Hyperventilating, anxiety and panic attacks?

[ItsJustMee]

Hi, new here but not new to PA. I've had PA since I was 15 (now 36) when I had a large part of my intestine removed which included the section that deals with b12 (Terminal Ileum) due to to my Crohns.

Anyway, I used to get my injections 12 weekly but I kept getting pretty poorly around 10 weeks so they altered it to 10 weekly. Then to 8 weekly.

Well recently (maybe 12 months ago) my gp decided I didn't need it 8 weekly as guidelines state 12 weeks and the surgery was firm with this rule. They tested my levels and they were high ish so that put the nail in the coffin. So since they changed it back to 12 weeks I've slowly been struggling more and more to make it to 12 weeks.

My next injection is due in 3 days time and at the moment I am struggling with breathing, I think it's hyperventilation. Feels like I can breath fine but I'm not getting the oxygen, kind of like suffocating. Also my anxiety is sky high and getting panic attacks a lot.

My problem is that when I get like this, all my gp does is test my levels and if they're within the normal range I get fobbed off.

I find that my b12 is still within normal, maybe the low side of normal, but my serum folste is usually high.

Is this normal symptoms? Does anyone else get severe symptoms but still within normal range on blood tests?

I know a bunch if you will tell me to give this info and that info to my doctor but bare in mind I've had this over 20 years and no matter what I show or tell them, they don't care as they only go by blood tests and nice guidelines.

I tried a patch last night as the breathing was pretty bad, I thought I was going to collapse and it seemed to get rid of the symptom after about an hour of wearing it, but I don't know how rely able they are. I wore it all night and took it off this morning as I was feeling very shakey.

I don't feel as bad as I did yesterday but I still don't feel like my breathing is normal and my anxiety is still quite bad.

Any advice would be appreciated.

Thanks for listening,

Ben.

[JanD236]

That is such bad management by your doctor, I’m sorry for your suffering.

Guidelines have recently changed to say that injections can be given every 2 or 3 months. So I would be pointing this out as your GP is so keen to follow these to the letter.

In addition, guidelines also say that once injections have started it is not necessary to have further tests of B12 levels. So your GP has been wrong to test and especially wrong to reduce your injections on the basis of the test results.

I hope someone will come along on this forum to give you the links to the guidelines I’ve mentioned.

I, like many on this forum, find that the injection frequency offered by my GP does not keep symptoms at bay. I therefore source B12 from a pharmacy in Germany, where it’s available over the counter, which I then self inject.

Good luck!

[ItsJustMee in reply to JanD236]

I was thinking of self injecting, but gave the patches a go first.

My gp isn't great, even if I tell them guidelines have changed they will just say my levels don't show I need it so 3 months is more than adequate. Everything is about cost efficiency at my gp. It once got to the point where they started charging me for the injections, but luckily that changed after a few months.

[MissOphelia]

Hi Ben, I’m sorry you’re feeling so poorly. I just wanted to say I’ve been in the same boat with my breathing since Saturday, I can’t seem to catch my breath properly & it’s quite frightening.

My injection is due in a week, my old GP was the same and despite pins and needles and numbness won’t give me my injections any sooner than 3 months, I’m going to try my new GP but don’t hold out much hope.

Just wanted to say you’re not alone!

[ItsJustMee in reply to MissOphelia]

It's just ridiculous isn't it and I agree it's very frightening when it gets bad. For me the best I can describe it is like you're holding your breath only while still breathing. Gets to the point I feel like I'm going to literally suffocate and die. Most of my pins and needles occur around the top half of my arms and in the elbow pit areas.

I think having a patch on for 12h has alleviated the breathing a little though.

I'm seriously considering just scrapping my doctors all together and just self injecting every 8 weeks.

[MoKayD in reply to ItsJustMee]

Not being able to draw a good breath is the symptom that lets me know it's time for a shot. Besides tiredness it's to first symptom to return when my B12 levels get low. I'm on a once a month schedule but during the summer I stop by my doctor's office every three weeks because it seems to get used up quicker in warmer weather.

[ItsJustMee in reply to MoKayD]

I wish my doctor was this accommodating. I just have to struggle through until I get to 12 weeks.

[MoKayD in reply to ItsJustMee]

I feel for you. If my shots were every three months I'd be laid up in bed by the time the third month rolled around.

[ItsJustMee in reply to MoKayD]

I pretty much am. Trying to survive with b12 patches but I don't think enough is getting absorbed, still gasping but not quite as bad as before I put one on.