IRON Infusion Self-Advocacy: Lab Gurus, am I out of line?

[hilary1617]

Lab Gurus, I'd like your thoughts!

I routinely get iron infusions. I've been low in iron and anemic enough to recognize the symptoms - I get exhausted, cold, get tingly fingers and toes, lose a bit of mental acuity (evidenced via typos), bruise easily, etc. So, yesterday I went in for some bloodwork.

The results below are mixed - I'm clearly not in any sort of immediate peril, and my ferritin is technically in the normal range - nonetheless, I feel an infusion is needed. My last infusion in Dec 2016* was ordered based on similar test results.

I was surprised to receive the following with the results from the very same hematologist who always orders my infusions:

Please let Hilary know that her iron stores remain adequate. She can check her CBC, anemia iron studies, and vitamin B12 again in 3 months.​

So, I sent a note:

Would it be okay for me to request an appointment with you to discuss yesterday's blood work? In short, I'm feeling very fatigued and would like to discuss if there is any possibility of an iron infusion before three months from now.

I realize my ferritin, at 34, hasn't dropped yet to below the minimum of the normal range, but my iron at 24, MCHC at 31.6, and saturation level at 6.6% are low and my hemoglobin at 12 is on the very bottom of the normal range.

I have some major decisions and events upcoming shortly and am concerned that I am not functioning at my best.
​

I should point out the last sentence is quite an understatement - I'm not one to be overly dramatic but I've never in my life had more serious decisions to make than those I need to undertake in the next two weeks.]

The response?

Your iron stores remain adequate. You can check a CBC, anemia iron studies, and vitamin B12 again in 3 months. Have a great day. ​

What am I missing and am I out of line? Is an infusion completely unwarranted at this time? Any lab gurus care to weigh in and let me know your thoughts as to whether I should push or wait?

Thanks!!!! Hilary

​

FERRITIN: 34 (range 11 - 306 ng/mL) was 21 (DEC16*) & 38 (APR17)
IRON: 24 ug/dL LOW (range 65 - 165 ug/dL) was 28 (DEC16*) & 88 (APR17)
% SATURATION: 6.6 % LOW (range 15.0 - 50.0 %) was 7.1 (DEC 16*) & 23.7 (APR17)
IRON BINDING CAPACITY: 363 ug/dL (range 261 - 478 ug/dL) was 396 (DEC16*) & 371 (APR17)
HEMOGLOBIN: 12.0 (range 12.0 - 15.0 g/dL) was 12.5 (DEC16*) & 12.8 (APR17)
MCHC: 31.6 LOW (range 32.5-63.5 %) was 31.9 (DEC16*) & 32.4 (APR17)

CBC:

Name
Standard Range
12/2/16 4/17/17 8/8/17
ABSOLUTE BASO
0.0 - 0.2 10*3/uL
0.0 0.0 0.0
ABSOLUTE EOS
0.0 - 0.6 10*3/uL
0.1 0.1 0.2
ABSOLUTE IMM GRAN
0.0 - 0.0 10*3/uL
0.0 0.0 0.0
ABSOLUTE LYMPH
1.0 - 4.0 10*3/uL
1.8 1.6 1.5
ABSOLUTE MONO
0.1 - 0.7 10*3/uL
0.5 0.5 0.5
ABSOLUTE NEUT
1.5 - 8.0 10*3/uL
6.5 3.3 3.5
ABSOLUTE NUCL RBC
0.0 - 0.0 10*3/uL
0.0 0.0 0.0
BASO%
0.0 - 2.0 %
0.5 0.4 0.7
EOSIN%
0.0 - 8.0 %
1.0 2.5 2.8
HCT
36.0 - 45.0 %
40.1 38.6 38.0
HEMOGLOBIN
12.0 - 15.0 g/dL
12.8 12.5 12.0
IMM GRAN%
0.0 - 0.0 %
0.2 0.4 0.2
LYMPH%
12.0 - 40.0 %
19.8 27.9 26.8
MCH
27.0 - 33.0 pg
29.4 30.6 28.7
MCHC
32.5 - 36.5 %
31.9 32.4 31.6
MCV
81.0 - 99.0 CU Microns
92.2 94.4 90.9
MONO%
4.0 - 12.0 %
5.1 9.6 8.2
NEUT%
40.0 - 74.0 %
73.4 59.2 61.3
NUCLEATED RBC%
0.0 - 0.0 %
0.0 0.0 0.0
PLATELET COUNT
150 - 400 10*3/uL
262 228 268
RBC
3.90 - 5.25 10*6/uL
4.35 4.09 4.18
RDW
11.6 - 14.8 %
12.4 12.6 13.0
WBC
4.0 - 10.0 10*3/uL
8.8 5.6 5.6
Name
Standard Range
ABSOLUTE BASO
0.0 - 0.2 10*3/uL
ABSOLUTE EOS
0.0 - 0.6 10*3/uL
ABSOLUTE IMM GRAN
0.0 - 0.0 10*3/uL
ABSOLUTE LYMPH
1.0 - 4.0 10*3/uL
ABSOLUTE MONO
0.1 - 0.7 10*3/uL
ABSOLUTE NEUT
1.5 - 8.0 10*3/uL
ABSOLUTE NUCL RBC
0.0 - 0.0 10*3/uL
BASO%
0.0 - 2.0 %
EOSIN%
0.0 - 8.0 %
HCT
36.0 - 45.0 %
HEMOGLOBIN
12.0 - 15.0 g/dL
IMM GRAN%
0.0 - 0.0 %
LYMPH%
12.0 - 40.0 %
MCH
27.0 - 33.0 pg
MCHC
32.5 - 36.5 %
MCV
81.0 - 99.0 CU Microns
MONO%
4.0 - 12.0 %
NEUT%
40.0 - 74.0 %
NUCLEATED RBC%
0.0 - 0.0 %
PLATELET COUNT
150 - 400 10*3/uL
RBC
3.90 - 5.25 10*6/uL
RDW
11.6 - 14.8 %
WBC
4.0 - 10.0 10*3/uL

 

[DianaCox]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028806/

See Fig. 3:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028806/figure/F3/

Suggested approach for the assessment and treatment of iron deficiency/iron deficiency anemia in clinical practice. 1In patients with inflammation, ferritin levels < 100 ng/mL should be considered as iron-deficient; 2Hb increase < 2 g/dL in 4 wk. Stein et al[6]. CHr: Hemoglobin content of reticulocytes; CRP: C-reactive protein; ESA: Erythropoiesis-stimulating agent; Hb: Hemoglobin; %HYPO: Percent hypochromic red blood cells; ID: Iron deficiency; IDA: Iron deficiency anemia; TSAT: Transferrin saturation.​

***

In clinical practice, iron status is mainly assessed on the basis of serum ferritin levels[182]. However, serum ferritin is subject to gender differences and falsely elevated levels in populations with inflammatory reactions since it is also an acute-phase reactant[181]. Therefore, the diagnostic workup of anemic patients (i.e., men with Hb < 13 g/dL or non-pregnant women with Hb < 12 g/dL) should include CRP, to detect underlying inflammatory reactions (suggested cut-off 5 mg/L), and TSAT (suggested cut-off 20%), a marker of low iron availability that is less affected by inflammatory reactions[181,182].​

Argue that you are clearly iron-deficient (especially in the setting of your other medical conditions), and that you are symptomatic. Or find another hematologist who understands iron deficiency in bariatric patients.

 

[hilary1617]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028806/

See Fig. 3:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028806/figure/F3/

Suggested approach for the assessment and treatment of iron deficiency/iron deficiency anemia in clinical practice. 1In patients with inflammation, ferritin levels < 100 ng/mL should be considered as iron-deficient; 2Hb increase < 2 g/dL in 4 wk. Stein et al[6]. CHr: Hemoglobin content of reticulocytes; CRP: C-reactive protein; ESA: Erythropoiesis-stimulating agent; Hb: Hemoglobin; %HYPO: Percent hypochromic red blood cells; ID: Iron deficiency; IDA: Iron deficiency anemia; TSAT: Transferrin saturation.​

***

In clinical practice, iron status is mainly assessed on the basis of serum ferritin levels[182]. However, serum ferritin is subject to gender differences and falsely elevated levels in populations with inflammatory reactions since it is also an acute-phase reactant[181]. Therefore, the diagnostic workup of anemic patients (i.e., men with Hb < 13 g/dL or non-pregnant women with Hb < 12 g/dL) should include CRP, to detect underlying inflammatory reactions (suggested cut-off 5 mg/L), and TSAT (suggested cut-off 20%), a marker of low iron availability that is less affected by inflammatory reactions[181,182].​

Argue that you are clearly iron-deficient (especially in the setting of your other medical conditions), and that you are symptomatic. Or find another hematologist who understands iron deficiency in bariatric patients.

Thanks, Diana. That's very helpful. I'm surprised by this as she's been giving me infusions for years in what I would consider a timely fashion. I've got so much going on and am so exhausted I was beginning to doubt myself. I'll bring this argument forward tomorrow. I've got to be at my best right now and instead I'm just _not_. Thanks!!!

 

[Spiky Bugger]

Thanks, Diana. That's very helpful. I'm surprised by this as she's been giving me infusions for years in what I would consider a timely fashion. I've got so much going on and am so exhausted I was beginning to doubt myself. I'll bring this argument forward tomorrow. I've got to be at my best right now and instead I'm just _not_. Thanks!!!

Will your PCP assist? Even if only with the name of a hematologist more in tune with your needs?

 

[hilary1617]

Will your PCP assist? Even if only with the name of a hematologist more in tune with your needs?

Maybe, he's flexible and very responsive, but he's associated with the same hospital, so I'm not sure I'd get far in terms of referrals.

I left another message and got the same response, verbatim, for a third time yesterday. I have a weird suspicion that my hematologist may actually be on vacation and that her nurse is acting as gatekeeper and is the one actually blocking me. It's the only logical explanation.

I'm going to try again Monday and just schedule an outright appointment for a doctor's visit with my current hematologist. If there's nothing fast, I'll try to work something out with my PCP.

 

[hilary1617]

@DSRIGGS Thought I'd tag you here so you could see the paper Diana posted above which indicates ferritin of 100 is deficient where inflammation exists.

I realize I can and will survive without an infusion at this point, but *do* feel like dirt with my ferritin at 34. I gave up on trying to get one for the next few months because I have to pick my battles and there's too much else going on. I haven't the time or energy to fight for one.

 

[Spiky Bugger]

@DSRIGGS Thought I'd tag you here so you could see the paper Diana posted above which indicates ferritin of 100 is deficient where inflammation exists.

I realize I can and will survive without an infusion at this point, but *do* feel like dirt with my ferritin at 34. I gave up on trying to get one for the next few months because I have to pick my battles and there's too much else going on. I haven't the time or energy to fight for one.

You know...take those test results with you. You WILL be hanging at a hospital in a week or so. Maybe, after the excitement, you can hook up with a hematologist in TX.

Meanwhile, because I am devoid of shame, I'd send off an email to the author...the one in Germany, I guess...asking if he/she has "any colleagues in the ____ area--or even stateside--who have read and concur with the findings of your study." And then VERY BRIEFLY (one of my life challenges) cite my current iron panel results and inflammation issues.

I have corresponded with study authors over fecal microbiota transplant issues and, the NY guy referred me to a SF guy, who referred me to a Beverly Hills guy and that was close enough. And what I am capable of writing is nowhere near as informed-sounding as what you can compose.

 

[hilary1617]

@Spiky

You know...take those test results with you. You WILL be hanging at a hospital in a week or so. Maybe, after the excitement, you can hook up with a hematologist in TX.

Meanwhile, because I am devoid of shame, I'd send off an email to the author...the one in Germany, I guess...asking if he/she has "any colleagues in the ____ area--or even stateside--who have read and concur with the findings of your study." And then VERY BRIEFLY (one of my life challenges) cite my current iron panel results and inflammation issues.

I have corresponded with study authors over fecal microbiota transplant issues and, the NY guy referred me to a SF guy, who referred me to a Beverly Hills guy and that was close enough. And what I am capable of writing is nowhere near as informed-sounding as what you can compose.

Ha! Great minds think alike.

My sister's old college boyfriend who lived with us for a few summers happens to be a radiologist down in TX (they met as undergrads at Rice - he went on to Baylor med). We're supposed to have dinner. Hoping maybe he'll have a hematologist friend who will see me on short notice.

If that doesn't materialize, once we are back, I have a couple of days off planned to help Liam settle in and to spend time with my parents who are coming here so my mom can tend to Hannah while we are gone. I will walk into her office and offer to sit in the waiting room to personally hand her the study.

If that doesn't work, I'll put that year of studying in Germany to good use finally and contact the author...

 

[Spiky Bugger]

Sehr guter Plan!

 

[Spiky Bugger]

@Spiky


Ha! Great minds think alike.

My sister's old college boyfriend who lived with us for a few summers happens to be a radiologist down in TX (they met as undergrads at Rice - he went on to Baylor med). We're supposed to have dinner. Hoping maybe he'll have a hematologist friend who will see me on short notice.

If that doesn't materialize, once we are back, I have a couple of days off planned to help Liam settle in and to spend time with my parents who are coming here so my mom can tend to Hannah while we are gone. I will walk into her office and offer to sit in the waiting room to personally hand her the study.

If that doesn't work, I'll put that year of studying in Germany to good use finally and contact the author...

And Mohnkuchen. You made me remember Mohnkuchen.

 

[hilary1617]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028806/

See Fig. 3:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028806/figure/F3/

Suggested approach for the assessment and treatment of iron deficiency/iron deficiency anemia in clinical practice. 1In patients with inflammation, ferritin levels < 100 ng/mL should be considered as iron-deficient; 2Hb increase < 2 g/dL in 4 wk. Stein et al[6]. CHr: Hemoglobin content of reticulocytes; CRP: C-reactive protein; ESA: Erythropoiesis-stimulating agent; Hb: Hemoglobin; %HYPO: Percent hypochromic red blood cells; ID: Iron deficiency; IDA: Iron deficiency anemia; TSAT: Transferrin saturation.​

***

In clinical practice, iron status is mainly assessed on the basis of serum ferritin levels[182]. However, serum ferritin is subject to gender differences and falsely elevated levels in populations with inflammatory reactions since it is also an acute-phase reactant[181]. Therefore, the diagnostic workup of anemic patients (i.e., men with Hb < 13 g/dL or non-pregnant women with Hb < 12 g/dL) should include CRP, to detect underlying inflammatory reactions (suggested cut-off 5 mg/L), and TSAT (suggested cut-off 20%), a marker of low iron availability that is less affected by inflammatory reactions[181,182].​

Argue that you are clearly iron-deficient (especially in the setting of your other medical conditions), and that you are symptomatic. Or find another hematologist who understands iron deficiency in bariatric patients.

@DianaCox I FINALLY just iron infusions. Round two was yesterday. I handed my doctor a copy of the paper. Go forward, she has advised: Check your counts every 3 months (CBC, CMP, anemia iron studies, soluble transferrin receptor, CRP).

So, thanks to you she is willing to consider inflammation and infusion prior to Ferritin < 20! Thank you!!! She thought that soluble tranferrin receptor would give a good clue as to whether the ferritin measure is not accurate for me due to inflammation, she also is ordering CRP, though thought that wouldn't be as meaningful.

In any case, the future hope is for iron iv at the onset of symptoms, instead a 3 month long watch and wait period with diminishing quality of life. Thank you so much. I owe you a debt of gratitude!

 

[DianaCox]

I'm glad the paper helped, but I am SO sorry it took nearly 5 months to git 'er done - which reminds me, how is your son doing? Your whole family needs to look forward to a better 2018 (@Charris and @DSRIGGS too!).

 

[southernlady]

@hilary1617 Given the information in this thread, may I move it to the Vitamins and Labs forum so all can read the post and use the papers @DianaCox referenced?

 

[hilary1617]

@hilary1617 Given the information in this thread, may I move it to the Vitamins and Labs forum so all can read the post and use the papers @DianaCox referenced?

Hi Liz @southernlady ,

Sure, but is there a way on that forum to keep this not searchable without site access?

 

[hilary1617]

I'm glad the paper helped, but I am SO sorry it took nearly 5 months to git 'er done - which reminds me, how is your son doing? Your whole family needs to look forward to a better 2018 (@Charris and @DSRIGGS too!).

Thanks @DianaCox for thinking of Liam! He had some major complications and recovery is tough but he is well on the way to a better future. He will probably return to school full time next week, not sure though, he had one week back just before winter break (after nine weeks off) and he ran into an adrenal crisis on day two, so we had to cut it short to half days. The great news is that they think they got all of the tumor out and were able to preserve about 90% of the pituitary. So, long term prospects are good! 2017 was a tough year for all - yourself included. May 2018 bring us all joy!