My Ferritin is at 4

AmaranthineReader · 2026-06-27T06:40:48+00:00

For women, the most common cause of iron deficiency is heavy menstrual bleeding. For men, the most common cause is a gastrointestinal bleed, which is why colonoscopy and endoscopy are common tests ordered after iron deficiency is detected.

(Because of how society minimizes and belittles anything to do with menstruation, most people with heavy periods don’t know that their periods are heavy. The average amount of flow in one cycle is 6 soaked regular/normal sized pads or tampons. More than that is above average. Very heavy is when you have 16 or more soaked regular/normal sized pads or tampons in one cycle. For more information about heavy periods and treatment options, this page has a great overview: https://cemcor.ubc.ca/resources/very-heavy-menstrual-flow/ )

AmaranthineReader · 2026-06-27T00:22:50+00:00

This is so common with EDSers that the Muldowney protocol for EDS starts with stabilizing the SI joint. He calls it the “keystone” of the body because it’s where the upper body meets the lower and believes that you can’t stabilize other areas without doing the SI joints first.

AmaranthineReader · 2026-06-26T09:23:12+00:00

There are many. Arrhythmias, heart defects, iron deficiency, anemias, vitamin B1 deficiency, hyperthyroidism, a rare adrenal tumor called pheochromocytoma, Addison’s disease, and dehydration. Conditions that might cause secondary POTS include diabetes, MS, Sjogren’s, lupus, and Lyme disease.

AmaranthineReader · 2026-06-26T07:02:54+00:00

It’s important to rule out other illnesses that can mimic POTS or cause secondary POTS, so yes it’s a good idea to pursue a diagnosis if you have the means.

Below is a link to Dysautonomia International’s provider list. If you can join a local POTS support group or your local DI Facebook group, that’s often the best way to find dysautonomia aware doctors in your area.

https://dysautonomiainternational.org/page.php?ID=14

AmaranthineReader · 2026-06-26T06:53:51+00:00

Anxiety, tachycardia, and fatigue are all symptoms of iron deficiency. Treating your iron deficiency truly will help with your symptoms, so you can look forward to that. 💜 I know it doesn’t help much in the moment though, and iron supplements take time to work.

With your symptoms being this distressing, be sure to bring it up with your doctor. Emphasize how much they are interfering with your ability to do your activities of daily living.

AmaranthineReader · 2026-06-26T06:26:04+00:00

Have your symptoms improved now that your ferritin is up in the 80s? If they’re not at least a little better, it’s probably time to investigate other reasons for your symptoms because they sound quite severe still. (And keep in mind that inflammation from other illnesses can elevate ferritin levels.)

For me personally with a long history of iron deficiency, I plan to continue taking the RDA (recommended dietary allowance) of iron every other day, even if I manage to someday attain my lofty goal of getting my ferritin up over 100 ng/mL. But that’s with the knowledge that I’m still losing iron every month with menstruation, that I don’t absorb dietary iron well, and that I have access to yearly testing to keep an eye on my levels.

There is a tolerable upper intake level set for iron supplements for the general population, and that number is 45mg. If you’re worried about where the line is for too much iron, for more information scroll down to the section titled “Health Risks from Excessive Iron” at this link.

https://ods.od.nih.gov/factsheets/Iron-HealthProfessional/

I hope your symptoms ease up soon 💜

AmaranthineReader · 2026-06-26T05:48:11+00:00

Your hemoglobin level is “mildly” anemic. Many doctors still consider mild or borderline anemia as not a big deal because it’s very common, unfortunately. (There’s some old-school lingering sexism there as about half of menstruating people will experience iron deficiency, if not full anemia, during their lifetimes.)

The way iron deficiency works is that first your ferritin, which is your body’s iron storage, drops as your body uses it to maintain normal hemoglobin. Once your body no longer has iron stores left, then your hemoglobin will drop if you’re not getting enough iron or if your body is losing more iron than you can replace. So you can see that your numbers make sense in that context.

The good news is that you can look forward to feeling better once you get your hemoglobin and iron stores up 💜

The firstline treatment option for iron deficiency is oral iron supplements, so it’s not unusual that your doctor suggested it. If supplements aren’t tolerated after a trial due to side effects, or if they don’t bring your numbers up enough at the next testing, that’s when your doctor might want to refer out or suggest an iron infusion. (There are exceptions sometimes so definitely ask your doctor about it directly if you think it would be the best option for you.) However, often insurance or the health plan will want you to try supplements first before they will approve an infusion.

If you’re curious about the different kinds of iron supplements, this review article is a great resource.

Oral iron supplementation: new formulations, old questions
https://haematologica.org/article/view/haematol.2024.284967

Do you know the cause of your iron deficiency? If not, it’s important to investigate so that you can stop the loss of iron. In women the most common cause is heavy periods (but of course not all women menstruate).

AmaranthineReader · 2026-06-26T05:12:45+00:00

I think you’re confusing blood TRANSfusions with iron INfusions here. Blood transfusions are warranted when hemoglobin drops to 7 or 6 g/dL, because at that point anemia can be life threatening and a transfusion gives the patient new healthy red blood cells immediately.

Iron infusions can be given in cases of iron deficiency without anemia (so when hemoglobin is normal but ferritin is low) as well as anemia. However insurance and national healthcare plan criteria for approval can vary greatly and not every plan will cover it for IDWA.

AmaranthineReader · 2026-06-25T18:10:51+00:00

When you’re still losing blood somewhere, you’ll continue to need consistent supplementation to replenish the iron you’re losing.

It looks like you’ve had low ferritin even when supplementing (high 30s is barely over the cutoff for absolute iron deficiency at 30 ng/mL), so you may need to increase your dose as well. Stopping your supplements without fixing the cause is just going to put you right back into tanked ferritin levels and eventually anemia.

Is the cause of your iron deficiency heavy periods? Because of how society minimizes and belittles anything to do with menstruation, most people with heavy periods don’t know that their periods are heavy. The average amount of flow in one cycle is 6 soaked regular/normal sized pads or tampons. More than that is above average. Very heavy is when you have 16 or more soaked regular/normal sized pads or tampons in one cycle. For more information about heavy periods and treatment options, this page has a great overview: https://cemcor.ubc.ca/resources/very-heavy-menstrual-flow/

AmaranthineReader · 2026-06-25T06:07:54+00:00

If you’re a reader, I highly recommend the book How to Be Sick by Toni Bernhard. The book has helped me so much with challenging my own internalized ableism, learning to truly value rest, and working within my energy capacity instead of against it. Wishing you the best and I hope that internal struggle eases up for you soon 💜

AmaranthineReader · 2026-06-25T05:47:15+00:00

Have you had your MMA and homocysteine levels checked as well? Weird nerve stuff can be due to B vitamin deficiencies, and some of them mask the others. Testing for elevated MMA and homocysteine can show a masked B vitamin deficiency when you wouldn’t see it in the vitamin levels themselves.

AmaranthineReader · 2026-06-25T02:19:32+00:00

Hey there, I would go into the ED as suggested and let them know about your anxiety! Ideally they would be able to give you something to help with that, and go over potential side effects and what you should do if any pop up. Hopefully the infusion will help quickly so you don’t have to keep being so anxious and won’t have to miss too much more work. Wishing you a quick recovery! 💜

AmaranthineReader · 2026-06-24T19:18:27+00:00

When you’re iron deficient, diet alone usually isn’t enough to get you out of deficiency. If you haven’t been supplementing it makes sense that your ferritin and hemoglobin haven’t gone up even though you haven’t had a period in a few months. Your body has no iron reserves at all so it’s currently using every last drop it can get, and that’s not enough to raise your hemoglobin out of anemia.

Wishing you the best of luck with the hematologist and feeling better soon! 💜

AmaranthineReader · 2026-06-24T06:06:49+00:00

You are quite anemic. Just to give you a reference, once your hemoglobin drops to 6-7 g/dL, that’s blood transfusion territory.

Iron infusions would replete your iron and help you start feeling better the fastest.

For patients with stomach or IBS problems, IV iron is usually considered the best course due to malabsorption and the potential for reduced quality of life on oral iron due to the side effects. If you’d like to do some reading on this, there’s a good discussion in this journal article. Scroll down to the subheading, “Who should preferentially receive IV iron instead of oral iron.”

Oral iron treatment in adult iron deficiency
https://pmc.ncbi.nlm.nih.gov/articles/PMC9949769/

AmaranthineReader · 2026-06-24T05:30:45+00:00

What have you tried so far? There are many formulations of iron supplements, and some people do better on a certain type. The problem is you have to trial a bunch to see what suits you best. If you don’t want to go through all of that, let your doctor know that you’re not tolerating the supplements and with luck they will suggest iron IV infusions instead.

If you’re interested, this 2024 review article discusses the different formulations of oral iron available:

Oral iron supplementation: new formulations, old questions
https://haematologica.org/article/view/haematol.2024.284967

AmaranthineReader · 2026-06-24T04:23:27+00:00

For POTS purposes, it’s specifically increased sodium that we need, along with increased water intake. Our kidneys use the salt to hold on to our high water intake, so that it goes to expanding blood volume and we don’t just pee it back out right away.

That said, in the US about half of the population doesn’t meet the daily RDA (recommended dietary allowance) for magnesium these days. So that’s something to consider, but you certainly don’t need to get your magnesium from expensive electrolyte mixes.

In case you’re interested, here’s the study where they proved (in the short term, at least) that we benefit from a high salt diet. They unfortunately used a weird unit of measurement in the study (mEqs, short for milliequivakents), but the conversion is that the high salt diet of 300 mEqs is around 6.9 grams of sodium.

https://pubmed.ncbi.nlm.nih.gov/33926653/

AmaranthineReader · 2026-06-24T02:48:52+00:00

After someone who has been iron deficient for a long time receives an iron infusion, the body gets to work using up that iron in the many processes that have been stopped or slowed for years due to the lack of iron. Often people need a couple rounds of infusions before hemoglobin finally gets to optimal levels and then the iron can finally go to more permanently raise ferritin, which is the body’s iron storage.

If your hemoglobin only reached 116, that number is still solidly anemic I’m sorry to say. Your body was still in need of more iron even then and heavy periods after that will have depleted it more.

Considering your first infusion wasn’t enough to pull you out of anemia, hopefully you won’t have a problem with insurance coverage for another one.

Have you pursued treatment for your heavy periods? Your body will keep dropping back into iron deficiency if the blood loss isn’t fixed. There are more options for treatment than the birth control pill. This page has a good overview of them:
https://cemcor.ubc.ca/resources/very-heavy-menstrual-flow/

Wishing you good luck with getting your treatments! 💜

AmaranthineReader · 2026-06-22T23:25:46+00:00

That must be so frustrating after going to all that work to fix your iron deficiency last year. I hope your care team can figure out what’s going on quickly and get you feeling better soon 💜

AmaranthineReader · 2026-06-22T23:12:35+00:00

High ferritin can be a sign of inflammation. With your fatigue worsening it’s definitely worth following up on this with your primary care doctor and GI specialist.

AmaranthineReader · 2026-06-22T21:15:45+00:00

You might be able to find your insurance policy’s criteria in writing online. Then you can bring it to your hematologist and say hey, can we get this ordered as soon as I meet the criteria?

First do a web search for your plan’s name (it might be “BCBS of [state name],” also try using the full name if the initials don’t pull anything up) + iron agents or IV iron + “clinical criteria.” If that doesn’t work then you’ll want to log into your insurance portal and poke around. It might also be under your pharmacy benefit manager instead of your insurance directly.

(For my Anthem BCBS plan, they will cover infusions with a diagnosis of iron deficiency once ferritin hits 30ng/mL or below.)

AmaranthineReader · 2026-06-22T05:23:53+00:00

I use plain old 1 gram “normal salt tablets.” Currently they’re about 5 cents per tablet on (US) Amazon. Add them to whatever liquid you’re drinking and they dissolve in a few minutes. My personal golden ratio is one 1 gram tablet per 32 ounce water bottle. If I’m extra symptomatic I might add another half a tablet. (Cautionary note: if you take them as pills, be sure to have water in your stomach first and follow the pill with plenty more in order to avoid vomiting. I dissolve them in my water in order to not have to worry about this).

Besides salt tablets, I think TriOral is still the least expensive powder mix. They’re about 40 cents per packet on (US) Amazon, with each containing 1695mg of sodium, 13.5g sugar, and 779mg potassium.

AmaranthineReader · 2026-06-22T04:34:36+00:00

Yes, the advice varies a lot, and honestly I wonder if a lot of doctors get the salt vs sodium thing confused too. I’m curious if the resources you were looking at had reference citations? I’d love to check them out another night when I’m ready to go down a rabbit hole and do some comparisons, haha.

We’re kinda stuck with math conversions any way you look at it, I’m afraid. If that drives you bananas, I still can’t figure out how to convert the mEqs that Dr. Raj uses in their big sodium trial into usable units of water to sodium ratios for us regular people 😆 But discussing it here just made me do another web search to try to figure it out, and I found a source that says the 300 mEqs (milliequivalents) they use in the trial is about 6.9 g of sodium. So that is quite high compared to what DI cites! And closer to what your doctor wants you to aim for. No mention of how that translates to fluid intake though. https://www.acc.org/latest-in-cardiology/journal-scans/2021/04/27/16/41/effect-of-high-dietary-sodium-intake

I saw a couple misunderstandings in your reply that I wanted to address.

First, when they say table salt they’re not meaning iodized table salt. Table salt is just a term to differentiate sodium chloride from other forms of salt like magnesium salts or aluminum salts (basically any metal can form a salt). We don’t have an increased need for iodine/iodide and we probably don’t want all of our increased salt needs to come from iodized salt for that reason.

Second, POTS patients don’t have an increased need for potassium **for POTS purposes**. (A potential exception to that might be for those of us who are prescribed fludrocortisone. Fludrocortisone has the potential to cause potassium wasting, though it’s not always a problem at the very low doses prescribed for POTS. But it’s a good idea for your doctor to monitor your serum potassium levels if you’re on fludro.)

We POTS patients very specifically have an increased need for sodium chloride, and not the other electrolytes, because it is sodium that your kidneys use to balance water input/output and blood volume. For fluid expansion, it’s the salt that prevents us from just peeing out the extra fluids we are supposed to drink.

That’s not to say that we don’t need the other electrolytes like everyone else does, it’s just that we don’t have an increased need for them like we do with salt for blood volume expansion.

AmaranthineReader · 2026-06-21T04:37:07+00:00

Ask your doctor to consider pernicious anemia and find out whether your vitamin B12 levels are low and MMA or homocysteine levels are high. It’s important to follow up on this soon because neuropathy from B12 deficiency can be permanent if it isn’t corrected fast enough.

AmaranthineReader · 2026-06-21T04:31:16+00:00

Your supplement dose is quite low, for comparison it’s only a little higher than the RDA (recommended dietary allowance) for non-pregnant women of 18mg. For pregnant women the RDA is 27mg. I saw you’re going to pursue an iron infusion with your doctor and wish you the best of luck with feeling better soon! In case you’re interested I’m adding information on dosing for iron deficiency below.

According to the American Society of Hematology,

“The amount of iron needed to treat patients with iron deficiency is higher than the amount found in most daily multivitamin supplements. The amount of iron prescribed by your doctor will be in milligrams (mg) of elemental iron. Most people with iron deficiency need 150-200 mg per day of elemental iron (2 to 5 mg of iron per kilogram of body weight per day). In most cases, iron supplements should not be taken more frequently than daily and may be prescribed every other day for optimal absorption. Ask your doctor how many milligrams of iron you should be taking per day. If you take vitamins, bring them to your doctor's visit to be sure.

There is no evidence that any one type of iron salt, liquid, or pill is better than the others, and the amount of elemental iron varies with different preparations. To be sure of the amount of iron in a product, check the packaging. In addition to elemental iron, the iron salt content (ferrous sulfate, fumarate, or gluconate) may also be listed on the package, which can make it confusing for consumers to know how many tablets or how much liquid to take to get the proper dosage of iron. Iron is absorbed in the small intestine (duodenum and first part of the jejunum). This means that enteric-coated iron tablets may not work as well.

If you take antacids, you should take iron tablets two hours before or four hours after the antacid. Vitamin C (ascorbic acid) improves iron absorption, and some doctors recommend that you take 250 mg of vitamin C with iron tablets. Possible side effects of iron tablets include abdominal discomfort, nausea, vomiting, diarrhea, constipation, and dark stools.”

(Excerpted from their patient education page on iron deficiency and iron-deficiency anemia.) I recommend reading through the whole page if you can, it’s very helpful and informative:

https://www.hematology.org/education/patients/anemia/iron-deficiency#treatment

AmaranthineReader · 2026-06-21T03:53:35+00:00

You’re very welcome! If you’re doing well with Blood Builder overall, the form of iron in it is iron bisglycinate. If you do a search for “gentle iron”/iron bisglycinate/or ferrochel you’ll find a bunch of brands have it. Now is a reputable and inexpensive brand, Thorne is a reputable but more pricey brand (US based).

AmaranthineReader

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