Just began treatment and have questions

Allergies, blood and immune system
1

Hi again!  I have posted before, but have since seen a hematologist here in the States and have more questions!

I've just been diagnosed with (Possibly} Hemochromatosis.  I have a complicated medical history so my Hematologist is beginning treatment while waiting for the pathology report from a liver Biopsy done 5-6 years ago along with blood tests over the years. 

I have Crohns Disease, "Mild, Chronic, Non-Specific Liver Disease", GERD, Fibromyalgia, Hypothyroidism, mild Arthritis along with a few other things!  You can see why the doctor is taking into account all sorts of other things?

My labs have shown elevated Liver Enzymes on and off for many years... they thought t was probably due to the Crohns Disease... but now?

Anyway,  My primary care doc. tested me for Iron levels after I continued to complain about an increase of Fatigue far beyond my normal levels with what I've become accustomed to with Fibromyalgia.

In April 2015 he found my Iron in the 300's and ordered the genetic testing.  It came back  as "Compound Heterozygous for the C282Y and H63D Mutation".  He wasn't worried too much as the Iron could be elevated due to inflammation form my other heath problems.  Then last month he did my usual labs and the Iron was over 700. 

He sent me to a Hematologist.  She is now waiting for the old labs and pathology report.  Meanwhile she has begun treatments of weekly phlebotomy on Tuesday's and I'll see her in mid January. 

My symptoms have been:

Increased fatigue... I mean dog tired, don't want to or can NOT move no matter how many things I want to do... So tired I can't think straight! 

Joint pain, that I thought was Fibromyalgia... It happens if I'm still for a while during the day, but is worst at night.  I wake up with extreme pain in my knees, elbows, and sometimes hips...  My hands ache....  But the pain in my large joints is horrendous when it occurs and that is almost every night.  The pain is so bad that I can NOT move that joint until I massage it and or wait for it to ease up and get it moving. 

I just feel "off", more so than what I've become used to with all my other heath problems.  I've felt something was "wrong" or "off"  for the last year.  But, couldn't figure out what it was. 

I will have my 3rd treatment this afternoon.  I don't expect to feel better immediately....  I'd like to know what others experience as to how you feel after the treatment... I am SO tired.  But it's different than the fatigue I'm used to.  It's more of a weakness... but it does stop me from doing anything that day and most if not all the next day. 

As far as food... I hear conflicting information.  From cut down on anything with high iron, to do that and drink tea and coffee to inhibit iron absorption... to the opinion that it doesn't really matter that much as to what you eat... I'm so confused! 

I'd appreciate any help and advice you can offer me. 

Lisa

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it can be confusing to start with - once you get your phlebotomies under control and stop food/beverages that make your iron go up and get diet managed, it may be that you can get things under control.  coffee/tea with meals helps - meat meals boost iron and so does Vitamin C supplementation. yes phlebotomies make you weird tired - more like weak and wired. wishing you luck in getting it under control, with effort it is possible

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Thanks for the reply. 

I think the worst thing right now for me is the fatigue.  I've have Fibromyalgia for 18 years and have learned to deal with a control it witrh rest. On eof the main symptoms of it is "Fatigue".  Now, adding yet another diagnosis with "Fatigue" as a symptom is a double wammy. 

I usually do a decent job of stay ing upbeat and not complain too much.  I've found lately I'm complinging and resting a LOT more than ever. 

I'm not depressed about it, I want to do so so much and it is very irritatimg that I can't do all I'd like to.  We have had 2 granddaughters born over the last 2 months and I have tons of projects in line for them and one 7 year old grandson.  It seems that the projects are sitting there staring at me!  *G*  You know what I mean?  Oh, well.  I gert to them, hopefully well before the 3 of them graduate from high school! 

I'm looking at it as positive as I can.  With others with experince I think it will go better.

THANKS AGAIN!  Lisa

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Lisa, I know exactly what you mean about not getting to do projects.  I could not believe how tired I have been since the birth of my son 40 years ago - still trying to get his baby photos and others ever since into an album!!!!!

Now I realise that they filled me with iron supplements as they did with every pregnant woman.  Then at age 38, I had to have an hysterectomy and that was the beginning of the end.  Despite classic symptoms I was left undiagnosed for 9 years until one of my hips broke up from osteo necrosis - iron so thick in my blood it was blocking the fine capilliaries that fed the bone, so it died.  For most of the 9 years I was staggering and slurring from fatigue and body pain.

But I still kept working, even though I would wake up feeling like I had been hit by a truck and crying because I could not even cope with choosing clothes to wear.  I loved my job and did not want to give it up, besides it got to the point when I was the only one bringing in income.

Then my husband 'saved' me by getting Hodgkin's Lymphoma, and I had to give up work to look after him.  I was never able to go back to work, because even though I was by then diagnosed, and 'de-ironed', the damage had been done and I have never stopped being fatigued and total body pain.

I have since had a number of health issues (2 hips replaced as well) including heart problems, but my very good haemotologist keeps telling me that since I am de-ironed that I should not have any more problems.  Ha!!

While he is a very good haemo, he is not a haemochromatologist (he is actually a very good oncologist and treated my husband) so really does not know a lot about haemochromatologist.

I have met a few researchers of haemochromatosis through my volunteer work with an haemochromatosis association, but they specialise in only one aspect of haemochromatosis, e.g. liver, joints.

I talk to medical students and I hope to encourage one or two to make it a specialisation.

Anyway, Lisa, you have finally got started.  Venesections will not stop the joint pain, the damage has already been done.  Hopefully it halts it from getting worse.  Start saving for hip replacements.  Get xrays to see what damage has already been done - the earlier you get on the surgery list the better.

It is not recommended by the haemochromatosis medical fraternity to stop eating foods that contain iron, besides every food does.  Although I would advise you not eat liver, and clams (which seems to have such a high level that I think it is a typo), and also not red meat every day.  Spinach ok, it is a fallacy that it is high in iron.  A definite no no, are foods that are supplemented with iron, like some bread and cereal.

Please get hold of a copy of The Hemochromatosis Cookbook by Cheryl Garrison (The Iron Disorders Institute) from the library for starters.  Not necessarily for the recipes but for all the information in it about food and its relationship to haemochromatosis.

Tea, coffee, milk with meals are supposed to help reduce the uptake of iron in the food, also calcium products, e.g. yoghurt, cheese (eat as a dessert).  Avoid vit c and high vit c fruit juices with meals, they promote the uptake of iron.  However, it is important we do consume anti-oxidants, e.g. vit A, C & E, so take vit C last thing at night when there is no food in stomach still be processed.  Iron is absorbed mostly in the duodenal area.

I have discovered that I feel like a truck has hit me when I consume starches, i.e. potatoes, breads, pasta, rice, and sugar foods.  Then I came across some research that said we do not digest these foods very well, which confirms what was happening to me.  So I am very strict about eating these (which makes it difficult at times - but paleo recipes cover that problem, except I eat dairy), except when I have to be polite and eat some home baked goodie, or dinner that someone else has cooked!!!

You will be surprised about the marvellous things that can be done with cauliflower that can be a potato substitute.  Was not my favourite vege, but now I have a new respect for it.

A small glass of red wine with dinner is medicinal for me - it is another food that is supposed to help reduce the uptake of iron.

But if you have a liver problem, it is best to avoid alcohol for a while, till that is sorted.

Once you are deironed, my optimal level is 34, keep having those maintenance venesections.  Mine are still every 3 months.  With compound heterozygous, yours might work out to be a bit further apart.

BTW, while I am compound C282Y, and my husband is compound H63D, our son, of course, is compound heterozygous C282Y/H63D.  So I am forever searching research for answers.

So keep asking those questions.  But most importantly, join your country's hemochromatosis association and support them.  They are working for you.

 

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Thanks for the input!  I had my 3rd treatment yesterday afternoon.   I'm drinking lots of tea and some coffee... and milk is usually in my diet as well.  I had to stay a bit longer after the draw/treatment yesterday.  I'm trying to eat as much as I can and hydrate also.  Still had to stay an extra 30 minutes afterwards to recpver from lightheadedness.  I'll make another discussion to see what I can learn for others about stopping this from happening again.  Lisa