Can we discuss anemia?

[Storygirl]

Please don't quote.

DD18 was diagnosed with anemia at the end of August. I can't access her chart right now, but her hemoglobin was 7.something. She was prescribed 325 mg ferrous sulfate to take twice a day. She had been craving ice all summer, and she had been having a very long menstrual period, so I was not surprised. She had a Nexplanon implant, which was the cause of the long period, and so she had it taken out a week ago. Her period is subsiding but is not all the way gone yet.

A few days before starting the iron, DD was feeling sick -- nauseous, and she threw up several times. Because it started before the iron, it wasn't related, but when we went back to the doctor, she said that the iron might be contributing to her nausea, and she should stop taking it until she was through whatever virus was making her feel poorly (negative Covid test).

So she had a rocky start with taking the iron. She has been back on it now for about a week, and she is feeling terrible. She came home early from school yesterday and stayed home today. I think her current symptoms are from both the anemia (fatigue, dizziness, brain fog, weakness and general malaise) and from the iron (nausea).

I don't have much experience at all with anemia. (DS18 took iron for a couple of months to boost his numbers, but he had no problems with it and no anemia symptoms, so that was entirely different.)  I've been reading on the internet but could use some real life information, if anyone would be willing to share.

How long might DD continue to feel the anemia symptoms before the iron starts working well enough? She has a follow up with the doctor in three months  one month for retesting.

Does this sound like she is not tolerating the iron pills? At what point would an infusion be better? At what point would you go back to the doctor early, to say that things aren't going well?

Any general suggestions?

She cannot afford to miss much more school, so we are hoping we can get her to feel better soon. Her appetite has been off, and she is a picky eater, so getting her to eat specific things might be challenging.

Thanks in advance!

Edited September 14, 2023 by Storygirl

[Harriet Vane]

With hemoglobin that low, she needs an infusion. ASAP. Push-push-push for it.

It takes months to raise iron with supplementation--with numbers that low she could struggle all year before she experiences relief. For context, when my hemoglobin was 13 and my ferritin was even lower, it took me eight months of taking 325mg daily to edge my ferritin score into the twenties.

She can take unsulphured molasses to help. Dissolve three tablespoons in lukewarm water and chug it down. She can take it plain off of a spoon, too--I preferred it diluted because otherwise that sticky stuff coated my mouth all day.

She might find that Floradix is easier on her system. 

[Harriet Vane]

Should have also said--have her take her iron with orange juice if possible. The C will help aid absorption.

[sweet2ndchance]

7 something is scary low. I agree she needs an infusion ASAP. It will take forever for iron supplementation to bring her numbers up especially if it is causing her nausea and vomiting so she isn't keeping it down.

I would go to the doctor now and talk about infusion. 

[Pawz4me]

I also think she probably needs an infusion ASAP. My hemoglobin has been in the 8-9 range and I could barely function. I can't imagine what it's like at 7.

[prairiewindmomma]

👆🏻👆🏻👆🏻all this AND ferrous sulfate is hard on the tummy. Iron bisglycinate is much easier for me to tolerate.

 

[Tiberia]

I agree with infusion, if possible. If not possible, my dd was able to tolerate Slow-Fe brand iron supplement. The other brands made her sick also. It took about six months, but her iron eventually got up to proper levels. 

[kbutton]

39 minutes ago, prairiewindmomma said:

👆🏻👆🏻👆🏻all this AND ferrous sulfate is hard on the tummy. Iron bisglycinate is much easier for me to tolerate.

My son was borderline for an infusion after surgery/transfusion. I read through threads on here, and Hema-Plex was recommended, which is iron in this form. It also has vitamin C and other supportive stuff in it.

His levels came up slowly at first and then so quickly that we have unopened bottles—I could mail some if you’d like to try it.

[Arcadia]

Did the doctor discuss the cause? Mine is the typical iron deficiency kind. Slow FE and Floradix both works for me but takes a long time. I get my levels up faster through food high in heme iron.  I do have to take B complex supplements during stressful times. If her anemia has a B12 deficiency component, then it is not just iron deficiency that she has to supplement for. I used to carry jerky as emergency food when I was a student for iron and protein. I didn’t realize I was low on protein as well until I had my first comprehensive metabolic panel done as an adult. Homemade bone broth was useful for me for getting nutrition in while having nausea.

[KatieJ]

My DD recently was given an infusion because her iron was 8 and her ferritin was single digits. Her Dr immediately scheduled 2 infusions a week apart. She feels fantastic!!!

[Junie]

My hemoglobin once got into the 6 something range. The next day I was given a blood transfusion (2 units) and I felt so much better.

I have no experience with iron infusions, but it sounds like that might be a good option.

Either way, I would be concerned and would push for more intervention to get her numbers up.

[HS Mom in NC]

When I was anemic there were 2 contributing factors: uterine fibroid tumors and an inability to absorb B-12 in my digestive tract.  If the B-12 test had come back normal the next step was to test for a bone marrow issue. A hysterectomy (I was done having kids 10 years prior to the surgery but fibroid surgery was also an option)  and twice a month self-administered B-12 shots for the rest of my life (oral supplements aren't an option for me)  resolved my anemia. Prolonged low levels of B-12 can cause nervous system issues.

So make sure they're testing to figure out why she's anemic while they treat symptoms.

[Trilliumlady]

Dealing with a similar issue here and hoping it’s just iron deficiency anemia.  DD15 just had labs done, platelets normal, Hgb 8.5, ferritin 2! B12 and Folate were both normal. Vit D 28.  Thyroid and CMP all normal. This all started last week.  Started on beef liver capsules 4 a day (6 is dosage for adult, she’s 99 lb so thought I’d ease her into it), 5000IU Vit D, Vit C, and then a gentle iron at night.  She got an iron infusion 300 mg of venofer yesterday.  Plan for us is to recheck labs a week from tomorrow and will repeat iron infusion if necessary and possibly a visit to hematologist if indicated (if levels aren’t starting to rise).  Her PCP said that kids generally can respond well to oral and iron infusions and have levels rise more quickly than adults.  I’m hoping that’s the case.  I need to get her Hemaplex as well but haven’t yet.  How she was functioning and running CC with these levels is 100% beyond me.  The only way I was clued to know something seemed odd was she cut herself shaving and bled into the next day with it.  

So, all this to say - I think that considering iron infusion and hardcore supplementation for a month or two then rechecking would be an appropriate option, rather than going to blood transfusion right away.  Just my two cents, take it for what it’s worth. 

Did her ferritin get checked at all??? I bet that’s low too!

[Arcadia]

11 minutes ago, Trilliumlady said:

The only way I was clued to know something seemed odd was she cut herself shaving and bled into the next day with it

My wounds tend to reopen many times which prolong the healing time. When I was in college, the doctor add blood clotting tests to my usual complete blood count when I ask about wounds reopening easily. I didn’t think to take down the names of the blood clotting tests but my results were all within normal range. I happened to have a paper cut during one of my routine visits and the doctor saw first hand the cut stopped bleeding and then open up again a few minutes later.  When I was monitored for anemia, the doctor put in orders for blood draw for anytime before, during (or immediately after) my periods. My blood pressure and hemoglobin levels both dip significantly during periods. Vit C deficiency also affect wound healing ability.

[Storygirl]

We got into her online chart. Her HGB is 7.9. All of the other hemoglobin-related tests were also flagged as low. Her ferritin was not checked.

I said in my OP that she is to have her blood rechecked in three months, but I really meant one month. I bet they will check ferritin then, because they said that there would be some additional things checked.

Technically, they didn't say they were giving an anemia diagnosis yet, but I've been calling it that. I'm sure the long period is one culprit, but she's been craving ice all summer -- as in asking for giant cups of ice alongside her drinks when going through a drive thru and going to UDF every day or so just to get a cup of ice -- before the menstrual issues began, so I bet the iron has been low for awhile.

We will contact the doctor tomorrow to ask if they will order an iron infusion.

Thank you all for your help!

@kbutton, I will PM you about your offer. Thanks!

[Harriet Vane]

31 minutes ago, Storygirl said:

We got into her online chart. Her HGB is 7.9. All of the other hemoglobin-related tests were also flagged as low. Her ferritin was not checked.

I said in my OP that she is to have her blood rechecked in three months, but I really meant one month. I bet they will check ferritin then, because they said that there would be some additional things checked.

Technically, they didn't say they were giving an anemia diagnosis yet, but I've been calling it that. I'm sure the long period is one culprit, but she's been craving ice all summer -- as in asking for giant cups of ice alongside her drinks when going through a drive thru and going to UDF every day or so just to get a cup of ice -- before the menstrual issues began, so I bet the iron has been low for awhile.

We will contact the doctor tomorrow to ask if they will order an iron infusion.

Thank you all for your help!

@kbutton, I will PM you about your offer. Thanks!

She is definitely anemic. I cannot imagine, with those numbers, why they would not formally give that diagnosis. Definitely have them run a full iron panel that includes ferritin. And really insist on an iron infusion--those numbers are terribly low. 

[Ali in OR]

Let us know what the doctor says. My college kid is low-ferritin, not anemic, and while it has come up a bit it's still pretty low after a year of supplementing. She's a runner--that uses up iron stores, so that's not helping. I'm serving a lot of meat while she's home for a few days, but maybe I should get her in to a doctor here next time she's home for a better long term plan (she just does student health center at school).

[sassenach]

12 hours ago, Storygirl said:

We got into her online chart. Her HGB is 7.9. All of the other hemoglobin-related tests were also flagged as low. Her ferritin was not checked.

I said in my OP that she is to have her blood rechecked in three months, but I really meant one month. I bet they will check ferritin then, because they said that there would be some additional things checked.

Technically, they didn't say they were giving an anemia diagnosis yet, but I've been calling it that. I'm sure the long period is one culprit, but she's been craving ice all summer -- as in asking for giant cups of ice alongside her drinks when going through a drive thru and going to UDF every day or so just to get a cup of ice -- before the menstrual issues began, so I bet the iron has been low for awhile.

We will contact the doctor tomorrow to ask if they will order an iron infusion.

Thank you all for your help!

@kbutton, I will PM you about your offer. Thanks!

Did they check MCV? Serum iron? Transferrin? 
It’s strange that they didn’t check ferritin, even though it’s a somewhat misunderstood lab value. MCV tells them more as far as microcytic anemia than ferritin but high ferritin in the setting of other labs that are out of whack can be a big clue about other diagnoses. There’s a whole picture that really gets pieced together when you have all the values. 

I would make sure she’s taking her iron with orange juice or vit C, and D. Personally, I would probably wait to push for an iron infusion just because I would want to see how her body responds to this. That will give you more information on the big picture. 

Edited September 14, 2023 by sassenach

[sassenach]

....mulling this over more. Is she still bleeding? Is this level of exhaustion (missing school) a change or a continuation of her previous symptoms? I wouldn't say she's not tolerating the iron (it can take a couple of weeks for supplementation to help with symptoms-even with infusions), but I do wonder if she's had a change in status. I would call the doctor to discuss.

I work in hematology/oncology so we sometimes get these admissions. We don't transfuse unless their hemoglobin is under 7. Iron infusions don't instantly raise hemoglobin and it's the low hemoglobin that's making her feel rotten. Her body is going to need a minute to build things back up.

[Arcadia]

22 hours ago, Storygirl said:

I think her current symptoms are from both the anemia (fatigue, dizziness, brain fog, weakness and general malaise) and from the iron (nausea).

Anemia can also cause nausea. Irritable Bowel Syndrome can cause both anemia and nausea. 

12 hours ago, Storygirl said:

I said in my OP that she is to have her blood rechecked in three months, but I really meant one month. I bet they will check ferritin then, because they said that there would be some additional things checked.

When I was diagnosed with osteoporosis, my oncologist took the opportunity to add in a bunch of blood tests with the “excuse” of finding the root cause. I didn’t have to pay. Besides the full panel iron test, my oncologist ordered the Vit D test, thyroid panel test, and celiac screening test. He also ordered the diabetes test but that was more for completeness because my previous blood tests results already shown I wasn’t at risk. 

[Storygirl]

4 hours ago, sassenach said:

Did they check MCV? Serum iron? Transferrin? 
It’s strange that they didn’t check ferritin, even though it’s a somewhat misunderstood lab value. MCV tells them more as far as microcytic anemia than ferritin but high ferritin in the setting of other labs that are out of whack can be a big clue about other diagnoses. There’s a whole picture that really gets pieced together when you have all the values. 

I would make sure she’s taking her iron with orange juice or vit C, and D. Personally, I would probably wait to push for an iron infusion just because I would want to see how her body responds to this. That will give you more information on the big picture. 

The test that they ordered is titled "CBC with differential COPC".  Yes to MCV -- 65.0. No to serum iron or transferrin that I can tell. I wonder if they will order those for the repeat test next month.

We did get her some orange juice. The difficulty there will be keeping her brothers from drinking it all! She hasn't been taking Vit D recently, but we have some and can add it.

 

[Storygirl]

3 hours ago, sassenach said:

....mulling this over more. Is she still bleeding? Is this level of exhaustion (missing school) a change or a continuation of her previous symptoms? I wouldn't say she's not tolerating the iron (it can take a couple of weeks for supplementation to help with symptoms-even with infusions), but I do wonder if she's had a change in status. I would call the doctor to discuss.

I work in hematology/oncology so we sometimes get these admissions. We don't transfuse unless their hemoglobin is under 7. Iron infusions don't instantly raise hemoglobin and it's the low hemoglobin that's making her feel rotten. Her body is going to need a minute to build things back up.

As of last night, she was still bleeding a little, but it's slowing down. She said it's about to stop, she thinks.

I'm trying to remember when she started missing school. It was definitely before she started taking the iron supplement. In fact, she was sometimes not feeling well even last spring and would want to come home early. We would try to discourage that, because she is in a cosmetology program, and her school hours count toward the training hours she needs for her eventual license. I bet her iron has been low for awhile. We just switched doctors, and the pediatrician didn't run blood tests (unless she had some reason to), so I think this was her first blood panel.

I think she has missed at least a day of school each week so far this fall, but she had something else making her sick during the first week of Sept (dr ran Covid test but it was negative). She's definitely seemed more fatigued this week than she was before and has complained a few evenings this week that she just feels terrible.

Her blood test was taken on 8/25. Her next blood test is scheduled for 10/6.

[Arcadia]

14 minutes ago, Storygirl said:

We did get her some orange juice. The difficulty there will be keeping her brothers from drinking it all!

I needed 3 times the daily value during flu or hayfever season. That is a lot of orange juice for me to drink (money wise) so I used ester C slow release or energen C (slow sipping) as supplements. For me, if my nose is running non stop or gums are bleeding, my vit c intake/absorption is probably deficient. 

[sassenach]

With an MCV of 65, they don't really need to see a low ferritin to know that she is iron deficient. 

I would probably stay the course but also reach out to the doctor just to be sure. I also agree with Arcadia that it would be a good idea to push for thyroid and celiac screening. 

Cook on cast iron, try to get a little more red meat into her. I really like Thorne Ferrasorb to help with iron absorption. 

 

[Storygirl]

Thanks for all of the helpful feedback!

[Arcadia]

I had many of the diagnostic tests done that is listed on this link due to being anemic most of my life. 
https://www.ncbi.nlm.nih.gov/books/NBK499905/

“Diagnostic Tests

The array of laboratory testing and imaging that may be pertinent in the evaluation of anemia include:

1. Complete blood count (CBC):

   • Includes hemoglobin, hematocrit, mean corpuscular volume (MCV), mean corpuscular hemoglobin (MCH) and mean corpuscular hemoglobin concentration (MCHC). 
2. Reticulocyte count:

   • Serves as an estimate of bone marrow red blood cell output.
3. Iron profile:

   • Includes serum iron, ferritin and total iron-binding content (TIBC).
4. Peripheral blood smear:

   • Microscopic evaluation of red blood cell morphology.
5. Serum creatinine:

   • Serves to assist in the evaluation of renal function.
6. Thyroid function tests:

   • Includes thyroxine (T4) and thyroid-stimulating hormone level (TSH).
7. Coagulation screen:

   •  Includes activated partial thromboplastin time (APTT), prothrombin time/international normalized ratio (PT/INR), and thrombin time (TT).
8. Liver function tests (LFT):

   • LFT panels may vary but should include calcium, transaminases, total protein, bilirubin, albumin, and alkaline phosphatase.
   • Additional tests that may provide information about the liver function include lactate dehydrogenase (LDH), gamma-glutamyl transferase (GGT), 5'- nucleotidase.
9. Hemolysis profile:

   • The profile contains haptoglobin, lactate dehydrogenase (LDH), and indirect bilirubin.
10. Macrocytosis profile:

    • The profile contains vitamin B-12, folate, methylmalonic acid, and homocysteine. 
11. Hemoglobin electrophoresis:

    • Evaluates the hemoglobin amino acid chains.
12. Abdominal sonogram:

    • Evaluates the size of the spleen size
13. Bone marrow analysis:

    • Hematology consult is required to obtain this. “

[Storygirl]

Thank you, Arcadia! That's very helpful information.

[KidsHappen]

I have twice in the past few years had very low counts due to my hiatal hernia (which they have since fixed). The first time my count was 5.9 and they decided to treat it orally. I was taking three different irons and it resolved the issue in about a month. The second time my count was closer to 5 and they did a transfusion. I was told that if you anemia came on slowly with the numbers getting lower over a long period of time it is safer to treat orally than if you suddenly lost a large amount of blood at one time. Since they treated my hernia and low B12 mu numbers have been great for almost a year now.