High blood iron, contradicting blood results. How do I advocate for myself at my next appointments?
August 29, 2012 1:17 PM   Subscribe

Went to the doctor for extreme fatigue, breathlessness, hair thinning, joint pain, and irritability. Blood results show high iron. How do I advocate for myself properly during my upcoming appointments?

Worsening fatigue (it’s difficult just to stand and talk at the same time or put on a small amount of make-up), new symptoms (bleeding gums, bruising more easily than usual, and pale green stool – things I know can be minor or unrelated), a recent few months of heavyish drinking, and lots of reading up on hemochromatosis had me a little freaked out for a couple of days. I’m calmer today based on the assumption that I must be mistaken and/or overreacting, and that any number of things could be happening. (My ferritin is low normal, CBC all normal, I have killer menorrhagia, my family history is full of various anemias, and I'm only 36, so I can't actually have hemochromatosis, yes? It's probably just another freakish anemia.)

I have a follow-up tomorrow. My doctor is an internist. Will I (should I) be moving on to a specialist? What can I expect next? What kind of tests can I expect to be run? Are there things she should absolutely be testing or telling me, that I should be concerned about if she doesn’t?

(Related: how do I find blood banks in San Diego County that accept donations from patients with high iron?)

posted by Eolienne to Health & Fitness (19 answers total) 3 users marked this as a favorite
Have you been eating a lot of tuna? Could it be mercury poisoning?
posted by zia at 1:24 PM on August 29, 2012

You can ask for a reference to a hemotologist (typically also an oncologist, so don't freak.)

I had terrible anemia and had to go for testing. They tested EVERYTHING, and at the end of it, I just have a hard time absorbing nutrients and iron from food. My doctor's advice, eat more steak.

Certainly discuss Thyroid, as that can cause hair loss, fatigue, etc. How high is High Iron? Off the charts, or slightly elevated?

Write down every question you have, ask if you should see a hemotologist. If you feel that it would be helpful, ask someone to go with you to transcribe your visit. My sister goes with both of my aging parents to their appointments. My Dad hears: "Don't worry, you're fine." My Mom hears: "He needs to make drastic changes to his diet". My sister transcribes: "Cut carbs down to no more than 40 per day."

I did lots and lots of blood tests. Also I had to collect my poop for analysis.

If you don't get a satisfactory diagnosis and course of treatment, press for one.
posted by Ruthless Bunny at 1:26 PM on August 29, 2012

Mercury toxicity definitely isn't a fit.

My TSH level is a thing of beauty by anyone's standards. Iron is 173. I estimate I lose 400-500 mL of blood per month.

I can't bring anybody this time, but transcribing should help, thank you.
posted by Eolienne at 1:38 PM on August 29, 2012

First thing's first...drastically reduce your iron intake, and cut out any multivitamins. Green stool could just be a biproduct of high iron levels. What you really need to worry about is your liver as a lot of iron will be stored there and could lead to cirrhosis if unchecked. (I'm pretty sure you know this already, having read up on hemochromatosis...but just wanted to throw that out there if not...hemochromatosis or not, prolonged high iron levels can cause a bit of damage).

Ruthless_Bunny's advice is pretty sound. Make sure you get extensive blood work...in today's healthcare industry you have to be your own advocate to make sure you get timely treatment. Ask plenty of questions, and ask for referrals to hematologists/oncologists if your insurance requires referrals...otherwise set up an appointment as soon as you can with a blood specialist.
posted by samsara at 2:01 PM on August 29, 2012

My brother had hemochromatosis, and it resolved very quickly with treatment. I'll get some pointers from him and drop you a MeMail.
posted by Sidhedevil at 2:03 PM on August 29, 2012

A friend of mine was just diagnosed with hemochromatosis and he's in his twenties, so unfortunately your age doesn't rule out the possibility that you have this. He had to stop drinking alcohol completely because it stresses the liver so I'm a little concerned that you mentioned several months of heavyish drinking recently. (And honestly, no matter what is ailing you, heavy drinking probably won't help with your extreme fatigue issue.)

In my experience, going into the appointment with a list of written questions is the best thing to do. Ask the questions one by one and take notes on the answers. It's really easy to get flustered in the appointment (the doctor is in a rush, you're not wearing any pants, etc etc) so it's nice to have your thoughts organized on paper in advance. Breathe deep, relax and good luck. We're all rooting for you.
posted by kate blank at 2:09 PM on August 29, 2012 [1 favorite]

I had cut back on the drinking when I started to feel so poorly, and quit entirely after seeing the iron results. It's good to have confirmation that I'm not being overly paranoid where my liver is concerned, and I'll be sure to bring it up during the appointment.
posted by Eolienne at 3:27 PM on August 29, 2012

A word of caution -- get a second opinion and another blood test SOMEWHERE else.

I too was diagnosed with an iron issue (in my case, a serious case of iron deficiency) and when I had the results brought to a specialist, she took one look at the lab it all came from, made a grumpy face, and told me I was the 20th patient from this particular area to have been told I had shittily low iron even though subsequent blood tests indicated I was doing just fine and that something else was actually the source of my problems.

Ruthless Bunny's advice is very sound.
posted by These Birds of a Feather at 7:36 PM on August 29, 2012

I was diagnosed with genetic hemochromatosis 7 years ago. It's being managed with regular (now infrequent) phlebotomies. I consult with a hematologist / oncologist to manage the condition. It's my ferritin levels that are monitored, not iron. When diagnosed, my ferritin was very high, while iron was high normal. I had an MRI of my liver, which checked out OK. With the phlebotomies my ferritin is back down to to low normal. It's all really quite manageable.

Interestingly, the Red Cross won't take blood from people with hemochromatosis: The American Red Cross, which controls about 45% of the nation's blood supply, does not currently accept donations from people with known hemochromatosis. Everyone agrees that the blood is safe and of high quality. There is no risk of passing on a genetic disease through blood transfusions. But the Red Cross has a long-standing policy that potential donors are not allowed to receive direct compensation for their donation (beyond the usual orange juice and cookie). Because people with hemochromatosis would otherwise have to pay for their therapeutic phlebotomies, they would in effect be getting something of value for being able to donate for free. Thus the Red Cross has ruled that such donations violate their policy.
posted by yqxnflld at 8:17 PM on August 29, 2012

If you are diagnosed with hemochromatosis, your doctor will probably know where you can go to have this done. Either a hospital or a blood bank (not for transfusion, but some/most blood banks will do therapeutic phlebotomies).
posted by radioamy at 9:16 PM on August 29, 2012

yqxnflld, that's actually reassuring, especially after seeing that my lab's normal iron range is lower than others'. It looks like my iron isn't very high at all.

For anybody still watching, does this change whether I should ask about a hemotologist?
posted by Eolienne at 9:59 PM on August 29, 2012

Hey there, I'm a carrier of the hemochromatosis gene. I know this because my mother was diagnosed with it a few years ago (what a relief! with regular phlemobotomies, so many painful symptoms have gone away!). Since it's recessive, I pretty much already knew I was a carrier, but I had the DNA marker test done just to be sure. It's easy and fast and can be done next time you get blood work. Might as well do it.

And while I think you should still get the DNA marker test, I will say that your low ferritin levels are a good sign. Like yqxnflid, my mother's ferritin levels were quite high when she was diagnosed, which her doctor said was indicative of hemochromatosis.

If it is homechromatosis, just know that's it's totally manageable, and catching it early is the best possible thing you can do.
posted by JuliaIglesias at 12:04 AM on August 30, 2012

I'm really unhappy with how the appointment went. How on earth do I find a doctor who is decent and who will also see me on short notice?
posted by Eolienne at 11:49 AM on August 30, 2012

Can you expand on why you were unhappy with how the appointment went? That might help people suggest useful ways for you to better advocate for yourself at future appointments, like you asked originally.

As for finding another doctor to see you, the easiest would be to try to get an appointment with another doctor at the same practice, or another clinic within the same medical group. That way the new doc will have quick access to the test results you already have. Otherwise you'll have to call other clinics until you can get an appointment somewhere, and then contact your old doctor's office to have the records faxed to the new place, and that can take days or longer depending on how busy their medical records people are. If you don't know where to start looking for a new clinic, try calling your insurance company for suggestions. That plan has the bonus of ensuring that you won't pick somebody who's out of network on your plan.
posted by vytae at 4:39 PM on August 30, 2012

Unhappy because while my symptoms are consistent with the higher iron levels that my labs showed, she is convinced I have fibromyalgia due to sleep loss. I'm not arguing sleep loss, but I don't have the muscle pain (which she kept ascribing to me despite me correcting her). My understanding is that pain is a pretty defining aspect of fibromyalgia. She has referred me to a palliative care doc.

She wants me in for follow-up in two months, when she expects my iron will have dropped to normal levels through abstaining from alcohol. (I have been a light drinker for several months after the previous heavier drinking.) This concerns me, because I've read that the only effective way to get rid of iron is phlebotomy or chelation. I'd really rather not be miserable another 2 months or more.

She is also convinced I should be seen by a psychiatrist to be put on medication for emotional symptoms I don't have.

To sum up, she's adding symptoms I don't have, and I don't feel confident in her diagnosis. I don't appreciate being shoved toward psych meds when I'm doing remarkably well on that front.

I don't know whether to wait the 2 months out and hope I feel better, or be more proactive with finding a new internist now. I don't know whether to go to the palliative care doc or not.
posted by Eolienne at 5:17 PM on August 30, 2012

I should add, she did run liver and autoimmune labs, which came back normal.
posted by Eolienne at 5:22 PM on August 30, 2012

Sorry, adding again that I hesitate to ask for a hematologist, because this isn't looking like any kind of anemia or true hemochromatosis. I think the most likely cause of the increased iron is the higher alcohol intake several months ago.
posted by Eolienne at 5:25 PM on August 30, 2012

If your liver labs were normal, I don't think your liver is in any imminent danger. It sounds like you do agree with her conclusion regarding the iron stuff (that it was caused by the excessive alcohol), so why not try her plan for correcting it? If you cut out the alcohol for a few months and that doesn't fix the problem, that would be the time to go looking for other causes/solutions and maybe ask about seeing a hematologist.

Part of the beauty of her referring you to a psychiatrist is that your doctor's not trying to put you on psych meds, she's sending you to a specialist who would be much better at determining whether you might or might not be helped by psych meds. You can visit with the psychiatrist and still refuse to accept any new prescriptions from him/her, but maybe it would help to keep an open mind to whatever that expert thinks. Obviously we on the internet don't know you beyond what you've written here, so please don't take this as an accusation--I'm just trying to guess where your doctor might be coming from. I can imagine she might be thinking that if you've been drinking enough to cause illness (even though it was a few months ago), it would be worth talking to someone who can help you figure out how to avoid that in the future. Or someone who can say, "Hey, Eolienne has some strong coping skills and social outlets that don't involve alcohol, and she seems in control of her drinking, so I think she's all set without any additional help on that front." It makes sense to take an honest look at that aspect of your life, with the help of a professional, given that it has caused some problems.

I don't really have much to say about the palliative care recommendation in your specific case. They're really good at symptom management, and may be able to recommend things to help with your fatigue and joint pain. A lot of people link chronic fatigue syndrome and fibromyalgia, so that might be part of where your doctor got the idea, between the tiredness and the pain (even though it's in your joints).

Whatever you decide to do with all these referrals, it sounds like you might still want to find a new internist. Your current doctor could be way off the mark or spot on, but she's not doing a good job of addressing your questions and making you feel heard. A lot of doctors are bad at this, especially when they're not really sure what's causing your symptoms, because they get frustrated. If you can find somebody who works with you to develop the plan, who addresses your concerns thoughtfully without resorting to "because I'm the expert and I say so," you'll have found one of the good ones.
posted by vytae at 7:19 PM on August 30, 2012

HA! Funny you mention your doctor ascribing imaginary emotional symptoms to you; my mother's doctor did that too. She insisted my mother was depressed. My mother knows from depression and, aside from being upset about her symptoms, was otherwise happy and stable. She promptly switched doctors. And her new doctor took one look at her labs and tested for hemochromatosis.

So it's probably not hemochromatosis. Great! But your doctor is not listening to you and you're having painful symptoms. It takes long enough to get appointments as it is. Get on finding another internist now.
posted by JuliaIglesias at 11:50 PM on August 31, 2012

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