Rapid Iron Depletion

[esteloca]

Hi everyone,

I'm wondering what can cause iron to drop quickly after infusions...?

Blood loss has been ruled out.

I have P. A. , Celiac Disease and chronic iron deficiency.

I was severely anemic for years and had over a dozen infusions stretched out over 13mos in 2016-17. Those only got my hemoglobin up to 10. Iron wasn't checked monthly during that time, I just remember it remained low.

I found another hematologist who was able to get my hemoglobin and iron up through diagnosis & treatment of my other conditions (previous Dr sd it wasn't his job to figure out why I was anemic. His job was to get my numbers up 😒).

Fast forward to the present & I feel so much better than I did but I still feel pretty bad most of the time. I know that sounds crazy but I could barely walk or think clearly before. I couldn't text a 3 line msg to a friend - an hour in & I'd give up & cry my eyes out because the words didn't make sense. Nothing made sense. Now at least I can think most of the time & get around some without feeling like a zombie!

I've gained 90lbs (since March) because I'm absorbing nutrients and fat on the gluten free diet but I'm so inactive (weakness,fatigue) I'm not burning anything off.

I'm now getting 2 Fereheme "injections", a week apart (through 15min I.V. drip) every three months. Not sure why they're called injections but 15 mins beats 3 hours-that's how long the other infusions took.

During the time after the "injections", my iron slowly rises to optimal level. Last time my ferritin went up to 116 which was great! I've lived half of my life w ferritin below 10 & many yrs feeling like death as a result.

I'm sorry this is so long but I'm trying to figure out why, after my iron goes up, it bottoms out so quickly (pretty sure Fereheme is supposed to work that way. It makes iron rise over a 6-8wk period) but it's supposed to stay up. My ferritin dropped from 116 to 23 in less than a week and iron dropped rt along with it. This is the 3rd time in a row it happened and new hematologist says he's never had it happen before, has no idea why it would happen. He sd it's common for it to drop but never that fast... So we'll just keep doing infusions as needed.

When I told him I think that's what causes my fatigue he signed me up for a sleep study.

I hope this makes sense to someone who can help me because it makes no sense to me. What could cause it?

Thanks in advance to anyone brave enough to read this and try to help!

BTW I'm in the US

[Gambit62 Administrator]

esteloca, this forum is about a specific auto-immune disorder that attacks the mechanism that is used for absorbing B12 from food. People with this condition can experience problems with other vitamins and minerals - particularly folate and iron - but there are a lot of things than can affect iron levels that would be outside the scope of this forum.

Lowering levels of iron if you are on injections/infusions would imply that you are either having a problem with storing iron (which would probably be a genetic issue - but I really have no idea) or having a problem with loss of iron (most common of which would be a bleed somewhere). I presume that this has been ruled out by previous investigations.

It is unlikely that we are really going to be able to support you on this one on this forum.

[esteloca in reply to Gambit62]

Thank you

[clivealive Forum Support]

Hi esteloca For what my two pennyworth is of any help after I was diagnosed with P.A. way back in 1972 following gastric surgery in 1959.

In the following years my iron levels dropped dramatically and I was prescribed three months of ferrous gluconate which raised them only for them to immediately start dropping again.

After this happened on two or three occasions I was referred to a blood specialist at Stoke Mandeville Hospital who simply told me that like with the B12 for the P.A. I would need to be on iron tablets for life.

I have now taken 1 – Folic Acid 400μg

and 1 – Iron Ferrous Fumarate 210mg tablet for more years than I can remember.

I wish you well.

[esteloca in reply to clivealive]

Thank you so much. It makes sense that I'd need iron for life. Maybe my doctors just aren't used to chronic lifelong patients.

I appreciate you taking the time to reassure me.

Take care 💖

[clivealive Forum Support in reply to esteloca]

If you take iron it's best to take it with something like orange juice and if you take more than one tablet a day to spread the times when you take them.

[esteloca in reply to clivealive]

Thank you! Doctors should tell us that stuff but that's a whole 'nother subject. 💖

[Zumbaaaaa]

Hi Esteloca

I have suffered Iron Anaemia which was recognised way before my P.A and through my own research these are interlinked for me. I was low enough for a transfusion but the Dr here in NZ would not prescribe one due to the expense and the nurse said it would be extremely painful so I went with oral supplements.

It took me several years to find a supplement that did not aggravate my stomach after being treating with Omiprezole and other antacids ( these symptoms totally caused by the Iron supplements) I now use Carbonyl Iron (only one I can tolerate sourced in New

Zealand ) I have found other Iron supplements that I can tolerate but these are sourced from overseas when I travel.

I have been Self Injecting for just over a year now after giving up fighting with GP regarding the management of my P.A . It was only at a family meal when discussing my P.A that I found out my grandmother was P.A and had injections she died more than 20 years ago so I was unable to discuss it with her.

With a regime of a multivitamin in the morning and an Iron supplement in the evening with a folic acid(folate) I take it in the evening so that any aggravation occurs while I am asleep, I maintain a high level of wellbeing since I adopted this regime. I am still tweeking my injection schedule but usually no more than a fortnight between injections I have cyco that I bought in Paris and Hydro I bought in Australia I am alternating these experimenting with what is working best for me.

Are you using other supplements? Or just relying on infusions.

It will get better unfortunately I does take time to build up both your body and your mind in that you can finally know you are on the path to wellbeing and away from endless Dr appointments and illness. Best wishes

[esteloca in reply to Zumbaaaaa]

Hi Zumbaaaaa

Thank you so much for your response. I really appreciate it.

Yes I take a multivitamin with iron, folic acid, & b12 injections every 2weeks (which I don't think is often enough but I haven't tried to buy more without a prescription yet).

I'm like you, I had iron deficiency anemia for years before they realized I had P.A.

I just want to thank you again for helping me realize I need to trust the process and come to terms with it.

Take care 💖

[Ken-ard20]

Zummbaaadoc said same to me.......esctelca do you live in London area if so I can give you name 3 hospitals who deal with some of your concerns but can not treat you the results given to you they will send them to GP if you want.The blood tests are only related to vit b which are amazing amount..No way would NHS do the tests far to expensive.You will have to pay about £200...It may put mind to rest one way or other..

I have low level B12 20yrs ago I would been treated.So get my injections from Germany.Ihave had two injections within 2months so far not much better.

[esteloca in reply to Ken-ard20]

Hi Ken-ard20

No, I'm in the US. Thank you so much for offering to help me though! I really appreciate it!

Oh no, you need frequent injections... Otherwise damage/symptoms won't improve and may become permanent.

I hope you're able to get the injections you need!

Please take care 💖 and thanks again

[Ken-ard20]

Thank you.same for you keep health up

[humanbean]

I'm assuming that someone has had you do a stool test to check for blood loss?

Be aware that the stool test most commonly used in the UK is very unreliable and false positives and false negatives are very common. You can reduce the risk of false positives and false negatives by altering your diet for a few days before the test and by not taking vitamin C and antacids for a few days.

I wrote a post on this subject on the Thyroid UK forum a couple of years ago having had a false negative, which you may find of interest. I had to do my own research on the subject to find out why.

healthunlocked.com/thyroidu....

Hope it helps.

[esteloca in reply to humanbean]

Thank you so much! Heading over to read it now!