Re-emerging symptoms

[soos]

HI

I was diagnosed with B12D 3 years ago and was on the 3 month protocol for injections. I was not advised re cofactors and have only recently realised that I should be taking folic acid with injections. As I was finding it difficult to cope with a high pressure job and the 3 monthly injections didn't last, the doctor reluctantly agreed to injections every 8 weeks. This seemed to be okay but my symptoms (tingling, muscle pain, feeling under par, sore joints etc) are coming back. Should my symptoms be returning when I am getting B12 jags every 8 weeks?

Thanks for any advice.

Soos

[KimberinUS]

yes, you might need more frequent jabs. it is also possible there is a co-occurring medical condition.

i am in the US. i had a b12 deficiency diagnosed in 10-2014, with a level of 169, range 200-1100 pg/ml. i was told to take tablets (over 200 mcg per day) which i did for 16 months before going back to the doctor in 2-2016 because i felt worse and my level had increased to a whopping 246, same range. i was told to continue tablets, which i did for another 15 months. i thought i was going to die. seriously. die.

I started getting injections of cyano b12 weekly in May 2017. i felt much better but not well. At least i no longer thought i was going to get progressively worse and die.

i had a full iron panel done 6-2017 which came back as ferritin 98: range 15-150 ng/ml, serum iron 68: range 27-159ug/dl and iron saturation percentage 21%: range 15-55.

also my hemoglobin was 14.8, range 11.1- 15.9g/dl. dr. said all fine. in my non medically trained but now currently very informed mind, all fine means is "in range."

I read on this forum that h pylori is a "root cause" of b12 d and iron deficiency. as you can see i did not have an iron deficiency.

in 8-2017, i demanded testing for h pylori, just to rule it out. and the fight was on. my dr. didnt want to do the test because i did not have heartburn, the main symptom of h pylori. needless to say, it was my money i was willing to pay for the test and i was pissed. that test was POSITIVE!!!

after treatment i waited to retest for h pylori and everything else again until 11-2017.

my ferritin was 83ng/ml, serum iron 68ug/dl and iron saturation was 24%. hemoglobin 14.0 g/dl, so my numbers were essentially the same.

BUT i got my h pylori test back 3 days later and it was still positive!!!

2nd round of treatment done December 2017.

confirmed negative February 2018.

July 2018, my serum iron is 109 and iron saturation % is 35%, which are optimal.

stopthethyroidmadness.com/l...

i only took iron for 8 days at beginning of November 2017 but quit because i felt good for first couple, 3-4, days but then worse as i assume my still h pylori positive body was working overtime to shuttle the iron i was swallowing to ferritin. this iron did not effect my iron panel done in 11-2017, as i had stopped taking it a full 9 days before the test was done.

the bottom line is this. why are you b12 deficient? do you have PA? do you have h pylori? celiac? SIBO?

Have they tested you for the causes of b12 deficiency? or just said it doesnt matter what the cause is.

because that is complete BS! it does matter. if you have h pylori it can be treated and needs to be treated because it also messes up how much iron your body will give you to function everyday. if you have SIBO or celiac can they be treated?

i just reread my response and it sounds like a rant for which i am sorry. i am just so disgusted that doctors dont want to get down to the root cause of a patient's issue.

FYI every symptom you list can be caused by iron deficiency

best of luck and health.

[soos in reply to KimberinUS]

Thanks so much for your reply.

[Gambit62 Administrator]

if you were alright in the past on 8 weekly but things have returned it would suggest that there may be something else going on. Have you had thyroid function tested (40% of patients with PA go on to develop auto-immune thyroidosis (hashis))?

If it has always been the case that 8 weeks isn't enough then likely that you do need it more often - my symptoms return within 24 hours of a shot - which is extreme but not unique