PA with iron deficiency

[Wowo23]

Hi all.I think I told you guys that my Iron is very low. Ferritin is 5, iron saturation is 4 and always low rbc. I finally got set up with an infusion center for iron and start next. I'll do one a week for 10 weeks. I've felt off, breathy and tired for a year or so now. Someday's, i just can't get off the couch. I do feel a little better on b12 jab days tho. I inject 3 times a weeks. So at least that helps. Anyway, I have the weirdest cravings. The norm food I love like pizza, Mexican food ect...just doesn't sound good to me. I only crave white minute rice with butter, sugar and milk. Also crunchy sugar cereal like Cap'n crunch with crunch berries. I was so worried I would develop diabetes, but so far that's fine on bloodwork.

I'm a little nervous about the infusions. I'm told there could be side effects.

Has anyone has had an iron infusion? Of so, did you have any problems?

[Tiredycake]

Hi, just to reassure you, I had 2 iron infusions when I was pregnant. I was really nervous but I had zero side effects and felt so much better afterwards.

The joke is that now I have really low iron and b12 and because I’m not pregnant they won’t give me an infusion or jabs!! And I can’t absorb the pills! I live in France 😡.

Good luck, you will be fine with the infusions! X

[Wowo23 in reply to Tiredycake]

Awe man, I can't believe the docs refuse to give you b12 or iron infusions. I can't do the pills either. It kills my stomach.My doc tried to take my jabs away, but I ordered b12 injectable from Canada. After a while I talked my doc into reinstating my jabs. It also took over 6 mos to get infusions for my Iron deficiency. I can't believe how wrong they ate about vitamins

[Cherylclaire Forum Support in reply to Wowo23]

"I can't believe how wrong they are about vitamins"....

My Oral Medicine consultant, at first, was always concerned that I was self injecting frequently. This was because, at over measurable amounts (over 2000 ng/L), he could not be sure this wasn't constantly accumulating. He even asked the GP in his report whether she could monitor me closely as I gradually reduced the frequency.

This did not happen, and no-one mentioned it again. Phew.

I saw him again, just recently. It has been about two or three years since I last saw him.

He told me " I have changed my mind about your B12 injections. I now think that your body would be unable to function properly on less. And of course, tablets wouldn't do anything." ........... !!!!

I was stunned by this: too surprised to ask why the about-face. Let's hope he puts that into his report to my GP. I am due to see him again in March 2023.

Glad that you are getting the iron you need, and the positive responses from others around the globe who have had infusions previously.

When I was first found to be B12 deficient, I craved a particular type of cough sweet and wouldn't go anywhere without a pack of them in my bag. They taste of thyme - but also contain fructose and sorbitol. I haven't usually got much of a sweet tooth, but still quite like the flavour - just no longer addicted !

[Nackapan in reply to Cherylclaire]

That change of view so refreshing. Also reassuring for us all.

Hope he adds to this change of medical opinion with information at your next consultation.

[Cherylclaire Forum Support in reply to Nackapan]

Yes - it never occurred to me at the time to ask. Opportunity missed - I was too focussed on asking for a haptocorrin test. In fact, it did not even occur to me until you suggested it !

[TigerTea in reply to Tiredycake]

Hi, I'm in uk and buy B12+ patches by PatchMD. I buy from Patchworks in uk, they might ship to France or you might be able to source over there. I find the help between my GP B12 jabs and when I don't want to, or can't (because I'm away from home) self inject. xx

[DiNL]

hi Wowo23,

I have just had 5 bags of iron infused. It was absolutely fine. They gave me two bags then a week later another 2 bags and then a week later the fifth bag and my iron levels and ferretin levels are now great. In fact I got a bit too much iron but it’s not a problem as it’s not horrendously high. I didn’t have any bad reactions to the Iron Infusions at all. I hope you will be ok and perhaps this reassures your a little bit. I live in The Netherlands.

[Wowo23 in reply to DiNL]

Thank you for for the reassurance!

[Sunny999]

hi Wowo23

i had one iron infusion 3 years ago before an operation and it was good with no side effects. They do monitor closely to make sure you are ok.

I do hope it goes well for you and you start to feel better soon. Good luck.

[Wowo23 in reply to Sunny999]

Thank you so much. It helps put my mind at ease

[Nackapan]

Hoping the iron infusions will really benefit you.I've never had one but witnessed a friend 'wake up' with visibly more colour.

I crave sugar.

Not unusual for me.

I think a natural response to fatigue and a foggy brain.

Our brains need sugar.

I'm trying to have it with carbohydrates.

To maintain steady flow rather tha the see-saw in blood sugars.

I've put on weight but surprisingly my total cholesterol number gone down. ??

So I wouldn't worry too much, our bodies are clever so try and go with the flow at present.

I know we don't crave 'good foods' at times and the body gets tricked by additives.

I however do believe we crave what we need .

It's just getting it in the right form

I craved oranges when pregnant years ago

Bought bags if them from the market .

Now I realise probably needed folate !!

The the craving went as quickly as it came.

I also found coffee repellent.

A known substance to inpede absorbtion of vitamins.

I overthink at times now .

I think we all do to some extent trying to get as well as possible and not as busy as we'd like as s distraction. 🤔

TC