diet she was able to swim 4 miles in the sea with no ill effects. Just a thought.
My doctor tested for Celiac two years ago (was trying to figure out some gut pain I ultimately think was nerve-related — yet annother symptom of B12 deficiency) and I think I’m in the clear. VERY happy about this!, as I’m a vegetarian and the half of my diet that isn’t cheese is bread or pasta of some kind .
What tests did your doctor do for coeliac disease (celiac -US)?
In UK, usual tests would be
tTG IgA test - looks for a particular antibody to gluten.
Total IgA test- checks if person has IgA deficiency.
A person with coeliac disease can get a negative result in tTG IgA test if
1) they have IgA deficiency
There are other blood tests for coeliac disease if person has IgA deficiency.
2) they were not eating enough gluten prior to their blood being tested.
In UK, patients are usually told to eat lots of gluten in more than one meal per day for several weeks before blood is tested. This is sometimes called "The Gluten Challenge".
Eating lots of gluten for several weeks before test should mean lots of antibodies to gluten in the blood of people with coeliac disease...hopefully ensuring a positive test result in tTG IgA test.
I don't follow a regular schedule anymore. I just judge where I am at.
However just recently I did run into an interesting situation. I had had my bike in a couple of times for some repairs. And when asked by a friend I replied that something seems very off with the bike. It just doesn't feel the same at all since the repairs.
Well guess what?
Without new shop visits suddenly the bike was running just fine.
And I went Huh?
It wasn't the bike. It was a random b12 shot.
I guess I am not good at determining when I need it, despite such confidence.
My husband does injections for me into my arm. I suspect you would do better either with having injections more often, or more often when you plan to be active. I am very active- I play ice hockey 5-6 times per week when I am not skiing. I also have several dance classes per week and ride my bike a lot. I use weekly cyanocobalamin injections and am not getting your crashes. If I wait 3 weeks, my toes can start getting tingly. If you are still absorbing a little, then 1000mcg sublingual B12 might help to keep your levels steady. I was able to just use that for many years, but now I need injections (currently age 63). Your fatigue could be something else, but it might be worthwhile to try more frequent injections to see if it solves the problem. It usually does not hurt when my husband injects into my arm. Sometimes it hurts a little bit.
I feel I and only I can determine when I am experiencing fatigue from any activity.
A dynamic for me is that although I do not feel fatigue during the activity I experience the fatigue later. I express it as the difference between being tired which resolves with sleep and rest where as the fatigue gets worse.
I use the concept of plateauing from my current supplementation. That happens when I increase my activity or life increases it for me and I become fatigued. I then change my suplimentation to increase my ability to do more. I live with having to supplement not limit my experience of life.
When I change my suplimentation and it is positive I experience a quick uptick followed by a downturn as my body adjusts and if it resolves I do not consider it a side effect. This includes being emotional for a while.
I use levels to check toxicity not as a measure of how my body is experiencing the suplimentation.
As far as tips and tricks I have none. I study and evaluate then design a trial and evaluate the results.
The efficacy of the different forms has not been tested other than retention times in 'healthy' people. I find methylcobalamin with adenosylcobalamin to be the most effective. I have found cyanocobalamin and hydroxocobalamin to be equivalent for me.
I see when I am fatigued as inflammation. Note: When I am experiencing inflammation my injection sites become more painful and may be red for a short while. I find subcutaneous to be effective and less disruptive.
I found Betine and NAD to be very effective for me and am currently working on a design to further enhance my metalation pathways.
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to say thanks for the resources!
8 years of anemia despite PA diagnosis and consistent treatment
Can I have PA (pernicious anemia) even with normal B12 amount test results?? I have many of the symptoms!! plz help
New to asking for help
Blood test waiting period after taking high strength B12 sub-lingually for a couple of years?
