Don’t give up fighting

[Jason_h123]

After many years of battling with various GPs and HCAs , same as far too many people on here, I’ve made another breakthrough!!

Following a referral letter from Dr K and a covering letter from us I had a call from my GP today. He had read and digested the letters and has not only agreed to prescribe me hydroxocobalimin every other day until symptoms have gone, and a repeat until I say otherwise, he has also agreed that SI is ok and will provide syringes, needles, sharps box etc.

Additionally will prescribe folic prescription and continue with 6 monthly tests of folate and ferritin.

Has also added that I need no more B12 testing.

Obviously delighted but this but still wondering what is around the corner !!!

In summary, keep battling and don’t let them beat you !!

[Wheat]

So very pleased for you, excellent news!

[Narwhal10]

Drum roll here………. Ahhhhhh-mazing. Amazing, Thank goodness. I bet you are thrilled and exhausted from the fight.

😉

[Divii]

congratulations

[Nackapan]

That is great news ! I managed above .

Not the needles and syrings though .

Apparently more difficult to prescribe.

Easy and cheap to but if you get a problem with this.

Hope not.

[Jillymo]

Well done it seems your one of the few who has a Dr with 👂s

I am pleased to hear of your success.

[FlipperTD]

Well done there, and well done to the GP too.

[Jason_h123]

thanks all, I’d kind of accepted that I’d be SI off the radar for ever.

Although I’m extremely grateful for the GPs response I still think it’s more of a case of them just doing what the consultant said in the referral letters rather than them making an informed decision.

[jade_s]

A win is a win regardless of the reason Well done!! And good for Dr K, and the GP for following 👏👏

[Sleepybunny]

Great to have a good news story.

Well done for persevering.

[MrJustatip]

Hello Jason. Yep, welcome to the madness of the B12 world. So, where do I begin? I'll keep this as short as possible. I had a lab test in June of 2021, GP prescribed folic acid tablets. I took them for 90 days then one day I had problems catching my breath and passed out. Then when I woke up, I started to cry so much my wife had to call 911 (I'm in the U.S.), They said it was all in my head. Our GP never bothered telling me that if I take folic acid I ALSO have to take B12 as well. So I started taking B12 tablets, sublingual, etc. I kept getting worse. I was losing my mind and had problems walking and I ached like I had the flu, and still could not catch my breath. The GP refused to give me B12 shots except once per week. Then said I should go only once a month because my lab values suggested my levels were 1645 and insurance would not pay for more frequent shots. Now flash forward to today. A few weeks ago I had an IF test (Intrinsic Factor Anti Body Test), and now I know I cannot absorb Vit. B12 from anything I digest. I have to have B12 shots, so guess what, even after the test results were sent to my GP she still said I can take the shots once a month and I'd be good. WRONG. I told my wife I was tired of listening to these idiots (doctors, GPs, specialists, or both). So now for the past 30 days, I've had a B12 shot EVERY DAY and will continue to until I feel I have gotten the best I can be. At some point, I will stop the everyday shots and try to cut back to whatever works best for me, maybe every other day or so (?) OK, so I could care less if I ever have another blood lab test, at least as pertains to B12 levels. The ranges of B12 are sooo incorrect. Anyone who is B12 deficient should have an IF test to be sure they do not have the IF form of anemia. If you are B12 deficient and you delay your treatment of B12 shots, it can cause permanent damage. To your original main question. B9 or folate, is necessary to work together with B12. One without the other is not good. Methyl folate is the best, better than folic acid, which is the synthetic form. Methylcobalamin or hydroxocobalamin is the best(in my opinion and most on this forum I think). We order folate tablets that quickly dissolve under your tongue (sublingual) they are the easiest to take (again, my opinion). Anyway, in conclusion, do your own research. I did when I realized I was literally dying. I knew nothing about all of this. Now I know much more about B12 deficiency than doctors do and now so do you after reading this. If that sounds crazy, it is, but doctors just don't know about B12. Hope I helped at least a little. Sorry for the lengthy reply, but sometimes we need that, I know I did. Good luck, MrJustatip

[PaintLadie in reply to MrJustatip]

Just curious. I am also in the USA are you on a prescription to get your injections or are you able to get them without. I am currently strong arming my doctor to continue daily shots an dwish I could bypass the system altogether.

[MrJustatip in reply to PaintLadie]

I am in Tennessee. I go to a place called BioRenew in Murfreesboro, TN. I buy it from them (Methylcobalamin), for $55.00 per vial and each vial contains 10 shots @ 1 ml/shot. So that works out to $5.50 per shot. I currently take 1 shot each morning. This may change after 1 month (currently on week 3 of that). I am finally beginning to feel as if I am feeling better. Who knows if this will do it for me, but once/month, once/week or even 3 times/week wasn't working for me. I diagnosed myself and was correct, now I just had a test that says I may also have Lupus or Sjogrens as secondary conditions.

Good luck on your journey, MrJustatip

[jade_s in reply to MrJustatip]

MrJustatip, can you get that without a prescription there? Thanks.

PaintLadie I sent you a chat message

[MrJustatip in reply to jade_s]

Yes, I do not need a prescription to buy from them. As you may know, Methylcobalamin is better than Cyanocobalamin (ok, that's my opinion, but if you read up on it you'll prob agree). Anyway, I don't think they even have Cyano. That for sure is the cheapest I've found B12 for.

Again, hope this helps; MrJustatip

[PaintLadie in reply to MrJustatip]

I agree Cyanocobalamin never worked for me. Thanks, good to know of alternatives.