I was feeling slightly better yesterday. Have been doing SI of Hydro every other day for about a month and added in folate 400 mcg. I pushed myself to be really active yesterday the way I used to be and today feel terrible. I woke frequently through the night from 1:00 AM on and had trouble going back to sleep.
I have had a few short 10-15 minute naps and feel tired, weak, and almost flu-like.
Does this sound like normal responses to activities? I have only just started adding in Folate, could that cause this? Any ideas are appreciated!
Sita
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Sita505USA
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Hi Sita505USA Yes replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed and it's good you have started with folate.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years during which time I have had to learn how to "pace" myself (since I was 30 years of age with two daughters under six) knowing that I will soon become exhausted if I overdo things.
Have you heard of folks having an allergic reaction to hydrocobalamin injections? I was using Cyanocobalamin without any problems, since starting the hydro I have refrigerated it and the injections hurt and sting, have left lumps, and now I have gotten a red and itchy rash. Do you think I should be ok with going back to the Cyanocobalamin? Thanks, Sita
Yes and I am one of those who had an allergic reaction to Hydroxocobamalin when it was first introduced in the 1980s and so have continued with cyanocobamalin now for 46 years.
Sadly the U.K. National Health Service (NHS) has withdrawn cyano from being able to be prescribed by our doctors over here so I don't know what will happen to me after September when I "run out" of the five vials I still have.
Hydroxocobalamin Side Effects
Get emergency medical help if you have any of these signs of an allergic reaction: hives; chest tightness, difficulty breathing; swelling of your face, lips, tongue, or throat.
You may develop an acne-like skin rash within 1 to 4 weeks after you are treated with hydroxocobalamin. This rash should go away without treatment. Call your doctor if you have a rash that lasts longer than 4 weeks.
Call your doctor at once if you have a serious side effect such as:
bright red blood in your stools;
chest pain, fast or uneven heart rate;
severe shortness of breath, wheezing, gasping for breath, cough with foamy mucus;
swelling in your feet or ankles;
a light-headed feeling, like you might pass out; or
dangerously high blood pressure (severe headache, blurred vision, buzzing in your ears, anxiety, confusion, chest pain, shortness of breath, uneven heartbeats, seizure).
Common side effects may include:
nausea;
headache;
acne, skin rash or redness;
red coloring of your urine (may last 2 to 5 weeks); or
pain, swelling, or irritation of your skin where the injection was given.
It could be that you are allergic to one or other of the "excipients" (or ingredients) of the hydroxocobalamin injections you are having.
List of excipients
Sodium dihydrogen orthophosphate
Sodium chloride
Sodium Hydroxide (for pH adjustment)
Hydrochloric Acid (for pH adjustment)
Water for Injections
.
Hopefully Sita505USA your adverse reaction will subside over time as is suggested above.
I'm not sure about the itchiness, but injecting anything cold will be more stingy than if you warm it to body temperature. I pop my ampoules in my bra for a few minutes before I inject them (fabulous advice I picked up on here :)) and they don't hurt at all!
I’m very active now that my B12 injections and co factors are being well managed. However, I have found that there is one overriding rule and that is to listen to my body.
If you were feeling only slightly better but pushed yourself to be really active the way you used to be I suspect you’ve overdone it.
Start slowly, build up gradually and never do more than you can comfortably do without pushing. My experience shows that trying to do too much too soon leads to setbacks.
Using a lot of B12 doesn’t increase the body’s requirement for folate after the first few weeks. You will be beyond that by now, and folate levels don’t need to build up over time, so I wouldn’t blame the lack of folate for your fatigue.
I know how you feel. I’ve been injecting twice a week for several months, and once a week for a year or more before that.
Last week I went around our local nature reserve. It was only a 3 km amble but it still wiped me out for the rest of the weekend.
We moved house yesterday. Today I am shattered. I can manage to move thee boxes of CDs or sort through one bag of clothes, then I have to lie down for an hour.
What JanD236 says is right. Listen to your body and don’t push yourself. Build up slowly. Two years ago I would have been incapable of walking 1 km but I’ve been slowly increasing he distance.
Thanks so much for responding. I just don’t know how B12 deficiencies, PA, differs from ME/CFS. I thought post exercise malaise, PEM, or feeling terrible after exercise or exertion was the distinguishing factor in ME/CFS.
I don’t have a definitive diagnosis, due to supplementing before blood tests, so I question whether or not I have PA or ME/CFS.
I also thought that once getting the PA under control, that I could get my active, busy life back.
Can other folks weigh in on their experience with PA, and whether it is ever possible to get levels corrected and get life back to normal?
I have not been taking any folate prior to the recent supplements and since I’ve had stomach surgeries, I believe that my absorption from food is impaired.
I have been self injecting every other day for 7 months & twice a week injections for 6 months before that. My energy levels are vastly improved & I walk the dog for an hour each day now, but anything like strenuous exercise wipes me out for days. I’m really hoping this isn’t permanent, but have had to learn to pace myself & listen to my body.
Picking up on your comment about hydroxocobalamin - there is no need to keep it in the fridge as long as room temperature is below 25. However, it does need to be kept in the dark (in its box in the cupboard is fine). Also, top tip is to hold the vial in your hand/next to your skin to warm it to body temperature before injecting. Inject really slowly & you should avoid the sting!!
My B12 odyessy started with a low iron diagnosis. My B12 deficiency diagnosis came about a year later. After starting B12 shots I had much more energy but I would, like you, get wiped out if I exerted myself too much. Because I was so focused on getting my B12 levels fixed I forgot about my anemia and, of course, my doctor never mentioned it to me during my visits to his office. I had some blood work done in the spring and noticed my iron levels were pretty low so I started taking iron supplements again. That has really perked me up. The combination of monthly B12 shots and iron supplements seems to be what I needed. So, maybe you should have your iron levels checked. I know too much iron is bad for you but not enough is also bad.
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