grumpyold3 years ago

Hi Llantnerb,

I have Hashimoto's and haemochromatosis (inherited gene from both parents, homozygous H63D).

I would say that with your iron results you might have that too.

It is usually treated by venesection to get the too iron rich blood out of you.

If you are able, you can help yourself by donating at a blood donation centre.

My ferritin was never higher than 273 and my saturation was never above 54%. No treatment (venesection) was offered to me even though a saturation over 45% generally should be investigated.

Inflammation/infection can also cause raised ferritin but in your case I think it would be advisable to get possible haemochromatosis checked out. If you turn out to be C282Y it has worse health implications than my H63D.

I got my own genetic test done to get my diagnosis because I was told by a gastroenterologist that I definitely didn't have it and that he wasn't going to test for it despite the fact that I had loads of symptoms and my GP had hinted at it.

Proved him wrong.....!

I cannot donate blood and the NHS have refused to treat my haemochromatosis because they say my levels aren't high enough so I take IP6 capsules every day which are a natural iron chelator. Drinking tea with meals also prevents iron absorption .

I steer clear of vitamin C because that can aid iron absorption.

I have to monitor my own condition and get a finger prick blood test twice a year from Medichecks. My last ferritin was 130 which I was relieved to see, but my saturation was still above 45% but (52%) but with no help from the NHS because I can't donate blood, there is nothing I can do to reduce that.

My advice would be to get possible genetic haemochromatosis checked out.

Good luck.

Llantnerb in reply to grumpyold3 years ago

Thanks that's so helpful! I did a 23andme DNA test a few years ago and I checked it - I have just one C282Y which means either I'm okay and this is just a bit if an odd blood test or I have a rare version on the other side which they don't test for because C282Y and H63D make up 91% of the causes of haemochromatosis. I guess I could be that person considering I've read most people with hashimotos need to worry about low iron.

Waiting for gp to call me back now so I'll see what he suggests next.

Thanks again for your helpful advice

Reply (0)Report

grumpyold in reply to Llantnerb3 years ago

You are welcome.

x

Reply (0)Report

SlowDragonAdministrator3 years ago

High ferritin is quite common with Hashimoto’s, often due to inflammation

Vitamin D is on high side. Have you reduced to maintenance dose

How much levothyroxine are you now taking

When were thyroid levels last tested?

Llantnerb in reply to SlowDragon3 years ago

Thanks, yes my vitamin d has come down since I went to maintenance dose. It was 130 in August.

I spoke to a hematologist about the iron and he reassured me that unless my ferritin goes over 400 I'm fine. My iron saturation level is indicative of hemachromatosis but I'm only a carrier so my suspicion (totally unscientific) is that I have a tendency to store slightly more than the average person, so I should keep an eye on it but not obsess over it unless it goes up and up.

I'm on 100mg of levothyroxine now and feeling a lot better than I have all year, albeit I still feel like there's room for improvement. But I'm relieved that I seem to tolerate levothyroxine at all after seeing so many people struggle with it on here.

Reply (0)Report

SlowDragonAdministrator in reply to Llantnerb3 years ago

So bloods should be retested 6-8 weeks after each dose increase

Also Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva, Aristo and Glenmark are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Reply (0)Report