3 Month Update. Input Requested

[lownskater52]

Hey everyone,

So this post is a 3 month look back since my b12 deficiency diagnosis/treatment and to go over any progress made. I have plenty of questions so any guidance would be greatly appreciated.

As a recap, back in 2010 I had a very bad reaction to Prilosec OTC that hurt my digestion greatly after which I went vegan and have been for close to 10 years now. I've likely been b12 deficient for close to the same timeframe. Over those years I noticed a wide array of worsening symptoms like thinning hair, poor digestion, low libido, lost weight/muscle mass (5'10 tall and got down to 122 lbs or 55.3 kg), fatigue, depression, and weakness in the lower body with an emphasis on my left leg. After going to the doctor this year in April, I came back anemic (HCT 36.2, HGB 12.7) and followed with a homocysteine/b12 test confirming the deficiency (h: 29.1 b12: 159). Every single other test (all thyroid tests, folate, iron tests, full vitamin panel) came back great. Trust me on that one.

What follows below is the 3 month timeframe of my b12 supplementation:

- On the first day of b12 supplementation with just sublingual b12, it was like a bomb had gone off in my nervous system. Everything was twitching, I had confusion/brain fog, I felt dehydrated, had crazy pins and needles tingling all over. I thought I was having an allergic reaction in the moment but it was really just my body turning on for the first time in years. This happened a couple more times in the beginning but I havent felt something like that in months.

- I started supplementing with cyanocobalamin b12 injections in the first few days of May. In this loading stage, I was getting b12 injections every other day for 2.5 weeks or so. Initially, they gave me a sense of euphoria almost like a high. I felt more strength in my lower body, more happiness, a strong libido, and some slight twitching. I was really stoked as this looked like it was going to be easy to come back from. Now when I get a b12 shot, I hardly notice the difference.

- I retest myself without my doctor shortly after starting the injections and my homocysteine plummeted almost immediately to 5.9 and b12 was up to 2000.(I have the ability here in the states to order my own blood tests online which I've done extensively since this diagnosis. I've been retesting myself often which I will touch on more later).

- After 3 weeks or so, I slowed my b12 injection rate from every other day to twice a week. I also continue to take sublingual b12 (methyl/adreno mix) daily. My last b12 test showed a level of 1100 with the b12 supplementation regime and a homocysteine of 6.1.

This brings us to today's exactly 3 months after starting supplementation. I'll first list the improvements I've made and follow with the lingering issues.

Improvements:

- Homocysteine has fallen from 29.1 to 5.9 since my most recent test.

- I've gained weight to get close to a normal BMI. 124 lbs to 139lbs in 3 months. Mostly fat. 20 BMI.

- My digestion is slightly better though I still have days of trouble.

- My libido is slightly better and (apologize if this is TMI) color has returned to my semen. (With serious b12 def, you body can't complete spermatogenesis and semen can become clear and transparent like mine was).

Lingering/Recurring Issues:

- Anemia - I still have anemia after 3 months. My most recent test showed RBC: 4.00 (4.2< N), HCT: 37.6 (38.5< N), HGB: 12.6 (13.2< N). My MCV (94) and MCH (31.5) were normal but they've been pretty much normal to maybe borderline high the entire time. I can't make sense of this as the anemia should be gone by now. I've had regular CBC blood tests in the 3 months come back in normal ranges for everything but they will be followed by lower numbers again. My doctor thinks its Iatrogenic Anemia (anemia cause by frequent blood tests) caused by me ordering frequent blood tests on myself. I had been averaging maybe a test a week to 1.5 weeks. I'm holding off on the tests now and it's been a little over 2 weeks since my last one. I'm not sure if I feel any better yet.

- Left Leg/Lower body weakness. While I have had very slight improvement in my gait, I still have lower body weakness with my left leg still being muscle wasted. I cannot stand for very long and find myself leaning on things if I need to stand for longer than a few minutes. I can walk better than I can stand strangely enough. I've been trying to get back into working out again with light exercises twice a week but my left leg just feels too weak and unstable. I was hoping for more progress on this by now. I'm not sure if it's more related to the lingering anemia or nerve damage.

- Limited Muscle/Strength Gains - I've had no trouble working out my upper body but I can't seem to gain any strength or muscle tone. Apparently there is some connection with muscle mass and b12 deficiency.

- Depression - I'm still having bouts of depression. I'm not sure if it's from the b12 deficiency specifically or just because I'm depressed my recovery is going to slow.

Questions:

- Has anybody struggled with lingering anemia? It's going on 3 months now with only very slight anemia improvement. Could it be related to having too many blood tests too often like my doctor suggests? I have a feeling a lot of my troubles come from this issue directly (It is not folate or iron associated, I assure you).

- Is it normal for my left leg to still be atrophied and weak? While my walking feels better, I cannot stand for very long still and its concerning.

- How long as it taken you to get your full digestion back?

Any other input would be greatly appreciated. Thank you very much for your time.

[Statesideheather]

I don't know about the anemia as I've not had any follow up tests.

But I can say that my initial recovery was very noticeable. Weight gain, feeling human again, etc.

But in the 4 years since that initial few months recovery, things have been much slower. I know I have continued to improve but it's not noticeable as it was in the beginning.

I inject every other day. I do not notice anything from the injections. If I delay injecting, I will notice symptoms creeping in. Pins and needles, shortness of breath, feeling panicky and as I'm losing my mind, etc.

The symptoms appear quickly and quietly. But injecting often enough seems to keep them away.

My left side was always my bad side as well. Numbness, pains, weakness. The left side of my face had no feeling. And all the way down to my left foot which ached inside. Eventually it all mostly healed. But, again, symptoms creep in if my levels get too low.

Recovery was rapid at first and then very slow. Those tests can be helpful and interesting. But really, you also need to trust yourself and go by how you feel. The better you are feeling, the better those numbers surely are.

I've been thinking of getting some bloodwork for a while. Mostly for my own curiosity. B12 is the solution to what is caused by deficiency. Not much more I can do than what I'm already doing. 😂 Actually, my paranoia could get the best of me. If I'm still anemic or other numbers aren't good, it will stress me and that will deplete my B12 levels. 😂

I'm not a Dr. But it seems to me that you are in the recovery phase and will continue improving. It's early yet.

[lownskater52 in reply to Statesideheather]

Hey Staesideheather,

Thanks for the thoughtful response. I think you're right in saying I need to rely on how I feel rather than a test. With the way I'm feeling, I'm pretty sure I'm still anemic.

I think I've reached the point where large progress is gone and I only will have very incremental gains from this point forward. That's a little disheartening sadly. Nothing else to do though...

[JOLLYDOLLY]

Hi,

I do not even begin to understand all the levels or tests you have had done, but to me, you seem to have an awful lot of injections, perhaps too many. In my case and that of my late father, we only had frequent B12 jabs at the beginning. (first six months or so) So as our levels started to go back to the normal ranges, then they were more spaced out, to one every three months. Are you self medicating or is a professional doing it for you? Perhaps you are over medicating?

From someone who has had iron deficient anemia and PA - I would say you are iron anemic as well. I am no longer iron anemic as I am now post menopausal.

I am not medically trained tbh and I am not sure of your age, but you seem to be very slim, even though you say you have gained weight.

All the symptoms you are displaying are thyroid as well as B12 deficiency.

I have always had a under active thyroid as my gland only partially developed when my mother was pregnant with me. The B12, PA and vitamin D deficiency, was diagnosed 20 years ago, when my then so called dr I was under, was messing around with my thyroid meds. At that time I had all sorts going on, including iron anemia, so was under a Endocrinologist and Gynecologist.

Ironically if you are iron anemic, you bleed more than you do, if you are not anemic. So perhaps your Dr is right, because of all the blood tests you have done recently.

My legs twitch, when I am due a B12 jab and I also have muscle wastage which has to be built up. I also have severe sciatica, so can't stand for long at this present time and walk with a stick. (The sciatica was caused because of other issues, not related)

I was having jabs every two months, but now three months.

I am sorry, I am unable to explain your levels, but I would either let the dr do your tests or seek a second opinion as something is not right.

Wishing you all the best and please let us know, how you get on.

Take care

[lownskater52 in reply to JOLLYDOLLY]

Hey Jollydolly,

Thanks for reaching out.

- I'm doing a mix. My doctor prescribed me one injection a week but I buy the other one privately. I think 2 a week is rather mild compared to others on here who do EOD or every day.

- I've had multiple tests to check my iron and ferritin and everything with iron has come back fine multiple times. Definitely not an issue in regards to the anemia.

- My thyroid is good too. TSH, T3, T4 all good confirmed by multiple tests.

- I'm going to take your advice. I go back to my doctor in October and if the anemia isn't resolved, I'm going to go get a second option.

[JOLLYDOLLY in reply to lownskater52]

Well I hope it all goes well and you get what you need lownskater52

Keep us updated, until then take care.

[lownskater52 in reply to JOLLYDOLLY]

Will do JollyDolly

[Alfabeta]

Hi

Reading your blog it would appear that you had b12 deficiency rather than PA. I became deficient due to being near vegan and being prescribed omaprezole for over six years. The symptoms are manifold - go to the b12 deficiency site to see the list which borders on the infinite!

Once my injections started, the majority of symptoms ceased pretty quickly which is not the case with PA sufferers who have their symptoms for life it appears reading the blogs in this site. However, I continued to have ‘signature ‘ symptoms some of which took 18 months to 2.5 years to cease.

It has been four years since my diagnosis and, I believe, one can become increasingly b12 deficient for over 10 years before the symptoms become so bad that one is aware one has a problem. This was certainly the case with me. Certainly, the longer one has been deficient the worse the symptoms which, I believe, in some cases cannot be cured as areas of the nervous system can be permanently damaged.

I only tend to get symptoms after my injections now when, before, I used to mostly get them around six weeks after my 12 weekly injections. I only have slight symptoms compared with what used to get and the small fibre neuropathy has virtually ceased altogether.

I hope that, finally, I might be over the worst and near to normal if that is possible!

It has been stated on here regularly that sub lingual sprays are an ineffective means of absorbing b12 hence you will not get relief from them. If you do not have PA, then b12 tablets should help - your vegan diet is totally devoid of b12 unless you have foods with it added to them.

Good luck.

[lownskater52 in reply to Alfabeta]

Hey Alfabeta,

Good to hear from you again. Thanks for taking the time to respond. I remember that we had a similar story with the veganism and the omeprazole.

- So after reading your post, it really took 18 months or so to get to a place where you dont notice many symptoms on a daily basis? Wow. Sort of discouraging I have such a long way to go.

- It took me exactly 10 years to put the pieces together that I had b12d. I frequently wish I could go back in time and tell myself what I know now.

- I take sublingual non spray, liquid b12. You're saying that wouldn't work and to take pills instead?

Thanks man

[lownskater52 in reply to Alfabeta]

Also AB,

Did you have any trouble with lower body weakness? Muscle atrophy? Digestion? Gait? Hair loss? If so did these issues resolve themselves after the 18 months?

[Alfabeta in reply to lownskater52]

Hi

I had linguistic and memory problems for some time before diagnosis then I started have short periods of blurred vision then sudden attacks of semi cinsciousness and tinnitus lasting about 10 seconds in all then auditory hallucinations- very weird as the latter has not been experienced by anyone else so far but they are a recognised symptom on the b12 deficiency site.

B12 deficiency’s a very lonely illness to have as no doctor or nurse that I have met has accepted it they have all wanted to take me down the mental illness route or they’ve just looked at me as if I’m a freak.

In this respect, it’s a very dangerous illness as misdiagnosis can take one down medical paths one does not want to go.

I have kept my symptoms to myself when talking to medical staff because of their reactions because they cannot believe that a vitamin deficiency can cause such damage to ones nerves.

I think I’m getting better but who knows.

Given the symptoms you’ve described, it sounds more like PA but that is a disease caused by the inability to use the b12 in ones diet in which case injections are the only way of getting the b12 that you need.

One good outcome from my doctors misdiagnosis is that I still get injections otherwise if he finds out that I do not have PA then he will cease my injections forthwith.

Good health

[lownskater52]

Looks like I should have made it a smaller post to get a larger audience. Noted.