As soon as possible. I think my vitamin will reach me next Tuesday, maybe Wednesday. And I hope that the Germans packed it so well that it will not be damaged in transport. Vitamin B12 should be stored at room temperature, up to 25 degrees Celsius (thank God for a cool spring in Central Europe).
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Just wanted to let you know that I got my first injection of 1.5 mg of hydroxocobalamin (exactly hydroxocobalamin acetate) yesterday. This is a bit surprising because this form of B12 worked like sleeping pills for me. Even now, when I wake up, I am still very sleepy. Besides, I have a slight headache (but much less than after the cyanocobalamin injection). Surprisingly, increased sleepiness, which is not an uncommon effect of this treatment, was also experienced by @lakehouse. In any case, I am going to continue the therapy (2 injections a week for 3-4 weeks, and then one injection for 1-2 months) and wait for the results - I hope positive.
I have mid-normal range vit B12 and still supplementing it, because i suffer of
So, as I understand correctly, for you this type of anemia is caused by a deficiency of folic acid (I assume that then folic acid supplementation is more important to you than vitamin B12)? If so, what form do you take folic acid in? This is important because a lot of people here have a problem with methyl.
Folic acid and/or vit B12 deficiency causes megaloblastic anemia. But my folic acid is just higher thaan normal, so to me vit B12 (is normal mid-range) should be supplemented
Keep us updated.
Is it helping with sleep?
It’s hard to say because I have had no problems falling asleep for several years. And with sleep duration as well - I sleep about 8 hours a day. The bigger problem is waking up my mind in the morning. Most of the time I feel like I am not sleeping at all.
At this point in time my situation in pretty similar to yours, sleep-wise.
I get my 8 hours, but it’s not as resting as it was before FIN.
I’d have to say though, sleep is probably one of the few things that’s been progressing for the better
I want to clarify my sleepiness
Before I started hydroxycobalamine treatment I had chronic fatigue symptoms and was drowsy in the afternoons and would pass out/sleep
Then I would wake up and still be tired
The b12 injections made this symptom worse for the first month
Then the symptoms suddenly went away and never came back
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Thank you @lakehouse for explaining more about your response to B12 treatment. I cut it down excessively - someone might think the hydroxocobalamin just made you sleepy, with no benefit. Anyway, my second injection didn’t make me very sleepy. Admittedly, I don’t feel any benefits yet, but I understand that I really need a little more time.
I would add that yesterday I had an appointment with a doctor who (surprise) does not link my health problems with the use of finasteride, especially since it was 9 years ago. Funnily enough, I also printed and showed the most important research from the PFS Foundation, but it didn’t help. The doctor said that “this is just some research from America, and they invent various strange things there”. So, since these studies are not from Poland, we do not recognize them. He only forgot that Polish universities and Polish scientists have essentially no meaning in world science (I mean mainly the Shanghai Ranking or Highly Cited Researchers). In fact, the only good thing about this doctor was that he took my time and promised to find a good neurologist.
I would also like to add that I got my homocysteine result, which is 4.83 µmol / l (5.46 - 16.2).
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Science at its finest.
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Hey man, how’s your B12 supplementation going?
So far, the results are at least promising. I have already taken 7 injections of 1,500 mcg each. I wrote elsewhere that vitamin B12 gave me more energy to run. Before, I felt like I was choking while running. I don’t know if it’s because of the B12 or it’s because of running every day, but I’ve made a few notable improvements:
- I almost got rid of my anxiety;
- the body is much warmer, especially the hands, feet and testicles;
- begin to show the veins on the hands;
- the digestion rate has increased;
- flatulence is less;
- fat on the face, chest and abdomen decreased;
- headache has decreased;
- daytime sleepiness is not so troublesome;
- I am starting to feel a kind of relaxation and pleasure.
So maybe all of this is due to aerobic training, but on the other hand, if it wasn’t for B12, I wouldn’t have the ability to run every day. In any case, I try to be patient as the full effects of treating neurological degeneration may not become apparent until several months after receiving the injections.
I hope you are better too.
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That’s very great to hear, man, I’m glad it’s benefiting you.
Keep us posted.
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Hey man, how are you doing?
You mind sharing an update with us?
Sure! Under normal circumstances, I would say I’m an idiot, but I try to be understanding with myself. I’m already explaining what’s going on. As I wrote before, it was probably because of vitamin B12 that I could start jogging at a good pace. For the first time in 6-7 years, running was so good and unfortunately it turned out to be too much for my body. My mistake was that I couldn’t stop; it was too strong for me. Well, as I wrote before: it was a really beautiful and unnoticed feeling for a long time. My legs were really strong and fast again. Anyway, I’ve been in much worse shape for the last few days, by which I mean strong brain fog, anxiety, a drop in libido and sexual ability to 0, as well as severe pain around the adrenal glands. Basically, this adrenal pain is the best indicator of my health in recent years. If adrenal pain worsens, my overall health worsens (especially my brain fog). I experienced this pain for the first time in 2016 and was then very scared that I had Addison’s. I did some tests that didn’t show that I had Addison or Cushing - unfortunately I didn’t have the cortisol synacthen test because in my country such tests are performed in a hospital where I was not referred. My doctor decided that my tests (electrolytes and morning blood cortisol) and symptoms (no yellow skin tone) showed no Addison’s. After five years with more or less severe pain in the adrenal glands (I am writing about the adrenal glands, not the spine or kidneys, because this pain only increases when I am excessively stressed and exercise - similarly it decreases when I am relaxed and stress-free) I think that however, it is some form of adrenal insufficiency that is difficult to control. I think if it were Addison, after the first severe pain in 2016 and not having “treated” the disease for 5 years, I would have been dead long ago.
In any case, I am still a moderate optimist. I guess in the next 3-4 days my body will recover a bit and I will be able to continue exercising, but I need to exercise really lightly. 10-15 minutes of light jogging each day should benefit me. I just have to find a balance. Not exercising is bad for me, but too much is worse.
PS. congratulations on winning the european championship. Sad you can’t enjoy it as you should.
Thank you.
So you’d say that Vit B12 is still helping, but you need to slow down with excercise?
Are you still supplementing?
Exactly. For a while I thought that the vitamin B12 deficiency might be the root of my problem (or a very important part of the problem), but unfortunately it is not. B12 turned out to be very helpful, but I still have to be careful about overloading the body (I’m thinking about excessive exercise, stress, bad food, excitement and basically everything that puts a strain on the body, especially the adrenal glands). In short, I have to try to remain a stoic or a Zen master and not allow any emotions. Thanks fin!
Believe me, man. I know the feeling.
I was a hell of an athlete, I now run out of breath if I take the stairs.
I’m sorry this is happening to you. But hey, if you think that B12 somehow improved your baseline, that probably means your body has the potential to get better. I don’t know.
I think that on the one hand, for some of us - who love sports in the good old life - the current condition is fucking bad, because it’s hard to come to terms with a disability (which is not visible in tests) at such a young age. I think it is also for this reason that I have not been able to resist the hard exercise recently. It’s just that my athlete soul missed it so much.
But on the other hand, we know our bodies better and it is harder for us to believe in the doctor’s assurance that “we are fine” or that “it’s all in our heads.” I’ve always been muscular, athletic, and when I came to the doctor after a crash with a heavily fat body and weak muscles, he just found it was normal. And he went on to say so when I tried to convince him that I was always healthy and fit and never had gynecomastia, fat on the sides of my stomach etc.
I also wonder where it is “better” to have PFS. I guess I can get a bit “lucky” living in Eastern Europe where there are lots of sad people. I think it is easier to hide it and function than in southern Europe, where there are a lot of smiling and extroverted people. Sometimes I think all of Central and Eastern Europe is a light PFS.
As I wrote earlier, I am a moderate optimist. I just need to find a balance between stillness and activity. Though it’s gonna be fucking hard. I think the B12 did something good, but it’s not strong enough for me to say that I have jumped permanently to the next level.