Can anyone help with iron levels?

[Arlie123]

The endocrinologist suggested I get tested for haemochromatosis due to high ferritin levels. GP has done an iron panel first and if it doesn't meet criteria I won't be referred for genetic testing. Can anyone tell me anything about these results in relation to high ferritin and/or haemochromatosis?! I know not strictly thyroid but hoping someone might be able to help.

Ferritin - just says high (medichecks from two weeks ago was 353ug/L (13-150)

Serum iron level - 28 umol/L (11-29)

Serum TIBC - 56 umol/L (41-77)

Thanks very much

P.S. I don't take iron or vit c supplements, eat red meat occasionally and do eat quite a lot of spinach if that has any bearing!! I have been on 50mcg levo for just over a week.

[grumpyold]

I use Medichecks to monitor my haemochromatosis. The NHS told me I couldn't possibly have haemo because "if I had, my ferritin would be more like 1000." It was 259 at that time but my transferrrin saturation percentage was 52% and anything above 45% should be investigated.

No-one would listen to me though, so I went and got my own DNA test done privately. And lo and behold, the test was positive and I have inherited the same mutant gene from each parent. I am homozygous H63D.

The NHS still completely ignores this fact (they only seem to bother if you are C282Y) and not once have they given me blood tests to monitor my haemo. Hence, I constantly monitor through Medichecks.

It would be useful if you knew your transferrin saturation percentage because if it IS over 45% this would suggest that you might have the condition. I hope you have better "luck" than me persuading the lab rats and NHS robots that it needs investigating!

[Arlie123 in reply to grumpyold]

Thanks, having been a long time fan of the nhs I am now struggling given how hard it has been to get any meaningful help. Sorry you had issues too. Not sure why they’ve not done transferrin saturation percentage as now having researched it seems kind of key in determining whether to get the genetic test which was the whole point of the iron panel. 😔 thanks for the tips! Do you give blood regularly to manage it?

[grumpyold in reply to Arlie123]

They won't let me give blood because I once had a suspected angina attack. It turned out not to be but even with the OK to donate from the cardiologist the blood robots won't listen. I lost my faith in the NHS many years ago . Hope you have more success getting your possible haemochromatosis treated.

[Arlie123 in reply to grumpyold]

I've just realised you work out your transferrin saturation with the above figures. Mine is 50% - don't know what my ccg's criteria is for the gene test but will have to wait and see I guess.

[gabkad]

My ferritin was over 230 (I can't remember exactly because it was 4 years ago).

The endo was questioning if I'd ever been tested because my haemoglobin is

consistently around 160 and so far has maxed out a few times at 165.

I did the private DNA test and I have only one H63D but it is causing some

trouble.

I discovered that beans have way more iron than meat. People with haemochromatosis

genes can absorb the non-heme iron much more efficiently than regular humans.

So even though I ate almost no meat for two years, it had zero beneficial

effect. I was sucking up the iron gangbusters.

Yesterday was my 9th blood donation since early 2018. They tested my

haemoglobin before the donation except I didn't look. I'll check on the

website later. Seeing as how it only took 6 minutes 33 seconds to fill

the donation bag, clearly I was not dehydrated. The blood was flowing

fast.

I don't know what the ferritin is at right now. Will schedule

an appointment with the GP and get testing done.

I don't know why my haemoglobin is so high. It's always been high.

I used to joke it's because my ancestors lived in the mountains.....

well,, actually after doing the Ancestry

DNA testing I discovered that in fact they did. I've got a bunch of second/whatever

cousins who also have H63D. So we know where it came from.

I wish I could donate blood more frequently because a couple of weeks after

donating, my painful bones are less painful for a few weeks.

I'll assume with a high haemoglobin my brain is getting enough oxygen.

And yet there are days I feel like it's underperforming.

What's your haemoglobin? It's not always universally high with

haemochromatosis but it would be good to know what it is.

[Arlie123 in reply to gabkad]

Sorry you don’t feel 100%. Giving blood regularly does seem like a logistical effort! I will check heamoglobin, thanks

[gabkad in reply to Arlie123]

Haemoglobin yesterday was 148. It's bouncing around.

I'll go to the doctor anyway to get the ferritin checked.

Next week.

g

[SlowDragon Administrator]

You have PCOS and hashimoto’s....hemochromatosis can be linked to hashimoto’s

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

redriverhealthandwellness.c...

functionalhealthnews.com/20...

[Arlie123]

Thank you, the red river article was particularly helpful. Just need to get diagnosed now!

[gabkad in reply to Arlie123]

Absolutely, My secondwhatnot who knows exactly cousin had her thyroid removed

because the iron build up in it caused her body to form antibodies to it.

She had blood taken out every month for quite some time until her iron

went down. That was 30 years ago.

[Heloise]

Hi Arlie, it might be good to have that DNA test if you can but inflammation can raise ferritin for some reason. I'm thinking since you are probably ill right now being newly diagnosed and inflammation is very high with autoimmune conditions. Spinach has a high iron content but not nearly as much as liver. Both raw and cooked spinach are excellent sources of iron, containing twice as much as other leafy greens. A 100-gram serving of raw spinach contains 2.71 mg of iron, whereas cooked spinach contains 3.57 mg.Nov 27, 2013

[Arlie123 in reply to Heloise]

Thanks, I’m hoping that’s what it is as another issue to deal with is not ideal and it also affects fertility which I didn’t know until endo told me! Might go easy on the spinach 😂

[Heloise]

Yeah, don't panic. I hope they will get your thyroid numbers regulated with a low TSH under 2.0 and higher margin for FT4 and FT3 which is the active part of the hormone and can be picked up by receptors which are in every cell of your body. Usually it's a process of 3 or 4 months with tests every 6 or 8 weeks. Try to get to an optimum level by increasing as needed.

[Arlie123 in reply to Heloise]

Thanks, will do

[Heloise]

Folate is really important in pregnancy and has to work together with B12. It seems they

aren't really sure what an optimal level is. health.howstuffworks.com/we...

[SlowDragon Administrator]

Only learnt this week....high iron can be linked to MTHFR

stopthethyroidmadness.com/h...

[Arlie123 in reply to SlowDragon]

Thank you, will check it out. Don’t know much about mthfr

[SlowDragon Administrator in reply to Arlie123]

Very common with thyroid issues

This company offers evaluating DNA from Ancestry (or others)

mthfr-genetics.co.uk/index....

Or apparently free on here

geneticlifehacks.com/