Haemochromatosis

Haemochromatosis. I had blood test that came back as ferritin 1004. I can’t get a GP appt until 20th August, it’s just dawning how extremely high this result is! If diagnosed what was your levels and what treatment did you have. I was expecting thyroid to be diagnosed but those levels perfect 😱

[Cooper27]

Do you take any vitamins/supplements at the moment?

The standard treatment is generally to take a pint of blood every so often, to lower your iron levels down. I had slightly over range results once, so looked into what they do, but mine were pushed over by taking too much vitamin C, and thankfully when I stopped taking the vitamin C, mine fell into range again.

[Hidden in reply to Cooper27]

Thanks for the reply! My blood tests told me to take vitamin D but that’s it, other than that Cbd and probiotics!

[Cooper27 in reply to Hidden]

I can't imagine those would influence your iron levels.

From what I remember, what they'd normally do is test you twice, about a month apart, before starting treatment. A gap until your doctor's appointment isn't going to make much difference, as you'd need to wait for the next blood test anyway, so don't worry about that.

[Hidden in reply to Cooper27]

The other results were horrendous, I don’t know where GP will want to start 😂😂

[SlowDragon Administrator]

Can you add the other thyroid related results and ranges

TSH

FT4

FT3

TPO and TG thyroid antibodies

Vitamin D

Folate

B12

High iron due to hemochromatosis can cause hypothyroidism

verywellhealth.com/hypothyr...

Rarely, certain diseases, like hemochromatosis, can deposit abnormal substances (iron, in the case of hemochromatosis) in your pituitary gland, causing central hypothyroidism, or less commonly, your thyroid gland, causing primary hypothyroidism.

[Hidden in reply to SlowDragon]

I’m trying to work out how to add results as a photo!

[helvella Administrator Thyroid UK in reply to Hidden]

You can only add one picture, and that must be to the original post in a thread.

You may not realise that you can edit any posts or responses you have made here.

HealthUnlocked have produced a simple demonstration of how to do this. You can find this here:

support.healthunlocked.com/...

When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:

support.healthunlocked.com/...

I am pointing this out purely to ensure that you know your options.

(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)

[Hidden in reply to helvella]

Excellent, thanks for your help!

[JumpJiving]

I'd expect you to be referred to haematology. They'll probably do venesections until your levels are within range. Typically a blood test, then venesection, then repeat. However, I'd hope that they would also investigate the cause as well. Note that different departments can be responsible for venesections. My local hospital does them in the oncology and haematology day care unit, which is a very relaxed, pleasant, efficient and well organised area, the complete opposite of the feeling of over-stretch and barely managed chaos in most of the rest of the hospital. It's the one bit of the hospital that I enjoy going to!

If you're taking any iron supplements, clearly you should stop. Also, avoid iron rich foods - most of which are fairly obvious (dark green leafy things), but some of which are not (oranges). Haematology should give you a list, although you should be able to find something similar online.

The British Liver Trust have some useful info at britishlivertrust.org.uk/li...

[Hidden in reply to JumpJiving]

Oh gawd I followed your link and read up on it and it’s like they are descriptive of me! My Grandfather was Irish too, and I kept going to the doctor with pain in the two fingers mentioned! Seems everything gets put down to fibromyalgia that’s why I had the medichecks blood test. So glad I did! Thank you for taking time to reply.

[Treepie]

Might not be haemochromatosis. My ferritin has risen from 400 to 1300 over four years. High ferritin also indicates inflammation somewhere in the body.I have had chemo for five months this year and thought that clearing the lymphoma might lead to a reduction in ferritin but it has gone up again. I have inflammation in the oesophagus and maybe elsewhere as the liver tests have returned as abnormal probably the result of chemo.

Seeing GP next week.

[Hidden in reply to Treepie]

Oh thanks for the heads up! My other results show inflammation, not sure where and of course abnormal liver results. Hope your chemo went well?

[Treepie in reply to Hidden]

Yes thanks, clear for now.

[Treepie in reply to Hidden]

Just noticed on my result it says ferritin is raised in inflammation, infection, liver disease, malignancy and iron overload( haemochromatosis)

[Hidden in reply to Treepie]

Snap! Grim reading for both of us 😱

[radd]

Jjab,

I have haemochromatosis

The two most important iron tests to potentially diagnose are elevated ferritin and transferrin saturation (TS).

Ferritin is a protein that stores iron, releasing it when your body needs it and binding to transferrin, which transports iron to where new red blood cells are made. TS is the ratio of serum iron divided by total iron binding capacity (TIBC) to give TS as a percentage, which then indicates how full (saturated) the body’s system for transporting iron is. If both are elevated, then iron overload is confirmed.

However, both serum iron concentration and transferrin saturation do not quantitatively reflect body iron stores as both irons could be elevated due to other issues such as inflammation, infection or liver disease. Therefore, a genetic test will be necessary to confirm two abnormal genes and a haemochromatosis diagnosis.

You have to have inherited an altered (mutated) gene from both of your parents. The most common is called HFE on chromosome 6 and interacts with the cell receptor for transferrin which binds and transports iron in the blood. The known mutations of the HFE gene are C282Y and H63D. The C282Y mutation is most common in white populations.

Ask your GP for a full iron panel which will include the TS. Your GP may not know about haemochromotosis (mine didn't) so make sure you arm yourself with some literature. My hemo likes both my TS and ferritin about 50.

Let's hope its not haemochromotosis because the necessary venesections can play havoc with hard earned thyroid hormones and nutrients levels.

haemochromatosis.org.uk