reverse out twice?

[MuppDog]

Hi Friends,

I was diagnosed with b12d in June 2023. I found a way to get weekly shots, and largely got better from the horrible neuro symptoms.

I then got proper loading doses and such in September 2024 - thanks to a good hematologist. Then I discovered my ferritin dropped. I have tried , unsuccessfully, to correct that with pills since November 2023.

Things started getting bad again in mid-July. I am now doing iron infusions, and shots twice a week. I also did a zoom call with Dr. Klein (I am in the US) who told me he thinks my shots just cannot work as hard because I have worked through all the iron I have in my body.

The last few days, after the first infusion and first week of more shots…my nerve pain/symptoms are quite bad, like when I reversed out last summer.

Has anyone ever reversed out a second time after a bad flare??

[PlatypusProfit8077]

I don’t know about reversing out but I recently had a procedure and crashed badly afterwards. I moved myself to twice daily injections for a week, then daily for another week before finally getting back onto EOD.

It was awful, like being back at my worst.

I know it’s possible to go through crashes with viruses, and I often find the day before my period is awful with a flare of symptoms.

I hope you improve soon!

[Gobbozoid in reply to PlatypusProfit8077]

I crashed recently after suffering Covid, an ear infection and a tonne of personal stress all at once

[B12again in reply to Gobbozoid]

Stay clear of stress as best one can, it’s the worst. I’ve come to believe that, like B12 (but positively impacts cells), stress has it’s negative impact on every cell in the body.

[Swift20 in reply to B12again]

Agreed! I have yet to share my most recent recovery story, but I know b12 will not work if your parasympathetic nervous system isn’t working. You need to be out of fight or flight and in rest and digest.

[MrsTuft]

Yea, correcting other pieces of the puzzle, viruses, operations, overdoing it - can all cause these setbacks. Just keep treating. X

[Cherylclaire Forum Support]

Seems that there is no linear way out of this !

Blips along the way seem to be commonplace. I remember a time when I'd take so many backward steps that subsequent injections would give me the "starter acne" all over again: face, scalp, up nose, in ears. Strangely comforting, as it meant improvements on the way.

Hopefully, after a while, these blips will become less severe, less frequent, and you will be able to gauge the likelihood of them occurring. For instance, after Covid, I recognised the need for more frequent injections for a week or two. You will also be assured that this is not a permanent downturn. Making your way back will become an easier process.

I had a dog once that I nicknamed Muppy - as she looked like a Muppet, especially after hanging her head out of the car window for a cool-down !

[MuppDog in reply to Cherylclaire]

Muppets and dogs are two of my favorite things ❤️ I sincerely appreciate your response, and reassurances. Just super frustrating, and makes a person just feel broken at times

[Cherylclaire Forum Support in reply to MuppDog]

Here, there is always someone around to talk to, and honestly could not have got this far without them all.

[Sunvalley12]

I’m sincerely thinking of you. When I read “frustrated….just feel broken at times” I know that means suffering. Sending extra hugs and compassion.

[MuppDog in reply to Sunvalley12]

🥰

[JesusMercy60]

Hello MuppDog,

I have read on this forum as well that when you have iron infusion or something you are deficient in you can go through reversing out symptoms again because your body was without a vitamin or mineral . I'm only on my 4th month of treatment but I have read that from others. what were your symptoms of low ferratin.

[lb9999]

I’m dealing with something similar to you. Rest assured you are not alone. I feel like I have reversed out three times now!

The missing piece to my puzzle seems like it was also ferritin. I just kept injecting more B12, but still wasn’t ever fully recovered. I have only recently figured this out. I’m still not 100% certain, but all my other cofactors are likely in balance. I was just told last week that I’m iron deficient without anemia.

Unfortunately, I have hereditary hemochromatosis (a mild form) so I have to bring my iron up slowly under the care of a hematologist. He will not do iron infusions. He only wants me taking it 2x per week and then will recheck in three months. I have read that low ferritin can also cause neuro symptoms, so I think there can be some overlap. It’s confusing. You are lucky to be able to consult with Dr. Klein. I’m in the US. Drs here have been happy to prescribe me B12 has injections but it has been difficult finding an expert in PA.

Keep going! We will get there!

[MuppDog in reply to lb9999]

Just so you know…I am also in the US But the zoom consult with Dr. Klein was super helpful…because like you said…I tend to know more about this than all my US doctors. It was very helpful to speak with a medical professional that actually knows more than me. I wish you the best on your ferritin journey…a year in…I know how tough that slow road is 😊

[yorkshiregirl4 in reply to lb9999]

I have been advised to take iron 2 or 3 times a week rather than daily, but I struggle with nausea and usually take slow release iron tablets to prevent this. I was just wondering how much iron you take 2x per week and how well this is going for you.

[MuppDog in reply to yorkshiregirl4]

So, I do not your specific situation but if you are correcting a true deficiency, you need a LOT more iron than that. Also, the slow release tablets can cause less stomach troubles, but are also far less absorbed.

I was taking 175mg of elemental iron daily for many months. My ferritin would only get as high as 39, and then drop a bit again. I was stuck between 20 and 40 for too long, and am now in the middle of IV infusions. I have had 2 of the 5 total treatments.

Iron can be a big challenge to correct, because our bodies have safety mechanisms in place to prevent overload. That is great when you have normal levels…but not so helpful when you are desperately trying to increase.

[Oneash]

Hi, it's a roller coaster. Expect the ups and downs.I'm going through a rough patch simply because I had a busy weekend working.

I also put it down to healing. When the body decides the next bit of you that has been malfunctioning for years needs a complete rebuild, it tends to put you to sleep to reboot.

[Darkvarnish9]

I have similar problems. When I started every other day injections, I slowly began to feel better. As I read on here, the benefits started to taper off after a bit. Then I turned the corner, and once more began to feel better. But now after only a slight cold and bad indigestion, I seem to be back at the beginning again. The A.Fib has returned after dinner and when I go to bed, but low not fast but needless to say this causes stress. Doctors say there is nothing wrong with my heart, for it to do this. But they have recorded it at 130, before I started the injections. I am loose words again and beginning to get tingling in my hands once more. Other less important symptoms, uncomfortable hot hands and feet, tinnitus in one ear and tiredness, have returned too.

I am wondering, if the B12 was a misdiagnosis? I'll keep with it, with🤞that it is right. I take iron and folic acid tablets when I have injections. If only the A.Fib would go I would be so much happier.

I am also Vit D deficient, the consultant said I must take tablets for the rest of my life. Happy to do this as I could barely walk when I started taking them.