Intense Fatigue and Low Iron

aiiyana
on 9/10/21 12:41 pm

Hello all! I have lurked this forum for a long time and appreciated everyone's info and experiences, but now I've made an account to ask some questions. I'm currently 21 months post-op traditional duodenal switch.

I'm very confused about fatigue and iron levels. I've been experiencing increasingly worse fatigue over the past year, but I can't get my primary care physician to do anything about it. I recently asked him to test my iron levels because I suspect the symptoms I've been having are related (intense fatigue, always cold, dizzy when standing).

  • My lab's reference range for iron is 27ug/dL to 159ug/dl. It's only labeled "iron", but I assume it's the test for serum.
  • Since surgery, my iron has gone from 46 to 44 to 42.
  • The reference range for hemoglobin is 11.1g/dL to 15.9g/dL.
  • My hemoglobin has gone from 11.7 to 12.4 to 11.9 to 11.4.
  • Within the same amount of time, I have increased my iron supplementation from 0 to 30 to 45 to 60. The last increase was at the request of my surgeon, who did say my iron was on the low end.
  • When I look up normal ranges online for iron, a majority says my (adult female) iron I should be over 50 and hemoglobin should be over 12 at the lowest. I also get the impression from looking at older posts here that my iron is, in fact, low.
  • My Vit D was the only other thing low on my last labs, and I've since added a supplement for that, but have not yet had it tested.

I will get my next full panel of labs with my surgeon in November. However, my pcp nurse calls and tells me "Your levels are fine" based on the lab ranges. They're making me feel like I'm insane and I feel like I'm being gaslit. If my iron isn't low, what could be causing this awful fatigue and why can't I get my doctor to do anything about it? I'm pulling my hair out in frustration at this point. I would switch pcp, but I live in a very small town and don't have access to another doctor at the moment. Not being able to stay awake the entire day is not how I intend to live the rest of my life.

In the meantime, I have decided to increase my iron again and will now be taking 130mg/day of carbonyl iron and 36 mg/day of ferrous fumarate. Previously, I was taking 60mg of ferrous fumarate. I can't think of anything else to do.

I would appreciate any thoughts or advice. Does it seem like the iron or might there be a deficiency in something else causing those symptoms that I haven't heard of? Thank you!

airbender
on 9/11/21 3:46 am

fatigue is a tough one....it can be a multitude of issues. Iron deficiency is based on a number of things. You need ferrritin (low would be iron def), this is probably the most important lab work for iron deficiency. TIBC (high would be iron def) and look at your MCV (low would be iron def) it is an indicie on your CBC.

I would suggest having your thyroid hormones checked....if you still have your thyroid Free T3, Free T4 and TSH. Good luck!

If you have a specific question for me, PM me or I will not see it, as I don't check responses on the forums and don't have anything forwarded to my email.

aiiyana
on 9/11/21 8:16 pm

Thank you for responding and for the information! I understand that fatigue is complex and I promise I have done so much searching for answers, as much as I can understand without being a medical professional myself.

Neither my surgeon nor my pcp have ever tested my ferritin. The most recent test, my pcp only tested "Iron".

I have two test results within the past year for my TIBC and MCV.

  • TIBC was 286 ug/dL and 279 ug/dL in a range of 250 to 450.
  • MCV was 87fL and 84fL in a range of 79 to 97.

The only other numbers I've had tested are my Iron Saturation and my UIBC.

  • For Iron Saturation, both tests had me at 16% in a range of 15% to 55%.
  • For UIBC, 235ug/dL and 240 ug/dL in a range of 131 - 425.

I do also have an underactive thyroid and have been on medication for two years. I've had it tested frequently and tested with good numbers every time.

Janet P.
on 9/11/21 4:56 am, edited 9/10/21 9:57 pm

Hey there - the one lab I don't see on your list is ferritin. This is the one that will show the anemia. I have dealt with iron deficiency anemia since the beginning (it's under control now). I can only tell you my experience and then can hopefully figure out how you can address them.

I was also feeling completely exhausted but couldn't sleep. I couldn't keep my legs still (called restless leg syndrome - yup it's a thing). I developed a weird habit of chewing ice. I became obsessed with it. Because I had direct contact with other DSers and and a great DS surgeon and my research, I realized I was anemic (the ice chewing thing is called PICA). The difference for me is I have direct access with the DS surgeon as well as having really good PCPs and living in a major metropolitan area. Ferritin is what measures the amount of iron in your blood. That's the critical number. Normal range is 50 and mine had dropped to 7. A key factor for iron in premenopausal women specifically is the combination of malabsorption and still having your period. That for me was also critical because mine was very heavy. I was in my mid 40's so I actually forced menopause so help (and for me it did).

We tried oral iron but absolutely nothing worked - no matter how much I took or when I took them. I ultimately went to a hematologist but searched for one who specifically understood malabsorption. Living where I do I had access to one who had worked with numerous RNY patients and was willing to learn and understand what I needed. That was more than 16 years ago and over the years we have found the right medication that works - its done as infusions. Way back it was continuous infusions over months. Now it's literally every 4-5 years. The only drug that worked for ME was one called Injectafer. My latest infusion was almost 5 years ago. I have a full list of labs from my surgeon and have found a primary doctor who will run those labs for me once a year.

Personally I think it's critical that you educate yourself about living with the DS. Google search iron deficiency anemia and bariatric surgery - most of the information is around the RNY but it's still malabsorption. Print things out and give them to your doctor. Call your surgeon. Scream from the rooftops.

Good luck!

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

califsleevin
on 9/11/21 9:28 am - CA

Take a look through Dr. Keshisian's blog posts - I'm sure he covers this somewhere as it's such a common topic in the DS world:

https://www.dssurgery.com/blog/

1st support group/seminar - 8/03 (has it been that long?)  

Wife's DS - 5/05 w Dr. Robert Rabkin   VSG on 5/9/11 by Dr. John Rabkin

 

hollykim
on 9/11/21 1:21 pm - Nashville, TN
Revision on 03/18/15
On September 10, 2021 at 7:41 PM Pacific Time, aiiyana wrote:

Hello all! I have lurked this forum for a long time and appreciated everyone's info and experiences, but now I've made an account to ask some questions. I'm currently 21 months post-op traditional duodenal switch.

I'm very confused about fatigue and iron levels. I've been experiencing increasingly worse fatigue over the past year, but I can't get my primary care physician to do anything about it. I recently asked him to test my iron levels because I suspect the symptoms I've been having are related (intense fatigue, always cold, dizzy when standing).

  • My lab's reference range for iron is 27ug/dL to 159ug/dl. It's only labeled "iron", but I assume it's the test for serum.
  • Since surgery, my iron has gone from 46 to 44 to 42.
  • The reference range for hemoglobin is 11.1g/dL to 15.9g/dL.
  • My hemoglobin has gone from 11.7 to 12.4 to 11.9 to 11.4.
  • Within the same amount of time, I have increased my iron supplementation from 0 to 30 to 45 to 60. The last increase was at the request of my surgeon, who did say my iron was on the low end.
  • When I look up normal ranges online for iron, a majority says my (adult female) iron I should be over 50 and hemoglobin should be over 12 at the lowest. I also get the impression from looking at older posts here that my iron is, in fact, low.
  • My Vit D was the only other thing low on my last labs, and I've since added a supplement for that, but have not yet had it tested.

I will get my next full panel of labs with my surgeon in November. However, my pcp nurse calls and tells me "Your levels are fine" based on the lab ranges. They're making me feel like I'm insane and I feel like I'm being gaslit. If my iron isn't low, what could be causing this awful fatigue and why can't I get my doctor to do anything about it? I'm pulling my hair out in frustration at this point. I would switch pcp, but I live in a very small town and don't have access to another doctor at the moment. Not being able to stay awake the entire day is not how I intend to live the rest of my life.

In the meantime, I have decided to increase my iron again and will now be taking 130mg/day of carbonyl iron and 36 mg/day of ferrous fumarate. Previously, I was taking 60mg of ferrous fumarate. I can't think of anything else to do.

I would appreciate any thoughts or advice. Does it seem like the iron or might there be a deficiency in something else causing those symptoms that I haven't heard of? Thank you!

are your iron supplements oil based? If so, you won't absorb them. We need dry formula.

also, the fumarate is not well absorbed. Many of us have good luck with Proferrin. It is more expensive but if the cheaper ones don't absorb, you are just wasting money on them.

proferrin worked well for me for a while until I stopped absorbing it. Now, I have iron infusions as needed, given by my hematologist.
you really need to see a hematologist if at all possible.

 


          

 

White Dove
on 9/12/21 5:58 am

I had RNY. I no longer absorb oral iron, except for the Proferrin. I have iron infusion about once a year. You need to see a doctor who is a specialist in blood disorders.

Real life begins where your comfort zone ends

Most Active
×