What else should I ask my doctor tomorrow morning?
October 12, 2013 10:46 PM   Subscribe

I'm anemic and have PCOS, and have been feeling increasingly crappy. I have been taking over the counter iron that includes zinc, vitamin c, and B vitamins (FabIron) for over a year; clearly, it is not enough. I have a doctor's appointment first thing tomorrow morning. What else should I ask my doctor, or ask her to do?

Blood tests from a year ago indicated that I was extremely anemic, but otherwise "fine": Vitamin D, thyroid, hormones all within the 'normal' range. I've been scanned and tested up the wazoo, so the anemia is genetic/heavy menstrual cycle. Hormones were tested once, at no particular time in my cycle, about a year ago; most recent general blood test was 6 months ago.

I don't see B12 on the test (which was a huge problem for my grandmother), and I haven't been tested for Celiac, so I was thinking about asking for that.

My iron levels in February were:
Iron: 11.2 (9.0-26.0) umol/L
Transferrin: 3.16 (2.10-3.80) g/L
Saturation: 14 (15-45) %
Ferritin: 9 (10-120) ug/L

I have almost all the anemic symptoms you can list, worsening over the last few months - heart palpitations, shortness of breath, difficulty swallowing, cold, fatigue... blah blah blah, and my PMS is getting worse (spotting, acne, yeast infections, extremely weepy - aside from the normal nausea and severe cramping). I can't be pregnant like this... I can't do ANYTHING like this. (FWIW, we are moving out of our moldy apt next weekend; I am seeing a therapist and she thinks my biggest problem is that I'm just too tired... too tired to go out and pick up hobbies, call my mom, make friends, etc. I agree.)

You are not MY doctor, but maybe you're a doctor or a more experienced Anemia/PCOS patient: If I need to be assertive and ask for things... what should I ask for?
posted by jrobin276 to Health & Fitness (16 answers total) 5 users marked this as a favorite
Best answer: Write down all your symptoms before you go, along with anything you've already tried and the effects. Bring a pen and write down everything the doctor says. Actually is it possible for you to bring someone with you who can act as an advocate for you?
posted by radioamy at 11:16 PM on October 12, 2013 [2 favorites]

I'm pretty much chronically anemic, like, I get rejected from donating blood because I test too anemic.

Ferrous Fumerate is the only form of Iron Supplement I absorb well. GNC makes a Women's Iron w/ Ferrous Fumerate that is AWESOME.

Supplements with Ferrous Sulfate do nothing for me.

Once you find an Iron supplement that "works" you don't want to over do it, yo. You can build up too much and that is harmful.
posted by jbenben at 11:22 PM on October 12, 2013 [2 favorites]

Best answer: Check your MeMail.
posted by M. at 11:28 PM on October 12, 2013

Best answer: I have PCOS and I've felt this way too, even without heavy periods and anemia. Check the Vitamin D again. Mine was super duper low.

Also, I had allergy tests and had a HIGH allergy to mold. On the lung volume/capacity test (I don't know exactly what it was called) I was scoring below 70%, which is worse that smokers she's seen, and that was after SIX puffs of albuterol for asthma. I have a long history of asthma, and the mold allergy was making it worse. Once she started me on allergy meds and got my lungs back to 90% function, I felt SO MUCH BETTER! Turns out that I simply wasn't getting enough oxygen/breathing well enough due to the allergies and asthma, which made me feel foggly and tired all the time. That, and the Vitamin D...

Bottom line...if you are in a moldy apartment that could be affecting your breathing or kicking up another allergic reaction that is overtaxing your system.
posted by MultiFaceted at 11:31 PM on October 12, 2013 [1 favorite]

I don't have PCOS, but I've been anemic before due to IBD, and here are the treatments I was given:

- IV iron infusions in the form of Venofer. No side effects and the bags smell like molasses! (not even a joke)

- Sub-cutaneous B12 shots

- Prescription strength (50,000 IU) Vitamin D pills

Now, I have no idea if these are appropriate for use with PCOS or in your case specifically, but they're strong and effective and "easy" (one shot or infusion instead of daily pills; rx strength Vitamin D is usually taken a few times per month, not daily) so I feel like they're worth at least asking about.

Finally, I wonder what your Vitamin D level is exactly. There's a lot of evidence lately that the lower end of the range of lab values we typically consider adequate is really not adequate at all.
posted by telegraph at 11:56 PM on October 12, 2013 [1 favorite]

Check your thyroid?

Also, you don't mention if you are actually taking medication for PCOS. Some people are helped by metformin. What kind of doctor is treating you? Many clients seem to want to see a gynecologist for PCOS, but I would recommend an endocrinologist.
posted by Violet Hour at 12:11 AM on October 13, 2013

Response by poster: I will definitely ask about mold allergy test.
Vitamin D was 87 nmol/L; and I get at least 1/2 hr sunlight a day walking to/from work - I'll ask about this again too.
Thyroid was normal.
I'm not taking anything for PCOS because my 'hormone levels are normal', or were the one time they were tested a year ago.
I will also ask her about different types of iron... it seems like there's a million, and it's confusing.
Thanks - keep suggestions coming!!
posted by jrobin276 at 12:22 AM on October 13, 2013

Hesitant to post because I'm not at all sure this is useful but in the tiny chance it is: I had a friend who was anemic, always exhausted and pale with very heavy periods, and she took every form of iron for years including liquid infusions to tackle her staggeringly low iron levels. Only a new gyn in town changed everything when she suggested an MRI. Lo and behold this friend had a bizarre iron-sucking tumor the size of a grapefruit in her uterus. Once removed her body returned to normal and changed her life forever. FWIW.
posted by AnOrigamiLife at 3:05 AM on October 13, 2013 [1 favorite]

I've also had an IV infusion of iron and it worked well for me. Apparently they're commonly prescribed here in Switzerland if people are feeling fatigued!
posted by daisyk at 3:38 AM on October 13, 2013

You say you weren't tested for B-12, so you might want to get tested. If you're still deficient in B-12 despite taking vitamins, ask your doctor about getting tested for pernicious anemia. Some people are just unable to absorb B-12 from food or supplements.

I have PCOS too, and although my hormone levels are okay, my ob/gyn wants me on the pill. Without the pill, I get very heavy periods and anemia.

Also this might sound random, but have you gone to your GP over the fatigue and the shortness of breath? That's pretty much how I feel when I get bronchitis, sometimes I don't even immediately recognize it as being sick, because I will just feel unbelievably exhausted.

When was your last sonogram? If you haven't had one in a while, maybe talk to your doctor about having one just to make sure you are cyst-free.

As for the PMS, you could talk to your doctor about an anti-depressant. I take one daily, but increase the dosage before my period. It's been incredibly helpful.

When is the last time you had your blood sugar checked? Since insulin resistance and diabetes can be a big problem with people with PCOS, and you say you're getting yeast infections, I would definitely get that checked out!
posted by inertia at 5:56 AM on October 13, 2013

IV iron here too. Get a referral to a hematologist, perhaps.
posted by judith at 6:31 AM on October 13, 2013

Depending on your age and desire for motherhood, how about a hysterectomy? One of the best days of my life was the day I quit fooling with my uterus!

I do HRT and while I'll always be anemic, I don't miss periods, cramps or mood swings.

Just a thought.
posted by Ruthless Bunny at 7:08 AM on October 13, 2013 [1 favorite]

A referral to a reproductive endocrinologist. Can't emphasize it enough. If you want to get pregnant in the future and you have PCOS, really, you need to go. Most primary docs/GYNs don't know a great deal about PCOS. You are better off with a specialist. There are different ways of testing it to give you information about what you might need for treatment and whether a medication like metformin would help you.

If you're not trying to get pregnant, have you considered/tried hormonal birth control? It takes all my symptoms of PCOS away completely.
posted by treehorn+bunny at 7:54 AM on October 13, 2013 [1 favorite]

Definitely get your B12 checked, and while you're at it you might as well get the antibody tests for Celiac disease, especially if that runs in your family. I was both B12 and vitamin D deficient but my iron levels were fine, and I was exhausted all the time. B12 shots and vitamin D supplements both helped significantly, but since I did both at the same time I can't really say if either was the major culprit. I do know that my grandmother had issues with pernicious anemia and she has had to have B12 shots regularly for many years.
posted by bedhead at 9:01 AM on October 13, 2013

Lots of fantastic advise above! Are you taking your iron supplements with juice? Vitamin C helps your body process and absorb the iron.
posted by annsunny at 11:05 AM on October 13, 2013

Write down all your symptoms before you go, along with anything you've already tried and the effects.

you might want to type up this list and actually give a copy to the doc while you go over it together. i did that with one doc and he really appreciated having a copy of it.
posted by wildflower at 8:27 PM on October 13, 2013

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