I'm Alive!

[Rexz]

I had heard that some of you were looking for me. I have not been on too much these past few months as I had completely crashed, completely non-functional, with a severe case of iron deficiency. I apologize for not posting what was going on with me sooner. But the severe, severe fatigue just did me in and I was just wanting to sleep all day. Heart palpitations like my heart was doing somersaults, headaches etc. all the signs of iron deficiency. Yes, Davina70 I tried to climb a mountain but failed miserably! : )

My ferratin was 22 ng/mL well below the normal low of 30 ng/mL. These are U.S. Lab values so not sure if they are different elsewhere. BUT my blood work RBC and Hemoglobin showed normal so my GPs said all was OK because I did not have anemia??? Well please all of you with Autoimmune Gastritis keep an eye on your ferratin if it drops below 100 then you should be concerned. AIG can cause low/no gastric acid and this in turn can cause malabsorption of iron. There is a double whammy here... one is of the malabsorption of iron and two is that your body in order to help your immune system fight viruses will sequester your iron stores to deny the virus from your iron which viruses need to multiply. The issue is that your body recognizes chronic inflammation, as in AIG, to be similar to a virus and chronically sequesters your iron stores. In a person with a virus or chronic inflammation your ferritin levels will be elevated. In other words my ferritin count of 22 ng/mL was essentially close to zero which is damaging and can be deadly. Why was my blood work not showing anemia you might ask? I'm not sure on that one. But I did find a condition called Iron Deficiency Without Anemia (IDWA). This is what I have and none of my doctors had heard of this. Once we figured this out I started getting iron infusion IVs and have had seven of those now so my ferritin is now at 104 ng/mL. A person with confirmed AIG or type A Pernicious Anemia (which is the autoimmune version) there normal LOW ferritin level should be 100 ng/mL. I am now slowly recovering from this other we'll call it a speed bump.

Additional tests to have run for iron are:

- Iron Binding Capacity

- Iron

-Iron Saturation

- Ferritin

I tell all of this so that others may be aware to keep an eye on your ferritin levels, if they are trending lower over time then it is something to have a serious conversation with your GP over.

I will follow-up with a more detail post on this IDWA subject in a few days. Let me know if anyone else has experienced this condition.

Best wishes to you all, Rexz

[Cobalt1312]

Glad you're finding out about this and addressing it Rexz! Thanks for sharing so the rest us have a frame of reference for our own health. Take good care and rest up if possible

[Rexz in reply to Cobalt1312]

Thank you Cobalt. Appreciate the support.

[wedgewood]

Thanks for letting us in on your health problems .Really appreciate that . Useful information for us . Wising you continued improvement .Best wishes .

[Rexz in reply to wedgewood]

Thanks Wedgewood. Yes, although I was aware of iron malabsorption the iron deficiancy without anemia took me completely by surprise.

[Nackapan]

Glad you are recovering .

Thank you for highlighting this.

I had low ferritin as did my daughters with an in range HB.

It was only acted upon by one doctor for one daughter .

She ended up in A and E with scary heart palpitations and shaky legs trying yo climb stairs.

No other medical conditions.

The other daughter was told subclinical hypothyroidism with a ferritin level of 9 ug/L

Not treated .

We discovered low iodine too.

Another doctor sanctioned a low dose supplement every other day.

I along with b12 deficiency treatment started with a ferritin level of 61 ( probably raised as inflammation seen on brain MRI )

Then dropped to 29 ug/L After loading b12 doses ??

At this level I had extra symptoms .

Breathless. Shaking . Heart palpitations.

When raised to 41 ug/ L thise symptoms went .

I asked for ferritin to be included on bloods!!

I still am on a low dose 3× a week iron supplement.

Iron is complex but for some reason ferritin not always included on full bloods 8n the UK. ??

Have since been told to keep it above 50 ug/ L Around 70 good

Is this also hereditary?

I think again we can all function at different levels .

Hope you are feeling aa well as can be soon.

[Rexz in reply to Nackapan]

Nackapan! Thank you. Take a look at my todays post it has some good references on IDWA. Yes, I had this restless leg syndrome also along with other symptoms. Who heard of that???

I found this can also be not only legs wanting to move at night but also somewhat painful.

[Nackapan in reply to Rexz]

Yes restless leg syndrome horrid

[Thrones12]

Hi Rexz good to see you back online and so sorry to hear about your challenges, well done for persisting and getting answers. Stay well x

[Rexz in reply to Thrones12]

Thanks MrPeacock for the well wishes. Seems we have to take care of ourselves mostly with this stuff.

[DiNL]

So good to hear you are recovering. I have the same condition as you. Also received an infusion and now find taking heme iron is much easier for me to absorb than regular iron tablets. My ferretin is slowly going up! Thank you for keeping us posted about this. Best regards!

[Litatamon]

I had a friend who had severe anemia since childhood, including pica.

Nothing helped much. She would go up a bit, but not huge amounts. And then go back down.

She was an athlete, so it affected everything for her

This staple from Costa Rica was the only thing that changed the game for her - Carao juice (nectar).

One supplier -

amazon.com/Carao-Fruit-Extr...

Did Amazon because you are in the States, but they have their own website as well. It is more like a blood builder.

Just note - some feel it tastes and smells horrid. I don't mind it.

All the best to you.

[Rexz in reply to Litatamon]

Thank you, I'm definitely going to try that. Maybe something will absorb! : )

[Narwhal10]

Thanks and love to you Rex,

Good to know. I read a brilliant article by a haematologist from Kuwait about hypoferritanaemia. Constantly low iron stores.

In a nutshell, he and his colleagues took it seriously, treated and erm, something else.

😂🤣 Brain fog is amazing.

🐳

[Rexz in reply to Narwhal10]

Hypofe...what? Sounds like a cyborg hippo playing in an adaptation of Fantasia! 😆. Lol I love the "erm, something else." That I can definitely relate to.

Do you think maybe brain fog is nature's/Gods way of keeping us from realizing, fully, how messed up we are? 🤔

Thank you, I'll look into this cyborg hippo thing. Hypoferritanemia. Geez I'm gunna have to teach you Brits how to spell anemia correctly. 😂

[Narwhal10 in reply to Rexz]

Oh I would love a cyborg hippo 🦛. Not much feeding, walking and cleaning. 😍

😂🤣 With regards to anaimia, my friends they receive texts that reference ‘werk’ (meaning work) and furry critters are ‘aminals’ (animals).

Anaimia is Greek for ‘lack of blood.’ 😉

[Rexz in reply to Narwhal10]

Lol at least we spell hippo the same also I hear that they cannot really sing! 😆

I did not know the anemia came from Greek Anaimi. Good to know. 🧐

[Narwhal10 in reply to Rexz]

😂 I regularly sing, I Want a Hippopotamus for Christmas by Gayla Peevey. 🙃

There is lots of Greek and Latin in medicine. I was raised in a particular religion where Latin is prevalent. Although, way back when, a particular man came along, he did not like his wife any more. So, he changed all the rules. I am pretty sure he was called Henry. 😜

[Narwhal10 in reply to Rexz]

Oops the Haematologist is from Kuwait. One cyborg hippo piece of research on ‘Low Iron Stores but Red Blood Count and Haemoglobin is Normal’ .

6993 patients over 6 years. 4370 females and 2623 males. Age of the patients was from 15 to 88 years old. So, in my eyes, it is a nice big, long study and uses a more appropriate age range.

Second paragraph of the introduction gives reasons why low iron stores occur.

ncbi.nlm.nih.gov/pmc/articl...

One criticism is the cut off levels of 11ng/ml and 23.9 ng/ml but I am old school.

The upshot is : a masked disorder with general weakness, easy fatigability, depressed mode and/or hair loss.

🦩

[Regenallotment]

I can highly recommend the US sources Three Arrows Heme Iron Repair, (although I can’t recommend their website it’s dire 🤣) A member on the Thyroid UK forum recommended it, I too had stubbornly low ferritin and symptoms of IDWA. Thankfully they ship to the UK and it’s good value for 90 capsules. My results finally tipped over 100 after 2 months. Just have to maintain it now.

One thing I found on my project ferritin reading is that if you take a regular iron supplement eg iron biglycinate you can reduce the absorption by around 50% sometimes by 80% by eating chocolate, drinking tea, coffee, herbal teas with high tanins eg chamomile within an hour or even two of taking the supplement. So have those an hour before and apparently that helps. 🌱

[Rexz in reply to Regenallotment]

Thank you! I will definitely look into this. Your reply is very timely as I've been considering a self trial of various forms of iron. I have no stomach acid and therefore the malabsorption issue. However my thinking is if I found the right form it is already broken down in capsule firm negating the need for gastric acid to donuts thing breaking it down??? Unlike B12 there are no missing protein molecules that must bind with it in order to be absorbed. I've tried oral supplements previously to no avail. But there are different types so I will try them. Heck better than getting stuck with an IV!

Rex

[Regenallotment in reply to Rexz]

Hey Rex, I found betaine with pepsin tablets really helped my stomach acid. That and apple cider vinegar. 🌱