haemachromotosis and hypothyroidism

[Pearlteapot]

good morning all. I have tested positive for haemachromotosis. I did a test privately as my GP kept wanting to wait longer to see if my iron levels were a fluke. I will be asking her to refer me for venesection. I wondered if there are any issues I should be aware of re being hypo and haemachromotosis together. I think radd may know about this? Thanks in advance

[SlowDragon Administrator]

some links

redriverhealthandwellness.c...

pubmed.ncbi.nlm.nih.gov/182...

[helvella Administrator Thyroid UK]

If you are not already aware, this UK charity maybe of interest/help:

Haemochromatosis UK

Our charity

Haemochromatosis UK was founded as The Haemochromatosis Society in 1991, by people affected by genetic haemochromatosis. Our founder, Janet Fernau was recognised for her charitable work in 2014 with a MBE. Our charity is still run by people with genetic haemochromatosis.

We work to support anyone affected by the condition, across three key areas :

◦ Support

◦ Education & Awareness

◦ Medical Research

The charity works closely with its counterparts in other countries; it is a member of Haemochromatosis International (HI), the European Federation of Associations of Patients with Haemochromatosis (EFAPH) and the Genetic Alliance.

haemochromatosis.org.uk/

Screenshot of Haemochromatosis website

[Pearlteapot in reply to helvella]

Thanks. I am aware of this charity. I used the subsidised genetic blood tests that the charity offers since my GP thought my iron result was a 'fluke' and that we should wait and see.

[radd in reply to Pearlteapot]

Pearlteapot,

Sorry you have this diagnosis, but so interesting it only became apparent after Levo increased iron metabolism (I love all this hypo & iron stuff 😁).

However, it is only a diagnosis of a genetic impairment and doesn't guarantee elevated iron levels but raises a strong probability, ie it is possible to to have a known mutation associated with haemochromatosis but never have high enough iron levels to warrant treatment.

You had a 50/50 chance of inheriting the genetic impairment with your Mother having haemochromatosis, but only two months ago serum iron was deficient and haematocrit indicated too few blood cells. Ironically it seems being hypo (or having inadequate/ineffective thyroid meds) has actually saved you from having elevated iron/ferritin/T/S% levels earlier! My saviour was dire menorrhagia 🤮, and I was then diagnosed during menopause.

healthunlocked.com/thyroidu...

Venesection is crap because as well as reducing iron levels, it reduces everything else including B Vits, folate, even thyroid hormones, etc. Thyroid hormones synthesis relies upon many micronutrients such as zinc, selenium, magnesium, Vit A as well as amino acids (I make myself eat a little meat protein most days). I purposely left out iodine (taboo topic on this forum) because many of us should achieve enough through thyroid hormone replacement meds & diet, or be taken mindfully.

Fortunately I'm now in 'maintenance' (controlled iron levels) so only requiring about two venesections a year which actually feels quite refreshing, Weird for someone who used to faint at the sight of blood!!

Anyway, I would say you have a long while for iron to build enough to be a problem but you will need to learn how iron behaves in the face of hypo and interpret iron panel results (especially the calculation of T/S%) because a GP's (& even hemo's) interpretation isn't always correct with hypo factors taken into consideration. Also keep all nutrients optimal, eg once my deficiencies were addressed I have continued to supplement a multi-vit combo or low amounts of individual.

As helvella has already signposted Heamochromatosis UK are very helpful and you don't have to be a member to ask questions. I also found (although quite old now) The Iron Disorders Institute Guide to Hemochromatosis book very informative. You don't need a cook book as it's impossible to eliminate iron from your diet without compromising other nutrients but you can take sensible precautions such as avoiding red meats and drinking iron inhibitors such a milk with high iron foods as opposed to orange juice (Vit C) or alcohol that aids iron absorption. Also recommended to avoid shellfish although I still eat chilli-prawns as just love 'em 😍.

The HU Haemochromatosis forum is extremely quiet as Heamochromatosis UK members prefer to use Facebook groups, so all HU posts are usually answered by me 😆.

[Pearlteapot]

Hi Radd and thanks for the comments, some of which I don't understand

I seem to have what could be called 'haemochromatosis light' in that it is the compound heterzygous version (combined C282Y/H63D) in which iron loading is thought to be slower and the risk of organ damage is very much lower.

Anyway, I would say you have a long while for iron to build enough to be a problem but you will need to learn how iron behaves in the face of hypo and interpret iron panel results (especially the calculation of T/S%) because a GP's (& even hemo's) interpretation isn't always correct with hypo factors taken into consideration

When you say I will need to learn to interpret iron panel results, esp. T/S% to take into account hypo, what do I need to learn?

As I understand it so far the hypo reduces iron metabolism which is why so many hypos are anaemic, so if one has haemochromotosis and hypothyroidism the iron levels may be lower than if one was not hypothyroid. The iron levels may rise and fall depending on how effective the thyroid medication is at a given time. i.e. if my iron drops it is a warning sign that my thyroid medications are not working well (although I will likely know this anyway from feeling rubbish in other ways)?

I don't want a cookbook. Given that I have the less loading variant I think that once my iron levels are within range again if they give me venesection I will eat normally but include iron blockers as you suggest. I eat very little red meat but am extremely partial to liver in various forms and am not seeing anything at the moment that indicates it would be necessary to give it up, or shellfish. Although the risk from shellfish is bacteria that thrive in a high iron environment so presumably if/when my iron levels go back down within range I can return to sushi if I wish (which I do).

I'll have a look for the book you mention.

so interesting it only became apparent after Levo increased iron metabolism (I love all this hypo & iron stuff 😁).

I know, it's so strange how my iron levels have been bouncing around from high, to very low, to way over range. I'm doing a new test next week so I have a fresh one in hand before seeing my GP and asking for a referral.

Many thanks