Haemachromatosis?: I am going to see my GP on... - Thyroid UK

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Haemachromatosis?

Parody103mg profile image
18 Replies

I am going to see my GP on Thursday morning re my recent Medichecks results and have had lots of useful info re results on here so switched on with that. However, I have a high reading of Ferritin 313ug/L - (normal range 13 - 150) but I see most people on here have a low or below Ferritin reading with this hypothyroid/Hashimoto's condition and require B supplements. Why is mine so high especially when B12 seems to fall within range? Think it indicates inflammation as my antibodies indicate Hashimoto's but not understanding really. I do eat red meat etc but not overly introduced in diet. Possibly gene related? Will obviously query but any info would be helpful in advance please. Here are my total thyroid results again anyway.

BLOOD PATHOLOGY RESULTS 03 - 03- 2020

CRP HS:

1.11mg/L Normal range: 0 - 5

FERRITIN:

313ug/L Normal range: 13 - 150 R

FOLATE - SERUM:

10.21ug/L Normal range: 3.89 - 19.45R

VITAMIN B12 - ACTIVE:

92pmol/L Normal range: 37.5 - 187.5

VITAMIN D:

80.7nmol/L Normal range: 50 - 175

TSH:

4.8mIU/L Normal range: 0.27 - 4.2

FREE T3:

3.94pmol/L Normal range: 3.1 - 6.8

FREE THYROXINE:

17.5pmol/L Normal range: 12 - 22

THYROGLOBULIN ANTIBODIES:

267kIU/L Normal range: 0 - 115

THYROID PEROXIDASE ANTIBODIES:

314kIU/L Normal Range: 0 - 34

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Parody103mg
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18 Replies
Cooper27 profile image
Cooper27

I know it's an obvious question with an obvious answer, but do you/did you take any supplements that contain Iron or high doses of vitamin C?

There is an autoimmune condition that causes high ferritin levels, so your doctor will probably want to rule that out.

B12 and ferritin are not related really. My ferritin levels were always at the top of the range despite B12 and vitamin D deficiencies. My ferritin went too high when I took vitamin C supplements.

Parody103mg profile image
Parody103mg in reply toCooper27

I took some multivitamin supplements recently (took for about 6 weeks) that contained some very low dose vitamins. Have now been advised re thyroid sites that that is not the way so stopped (but after blood test). However, the dose of vit C and iron was so low that I really can't think that this could have caused raise in recent Ferritin results. I have, what I would class, as a relatively normal diet that includes some red meat, citrus fruit etc but not on overdose of either as far as I can ascertain. Did you find a solution re high levels - due to your vit C intake maybe? Have they reduced if you have quitted vit C supplement now?

Cooper27 profile image
Cooper27 in reply toParody103mg

I really hate the fact multivitamins contain iron so willy-nilly. It's not necessarily what's pushed you over, but it doesn't help.

My levels normalised when I stopped vitamin C, but giving blood also helps. They might decide your iron is too high to donate though (bear in mind, the person receiving it might not need such high amounts of iron either).

beh1 profile image
beh1

I had high ferritin like yours and the doc was not concerned and said they didn’t worry unless it went over 1000. So I did a little research about treatment and apparently the only way to lower it is to have blood taken regularly. Didn’t think my doc would be prepared to organise that, so looked into becoming a regular blood donor. This seems to keep the levels down. Not sure what I’ll do when I get too old to be accepted though!

Be interested to know what your doc has to say.

Parody103mg profile image
Parody103mg in reply tobeh1

Hmmmm . . interesting as high iron levels/inflammation appear to cause problems with essential organ destruction over time. Oh dear, these GP's . . . I also read about blood release regularly helping lower these high Ferritin levels - I used to donate blood on a regular basis but when I gave birth to my child (over 24 years ago) and required a blood transfusion, I was considered no longer eligible to donate due to HIV concerns etc in those days if you had ever had a blood transfusion. Although it was screened, the technology was not as it is now! Maybe I will ask again as I'm sure things have progressed and changed. Strangely, decades ago "blood letting" as they called it then was a regular occurrence for a number of conditions. Perhaps we haven't moved on as much as we think . . .

in reply toParody103mg

I’m in a similar situation re blood donation as I also had to have a transfusion after a birth in 1982 so can’t donate blood but as far as I know they do make exceptions because they throw away the blood if your donating because of high ferritin so it’s worth phoning your local donation centre and having a conversation about this.my ferritin was 499 at last test so I’m due to test again soon but I’ve been reading up today because I’m having issues with my adrenals and had some poor readings on my saliva test this week and apparently low cortisol can cause ferritin to rise have a look at the site Seaside Susie was kind enough to direct me to rt3-adrenals.org there’s some info on iron and ferritin there.x

Parody103mg profile image
Parody103mg in reply to

Thank you Thrones - that is very helpful and reassuring.

in reply toParody103mg

Look at the inflammation section on that site it’s very informative.million thanks Seasidesusie x

Jmiller623 profile image
Jmiller623

Hi Parody! Ferritin can be high for many reasons. It can be high during inflammation which would be the most likely explanation in your case with an obvious autoimmune disorder. In hemochromatosis, ferritin is very very very high like in the thousands and usually >3000.

If you receive blood transfusions regularly, this will also increase ferritin. In this case and in hemochromatosis, first line treatment is therapeutic phlebotomy/blood letting.

I don’t think the ferritin level is anything to worry about. I’d focus more on thyroid labs. By no means is what I say etched in stone so please discuss with your physician.

Keep us posted on what you discover. Be well. ❤️

Parody103mg profile image
Parody103mg

Thank you Jmiller623. All information interesting and reassuring. Thinking maybe high levels are more likely due to autoimmune disorder rather than haemochromatosis now. Good to go in to address GP with research and helpful info though through this site - brilliant! Thanks for help. Will post re feedback and conversation with GP. Hopes not high re thyroid issues but finally beginning to address issues, concerns, medication and remedies myself - long term haul in the offing I guess.

gabkad profile image
gabkad in reply toParody103mg

I have one gene for haemochromatosis. One of my second cousins has two and 30

years ago had to have her thyroid removed due to iron overload. I know, I'd never

heard of this before but she developed an auto-immune disease against her

thyroid because it was full of iron. She had many phlebotomies done and

her iron levels are now normal range.

My ferritin was over 230 four years ago. For women over 300 is dangerous.

There's different sensitivities for men and women. When a doctor says

it's only dangerous when it's at 1000, that's not true for women.

I donated blood 9 times and went on a low iron diet for two years to see

what effect it would have. Recent test had my ferritin at 33 which is a

bit of overshoot. So now I'm eating my 'normal' diet again and will retest

end of April. I want to see how quickly the ferritin rises under regular

dietary conditions. Because yes, even one gene can prove to be problematic.

Jmiller623 profile image
Jmiller623 in reply toParody103mg

If you’re really worried about hemochromatosis, ask GP to for iron saturation labs. This is a fairly cheap test. If >45%, this would be cause for genetic testing. My saturation was 52%. I was tested due to jaundice, elevated liver enzymes, heart probs even though my ferritin was 40. My ESR/CRP (inflammatory markers) are always low so no inflammation. The genetic test was negative.

I don’t want to say having hemochromatosis is absolutely impossible but seems improbable without other organ dysfunction. As others have echoed, your thyroid labs would worry me more than the ferritin TBH. It wouldn’t hurt to ask for iron saturation but you’ll probably get push back from GP.

Arlie123 profile image
Arlie123

Hi parody

I also have high ferritin levels - similar to yours, sometimes higher. Endo suggested I get checked for haemochromatosis but GP did full iron panel and as my iron saturation level was in range didn’t refer me to haematology. Endo wasn’t too concerned as ferritin is usually much more raised in haemochromatosis he said. Raised levels can be due to inflammation and also excess weight I believe. Good luck with gp!

Treepie profile image
Treepie

Your thyroid tests are more of a problem ,if you are on levo you need more to get TSH near or below 1 and FT4 ,FT3 in the upper half of the range.

Your ferritin may be high but not seriously high ,mine kept rising to over 900 and various inflammatory conditions have been found.

Your B12 and D3 look low but Seaside Susie is the one to ask on vits.

PDN1 profile image
PDN1

I have hypo issues and haemachromatosis. I live in Canada, there they treat a lot earlier with blood letting/ donations and like to keep levels under 100 (I was 650 when discovered recently) if you have heamachromatosis. I wonder if it is the blood disorder that initiated the thyroid issues but have not found any clear links.

Parody103mg profile image
Parody103mg in reply toPDN1

I really don't know. I've been hypo for 16 years and recently been diagnosed with Hashimoto's. I'm guessing (maybe) the high Ferritin relates to inflammatory issues re antibodies attacking thyroid. I don't recall ever having a Ferritin test before so I have nothing to measure against my recent result. These autoimmune diseases seem to raise one mystery after another.

StarFlower2 profile image
StarFlower2

I have had high ferritin up to 450 in the same reference range as yourself. It eventually came down over the years but is still 180 so slightly over range. I don’t have Haemachromatisis as my dna results don’t show it. Im vegetarian so red meats aren’t in my diet. I think my ferritin is coming down because my thyroid meds are working now and I’m feeling much better. My cortisol levels were high at night and I think this also affected my ferritin levels.

Certainly get tested for Haemachromatosis so it can be ruled out.

humanbean profile image
humanbean

Just for info, ferritin is a positive acute phase reactant or a positive acute phase protein. In other words it rises in the presence of anything which causes an increase in inflammation.

Imagine you have a bacterial infection somewhere in your body. The bacteria causing the infection needs iron in order to reproduce. By binding iron in ferritin the body reduces the amount of iron available to the bacteria.

There are various conditions which increase the risk of inflammation. Ferritin rises in the presence of such conditions, whether they are bacterial, fungal, viral etc. It's a protective mechanism.

en.wikipedia.org/wiki/Acute...

See page 8 in this link : irondisorders.org/Websites/...

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