Re: Haemochromatosis - anyone got any experience of this?

[Guest guest]

Hi :

Sometimes ferritin is high because there is inflammation in the body

somewhere....and you did mention that you had been ill. I asked if high iron

ran in your family specifically......for this Hemo reason. It may be a good idea

to get your saturation test done just for your own knowledge. But, usually at

your age, you would know if you had Hemo. For one thing, if you ever had a blood

test and it showed Hemo, it would be written across the top of your medical file

in bright red letters. This is not something anyone would want to miss. Mostly

it effects men, but a small percentage of women are effected too. Have any other

blood tests been questioned for high iron before this one or has it never been

questioned one way or the other?

http://labtestsonline.org/understanding/conditions/hemochrom/?start=2

The question I would ask is if you are eating a lot of food known to be high in

iron levels. But at the same time, we have an epidemic of iron and iodine and

nutritional depletion of our soil, so if our soil is depleted of iron, so is our

food. Do you have any of the symptoms which go with Hemo?

Cheers,

JOT

> My Serum Ferritin was just above range at 422 (10 - 420) and while the lab has

given the normal range up to 420, internet searches suggest that for a mid 30's

woman, the maximum ought to be much lower, around 200.

[Guest guest]

Hi Ferritin of 422 merits further invesigation by your GP. Before a diagnosis of (HH or GHH) Haemochromatosis or Genetic Haemochromatosis is reached there is a rigid pathway of elimination to follow. Firstly "Fasting" iron panels including Tsat's need to be repeated to reach a consistent measure. Iron Overload "would / could" be determined with a Ferritin 422 and it is the first step of a diagnosis of HH. But there are other

factors that could eliminate the diagnosis of HH and that would a genetic test. Even with a positive genetic result HH may not be the diagnosis ... Confusing? It sure is.. I've put two attachments with this email Good luck ...Jaki Haemochromatosis - anyone got any experience of this?

So, I have spent the last couple of days thinking about my blood tests (TSH 3.3 - significant to us but not to the NHS) and I chanced upon an entry for Haemochromatosis, which I have never heard of before.

My Serum Ferritin was just above range at 422 (10 - 420) and while the lab has given the normal range up to 420, internet searches suggest that for a mid 30's woman, the maximum ought to be much lower, around 200.

More info on symptoms here:

http://www.haemochromatosis.org.uk/pages/symptoms.html

Anyway, I'm going to ask for a Transferrin Saturation test or something next time I see my GP. I'll report back on what he says, but it will be a few weeks yet.

I thought this condition may be a useful one to know about for other people too, and if anyone has any experience of it, please do let me know.

Incidentally, the treatment is good, old-fashioned blood letting, heheh!

(If it is too off topic for this group, I am happy for people to email me)

2 of 2 File(s)

hemochromatosis_diagnosis.pdf

hemochromatosis_course.pdf

[Guest guest]

Hi all,

I have haemochromatosis. In fact the hashimotos was almost certainly caused by

it. Unfortunately it often (very often) goes undetected, so it is not to to say

that it would be picked up in a routine blood test, sadly. It also affects

almost as many women as men, but usually doesn't present until after menopause,

as women lose blood during menstruation. , ask for a specific test, your

ferritin is on the high side (and people with HH have to keep ferritin to below

40) and untreated HH is 100% fatal. Mine when undiagnosed for years by which

time a lot of damage had been done although, thankfully, it was caught before my

ferritin was more than 1000 (danger then of liver cancer, cirrhosis, failure

etc. Don't let any doc tell you you can't have it because it's 'too rare'. It

isn't. One in every 200 either have it or are carriers.

There's also a link between HH and hypo. See this:

'...Low iron/ferritin: Iron deficiency is shown to significantly reduce T4 to T3

conversion, increase reverse T3 levels, and block the thermogenic (metabolism

boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as

indicated by an iron saturation below 25 or a ferritin below 70, will result in

diminished intracellular T3 levels. Additionally, T4 should not be considered

adequate thyroid replacement if iron deficiency is present (1-4)). Ferritin

levels for women need to be between 70 and 90 (for men around between 150 and

170)...'

Oh, and most of the iron contained in food in non-heme and therefore fine. Just

avoid red meat and alcohol.

If you have any more questions, I'd be happy to help.

>

> Hi :

>

> Sometimes ferritin is high because there is inflammation in the body

somewhere....and you did mention that you had been ill. I asked if high iron

ran in your family specifically......for this Hemo reason. It may be a good idea

to get your saturation test done just for your own knowledge. But, usually at

your age, you would know if you had Hemo.

[Guest guest]

Hi , why does the ferritin level have to be kept below 40

if you suffer with haemachromatosis - I have not heard about this before. Do

you give blood to bring your iron levels down? I do know however, that leaving

ferritin levels getting on for 1000 is asking for serious trouble. I just

can't get my head around this level of 40 for some reason.

Luv - Sheila

Hi all,

I have haemochromatosis. In fact the hashimotos was almost certainly caused by

it. Unfortunately it often (very often) goes undetected, so it is not to to say

that it would be picked up in a routine blood test, sadly. It also affects

almost as many women as men, but usually doesn't present until after menopause,

as women lose blood during menstruation. , ask for a specific test, your

ferritin is on the high side (and people with HH have to keep ferritin to below

40) and untreated HH is 100% fatal. Mine when undiagnosed for years by which

time a lot of damage had been done although, thankfully, it was caught before

my ferritin was more than 1000 (danger then of liver cancer, cirrhosis, failure

etc. Don't let any doc tell you you can't have it because it's 'too rare'. It

isn't. One in every 200 either have it or are carriers.

_

[Guest guest]

How was the Hashi's caused by the hemochromatosis?

Cheers,

JOT

> I have haemochromatosis. In fact the hashimotos was almost certainly caused by

it.

[Guest guest]

Hi all

Thanks for your replies!

JOT - You were evidently one step ahead of me in asking about family history, I

hadn't made the link! My mother says that here iron levels were high or very

high during both her pregnancies, but can't be any more specific than that. Both

of her parents died in their 50's (heart attack/stroke) so the details are

scarce there. My father's side of the family seems to have good longevity on the

whole though.

I don't think I've ever had blood tests before, not since I was a kid anyway. I

think I was tested for anaemia when I was about 13 and it came back clear but

nothing else was mentioned.

And as for the Acute Phase nature of Ferritin, the blood was taken six weeks

after surgery, and the wound (three inches or so) wasn't completely healed but

it was well on it's way. Is that long enough?

JAKI - Thanks for the attachments! I was pretty proud about how much I have

learned about Thyroids, and now it looks like I may have a whole new area to

learn about! I'll get more tests done first though, incase it was a one-off

anomaly. Incidentally, my Folate came back very high and my B12 was mid-range,

so hopefully I'm ok there. I do supplement those, though.

ANDREA - I'm sorry to read that you are having a bad time of it at the moment. I

noticed that Hypothyroidism was listed as a possible " symptom " of

Heamochromatosis, which was why I wondered if anyone here had it. Thank you for

your offer of help - I don't doubt that I'll be back in touch one I have more

conclusive answers!

My plan is now to get a definitive yes or no on this Haemochromatosis, by new

blood tests as soon as I can. If that comes back positive, then I'll get my

Ferritin down by whatever means, and then ask for a re-check on my Thyroid. This

is going to take forever to sort out, isn't it?!

Thanks, all, this is a really great community of people!

[Guest guest]

I too was going to ask that question JOT.

Luv - Sheila

How was the Hashi's caused by the

hemochromatosis?

Cheers,

JOT

> I have haemochromatosis. In fact the hashimotos was almost certainly

caused by it.

[Guest guest]

Hi Sheila,

In HH patients ferritin must be kept below 50 to prevent organ damage. This of

course is lower than people without HH. If your ferritin, on diagnosis, is more

than 50 (mine was 900+) you have to have phlebotomies every week (if you can

tolerate it) until you are below 50, then you start a maintenance programme.

Depending on how fast you load this can be every 3 weeks or only twice a year.

Mine is every 2 months. The phlebotomies force the body to make new blood using

the iron which has accumulated around the organs. Hope this helps.

>

> Hi , why does the ferritin level have to be kept below 40 if you

> suffer with haemachromatosis

[Guest guest]

Hi JOT,

Many HH patients also have Hashi. Probably caused by iron crystals accumulating

around the pituitary. They gather around every organ, mainly the liver and

heart, though, and eventually cause multiple organ failure and death if not

caught in time and treated.

Cheers,

>

> How was the Hashi's caused by the hemochromatosis?

>

> Cheers,

> JOT

[Guest guest]

That's very interesting .....I would love to see photos of this...

Anyone? show us your photos please !!

Would they show up on a sonogram/ultrasound?

Cheers,

JOT

-> Many HH patients also have Hashi. Probably caused by iron crystals

accumulating around the pituitary. They gather around every organ, mainly the

liver and heart, though, and eventually cause multiple organ failure and death

if not caught in time and treated.

[Guest guest]

I can't know for sure if that may be part of it, . Inflammation in the body

has so many culprits: toxins, environmental stress and lifestyle, food

allergies, an imbalance of the flora in your gut...the list is just to long to

speculate. Surgery is certainly a cause for stress and healing takes a while.

One of the most interesting thing about Hemochromatosis is that Ernest Hemingway

and his family are the poster boys for this disease. If you know anything about

them, lots of serious problems...with him alone, the drinking the drugs and

undiagnosed or untreated Hemo really set him over the edge, his unusual behavior

usually written off as *artistic license.* Depression, alcoholism,

suicides....they assume this disease has been a big part of those

problems......for all members of this family.

Cheers,

JOT

> And as for the Acute Phase nature of Ferritin, the blood was taken six weeks

after surgery, and the wound (three inches or so) wasn't completely healed but

it was well on it's way. Is that long enough?

[Guest guest]

Hi Like Jot I'm intrigued about iron crystals accumulating around the Pituitary? Also is there a new evidence out that links Thyroid Disease and Haemochromatosis? This is of great interest to me. I'm in agreement with you that both these disorders are linked. Thanks Jaki

That's very interesting .....I would love to see photos of this...

Anyone? show us your photos please !!

Would they show up on a sonogram/ultrasound?

Cheers,

JOT

-> Many HH patients also have Hashi. Probably caused by iron crystals accumulating around the pituitary. They gather around every organ, mainly the liver and heart, though, and eventually cause multiple organ failure and death if not caught in time and treated.

[Guest guest]

Hi and Jaki

See the following:

http://www.ncbi.nlm.nih.gov/pubmed/18299688

http://thyroid.about.com/od/relatedconditions1/a/hemachromatosis.htm

Also, a lot further information here http://munstermom.tripod.com/endocrinepit.htm

Luv - Sheila

Hi

Like Jot I'm intrigued about iron

crystals accumulating around the Pituitary?

Also is there a new

evidence out that links Thyroid Disease and

Haemochromatosis? This is of great interest to me. I'm in agreement with

you that both these disorders are linked.

Thanks

Jaki

[Guest guest]

Here's an interesting link regarding the relationship between HH and Hashi >>>

http://www.ncbi.nlm.nih.gov/pubmed/18299688

Actually, I have some fascinating medical papers from (emeritus) Prof Marx, the

Dutch top specialist in HH (there aren't many around ). I was in touch with

him a year or two ago. They're pdf's though, perhaps I could upload them in the

Files section?

>

> Hi

> Like Jot I'm intrigued about iron crystals accumulating around the

Pituitary? 

[Guest guest]

Thanks very much Sheila - I just posted the first link too! Great minds, eh?

>

> Hi and Jaki

>

> See the following:

>

> http://www.ncbi.nlm.nih.gov/pubmed/18299688

>

> http://thyroid.about.com/od/relatedconditions1/a/hemachromatosis.htm

>

> Also, a lot further information here

http://munstermom.tripod.com/endocrinepit.htm

>

> Luv - Sheila

[Guest guest]

/ Sheila Whilst a target Ferritin is 50 with venesections / phlebotomy keeping this level in maintenance isn't at all good for everyone. I personally think it would be too easy to become iron avid. Not a healthy place to be at especially if one has added problems with thyroid disease. Iron avid is a state of “ardent desire or craving for ironâ€. Iron avidity is an iron disorder where the

transferrin-iron saturation percentage (TS%) remains elevated while the serum ferritin (SF) is within normal or below normal range. Ideally, TS% should be below 45%; SF should be within the ideal range of 50-150ng/mL.There are no hard and fast rules with different HH associations around the world recommending slightly different targets for maintenance Ferritin and TSat%.http://www.uptodate.com/contents/patient-information-hemochromatosis-hereditary-iron-overloadAccumulation of iron in the thyroid gland can cause hypothyroidism (poor thyroid function) in about 10 percent of people with hemochromatosis. http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31 & GDL_Disease_ID=C8BD9205-E51B-4186-B4E4-B5087B21F9EA & GDL_DC_ID=9AA60584-3607-4D15-A459-BD3F67A3A4A7 Most of the outward manifestations of hemochromatosis are the result of iron deposition in the organs. Exceptions include the bronze color of a

patient’s skin—which is due to increased melanin deposition—and arthritis, which is due to calcium pyrophosphate crystal accumulation (pseudogout). Arthritis develops in 25–30% of patients and initially involves the second and third metacarpophalangeal joints (Figure 4). Thereafter, a progressive polyarthritis involving the wrists, hips, knees, and spine may ensue. Hypogonadism is the result of decreases in follicle stimulating hormone and luteinizing hormone secretion (from iron deposition in the anterior pituitary gland) and is manifested

Hi and Jaki See the following: http://www.ncbi.nlm.nih.gov/pubmed/18299688 http://thyroid.about.com/od/relatedconditions1/a/hemachromatosis.htm

Also, a lot further information here http://munstermom.tripod.com/endocrinepit.htm

Luv - Sheila

Hi

Like Jot I'm intrigued about iron

crystals accumulating around the Pituitary?

Also is there a new

evidence out that links Thyroid Disease and

Haemochromatosis? This is of great interest to me. I'm in agreement with

you that both these disorders are linked.

Thanks

Jaki

[Guest guest]

Brilliant! Looking forward to reading another slatnt on HH and Thyroid disease...

Here's an interesting link regarding the relationship between HH and Hashi >>> http://www.ncbi.nlm.nih.gov/pubmed/18299688

Actually, I have some fascinating medical papers from (emeritus) Prof Marx, the Dutch top specialist in HH (there aren't many around ). I was in touch with him a year or two ago. They're pdf's though, perhaps I could upload them in the Files section?

>

> Hi

> Like Jot I'm intrigued about iron crystals accumulating around the Pituitary?Â

[Guest guest]

Yes please. Can you upload these in the .Ferritin/Haemachromatosis'

Folder. You open the Folder and then at the top right, click 'Add File'.

Luv - Sheila

Actually, I have some fascinating medical papers from (emeritus) Prof Marx, the

Dutch top specialist in HH (there aren't many around ). I was in touch with

him a year or two ago. They're pdf's though, perhaps I could upload them in the

Files section?

_,_._,___

[Guest guest]

I keep getting 'filename too long' Sheila - will have another go tomorrow

>

> Yes please. Can you upload these in the .Ferritin/Haemachromatosis' Folder.

You open the Folder and then at the top right, click 'Add File'.

>

> Luv - Sheila

[Guest guest]

Managed to upload a couple - just need to change/shorten filenames on pc. Will

do rest on the morrow.