The idea that B12 needs may alter with activity has been on my mind for some time. . . . . . Its like I can manage to do a little every 2nd day and then one to recover. . . . . . . I got a few things done yesterday but today I am wrecked. . . . . . I have also noticed that if I have a good day as in one I get a lot movements and things done I have difficulty sleeping as in all night until maybe 6am. . . . . I must pay more attention to this. . . . .
Absolutely. When I first started recovery, showering would exhaust all energy despite a full night sleep.
Each day I slowly got more energy but ever so slight. Before I knew it, I was walking a mile a day. Easy going mile.
But until then I had to be good to me self. Not feel guilty but just work smart cutting out everything but only the absolute necessities.
I could only keep one item in my head for a grocery list. Having to write EVERYTHING down. Now I don't need to write lists.
The recovery is possible. There is hope.
This spell reminded me I'm not in the clear and still have a real problem. But I believe it can be managed with not skipping injections and double or triple dosing when I exercise a lot.
I do hope you enjoyed your holidays and get back on track. Lesson learnt and you know your body best.
Your hike through Patagonia sounds amazing. Feel free to post a picture. I feel people need to know these things. To share the positive that we are capable of having a fulfilling and rewarding life. Plus, our accomplishments.
for this I trained by 3 weeks of walking 9 miles a day 5 days a week with anywhere from 10-15 lbs.
I was injecting 3mg (1.5 in the morning and 1.5 in the day for months prior and during. Avoided alcohol. ) Prior to this training just walking daily.
This really should inspire.
Again I started out bed riddden. Injected for a year before I could walk a mile. Would just do whatever I could as anything extreme would set me back so I learned that it is best to do light exercise and very gradually increase. Nearly two years after starting injections is when I started doing hikes in the mountains but only periodically. I'm no athlete, but I do like to be active. The hikes would deplete the b12 so I started increasing injections and was able to do more. I wanted more because it just felt good and I guess my fear of loosing muscle if I don't use it. It seemed the exercise , even the mild sort seemed to help circulate and metabolize the b12 as well. Seemed like my body was more receptive. Anyway it's about that there is hope and if b12 deficiency is the issue b12 injections really make a difference.
Back pain and brain fog were my first two symptoms of b12 deficiency nearly 4 years before I was found severely low, then later followed by severe fatigue as we all know.
Yesterday, I felt pretty good. So I defrosted the freezer, did the ironing, tidying through and cleaned the fishtank (its 5ft by 5ft by 2ft, so not a small task)
Today I'm living in sofa land, watching the fish 😴
So yes, doing more certainly uses up the red bull (B12)
I really appreciated your post because I do sometimes skip my jabs and I live to regret it a few days later. I also have to vary my dose to activity or again I live to regret it a few days later.
Living essentially symptom free for me means jabbing daily whether I feel I need it or not - these slip ups as you describe pull me up and re enforce my need for several jabs a day.
Thank you so much for sharing and I hope you soon recover to where you were pre holiday.
I have a delay thing. I could go flat out the rest of the day and would not be affected for 12 hours. If I go 7 hours without injecting I can tell in about 12 hours.
It does not correlate at all to what is thought to be true about B12.
I always do a risk assessment before I make a change.
I also 'stabilize' from a trial before I design and try another.
I do consider percentage of increase in total amount when I increase and when I do a trial with another form the new trial is the same amount.
I have not found B12 to be benign and after starting new trial I have experienced an uptick followed by a period of disruption as my body adjusts.
My last trial which is 24 hours and counting so I am in an uptick phase I decided to take it easy instead of going with the excitement of the uptick and doing more.
My dr has just dropped my thyroxine and I’m shattered . I run , and my resting heart rate has already dropped . My work load is tiring as I’m short staffed . I’ve increased my B12 injunctions but perhaps I should go back to increase my threonine . The symptoms are so similar it’s hard to tell which one I need . 🫣
Why did the dr. decrease? What is your FT3, FT4 and TSH?
Resting heart rate decrease might mean you are under-medicated. I am not an expert on thyroid issues, but you should post on thyroid forum to get better advice.
I don't think increasing your B12 injections will help. As I said, more B12 is needed when we increase thyroxine. Conversely, actually you need less B12 now and can decrease the frequency now and increase it back when/if you increase your thyroxine dose!!!
I ment go back to drs and explain how I’m feeling since drop in thyroxine. She said it was still a little high but I’ve always felt better when it’s higher rather than lower . But went with it , new drs and my old drs didn’t do annual checks on bloods 🫣 it is a different tiredness at the moment . I just need to pull my finger out and do it 😂
You should certainly get opinion from the thyroid forum. From what I understand, TSH is not that important once on thyroid meds. What is important is FT3 and FT4, with FT3 being the most important as that is what the body uses ultimately. Often, we are not good converters from FT4 to FT3, so FT4 and TSH can be high while FT3 can be low. In any case, if you were feeling better on the higher dose, just go for it. I think this is the advice that the thyroid forum will also give you. BTW, TSH should be below 1 ideally, although I am on 50mcg thyroxine and TSH of 4 and feel fine and don't intend to change anything.
I will go on will get my test and see what they say . I’ve got another check on blood in two more months . I had noticed resting heart rate drop but it’s not dropped yet as much as last time . Thank you for suggesting thyroid group .
I hope you get the balance right for you soon. I have PA and hubby has (currently) untreated Hashimoto so I am following both forums to learn.
I am interested in what you said about a “different tiredness” as I know exactly what you mean - I see “normal” tiredness as a temporary shallow feeling and then there’s the deep “different” tiredness that takes longer to recover from.
Have you considered maintaining B12 levels so then at least you know which is likely culprit? Excess B12 is peed out anyway is it not? You may get a double dip if you decrease B12 as you sound enviably active!
My resting heart rate definitely decreases when they drop it . It went wrong when I went in HRT had to come of it so still trying to get balance with thyroxine which I felt I had done . At the moment I’m tired tired and brain fog not able to concentrate properly need to totally try and focus .
Yes! In the hot weather last year I ended up in A&E with suspected heart attack - checked out fine - so reassured the following week I did exactly the same (loading and carrying hay nets in blistering heat) BUT increased the B12 and not a twinge and managed well. 😄
So yes, a good observation and heat is one of my “increase B12 factors” in my personal health notes I keep for myself.
Good question! I did in fact inquire with the pharmacy and it was prescription only in Italy. WTH?! I was only in France for one day and thought nothing of handling it then as I was one day away from being home. Should have checked just for the sake of getting the info though.
And again, I didn't feel the effect until 2 weeks later.
Wow that level of physical exercise and lifestyle sounds amazing. How long on b12 before you improved? Did you start on the higher dose straight away. Do you take other supplements?
2 years of daily injections. Actually when I started increasing the exercise I started doing 1.5 mg twice a day for a total of 3mg daily. That was about 2 years in.
I was seriously bed ridden and barely surviving the first two years.
I also didn't have to deal with anything else like others do such as thyroid or iron deficiency.
first sign was back pain and brain fog. I would get confused when driving through intersections where I would second guess or flat out blow a red light.
Went undiagnosed for 4 years.
I ended up with sciatica, numbness of hand and foot on the right side. Couldn't walk a mile due to the sciatica.
Loss of appetite. Starving yet didn't want to eat.
Weight gain which I lost after I got better 2 years later.
Severe fatigue to the point that a shower would exhaust me even after a good night of sleep.
Severe brain fog to where I couldn't remember names or formulate sentences.
High resting heart rate and palpitations.
It took injecting daily for a year before I could start doing daily things. Maybe walk a mile.
It's a slow process of recovery.
And during that recovery, I had to learn to be ok with doing absolutely bare minimum.
Gaining weight.
Not being the super star at work. I'm a software engineer and there is a lot of demand to learn and compete.
Damn lucky I didn't loose my job.
Before I got better I was very afraid that I would never get better. I mean one feels so bad that it seems impossible. I feared loosing my career and income. I live alone. No one pays my bills.
I felt insurance disability would not recognize b12 deficiency.
But 3 years later, I still have some symptoms but I'm still working and quite active and feeling good up until I recently screwed up and depleted my b12. Set me back. Still trying to feel normal after a month. But I know it's a slow process and unlike before I can do things, just not a lot of exercise right now as I want to build back that b12.
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