Possible Ferroportin disease?

Thank you Sheryl. I've seen some posts on this group, by a couple of individuals who have Ferroportin disease which is why I decided to post here. I'm new to this forum and wasn't sure it was appropriate to message someone directly, especially as a newbie. I also thought it might be useful to post my information publicly, in case there are others in a similar situation who could benefit from seeing my numbers and timeline.I may just send a quick message to the person you are referencing, to make sure she sees this. Thank you. 

There's my brainfog happening again. I forgot to mention that I'm male, and yes that's in question with just my name. I have yet to find out if there is a genetic test available in Canada. At this point, I'm more concerned about starting treatment. If they can diagnose it, even without a DNA test, and get started doing something about it, that would be a great relief. At this point, I don't even know if this is what I have. It's not getting better, whatever it is, and it's crippling. Thanks Selina.

If nothing else, you can donate blood every 3 months?  As long as you are not on medications which they don't like.  Just don't mention HH or ferroportin, or high ferritin.

 

I was advised against doing that while being investigated for cancer. It may come to that if it takes a long time to get diagnosed. I believe that in Canada, the Red Cross accepts blood donations from people with hemochromatosis, as long as they meet all of the other criteria for blood donation. I should probably apply to be a donor now anyway, as I think the process takes some time. Thanks!

Yes genetic testing is available in Canada. I am from Mb and was diagnosed a year ago. Because both my ferritin ( 1100) and transferrin saturation (70) were high the doctor automatically ordered a genetic test. It takes 2 months to get the results and protocol ( Ma nitoba) does not allow docs to prescribe phlebotomy until the genetic test results confirm. Canadian Blood services ( no longer Red Cross) will take blood from people with hemo ( but you have no diagnosis) as long as all other criteria are met. You can book an immediate appointment on line, there is no wait time, but again as your doc points out your test results do not indicate hemochromatosis...so I guess its up to you to donate or not....

Canadian doc from London On Dr Paul Adams is recognized expert on Hemochromatosis......and has an excellent 7 part podcast.....but dealing with hemo and iron overload ...not ferroportin so not so beneficial to you.

Hi Marie,

Hi Marie. Thank you very much for your reply. I'm sure I will have many questions, especially if I am eventually diagnosed with this. At this point, my doctor wants to confirm that my ferritin levels are still high before referring me to a specialist, which I suppose is prudent. I have an appointment in a couple of weeks, at which point he will either refer me to someone who is more familiar with hemochromatosis (and hopefully Ferroportin disease), or I am guessing if my ferritin has gone down signficantly, watchful waiting.

In the meantime, since the fall, I've changed my diet as if I am assuming I have already been diagnosed, knowing it can't hurt, and could help somewhat. I was never a heavy drinker, but I ceased all alcohol consumption last September, as well as cutting out most heme iron from my diet. I've never eaten iron-fortified breakfast cereal, nor have I ever used vitamin supplements. I've started drinking black tea with meals, which isn't unpleasant.

It's frustrating not feeling well and having to wait, but 2 weeks ago I thought there was a good chance I might have lymphoma, and in the autumn the fear was mesothelioma, so this would be a welcome diagnosis compared to those things.

My consultation to see what happens next is March 6th, so I might have some news then.

Thank you very much for your reply!

Chris

Hi Chris

The jury is out whether it makes any difference excluding iron from your diet.  I have been told by some consultants that is makes no difference trying to inhibit the amount of iron you consume and others have told me to eat less red meat and give up alcohol.  I have tried giving up red meat and limiting all types of food due to the iron content, gave up alcohol, drinking black tea and eating full fat greek yoghurt (as calcium is supposed to inhibit iron absorption).  In my case it made no difference, but that doesn't mean it won't help in your situation.  Trying to limit iron consumption is good practice.

I agree with you that having a diagnosis of Ferroportin Disease is favourable than lymphoma or mesothelioma.

Good luck on March 6th.

Best wishes

Marie

Except for foods fortified with iron, it may not be a good idea to try to reduce your iron intake by diet.  It could lead to low Hb which will make having venesections a problem, as per Marie's first post regarding leading to anaemia.

Is your serum iron high?  That indicates your iron uptake.  I am C282Y/C282Y and have been in maintenance for many years but I still get high serum iron, and have high TS%, but am able to keep my ferritin down very low with venesections. My Hb is always high.  Even with these HFE genes, it is not recommended to eliminate iron foods from our diet, although I do drink tea or coffee with meals, and calcium in some form as well.  But I still have red meat now and then and mix it up with other animal meats, lots of greens and cauliflower, as I avoid potatoes and other starches, and sugars.  I do have a small red wine with dinner for its iron reducing uptake polyphenols. 

This is because we are prone to not digest these very well, leading to fatty liver and fat around the waist.

As Marie says, ferroportin is different to HFE disorders, so you will have to look at it differently.  There is a lady from Canada with the same problem so she may be able to help with the Canadian part.  I believe her rheumatologist takes her more seriously and does her venesections.

 

Hi Marie,

I have been watching the source of my iron intake, more for the sake of my diet than anything. I am making sure I eat a good mix of vegetables, and I still eat chicken and fish, but have reduced the amount of red meat I eat. I'll still have it if I'm at a friend's for dinner, and that's what's on the menu, but I've stopped cooking red meat at home, for now. I used to eat a lot of red meat, 4 or 5 servings a week, and now I'm probably down to two servings a month. I eat lots of nuts (home roasted, unsalted almonds and cashews mostly--I have always done so), and have been trying to eat more legumes, and lentils.

I find my taste has changed and I no longer enjoy eating acidic fruit. I normally love all kinds of oranges, strawberries, blueberries and apples, but since I became ill, I find myself eating them grudgingly, if at all.  Bananas are still fine though, as are melons. I don't drink fruit juice. Also, tomatoes used to be one of my favourite vegetables (I know some people call them fruit), but I find myself not enjoying them these days, unless they're stewed and in something like a pasta sauce or a cooked dish.

Because my sense of whether or not I'm hungry or full seems to have disappeared, I found that I had put on at least 15lbs from my normal weight before Christmas. It's easier to snack when you can't tell if you're full, and you're mostly sedentary! I got a light scolding from the nurse, when I saw the doctor in December, about my weight and blood pressure.So I have also stopped eating potato chips and french fries, and cut down on delicious pastries and cookies. For now.  And I've lost those 15 lbs.

I'm not a big fan of yogurt, but I enjoy drinking full fat milk, and will keep that in mind.

Thanks, Marie!

Chris

 

Hi Sheryl,

Neither of my doctors are terribly open about sharing CT reports or blood tests. I'm usually concerned about asking all the questions I have and end up forgetting to ask for copies of reports to take home. I have a copy of one blood test, from June of last year. My Hb on it was 145g/L with normal range being given as 135 to 175. This was the first test I had showing ferritin levels (1048 ug/L with normal listed as 22-275). I don't believe serum iron was taken on that test (unless it's an abbreviation I don't understand), as iron wasn't yet on the radar. I didn't have transferrin saturation tested until October (35% from what I was told), and I don't have a copy of that test. Yet.

I am going to see if I can book an appointment next week with my family doctor (GP), and will ask him to see if I can either get online access to my files, or if not, if I can at least get printouts of all tests to date. I'm hoping to also get a sneak peek at my latest ferritin test, which is probably completed by now.

My first CT scan, in October, also indicated mild steatosis, which was another reason I figured it best to cut out alcohol. I have found potato chips the hardest thing to remove from my menu, but I'm sure I am better off without them. French fries too. I've never been much of a bread eater, but I do enjoy brown rice and whole wheat pasta. I do love sugary pastries as well, but alas, I have severely cut back on them for now. I may need to consider that reduction permanent, and also consider reducing or cutting out pasta (fortified with iron), as well.

I really appreciate everyone's insights.

Thank you Sheryl!

Chris

 

Serum Iron is also included in a Full Blood Count, or FBE.  Generally drs requested that blood test as a matter of course.  Maybe it is marked as fe.

I have become more assertive with age and experience I guess.  I ask for a printout of all tests while at drs surgery, plus with CT scans etc, I discovered I only had to ask the x-ray receptionists for a copy of the x-rays, scans, dvds plus a report to get one.  We have to tell our drs that we are not stupid nor irresponsible with test results.  It is your body/health and you need to know and understand what is happening and not kept in the dark.

I don't have online access like some in the UK can have and I should ask about it myself.  No-one has ever mentioned that it is a possibility.

Good on you for eliminating chips, pastries, etc.  While I rarely had crisps, I went cold turkey on french fries.  Why is it that every dish is served with french fries?  Where I have the opportunity I say, hold the chips, and they usually give me more salad, otherwise I leave them on the plate.

I missed the sensuous feel of pasta, and eventually found a substitute.  It is a product sold by Slendier and made with Konjac Root.  No carbs, gluten free, and a good source of fibre.  They also make 'rice', noodles, spaghetti, fettuccini.  There used to be vermicelli too.  A little goes a long way, so don't eat a large serving, have mostly the sauce with a half packet of pasta (they are small and they are not an economical food like real pasta is).  Don't be put off by the smell, it goes once rinsed.  To serve it is rinsed in water, heat up some more water in m/wave for 3 minutes, and put pasta in the hot water for one minute.  A lot like rice noodles.  I generally make up a whole packet, and mix some in with vegetables/ even a salad each night, or with curry, or with a pasta sauce.  Keep any Konjac pasta left over in the water that you heated up in the fridge.  Drain to serve.  You might find it in Canada too.

I can avoid sugary foods when I don't buy them, but now and then someone might offer me a homebaked goodie and I can't be rude, can I?  Plus we are going to France again this year - oh, their partissieries!  Well, we do a lot of walking there.

Keep letting us know how you go.

 

Hi Sheryl,

I'll keep my eyes out here for that Slendier pasta you mentioned. Brands are largely different over here, I think, but there is probably a similar product here. There is mandatory "Nutrition Facts" labelling here so it's easy to check to see whether something has added iron in it or not, and with the "gluten free" movement, there are plenty of non-wheat pastas available in chain grocery stores. I have easy access to Korean, Vietnamese and Chinese grocers who have great noodle options (again, I just need to check for iron content).

One thing I'm still puzzling a bit about is my skin pigmentation. It's not necessarily an obvious thing to anyone casually looking at me, and I've had to point it out to both doctors I've seen. I look like an average white guy who's had a bit of sun. It's less apparent under office fluorescent light, but still noticeable, at least to me. My family background is about equal parts Scottish, Irish, English and Scandinavian. I'm normally about the colour of boiled codfish in mid-winter, and I spent literally no time outside in the sun last summer. So it's been 18 months since I have sat outside in sunshine, and yet, I have what for me is a glowing tan. Both of my doctors have looked at it and haven't been able to offer any comment. One didn't seem to think it was there, until he saw the insides of my arms (same colour as the outsides), and a lack of a tanline at my neck. Is this something that could be a characteristic of any other types of illness, or is it fairly specific to the hemochromatosis family? I have done a lot of internetting looking for other conditions that have this as a symptom, and haven't found much. Is this something that others here have had, and with anyone has it been something that was used to help in their diagnosis? It's not the same colour as jaundice, which in photos I've seen looks more yellowish. Also my eyes are not pigmented.

Any input on this would be welcome.

Thanks Sheryl, and everyone. 

Chris

 

Hi Marie,

My hubby is having a lot of symptoms that point to ferroportin. His ferritin is 632, but his serum transferrin is 2.68, iron 18.9 tibc is 60.6 so his transferrin sat index is 31.2% so isn't hemo.

Would any of these results look like ferroportin to you? I would be really grateful for any help. We're in the U.K. and hubby has been having symptoms since Jul 2017 and still no diagnosis. They're refusing the gene test him too. Hope you can help ????

I am sure you would have noticed if anyone else in your extended family has a similar coloured skin.  My dr long ago ignored my beautiful 'tan' because I live in the tropics but I used to get comments about my beautiful tan even though I had stopped hanging out in the sun after childhood.  I have the blue eyes and blond hair of my Scandinavian great grandmother.

A long shot is that most Irish came from Iberia (Spain and Portugal) with their darker skin and hair.  A throw back, unless this is a new phenomena for you.  A university student approached me while I was talking to medical students about HH, with darker than fair skin - he was Spanish and had HH, his arms were a liverish colour.

Whenever I see photos of HH bronzing, it is a metallic bronze colour.  Quite confusing.  My colour was very strong (but not metallic) around my neck and chest which when I turned sideways and looked in the mirror, I could see blackness in my skin.  The back of my neck itched like crazy and produced rust coloured sweat which is a sure sign.

i remember when I was a child, meeting an unknown teenage male distant relative who had rust coloured sweat coming from his armpits on to his white shirt.  Poor chap.  Of course, drs did not know anything about HH back then, even though it was actually known about and named in the 1920's, or was it earlier?  Can't remember.  Actually, on second thoughts, it was back in the late 1800s.

I had to go back to look at your symptoms.  And they made me think of what has recently been discovered in my lung.  A 'ground glass tumour".  They are transparent and amazing that the radiologist saw it.  It turned out that it had been there 3 years ago but smaller and never reported on by other radiologists.  I was asked if I had ever smoked - not ever, but a lot of passive smoking, or come into contact with asbestos - yes, I used to help my dad cut up fibro sheeting for walls of our house at the time.  I have found it hard to find out anything substantial about ground glass tumours.  I am currently waiting on the Respiratory Department to call me regarding and appointment.  Just what I need - more invasions on myself.

I have had 3 cancers, all dealt with surgical removal but years of post monitoring.  Apart from constant MRIs, I also have a yearly CT full body scan.  So I am lucky that this has been found 'early'.

However, I don't think it has anything to do with your high ferritin levels.  It has been found that cancer thrives on iron.  Just perhaps something you can have it checked out to relieve some symptoms, i.e. cough, fatigue, night sweats.  Another CT scan for yourself with a different radiologist could pick it up.  Perhaps your dr could put "ground glass tumours?" on the request so they look harder.

Funnily enough, I have been having those three symptoms for years, and the sweating has ramped up - always put down to HH.  Too easy to do so, so we keep suffering with no relief.

Lymph glands in the abdomen can become very tender (I find I can't lean against the table while using the computer without pain).  They became extremely painful when I started eating raw vegetable salads which I obviously could not digest properly going by my swollen stomach.  I tried putting my salad veggies in the microwave for 30 or more seconds.  Simple lettuce and tomatoes are ok for me.  That is when I learnt about these swollen painful lymph glands in the abdomen.

Perhaps just having a high ferritin can produce skin discolour even if you don't have classic HH.

If cancer has been ruled out, go back to the blood donation plan.