Ferritin up, but the fatigue remains
August 14, 2017 6:47 PM   Subscribe

I had a severe iron deficiency, diagnosed in June. My numbers have improved a lot but I'm still.... really, really struggling, in more ways that one, and my doctor has no idea what to do.

I've asked a couple questoins about this--sorry for the repeat questions. My doctor hasn't been very helpful so far.

At the end of May, my hemoglobin was 10.8, iron ~40, ferritin 3, saturation around 10%. I felt TERRIBLE--completely exhausted, very dizzy, chest pain, short of breath, tachycardia, very weak, just overall awfulness. I was afraid to shower because I felt so faint all the time. I couldn't do anything. My doctor told me to take an iron supplement and come back in three months. In retrospect, I'm pretty appalled they didn't do more, but I can't change that now.

I had some better days in June, but in July I had two heavy periods from going off birth control, + a heavy one mid-June, and my symptoms went crazy again. I went back to the doctor, who retested my levels. They were: ferritin 22, hemoglobin 12.something, iron 100, saturation 25%. So, that's a big improvement! But I still felt crummy, and I still feel crummy now, mainly profoundly exhausted.

Here's what's gotten better:
No more chest pain
My anxiety is much better
The tachycardia is much better
I'm not getting skipped beats
I'm not getting short of breath
I can DO more, even if I'm dealing with a LOT of exhaustion. I'm in the process of moving, and last week I went to my new apartment three times and scrubbed it clean (with help) and wasn't utterly wiped out, though I was very tired.
I can stand for longer, though standing is still very hard. Last week I set a new record by standing for 30 minutes without feeling too faint.

Symptoms I still have:
PROFOUND fatigue. It does wax and wane, but it's overall debilitating. What happens is within 30 minutes to an hour of waking up, I get hit with this wave of exhaustion, and I feel like I need to lie down. My eyes get heavy, I'm exhausted, I almost feel disoriented. The bulk of the feeling seems to settle around my eyes.
Severe brain fog--I can't think.
I'm still getting lightheaded sometimes.
Although I can stand for longer, it's still very hard to stand (just stand, not walking) without feeling faint and exhausted.
I'm having on and off digestive problems (semi-diarrhea).

Even though it seems to be getting better, I'm still deeply struggling. I am just so exhausted and I'm terrified it won't ever go away. I can't do anything I enjoy. I can't run, I can't go to yoga class, I can't hike. Going to the store is so difficult for me. The fatigue hits me and I get disoriented and exhausted and it's just impossible to go shopping.

And I just.... I don't know what to do. This is taking away my quality of life. I'm miserable. The last time I went to the doctor she told me she didn't know what to do with me, which felt awful. All I want is to be able to do things I enjoy, and I literally cannot, and it's really fucking me up emotionally (I have a therapist already).

Is it possible for symptoms from anemia to linger like this? I know optimal ferritin is above 50 and I'm not there yet. Moving IS also exhausting, so perhaps that's causing an increase in symptoms. I think this is either leftover from the low iron OR the iron uncovered/triggered a new health condition for me. I didn't have any of these symptoms before the anemia. I also feel the same way I felt when the ferritin was very low--I don't have any new symptoms, and it's not getting worse. It's just THERE.

IF it could be something else, what do I say to my doctor? What do I ask for? I have had: a stress test/stress echo, tests for B12, vitamin D, an electrolyte panel, a mono test, my thyroid tested (though I don't think it was a ~full panel~; not sure how this works but it was just TSH), obviously the iron panel/CBC, aaaand probably some other things I'm forgetting. I'm as certain as I can be that this isn't depression; it feels very physical, definitely unlike any emotional symptoms I've ever had before. My doctor has been good but if she can't help with this I'm definitely going to get a second opinion with an internist.

I'm desperate for relief. I'll do anything. TIA.
posted by Amy93 to Health & Fitness (25 answers total) 6 users marked this as a favorite
Iron transfusion. It's an IV drip. Takes an hour, you do a 2-4 spaced treatments. It's good that you're seeing improvement with supplements alone, some people also have malabsorption issues. But this will get your numbers up a lot faster.

Cut out coffee if you drink, it's an iron leech.
posted by fritillary at 6:54 PM on August 14, 2017 [2 favorites]

What's your diet like? Are you eating breakfast? Perhaps this is a blood sugar thing. Can your doctor get you one of those test strip things to check your blood sugar a few times a day?
posted by ananci at 6:56 PM on August 14, 2017

Quick threadsit, sorry: my doctor told me I can't get iron infusions because my numbers are too high, which they probably are, which sucks. I checked my blood sugar for a while and sent my doctors the numbers. She said it was fine.
posted by Amy93 at 6:59 PM on August 14, 2017

Get an iron infusion. Surely they can do "less" of one right?

Check your diet - something like celiac?

Check full thyroid and parathyroid levels.

And uhh.. I hope it's not this but it could be POTS or something like chronic fatigue syndrome or an autoimmune conditon.

The fine people of metafilter suggested I may have POTS (postural orthostatic tachycardia syndrome). And I was like "Nahhh..." UNTIL I started almost passing out every time I stood up. I did at at-home-tilt-table test and watched my heart rate rise (past 130bpm) and my legs turn purple and my symptoms go crazy.

Use a blood pressure/heart rate monitor. Lay down for a bit and check levels. Stand up and check levels every 5 mins. I went to my doctor and to a POTS specialist with the results and just had to wear a 24 hour heart monitor to confirm. Nothing showed on other heart tests or echo test.

For me, standing is the ABSOLUTE worst. Walking is much better.

Even if it's not POTS - which.... again... your symptoms sound extremely similar to mine.. still get yourself some firm compression socks and see if it helps. (I wear the 20-30 mmhg graduated compression ones. They sell them for cheaper marketed toward athletics.)

Memail me if it turns out you've got it or want more info.
posted by Crystalinne at 7:08 PM on August 14, 2017

One more question and I swear I'll stop threadsitting. I know a lot of y'all are suggesting I get an iron infusion. But like HOW, if my doctor won't refer me and doesn't think it's necessary? Even if I could see a hematologist I'd be shocked if one would give me an infusion with an iron level of 100, even if my ferritin is low normal. If anyone knows a good hematologist in the Rochester/Buffalo area who would do this for me, PLEASE let me know. I'd love even one small infusion if that would get me out of this funk but I highly doubt any doctor would do this for me at this point because my numbers are too "good".

Chronic fatigue or an autoimmune thing are my biggest fears right now. I plan on doing an elimination diet once my move is done.
posted by Amy93 at 7:17 PM on August 14, 2017 [2 favorites]

Buy some support hose, jazz tights, or fishnets for dancing. Get some support for your legs.
posted by Oyéah at 7:17 PM on August 14, 2017

If you went off birth control, are you pregnant? I feel like that in the second month of pregnancy.
posted by Oyéah at 7:19 PM on August 14, 2017 [1 favorite]

Your hemoglobin is just at the threshold of "normal." Dip a tenth, and you'd be under normal again. And 20 is the very bottom threshold of "normal" for ferritin -- on a scale that goes up to 200.

I'm surprised your doctor is so resistant to the iron infusion. I think this is somethign that really varies by doctor. I'd consider finding one who is more open to the idea that your exhaustion is anemia-related especially as you think it tracks to your blood loss and iron levels.

I'd also investigate the cause of your heavy periods. You might have fibroids that can be shurnk which, in combination with getting your iron levels up, could fix this long term.
posted by mrmurbles at 7:31 PM on August 14, 2017 [1 favorite]

IANAD, but it seems to me that you've had your symptoms treated, but you don't know why you were anemic. Anemia can have many causes, some more serious than others. I really think you need to see another doctor. You need someone who will figure out what's causing this.

About a year ago, seeking a second opinion literally saved my life. In my case, it was because no one thought to test me for anemia, though I now know my symptoms were classic. My hemoglobin was 4.3, so I'm not saying our situations are similar, but you need someone who will look for the cause and not just throw supplements at you.
posted by FencingGal at 7:50 PM on August 14, 2017 [3 favorites]

Maybe you have candida overgrowth, adrenal fatigue, or mercury poisoning? I would suggest going to a naturopath, and see what they have to say.
posted by désoeuvrée at 8:00 PM on August 14, 2017

20 is still the bottom of the "normal" level for ferritin, and certainly it is not unusual to still feel lousy if 22 is still much too low for you--which it clearly is, since you still have symptoms. Everything you're feeling is quite attributable to low ferritin. You know that raising your ferritin even to 22 has eliminated some symptoms. You're going in the right direction, but you still have a long way to go.

I didn't start feeling significantly better until my ferritin levels hit the 50s. When I got above 60 (I was measured at 66 in March), nearly all my fatigue went away and so did my shortness of breath. I didn't think I was very short of breath before, but the difference is huge.

Raising ferritin levels is a slow process. From what I've read (and I can't claim that I'm any better at googling than anyone), cardio exacerbates low ferritin because it draws from iron stores in order to carry more oxygen to your muscles. You also can't let your hemoglobin get too high, which is no doubt why your doctor doesn't want to do an infusion--your hemoglobin is normal, and a too-high level of hemoglobin is toxic and wrecks your liver. Not a win.

So my armchair recommendation:

1. Keep taking iron supplements. Expect to keep doing this for another year. This is a marathon, not a sprint. Take with vitamin C to maximize absorption.

2. Keep getting tested every 3-6 months to make sure your hemoglobin remains normal.

3. Consider reducing your cardio to less intense forms, like walking or moderate bicycling.

4. If you have heavy periods, which is very common while anemic, consider taking birth control pills or using a method that stops you from menstruating (e.g. Taking BCPs and skipping the placebo pills for a few months at a time). It's easier to raise ferritin levels when not running the constant period treadmill.
posted by Autumnheart at 8:06 PM on August 14, 2017 [2 favorites]

One more thing--intestinal upset and diarrhea are common side effects of taking iron (as is nausea). To minimize that effect, try taking iron in the evening, with a few bites of food or some juice to help your digestion. Not milk--calcium prevents iron absorption.

Hang in there. You gained 19 points in a few months, so if you keep doing what you're doing, you'll gain another 19 points (give or take) and will be around 40 by Thanksgiving. By the end of the year, you'll be near 50 and should notice a marked improvement. It will go faster than you think. I'd say that once you've reached ferritin levels of 60, if you still feel shitty, then investigate other causes. But give this a chance first.
posted by Autumnheart at 8:18 PM on August 14, 2017

Nthing celiac screen, check tTG-IgA, and get a sleep study. You should qualify based on daytime sleepiness. A CPAP might make a huge difference if you have OSA/CSA. Maybe ask for colonoscopy/endoscopy to see if it's something like microscopic colitis. Rule out a bile acid disorder.
posted by OneSmartMonkey at 8:27 PM on August 14, 2017 [1 favorite]

Please get a second opinion on the iron infusions. I've had it done twice - it's especially important for ferritin levels, because that's where excess iron is stored, so it takes a very long time to build up properly. And do try to figure out the root cause of your anemia - I'm in the midst of a course of iron infusions right now and the nurses say it's critical to understand *why* it's happening in the first place (in my case, it's pregnancy).
posted by olinerd at 8:32 PM on August 14, 2017

How much iron are you taking? I got switched to a much higher dose (400mg now) when my numbers dived and I'm also on a super high B-complex supplement. You need to cut down on caffeine and it helps to take the iron with orange juice or something with vitamin C in it to push absorption up. A lot of iron supplements are actually pretty weak and meant for maintenance, not restoring anemia.

If your periods are heavy, definitely consider birth control options to help. If they are the source of the anemia - very always heavy periods can cause that, three are several treatments behind birth control too. An obgyn should be able to help you.

And auto immune stuff sucks but it beats being exhausted all the time. Get a second opinion, your doctor frankly sucks hard. You're still exhausted and they're not suggesting anything else, ridiculous.

I was exhausted because of severe migraines, stress and it turned out tiny blood clots. I don't love the bunch of medication I have to take daily, or the doctor appointments every month but I'm awake and pain free most of the day, not falling asleep at the table and unable to finish a thought because I'm so damn tired.

Find another doctor.
posted by dorothyisunderwood at 9:23 PM on August 14, 2017

And looking at your history in ask me, you've been sick a long time on and off. It's time to talk to a rheumatologist or another specialist because this isn't just one isolated bad spell.
posted by dorothyisunderwood at 9:27 PM on August 14, 2017 [1 favorite]

You seem to be expecting a magic change. You had an extended period of inability to act. You're now feeling much better in so many ways, but doing things still exhausts you. Speaking from experience, you need to just keep doing things. You're in the process of rebuilding your capacities. It doesn't happen automatically just because your "numbers" are better. You are re-conditioning yourself. Bear with it. It will get better. Maybe not as instantaneously as you hoped but you will see a steady, not that slow, improvement IF you keep pushing yourself moderately.
posted by uncaken at 9:47 PM on August 14, 2017 [1 favorite]

My girlfriend had similar symptoms and had a measure of success through taking magnesium as well as iron supplements. I don't know if you had your magnesium levels checked, but it might be something to raise with your doctor?
posted by knapah at 10:23 PM on August 14, 2017

Maybe you have candida overgrowth, adrenal fatigue, or mercury poisoning? I would suggest going to a naturopath, and see what they have to say.
posted by désoeuvrée at 11:00 PM on August 14 [+] [Flagged]

Might as well take a big fat placebo while you're at it.

Anyway, I second (or third) the question of finding out *why* you were anemic in the first place? Taking iron supplements addresses the symptom (low iron) and its attendant co-symptoms (fatigue, etc.) but doesn't explain what caused low iron to start. Were you just not getting enough iron in your diet? I haven't read through your history so I don't know your lifestyle, but could you start eating high iron foods in addition to the prescribed supplements? Chicken livers and hearts are packed full of iron and can be tasty if prepared correctly. If you're veggie, there's spinach and other high iron veggies.

Celiac has been mentioned and it's a possibility (though extremely overdiagnosed/over-self-diagnosed). There is a test for celiac and you might ask for it. Your doctor might balk, because it is a bit of a fad diagnosis, but it's your body and you should get it checked. Keep in mind that celiac usually means that you're not absorbing enough of many nutrients and you say you were tested for b12 and D deficiencies.

And yes, if you think your medical needs are not being met or heard, you should absolutely seek a second (or third) opinion and find someone who will listen to you and try to help you.
posted by runcibleshaw at 10:40 PM on August 14, 2017 [2 favorites]

Nthing the iron infusion, to the point where I would find another doctor and insist on it. I had heavy long periods and symptoms and numbers like yours. My doctor gave me one and within a few weeks the difference was like night and day. You can't afford to wait another three months for more iron supplements to work.
posted by Jubey at 12:12 AM on August 15, 2017

This might not be useful to you, but here in Australia some GPs (primary care doctors) do iron infusions, and they are much less fussy about your levels than haematologists - I got turned away by the haematologist with a hemoglobin of 10.7 but had no trouble with the GP. That was about 3 weeks ago and I'm just starting to feel significantly better. If this is a thing where you are, it is worth a call-around to local clinics to see who does iron infusions.

I'm also going to stress pushing to get the cause of your anemia investigated, because if it is an ongoing problem, like heavy periods, it will just continue. If your doctor is not willing to investigate and find a solution, find a new doctor.
posted by neatsocks at 4:36 AM on August 15, 2017

I'm so sorry you're suffering like this. I remember your previous questions.

The first step is to find another doctor, because yours has tapped out. I would take a print out of this question and previous questions with you, to emphasize how long you've been suffering. You're right that how you're feeling is not normal. Trust your gut, even when medical professionals are brushing you off.

Next, at the appointment, ask if they can prescribe you an iron infusion. Bring any test results you can with you, especially if your doctors aren't part of a network where they can view your file.

Was your B-12 level normal? Does this new doctor think it was normal? If not, ask for a B-12 injection.

Ask for any screening they can do for autoimmune diseases. (There is a simple blood panel they can do for celiac, for example.)

You might also find it helpful to go back on birth control to suppress your periods for a while if they're heavy.

All of the above steps will work towards figuring out why you're anemic.

Last, and I hesitate to mention this at all, but here is a kooky looking practice in your area that offers IV infusion "therapies." They might be willing to give you a cocktail of iron etcetera since that's what they are selling.
posted by purple_bird at 9:13 AM on August 15, 2017

You mentioned that you had an electrolyte panel. How long ago was that? If you are having semi-diarrhea on a regular basis I would expect your electrolytes to be out of whack at this point - to get them back in good shape you would need to drink lots of fluids, one quarter of them salty fluids like chicken broth, one quarter of them fluids with potassium, like fruit juice or milk, one quarter of them water, and one quarter of them whatever you like other than fluids with caffeine or other diuretics. As to the amount of fluid you should be drinking on a daily basis, if you are less than obese go with weight in pounds divided by 16, so if you weigh 160 pounds drink ten cups of fluid a day, or if you weigh 134 lbs drink eight cups of fluid a day. You could try doing this for a week to see if it helps.

I find the diarrhea odd, given that taking iron often causes constipation.

Have you had a pulmonary function test? Is it possible you are simply suffocating due to shortness of breath, which in turn causes dizziness and fatigue? It is possible to have severe asthma without having wheezing or coughing, or anything you identify as an asthma attack, as scarring in your bronchial tubes just quietly builds up until they are not flexible at all and you are only able to get minimal air in.

Another question I'd like to ask is if your fatigue charts at all with the humidity or heat? Can you keep a diary to see if it fluctuates at all with either of these factors, or with rising humidity? That could give you additional clues as to what might be going on.
posted by Jane the Brown at 10:14 AM on August 15, 2017

runcibleshaw's description of celiac diagnosis aside, celiac disease is dramatically underdiagnosed in North America and it often takes years to get a diagnosis, which dramatically increases your odds of developing other autoimmune conditions. The serology test will likely not be positive unless you're eating significant amounts of gluten consistently for months before the test so do not attempt to limit gluten just to "see what happens" before you're tested.
posted by congen at 10:39 AM on August 15, 2017 [3 favorites]

Your doctor should not balk at testing for celiac. You have tons of symptoms that line up with it and the blood test part is simple. You must be eating gluten regularly in order to get accurate results. (Signed, lady who spent 9 years getting a diagnosis because doctors are more likely to brush off the health concerns of women)
posted by purple_bird at 1:13 PM on August 15, 2017

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