Any med pros? Lab question

[happily single]

Hi everyone. I may have posted about my issue in the past. I'm waiting for a call back from my pcp.
I've had low Ferrtin for a while. In July my level was a 5. PCP said they like it to be over 75.
In September I had an infusion. The nurse said I would only need one infusion.
Number went up to 135 as of November. PCP was happy and said it was solidly in range for what they like.
Today my number is down to a 45.

Any idea what would be causing the Ferritin to drop?

 

[sam_gordon]

I had a similar issue (low iron/ferratin). Ended up getting a colonoscopy where they repaired an ulcer, and my levels went back up.

Doctor also told me to stop giving blood. . Even though my levels have returned to normal, he thinks thats related and has said I've donated enough.

 

[sam_gordon]

Other things (according to Dr. Google)... make sure you're getting enough iron in your diet.

Oh, and I think you're missing decimals in your numbers, but not positive... 7.5, 13.5, and 4.5.

 

[disneychrista]

Sounds like you might need to take an iron supplement daily to keep your Ferritin level up. Mine got down to 2.8 in 2014. I took iron for 3 months and that got my iron back up. When I stopped taking the iron my levels tanked again. So now I take iron every day. My level last time it was checked it was 50.0, which is the highest it has ever been.

@sam_gordon the range is 11.0 - 307.0 (for the lab I use at least)

 

[sam_gordon]

@sam_gordon the range is 11.0 - 307.0 (for the lab I use at least

Hmm.. wonder what I'm thinking of.

 

[happily single]

Other things (according to Dr. Google)... make sure you're getting enough iron in your diet.

Oh, and I think you're missing decimals in your numbers, but not positive... 7.5, 13.5, and 4.5.

Thanks for the response. I honestly eat a lot of red meat. And there are no decimals according to my labs. Maybe because it goes by ng/ml?

 

[happily single]

I had a similar issue (low iron/ferratin). Ended up getting a colonoscopy where they repaired an ulcer, and my levels went back up.

Doctor also told me to stop giving blood. . Even though my levels have returned to normal, he thinks thats related and has said I've donated enough.

Interesting. I did have a colonoscopy, but that was about 2 years ago and there were no issues, no need to return for 10 years. Maybe I need to go back.
I wish I could donate blood. I get light-headed just talking about it. IN the past I would pass out while getting labs done. But I've had very wonky labs and med issues since 2020.

 

[Christine]

Many years ago I had a ferritin level of 5 also. I only figured it out because at some point I became mildly anemic (very mild). Otherwise no one was checking my ferritin. My doctor also wanted it at 70.

I ended up having two contributing factors: I was in perimenopause and was having monthly heavy periods. The second factor is that I was taking ibuprofen almost daily for the periods and back pain. I had a GI workup and while my colonoscopy was good, my upper endoscopy showed fresh bleeding in the stomach (no ulcer).

I never did have an infusion but i did correct the stomach bleeding. Waited out my periods. But if the culprit of the blood loss keeps going on, then the bucket will keep emptying so you need to find the source.

 

[happily single]

Sounds like you might need to take an iron supplement daily to keep your Ferritin level up. Mine got down to 2.8 in 2014. I took iron for 3 months and that got my iron back up. When I stopped taking the iron my levels tanked again. So now I take iron every day. My level last time it was checked it was 50.0, which is the highest it has ever been.

@sam_gordon the range is 11.0 - 307.0 (for the lab I use at least)

Prior to the infusion I was taking an iron supplement which did help my numbers very slightly. I'm just concerned about the big drop in about 6 weeks. And the fact that I feel lousy, which is why I requested she repeat the test

 

[tetera]

Hmm.. wonder what I'm thinking of.

Maybe hemoglobin?

 

[disneychrista]

Prior to the infusion I was taking an iron supplement which did help my numbers very slightly. I'm just concerned about the big drop in about 6 weeks. And the fact that I feel lousy, which is why I requested she repeat the test

I think the doctor may need to do further testing as to why the drop. It is usually linked to blood loss. Mine was suspected to be caused by heavy periods. The infusion and even daily supplements are really only treating the symptoms not cause. With such a significant drop, in such a short amount of time I hope they figure out the cause before it gets any worst. I could always tell when my ferritin would get low because I started to feel lousy, low energy and easily winded coming up stairs and such.

 

[kanne323]

Low ferritin girl here- I drop to 3-5 every two years or so, and my hemoglobin also plummets. I usually need 1-2 rounds of infusions (I get Venofer, so 3-5 infusions per round.)

Iron deficiency is usually caused by something. Sometimes, it's easy to find, and sometimes, it's not. When you can't find a cause, it's not uncommon for it to keep happening (like in my case.) Have you have any GI testing? It's pretty standard to do a colonoscopy, endoscopy, and h.pylori and Celiac testing, as many GI conditions can cause iron deficiency. Are you female? If so, how are your periods? Heavy periods can be another cause, and it's important to rule out fixable causes of heavy periods, so it could be helpful to see your OBGYN.

Do you take any PPIs- things like Pepcid? These medications can block iron absorption. Bariatric surgery can also cause poor absorption. How are your co-factors, like your B12 and folate? Sometimes, fixing these can stabilize the ferritin, as well.

I've had multiple rounds of testing and everything comes back negative, so I know how frustrating it can be to keep dropping.

 

[happily single]

Low ferritin girl here- I drop to 3-5 every two years or so, and my hemoglobin also plummets. I usually need 1-2 rounds of infusions (I get Venofer, so 3-5 infusions per round.)

Iron deficiency is usually caused by something. Sometimes, it's easy to find, and sometimes, it's not. When you can't find a cause, it's not uncommon for it to keep happening (like in my case.) Have you have any GI testing? It's pretty standard to do a colonoscopy, endoscopy, and h.pylori and Celiac testing, as many GI conditions can cause iron deficiency. Are you female? If so, how are your periods? Heavy periods can be another cause, and it's important to rule out fixable causes of heavy periods, so it could be helpful to see your OBGYN.

Do you take any PPIs- things like Pepcid? These medications can block iron absorption. Bariatric surgery can also cause poor absorption. How are your co-factors, like your B12 and folate? Sometimes, fixing these can stabilize the ferritin, as well.

I've had multiple rounds of testing and everything comes back negative, so I know how frustrating it can be to keep dropping.

Thanks for the detailed reply. I'm sorry you are going through this! So frustrating I'm sure.

I should have included that according to hormone testing done in October I'm post-menopausal. It came as a shock to me! I also have had an IUD for about 4 years now. So no heavy periods. I did see my GYN for my annual just before I had the infusion. I really love the guy. He's pretty blunt "Well your bleeding from somewhere and if its not your period its your butt". After the low level was found my pcp sent me to a hemotologist. He is the one who ordered the infusion. He didn't seem concerned about the cause. He also advised me not to continue the iron supplemnts post infusion.

I had a routine colonscopy about 2 years ago. From 2020 through about 2022 I had TONS of GI testing due to severe and constant sore throats, but that was probably before my Ferritin was low. It wasn't tested until this summer. But I've felt lousy since July, 2020, so my levels MAY have been low all along. Anyways, in 2020-2022 all the GI testing, including upper GI's, Barium Swallows' multiple CT Scans and something done by an ENT under general anesthesia were negative.

 

[kanne323]

Thanks for the detailed reply. I'm sorry you are going through this! So frustrating I'm sure.

I should have included that according to hormone testing done in October I'm post-menopausal. It came as a shock to me! I also have had an IUD for about 4 years now. So no heavy periods. I did see my GYN for my annual just before I had the infusion. I really love the guy. He's pretty blunt "Well your bleeding from somewhere and if its not your period its your butt". After the low level was found my pcp sent me to a hemotologist. He is the one who ordered the infusion. He didn't seem concerned about the cause. He also advised me not to continue the iron supplemnts post infusion.

I had a routine colonscopy about 2 years ago. From 2020 through about 2022 I had TONS of GI testing due to severe and constant sore throats, but that was probably before my Ferritin was low. It wasn't tested until this summer. But I've felt lousy since July, 2020, so my levels MAY have been low all along. Anyways, in 2020-2022 all the GI testing, including upper GI's, Barium Swallows' multiple CT Scans and something done by an ENT under general anesthesia were negative.

I wouldn't be surprised if they recommend you have another round of GI testing since it's several years later. However, I agree- your ferritin probably was low then if you were feeling like this.

I'm curious about the sore throats and testing. Interestingly enough, a year before my latest deep dip into severe IDA (with a ferritin of 5 and hemoglobin of 7), I had a swallow study and endoscopy because of esophagus problems. Not really a sore throat, per se, more like difficulty swallowing and some soreness in the esophagus. I had a questionably negative endoscopy and the Barium swallow showed some weakness, but nothing significant. My symptoms got better for a while with a really restricted diet and then got bad again a few months before my ferritin and hemoglobin dropped severely. No one seems to think they are related, but I do wonder.

(I should clarify, my diet was not restricted in most iron sources, but I struggle to eat bread, pasta, baked goods, etc.)

 

[happily single]

I wouldn't be surprised if they recommend you have another round of GI testing since it's several years later. However, I agree- your ferritin probably was low then if you were feeling like this.

I'm curious about the sore throats and testing. Interestingly enough, a year before my latest deep dip into severe IDA (with a ferritin of 5 and hemoglobin of 7), I had a swallow study and endoscopy because of esophagus problems. Not really a sore throat, per se, more like difficulty swallowing and some soreness in the esophagus. I had a questionably negative endoscopy and the Barium swallow showed some weakness, but nothing significant. My symptoms got better for a while with a really restricted diet and then got bad again a few months before my ferritin and hemoglobin dropped severely. No one seems to think they are related, but I do wonder.

(I should clarify, my diet was not restricted in most iron sources, but I struggle to eat bread, pasta, baked goods, etc.)

I’ve moved from my desktop to iPad and something the boards don’t cooperate. So I may give up typing.

What did your doctor suggest with your questionable looking test results? It’s interesting that you had similar symptoms and also IDA. I however have no trouble with swallowing. It is just a constant sore throat that is anywhere from a three to a six and a pain scale.

I’m absolutely convinced I had Covid in July, 2020. Those were the days when you got tested in the outside tent in the full hazmat suits. That test was negative however since then I’ve had a constant sore throat and extreme exhaustion. That’s what prompted all of the testing, including all of the endoscopy, etc. I’m just realizing that I was actually with a different medical practice so maybe they did check my ferritin level. I’m gonna see if I can log into that system.

 

[SirDuff]

Hmm.. wonder what I'm thinking of.

You're thinking of hemoglobin (though numbers outside of the US for hemoglobin are 10 times higher (US is g/dL and others use g/L)).

 

[KPeterso]

Dealing with low iron with my 90 year old father. Very low hemoglobin and low ferritin. In the last 3 months, he has had 4 units of blood transfused (over 3 transfusions) and 3 iron transfusions. We finally have his hemoglobin in double digits (started in the 5s). We see our hematologist today to see how things are looking and next steps. Right now, he has been on weekly labs to track the hemoglobin to ensure it is going up. We have been dealing with this off and on for about 10 years I would guess. He has seen multiple doctors. We did find out he has Celiac at 86 years old (no symptoms other than the malabsorption of iron) - so hard to explain why we had to make changes to his diet to try to eliminate gluten. But there is more to it, but we have not yet figured it out. Certain meds also caused more issues with the iron (Eliquis was one that tanked his iron).

Good luck figuring it out. It is definitely a journey!

 

[focusondisney]

Hi everyone. I may have posted about my issue in the past. I'm waiting for a call back from my pcp.
I've had low Ferrtin for a while. In July my level was a 5. PCP said they like it to be over 75.
In September I had an infusion. The nurse said I would only need one infusion.
Number went up to 135 as of November. PCP was happy and said it was solidly in range for what they like.
Today my number is down to a 45.

Any idea what would be causing the Ferritin to drop?

Excessive bleeding or poor absorption are 2 of the leading causes. You’re a female? Premenopausal? Any issues with excessive or frequent heavy periods? Your body may not be able to recover from that. Do you take any meds to control stomach acid, reflux or GERD? Any auto immune or chronic inflammatory diseases? Those meds & diseases can interfere with your body’s absorption of iron.

 

[happily single]

Excessive bleeding or poor absorption are 2 of the leading causes. You’re a female? Premenopausal? Any issues with excessive or frequent heavy periods? Your body may not be able to recover from that. Do you take any meds to control stomach acid, reflux or GERD? Any auto immune or chronic inflammatory diseases? Those meds & diseases can interfere with your body’s absorption of iron.

Post menopausal. No periods. No stomach acid issues or meds. No known auto immune or chronic inflammatory disease