So it's been 2 weeks since I was diagnosed with low B12 (159) and began supplementing B12 daily (my full story here: healthunlocked.com/pasoc/po...
In the last 2 weeks, I've had 10 B12 injections (5 methyl and 5 cyano) while simultaneously taking oral B12 (alternating between sublingual and pill with cyano, methyl, and methyl/adeno). I've felt some improvements. My wasted left leg has been gaining stability and strength, I've gained a small amount of weight, and the initial neuro issues I had when I started supplementing (pins and needles, confusion) have resolved. On the flip side, I feel like my digestion has gotten worse with the bloating and constipation. I'm planning on scaling back the injections starting this weekend to twice per week from every other day here shortly. I'm also going to stop the oral supps as I feel like crap after them (crawling skin, twitching, poor digestion) while I feel great after the injections.
I went to the hematologist today for the first time and I got a good one (in detail update on my story page above) and he did a CBC in the office and I got the results right away and I'm confused at the unexpected results. A lot of the values got worse since I started supplementing surprisingly. I'll list out where the number started at below. The first two were done by the same diagnostics lab while the third was done in the doctors office today.
April 15th (No Supplementation)
White Blood Cell Count - 3.1 (Normal 3.8 - 10)
Red Blood Cell Count - 3.93 (N 4.2 - 5.8)
Hemoglobin - 12.7 (N 13.2 - 17.1)
Hemocrit - 36.2 (N 38.5 - 5.0)
MCV - 92.1 (N 80 - 100)
MCH - 32.3 (N 27 - 33)
MCHC - 35.1 (N 32- 36)
Platelets - 197 (N 140 - 400)
May 1st (Day 1 of Supplementation)
WBC - 3.4 Low but better (good)
RBC - 3.96 Low but better (good)
HGB - 12.7 Unchanged (neutral)
HCT - 36.6 Low but better (good)
MCV - 92.4 Normal but higher and worse (BAD)
MCH - 32.1 Lower and better (good)
MCHC - 34.7 Lower and better (good)
Platelets- 151 Lower but worse (BAD)
May 15th (Today, Day 15 of Supplementation)
WBC - 3.6 Low but better (good)
RBC - 3.76 Lower and worse (BAD)
HGB - 13.1 Higher, normal and better (good)
HCT - 36.2 Lower and worse (BAD)
MCV - 96.4 Higher and worse (BAD)
MCH - 34.8 Higher and worse (BAD)
MCHC - 36.2 Higher and worse (BAD)
Platelets- 168 Higher and better (good)
I cant make sense of these test results. You'll see that from the first test to the second, things improved marginally with no b12 supplementation. Then from the 2nd test to the 3rd, more values got worse than got better even though I've been soaking my system heavily with all different types of B12 for two weeks. Shouldn't things now be beginning to improve? Now that I have clinically high MCH and MCHC, this confirms macrocytic anemia and a B12 deficiency. This is supposed to be fixable with B12 supplementation but it's going the other way for me...
If there is any insight anybody could provide, I would definitely appreciate it.
With love.
Written by
lownskater52
To view profiles and participate in discussions please or .
I've done some more research and I may be exhibiting signs of hypokalemia. I'm weak (have only been able to do half as many pushups or any exercise for that matter), fatigued (sleeping 9 hours a night and still being tired in the middle of the day), I'm seriously bloated and every time I take b12 I've been getting twitching all over. I'm twitching right now all over. Hypokalemia develops with b12 supplementation due to hematopoiesis (creation of red blood cells) using large amounts of potassium. If I'm low on potassium, I'm not going to be able to create as many red blood cells, hence the worse numbers. I may go get checked out here soon to ensure I'm not in any danger.
I just had three 250ml bottles of raw coconut water. Hopefully that helps.
I am vegan and eat mainly high water content fruit and salad daily. I get plenty of potassium and have never had an issue with it before. I'm pretty sure that's what's causing my symptoms now though. The lack of potassium in the system might be causing the slower positive results from the macrocytic anemia.
I'm cramping in the legs, have muscle twitching all over, and have been severely bloated/constipated since starting supplementation. I've been aggressively supplementing for 2 weeks with daily oral/sublingual b12 as well as 10 b12 shots in 14 days. I'm going to take off a week off of b12 at a minimum and drink a lot of coconut water. I'm not sure if I should go to a critical care doctor or not.
You don't say if you've had your thyroid function checked. The usual causes of a rising MCV [and MCH] are either deficiency of B12, folate or both, but reduced thyroid function can manifest itself with a rising MCV.
Thyroid problems can be difficult to diagnose because the symptoms vary a very great deal.
Don't stress about the MCHC, as it's not a very good test to follow these days. The MCH is probably one of the more reliable indicators, for some tedious technical reasons which I won't go into here!
I had my thyroid check less than a month ago and it's running fine. T3 T4, TSH, Free T4 all good (got the test results myself, all in the middle of the ranges). Never had a problem with it. Folate has also been tested recently and was well above optimal (20). The doc and I are pretty sure is b12 related.
Middle of ranges often indicates beginning of hypothyroidism. The majority of normal healthy people have TSH around 1.2 - hardly any healthy people have TSH over 2.5 - and most have free T4 and free T3 above mid range. The TSH curve is not a normal distribution, it's very skewed, with most healthy people at the left side/start of the curve
Your results do not indicate macrocytic (large cell) anaemia. Your MCV (the size of your red cells) Is well within the normal range at every measurement.
A very slightly high MCH and MCHC do not 'confirm' macrocytic anaemia or a B12 deficiency. There are other possible causes.
My serum b12 (taken one month ago prior to supplementation) was 159 (low). My foltate was 16 (fine), and my iron was 122 fine. Took these results to the hematologist today and he was pretty sure about b12 deficiency. I've been writing my "adventure" about my situation on this forum for 2 weeks now. One of the best support forums I've ever been on.
We’re you supplementing with b12 prior to your symptoms- I assume you know that there is little if any b12 in a vegan diet unless you either supplement or eat vegan food supplemented with b12.
That’s why you’re b12 deficient! I had an almost vegan diet and my doctor proscribed omaprezole which I took for over six years. I have been suffering the consequences of b12 deficiency for around four years and have been quite ill. Touch wood, I have less symptoms now and maybe on my way to a life without symptoms.
B12, in my case, damaged the myelin sheath which coats the nerve endings throughout ones body hencevyou can get symptoms just about everywhere.
You should have had loading doses until your symptoms improve then unjectionscevery 8/12 weeks.
Wow. We have a remarkably similar story. I tried prilosec back in 2010. After 5 days on it I was devastatingly ill with high blood pressure, confusion, and terrible digestion issues. I remained sick from it for 3 years as it never left my system. I fasted for 28 days on water only and started a raw vegan diet and felt great again. 7 years later I've become b12 deficient and I believe it could have even started when I was sick on prilosec. I know I have a long road to go with getting my b12 storage levels up and symptoms resolved. The hard part is staying positive.
Wow. Really glad I went to get check as it cleared up a lot of information about my past tests and my current issue with potassium.
So the big picture is that my previous CBC test yesterday was probably invalid or in error and that I am indeed losing a good amount of potassium as I aggresively supplement b12.
I went to the doctor this morning and he took another CBC and a BMP (Basic Metabolic Panel). This was to check my anemia and check to see if I was dehydrated. What he showed me (yes, I got a copy of the results) was pretty shocking. First, the CBC results.
Today's Blood Test (5/16)
WBC - 3.6. 4.5 - 11 Normal (Same as yesterday, its fine)
RBC - 4.28. 4.5 - 5.9 N (dramatically higher than yesterday, good)
HGB - 13.9. 13.5 - 17.5 N (dramatically higher than yesterday, good)
HCT - 42.3. 37 - 53 N (huge jump from yesterday, good)
MCV - 98.9. 80 - 100 N (dramatically higher than yesterday, BAD)
MCH - 32.5. 26 - 34 N (dramatically lower than yesterday, good)
MCHC - 32.9. 32 - 36 N (dramatically lower than yesterday good)
So these are the type of results I was expecting to see. With these values I'm not even technically anemic according to the doctor. After I took the first blood test, I immediately went and took 1000 mcg of cyanocobalamin orally as a tablet which I dont think could boost the numbers this much in such a short amount of time. I think the testing machine yesterday was just not working properly. This puts my mind at ease. For comparison, I'll out my starting values compared to my current values from today.
WBC - April 3.1 vs May 3.6. Good
RBC - April 3.93 vs May 4.28 Good
HGB - April 12.7 vs May 13.9 Good
HCT - April 36.2 vs May 42.3 Good
MCV - April 92.1 vs May 98.9 Bad
MCH - April 32.3 vs May 32.5 Neutral
MCHC - April 35.1 vs May 32.9 Neutral/Good
And secondly, the potassium/electrolytes. I'm comparing my potassium and sodium prior to supplementation vs today.
Potassium - April 4.3 vs May 3.8. (3.6 - 5.1 N)
Sodium - April 139 vs May 143 (128 - 145 N)
As you can see, while I'm not technically out of range, my number for potassium has fallen significantly and my sodium level has risen noticeably. And these number were after a night where I drank four 250ml servings of coconut water (very high potassium) and had a breakfast of 10 oranges (very high potassium). I just feel more comfortable and healthy with potassium at the top of the range. I bet last night I was very deficient with numbers below the lower range. I'm going to continue drinking coconut water and eating fruit. I'm taking 3 days off from all b12 supps to see how I feel with a shot on Sunday.
So those are the details. Encouraging CBC numbers and electrolyte numbers to be cautious with. What do you guys think? I might make this it's own individual post as old posts dont get views compared to new.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.