Very High Ferritin (Iron) Level over a Decade after Kidney Transplant

Posted by emo @emo, 6 days ago

Does anyone have experience with kidney transplant and an extremely high ferritin level?

My mom had a living donor transplant in 2010 and over the last year, her ferritin level has skyrocketed mysteriously. It’s 542 and the reference level at the lab is 252.2 at the highest. All other labs are normal or to be expected, including liver enzymes. Kidney function is normal.

Frustratingly, she just saw her nephrologist and he has no clue why this might be and referred her to her PCP. Unfortunately, we do not have a positive relationship with her PCP and don’t believe it would be helpful to see him. The reason we don’t feel it would be helpful is because he seems on auto-pilot and doesn’t really think out of the box and sometimes gives recommendations that don’t even make sense. He’s the PCP for both of my parents who have very complex cases, and he just doesn’t seem equipped or motivated. If we saw him, most likely he would order more labs and refer her to a hematologist, as a similar issue arose with my dad and that was the result, which ended up being the complete wrong thing to do. It turned out the PCP could and should have been able to treat him, and the delay resulted in increased severity of my father’s condition.

We are caregivers for my father who had a severe stroke, so we’re not really in a position to go see the PCP only to be bumped to another specialist, and we like
to get to the root cause and hopefully get reassurance quicker. I intend to try to transfer her care elsewhere or even see if I can just schedule with a hematologist if the office doesn’t require a referral, but that may prove difficult.

While we figure out what to do, does anyone have experience with this? If so, what did you and your care team do?

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Has your mom been tested for hemachromatosis?

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@siosal

Has your mom been tested for hemachromatosis?

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Ohmygosh, thank you! I have literally never heard of that condition or seen that word before. She has not been tested for that. I will ask about it…once I figure out an internist or hematologist she can see…

She does fit some of the profile, or at least I read that it’s not uncommon for symptoms to manifest in women after age 60, so maybe? Everyone was so focused on her being post-transplant.

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I am going on 19 years post pancreas transplant (long time ago!). Early on I was referred to a hematologist (don’t remember why). When I met him he declared “we need to take a trip to the blood factory”! By that he meant a bone marrow biopsy. I got that done and the good doctor figured out what the problem was and a beneficial treatment. I’m telling this because a hematologist might be the best provider to figure out this high ferritin level and what to do about it.
Secondly it is important to have a good working relationship with your primary care provider (PCP). I’m sorry you had a bad experience with your father’s care. Could you ask the transplant provider &/or the nephrologist for referrals to a new PCP and a hematologist? It is important to get the primary and specialists you need collaborating and on the same team.

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@cehunt57

I am going on 19 years post pancreas transplant (long time ago!). Early on I was referred to a hematologist (don’t remember why). When I met him he declared “we need to take a trip to the blood factory”! By that he meant a bone marrow biopsy. I got that done and the good doctor figured out what the problem was and a beneficial treatment. I’m telling this because a hematologist might be the best provider to figure out this high ferritin level and what to do about it.
Secondly it is important to have a good working relationship with your primary care provider (PCP). I’m sorry you had a bad experience with your father’s care. Could you ask the transplant provider &/or the nephrologist for referrals to a new PCP and a hematologist? It is important to get the primary and specialists you need collaborating and on the same team.

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Thanks for sharing, and cheers to your continued recovery and good health!

I 100% agree about having a strong and collaborative relationship with a PCP and between the PCP and specialists. Honestly, I had just let my parents manage their care, and their PCP was fine until my dad suddenly got very ill. We haven’t been able to get over the way his doctor managed it and how dismissed we felt when we asked for help. Shortly after, my dad had a severe stroke.

That was about two years ago, so my mom and I have been trying to keep our head’s above water, only managing what’s immediately in front of us, so finding a new PCP didn’t get prioritized.

And so now here we are… I love my PCP and she’s very comfortable with “conplex” cases, which is what we need. I see her tomorrow and am going to see about establishing my parents with her and if not ask her if she has any recommendations. I’m hoping she can see my mom sooner, or at least within the similar wait time we’d have for her current PCP.

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@emo

Ohmygosh, thank you! I have literally never heard of that condition or seen that word before. She has not been tested for that. I will ask about it…once I figure out an internist or hematologist she can see…

She does fit some of the profile, or at least I read that it’s not uncommon for symptoms to manifest in women after age 60, so maybe? Everyone was so focused on her being post-transplant.

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It affects men earlier and women after menopause
Just ask pcp for lab tests

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This is a long short but has she had her inflammatory markers tested? In 2019 my ferritin level was 1153.6 plus being anemic. So off to the hematologist I went. Bone marrow biopsy showed nothing of interest. First hematologist was stumped, second hematologist said I have "a problem in my blood, not with my blood". She diagnosed idiopathic anemia. Third hematologist seriously considered MGUS, forth hematologist who treats MGUS explained why it wasn't MGUS.
My Ferritin was 205 in December of last year. Still on the journey. My lab considers 9-150 normal.

In 2019 I was diagnosed with PMR (polymyalgia rheumatica) and it comes with a bouquet of related symptoms and problems. My blood work is all over the map. I have not resolved the Ferritin issue since I am focusing on several other symptoms, but it is still on my radar.

I wish your mom a successful journey while looking for her cause and treatment. I suspect you are a comfort to her. Often all I want is someone walking beside me. I have learned that solutions are not always common.

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Thank you for sharing that and for your kind words. It’s somewhat reassuring that in your case it may be linked to the inflammation from PMR and not some other insidious thing…. Although PMR is its own insidious beast. I am wishing you fortitude overcoming PMR.

I can relate to realizing the solutions aren’t always common… I have intertwined chronic pain conditions as well.

I don’t think her inflammatory markers were checked since this has come up twice with appointments with different nephrologists. The first one didn’t even mention it, and she directly asked the other about it because the level went up even more and he doesn’t know why it would be (basically he doesn’t think it’s related to the kidney function, and I guess that’s as far as he can go).

My family is all too familiar with PMR (ugh) because my dad has it. She doesn’t have symptoms of PMR or another inflammatory condition, though pain in her hands has gotten worse, presumably from OA. But it still seems it might be a good idea to ask about it.

My sort-of plan at the moment is to try to get an appointment with a primary that’s hopefully within a few months and not a year and call or message ahead to ask if the provider is willing to order labs before the appointment since they should be able to see the nephrologist’s note.

I shall try to report back with what I find.

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@emo

Thank you for sharing that and for your kind words. It’s somewhat reassuring that in your case it may be linked to the inflammation from PMR and not some other insidious thing…. Although PMR is its own insidious beast. I am wishing you fortitude overcoming PMR.

I can relate to realizing the solutions aren’t always common… I have intertwined chronic pain conditions as well.

I don’t think her inflammatory markers were checked since this has come up twice with appointments with different nephrologists. The first one didn’t even mention it, and she directly asked the other about it because the level went up even more and he doesn’t know why it would be (basically he doesn’t think it’s related to the kidney function, and I guess that’s as far as he can go).

My family is all too familiar with PMR (ugh) because my dad has it. She doesn’t have symptoms of PMR or another inflammatory condition, though pain in her hands has gotten worse, presumably from OA. But it still seems it might be a good idea to ask about it.

My sort-of plan at the moment is to try to get an appointment with a primary that’s hopefully within a few months and not a year and call or message ahead to ask if the provider is willing to order labs before the appointment since they should be able to see the nephrologist’s note.

I shall try to report back with what I find.

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I suspect you are correct about the nephrologist not being concerned. I have found that if it is not in a doctor's wheelhouse they simply do not care and are of no real help. Very frustrating because the PCP no longer diagnosis, they simply run a few tests then send you to a specialist they believe you should be seeing. Sometimes I think it is more like an amusement park than the real amusement park. If it was a Sit-Com on TV I know I would be laughing.

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@jabrown0407

I suspect you are correct about the nephrologist not being concerned. I have found that if it is not in a doctor's wheelhouse they simply do not care and are of no real help. Very frustrating because the PCP no longer diagnosis, they simply run a few tests then send you to a specialist they believe you should be seeing. Sometimes I think it is more like an amusement park than the real amusement park. If it was a Sit-Com on TV I know I would be laughing.

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I know…the whole bouncing from one specialist to another frustrates me. I think part of it is not wanting to “step on people’s toes”? Or maybe because if they don’t make boundaries, their workload can snowball. And I do understand…but they also need to understand that it typically takes 3 months to get a PCP appointment.

My mom said the nephrologist said to talk to the PCP to order labs, which suggests to me that the nephrologist knows or suspects which labs to order.

And you’re totally right that in most cases the PCP orders labs and then bumps you off to another specialist!

Thanks for commiserating lol.

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