I was diagnosed with haemochromatosis last year and around 6mths ago I started venesection (to those not familiar it is condition were my iron levels are too high and to rid the body of it I have to have blood taken out every 2 weeks ) I was just wondering whether anyone else has had both of these issues and apart from the obvious (avoid alcohol , iron /vit c suplements etc ) any tips ? also if you had these issues at the same time once your iron was undercontrol did you start to feel better (I'm finding the fatigue is horrendous)
thanks Ian
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ianskelly
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I've not had any for a while probably over 6mths, was due to have some last week but it was cancelled last minute. It may have been slightly misleading anyway as it was due a day and a half after venesection.
I've just tested with Ferritin at 255 which Medichecks reported as haemochromatosis. Would you mind telling me what your Ferritin level was before venesection
Reading of other's experiences I'm not sure that mine is high enough for treatment.
hi, it was just below 700, its probably worth checking with your doctor as they can do a genetic test and then ask about treatment, probably best not to let them fob you off like they did with me (before I found out how dangerous it can be) ultimately it's not nice but if you have it it's best to start treatment as it's likely to take me approx a year of twice monthly appointments to get to the range they want
pubmed.ncbi.nlm.nih.gov/662...Men with hemochromatosis had a much greater iron load than women, and they also had a surprisingly higher incidence of thyroid disease. Iron may have caused injury to the thyroid, followed by the development of antithyroid antibodies and hypothyroidism. The frequency of thyroid disorders in men with hemochromatosis is about 80 times that of men in the general population.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hi Ian I was wondering how you got on and if you have any info for me on this please? my daughters recent resukts show haemochromatosis and she has hashimotos, she is only 19 and I am quite worried, we have to wait weeks to get her down to my home town to see a GP ( she is at uni and her doctors are crap),,,,so in meantime i am trying to find useful info and research! Do you have any info or tips at all? Thank you
Hi , hopefully there isn’t too much to be worried about as your daughter is only 19 chances are her levels aren’t too high as a guide I stated at around 700 and a liver scan showed no damage. Basically it is treated by removing blood until it gets to a normal level. Again as I guide I started in august going every other Monday and my levels now are 150, she may be scared about the bloods but it’s the same as her going to a blood bank and donating. The only thing is as it is done more regularly it can like me, make you feel fatigued for a good few days, though in my case this maybe because I have hashis so fingers crossed this may improve in a month or too when I’m at my target level of under 50.Hope this helps ! Ps you mentioned tips I have searched but never really found any , don’t obsess about trying to avoid iron apart from product like cereals that can be fortified .
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