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derekliz

Going Off Another Thread About Ferritin Levels

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There was an earlier post about low iron and ferritin levels. My neurologist said (prior to POTS dx) that she likes to see ferritin levels for women at at least 70!!

Was wondering if most people here have low ferritin? So many of the symptoms of low ferritin are those of POTS:

General lethargy

• Unusual fatigue after exercise

• Pica (compulsive eating of non-food items)

• Pagophagia (compulsive eating of ice)

• Depression

• General weakness

• Fast heartbeat

• Palpitations

• Loss of libido

• Brain fog

• Hair loss

• Faintness and breathlessness

• Dizziness

• Long or unusually heavy menstrual periods

If you know your ferritin level and can post, I am really curious

Liz

Edited by derekliz

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I don't know my exact level, but it was just tested earlier this week and was within normal limits. A nurse at Mayo mentioned it to me because she often sees low levels in POTS patients and was interested to see that mine was WNL.

I started following the paleo diet in late March, so I eat lots of meat and therefore lots of iron. IDK about others, but I still have all my old POTS sx and am continuing to amass more all the time. It seems that ferritin doesn't affect my situation.

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Ferritin Levels

7/21/11 27 (range 10-232)

6/3/11 29 (range 13-150)

2/15/11 57 (range 10-232)

9/30/10 35.3 (range 10-232)

8/5/10 31 (range 10-232)

iron Levels

7/21/11 101 (range 40-175)

6/3/11 131 (range 35-155)

2/15/11 132 (range 40-175)

Iron Binding

7/21/11 TIBC 255 (range 250-450) % Saturation 40 (range 15-50)

6/3/11 TIBC 236 L (range 250-450) % Saturation 56 H (range 15-50) UIBC 105 L (range 150-375)

2/15/11 TIBC 215 L (range 250-450) % Saturation 61 H (range 15-50)

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3 weeks ago- ferritin level 13

Iron absorption 3%

My periods have been horrible for the past two years.

They came first at every two weeks then went back to every four then went to every three.

Read at your own discretion beyond this point:

They consist of large clots.

When I stand it pours out in a gush down both legs below knee level flooding right through my

pants and underwear.

Lately they don't end-they go on for two weeks.

When I do the gushing I get pale and a bit faint

and feel nauseous.

Best news I was hoping to make it to the second iron treatment before I had another.

Well not only did I make it to second but almost third and it's light as a feather so far.

The nurses said the iron may correct the bleeding problem but I was not really sure how.

Fingers crossed.

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Earlier this year my ferritin was 5 and iron sat 17% (should be at least 25%)

I started taking 80mgs of iron a day. A few months ago my ferritin was up to 9. In the next few weeks I'll have it rechecked.

Taking iron has helped a lot of my to the bone muscle pain

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Three years before diagnosis, my ferritin was 30. I was very symptomatic with lots of hair loss and horrible fatigue. I was taking three hour naps which didn't even help. It came up fast with oral supplements. It got as high as 300 but last check it was in the low 100s. The head of dermatology research at CC told me that a ferritin less than 70 in a female will cause symptoms. She said all the lab values need to be reassessed because they're too low.

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Songcanary......how were your other lab values....Tibc/ % saturation/iron/hct/hgb?

I have felt all along that my lower levels of ferritin are causing my symptoms

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My 16 year old was diagnosed with POTS in May, at the Mayo. They said her ferritin levels were too low and she's been on Iron 65 mg (equivalent to 325 mg Ferrous Sulfate) twice a day since then. Presently her levels are normal but I don't have those in front of me. I don't view her diet as being low in iron so it surprised us that she needed this supplement, and currently still takes it.

These are the results from May:

Iron..........35-145 She had 70

Tot. Iron Bind Cap 250-400 She had 352

PCT Saturation ...14-50 She had 20

Ferritin........20-307 She had 10

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I know you already know my story. But in 2009-my ferritin was as low as 1 but average was 3. It's unbelievable I know, but I also had valley fever which can feed off of the iron and my blood pressure was really off. And now the valley fever is under control but am at 10 for ferritin and saturation is usually 13% or lower. But I have orthostatic intolerance and autonomic neuropathy. Not sure if that matters. Thanks for the poll. Interesting to see how many have low ferritin.

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My results from 2 days ago

Iron 72 (30-160)

TIBC 286.0 (228-428)

Iron Sat 25% ( 20-55)

UIBC 214 (110-370)

Ferritin 35 (13-150)

Transferrin 284 (202-336)

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I don't know if I have ever had this measured however my Hb is always low side to too low. I am a vegetarian and for awhile (around age 38-40) my periods were horrendously heavy somewhat like Lieze describes. Now better, but I still take iron supplement per my doctor's orders. My hair was falling out excessively for awhile and I think it was due to low iron.

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Hi Derekliz,

When I was first diagnosed with ferritin deficiency I did not have an iron panel done so I don't know the other values. Subsequent panels were done after I was eating red meat and taking supplements and of course they were perfectly WNL. I wish I could give you more info, I know how you feel!

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This is a very old post but after a search of my MAYO tests (just one more look to try to determine what might not be right...still having PoTS symptoms and now a sudden onset shaking (of extremities).

Can someone chime in here. Doctors said my results were fine but.....

In Jan iron was 73

In June 44

TIBC

Jan 391

June 361

PCT

Jan 18.7%

June 12%

Ferritin

Jan 60

June 20

Only thing that came back out of range is PCT in June. I dot even know what PCT is as doc said it is ok. Can anyone help?

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Guest Alex

Suthrngal,

PCT is known as the plateletcrit, the percent volume of the blood occupied by platelets (thrombocytes). This has to do with the number and size of the platelets.

The normal range is 19 to 40% but I don't know how to interpret your numbers. I assume your dr looked at more numbers than those above when s/he said they're OK. For your own peace of mind, you might want to ask for more details about this.

The other thing, maybe you should talk to your dr about iron supplements if you feel that it may be an issue for you?! Just a thought...

Alex

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Thanks Alex for your time. Normal PCT for MAYO was 13% low end. Any idea what types of iron those with POTS take???

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Guest Alex

My dr recommended ferrous fumarate. I used to take 300 mg a day along with bit C to help its absorption. Now I'm taking 28 mg iron bisglycinate with vit C for 10 days a month. My current iron levels are fine.

Hope this helps,

Alex

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Do not know my actual levels but my GP found my ferritin to be low prior to being diagnosed with POTS (when she was still trying to help direct me to specialists and tests etc..) Have since been on iron, only every 2nd day as my iron level themselves were ok, just my iron stores were low. Interestingly enough, at one point after being diagnosed with POTS, she suggested I try to stop taking the iron, and I ended up having a very bad episode of tachycardia and autonomic surge where you feel like your HR will never come down....and a couple of weeks of overall worsening of symptoms...I never knew that low ferritin was common in us POTsies otherwise I never would have agreed to try stopping the iron. Can anyone explain the link?

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Guest Alex

Enid, that's definitely interesting...

Not sure what the explanation may be, but this explains the connection between low iron stores and fainting:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2475592/

Reduced Iron Stores and Its Effect on Vasovagal Syncope (Simple Faint)

This other article suggests a connection between low iron storage and POTS/NMS in adolescents:

http://www.ncbi.nlm.nih.gov/pubmed/23720007

Low iron storage and mild anemia in postural tachycardia syndrome in adolescents.

Abstract
OBJECTIVE:

We reported low iron storage in neurally mediated syncope (NMS). While reduced red cell mass indicative of anemia has been reported in POTS, iron indices and hemoglobin (Hb) data were not reported. We investigated whether POTS, like NMS, is associated with low iron storage and anemia.

METHODS:

Thirty two children evaluated in 2007 and 2008 for probable POTS by a standing or tilt test or both at Texas Children's Hospital were included in a retrospective study. We measured serum ferritin (SF) and Hb values. We defined iron deficiency as SF < 12 μg/L, low iron storage as SF ≤ 25 μg/L, anemia as low Hb values for age and sex, and POTS as ≥2 symptoms of orthostatic intolerance >3 months and increased HR of >30 BPM or HR of >120 BPM within 10 min of standing or 70° tilt.

RESULTS:

Twenty four children had POTS, ages 12-18 years, 17 (71 %) were females. Value range (median) of SF 2-289 μg/L (25), Hb 11.5-14.6 (12.5) in females and 12-15.9 g/L (13.6) in males. Patients with POTS, when compared with normal US pediatric population had higher prevalence of low iron storage (50 vs. 14 %), iron deficiency (25 % of teenage girls vs. 9 %, and 16 % of teenage boys vs. 1 %), and anemia (18 % of teenage girls vs. 1.5 %, and 43 % of teenage boys vs. 0.1 %).

INTERPRETATION:

Low iron storage and mild anemia are associated with POTS suggesting that low iron storage is a potentially pathophysiologic factor in both POTS and NMS.

Alex

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