Very high ferritin ldvels: Ive just gotten blood... - Thyroid UK

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Very high ferritin ldvels

Cherief profile image
38 Replies

Ive just gotten blood work from dermatologist testing what may ne causing hair loss. Now i see i have very high ferritin (265!!) and low d.

Reading about tHis has me scared.

I have message into my gp so hope to talk tomorrow but also hAve other symptoms i wrote off as post menopause related...weight gain, sleep issues, craving for alcohol, low libido and stress very easily...very stressful job in ad sales .

I eat well, mostly organic, have red meat once a week (sometimes twice but not often). Try to cook myself so no salts or butter, good fats, always veggies at dinner, no starch etc

Wild fish, organic chicken. Do smoothies w vegan protein, kale spinach, water, organic peR or berries. Coconut oil or water.

Any advice on controlling thru diet? My dr did say last blood test i have great blood to donate and now have this crazy high Levels of iron!! Thanks for info

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Cherief profile image
Cherief
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38 Replies
Katepots profile image
Katepots

Any inflammatory condition can raise ferretin also alcohol liver disease. You mention you have a craving, are you drinking more than normal?

Have you had your thyroid antibodies tested for Hashimotos? Lots of inflammation with Hashimotos. Id say you were a candidate to be tested. If so you'd need to be gluten free. (Your diet sounds great though) kale can upset the thyroid though if you're having daily as it is a goitergen

Please post back with GP thoughts.

sulamaye profile image
sulamaye in reply to Katepots

Kale is ok if cooked. I steam mine and freeze it and then nuti bullet it.

greygoose profile image
greygoose in reply to sulamaye

Both wrong! lol

Katepots Not everyone is affected by the same goitrogens - and I think Cherief would know if she was - plus, someone on thyroid hormone replacement would have to eat a lot more than a little bit in a smoothie for it to have much of an effect. Goitrogens don't upset the thyroid, they just impede the uptake of iodine by the gland, so that the gland cannot make enough hormone, that's all.

And, sulamaye cooking, freezing will not alter the effect it has on you if you are super sensitive to it. But, not everyone is sensitive to the same goitrogens, which is possibly why they think that cooking destroys the goitrogenic element. I'm not sure any real research has ever been done on it.

There is no reason to avoid goitrogens if they don't upset you in anyway. But I think you'd realise that every time you ate kale - or whatever - you felt bad afterwards, and just avoid it. :)

sulamaye profile image
sulamaye in reply to greygoose

Grey goose, the jury is ultimately out on that one, I've read plenty that cooking does destroy. I don't freeze it to destroy it I freeze it to store it and also because a cold smoothie is a lot easier to drink than a warm one!

I found uncooked kale went straight through me and so there's no point eating raw veg if it just goes straight through you, but steaming it has stabilised all that.

greygoose profile image
greygoose in reply to sulamaye

Yes, but going straight though you is not a goitrogenic effect.

The jury is in, as far as I'm concerned. Before I was fully replaced on thyroid hormone, I was sensitive to strawberries, corn, pears and walnuts - very sensitive. On a couple of occasions, I ate things that I was not aware contained one of these goitrogens, and I reacted to them exactly as I would have done had they been raw.

OK, so maybe cooking might work for some people, but my point is : don't count on it!

However, apart from making you feel bad for a few hours, goitrogens are not going to do any permanent damage, so there's no need to fear them.

sulamaye profile image
sulamaye in reply to greygoose

Where precisely did I say they went through me because of the goitrogenic effect? I didn't.

You're entitled to your opinion about whether cooking destroys them or not, I'm just saying other sources disagree with you.

Personally I'm not that bothered, I was simply contributing something that I had read. As is my right.

Cherief profile image
Cherief in reply to greygoose

I don't have any of these reactions. I feel fine !

Cherief profile image
Cherief in reply to sulamaye

The kale does not go straight thru me

Cherief profile image
Cherief in reply to greygoose

I had endocrine tests and everything was normal for post menopausal I was told. Yet the hair falls out!

greygoose profile image
greygoose in reply to Cherief

Well, something isn't normal, then!

Normal is not a word we use round here, because it's meaningless. We're all individuals, and what's 'normal' for one, isn't 'normal' for another.

What exactly were these tests?

Cherief profile image
Cherief in reply to greygoose

For hairloss. By derm. I have to look up results to post

greygoose profile image
greygoose in reply to Cherief

Yes, I think that's best. Then we can know exactly what was tested (I know it was for hair-loss, but what where the tests called?) and what the results were. :)

arotella profile image
arotella in reply to Cherief

WHAT IS DERM?

Cherief profile image
Cherief in reply to Katepots

Gp said. Not to worry.

I have annual physical in 2,woks and will address

Honestly western Drs are not hip to reality My naturopath is away til sept 5 so will get with her then I do have very intense demanding sales job and am type a personality but doing yoga 2x a week and meditating to get myself in a calmer place am 61 and in that crazy to young to retire , to old to keep up I researched the high ferritin and see liver problems and cancer and need to find alternatives to alcohol to get myself to relax after long days at work

Katepots profile image
Katepots in reply to Cherief

Stock GP answer, idiots! You sound like you're doing all the right things. I it down on my alcohol intake too, boring! Still feel better without it. What thyroid replacement did you say you were on?

Saw the comment the hairloss mine has improved greatly switching to NDT.

Good luck with the naturopath.

Cherief profile image
Cherief in reply to Katepots

What is ndt? I have not taken any thyroid meds, my tests say i say im fine

sulamaye profile image
sulamaye

If u can give blood give blood. Unfortunately I have ferritin like urs from diet and because I have m.e I can't donate and I have had hysterectomy so song bleed and get rid of it that way.

greygoose profile image
greygoose

Cherief, butter is a good fat. In fact, it's a super food. Don't avoid it. And, a no salt diet will kill you. You need salt, and you are more than likely stressing your adrenals by not getting enough. Most hypos need more salt, not less.

What is in that vegan protein? Is it soy protein? If so, then that is probably making you very hypo. Soy is a super goitrogen. It not only impedes the uptake of iodine by the thyroid, but impedes the uptake of thyroid hormone by the cells.

Cherief profile image
Cherief in reply to greygoose

It's not soy I will check but it's gluten free soy free etc. by dr SARA Gottfried

I have salt via olives. Lol. In my dirty martinis. But get enough salt from foods I eat and don't cook at home. I use other spices snd garlic mostly

greygoose profile image
greygoose in reply to Cherief

Garlic and spices are good. But they can't replace salt where the adrenals are concerned. You need good sea salt, or Pink Himalayan salt.

Cherief profile image
Cherief in reply to greygoose

Use that. Thanks.

arotella profile image
arotella in reply to greygoose

DULCE IS THE BEST SALT REPLACEMENT.

greygoose profile image
greygoose in reply to arotella

I'm not sure I know what you mean by dulce. According to google, dulce is a kind of seaweed, or a type of salt flakes with seaweed. It is not a salt replacement, and it is NOT great for people with thyroid conditions!

Seaweed contains iodine. People with thyroid conditions should not be taking extra iodine. And nobody should be taking salt replacement. People need real salt.

So, if I've got this wrong, and dulce is something else, please let me know. But, it doesn't sound great in any way.

arotella profile image
arotella in reply to greygoose

DULCE IS A GREAT SALT REPLACEMENT FOR PEOPLE WITH ANY TYPE OF THYROID CONDITION.

knackersyard profile image
knackersyard

Could be Haemochromatosis.

arotella profile image
arotella in reply to knackersyard

IF YOU DON'T MIND CAN YOU EXPLAIN WHAT HEMOCHROMATOSIS IS?

knackersyard profile image
knackersyard in reply to arotella

en.m.wikipedia.org/wiki/HFE...

humanbean profile image
humanbean

Has your GP told you that your ferritin is high? I would definitely want to know the reference range for your result before giving blood to lower it. The reference range for ferritin differs from lab to lab. I've seen the top of the range quoted as 150, 200, 300, 400. So, unless you know the top of the reference range you might be panicking for nothing.

Even if the top of the reference range is 150 and your result is over the top, 265 is not that high, although clearly it is NOT desirable for long term health.

Before coming to the conclusion you have a serious problem with ferritin you must have more testing done.

Some things to be aware of :

1) For accuracy all iron-related testing should be done first thing in the morning in a fasting state (except for water).

Read the bits on iron blood tests on this link :

nhs.uk/chq/Pages/1018.aspx?...

2) Have you been taking any multivitamins with iron in? Do you take any iron supplements? You should stop now if you do.

3) If you drink too much alcohol your ferritin will be higher than normal but I don't know what impact excess alcohol will have on other iron measures.

4) You can have certain kinds of anaemia which raise ferritin e.g. Anaemia of Chronic Disease

5) There are lots of other reasons for high ferritin. See the following links for more info.

Some links you should read :

patient.info/doctor/heredit...

irondisorders.org/hemochrom... (Look at the relevant links on the right hand side of the page)

irondisorders.org/classic-h...

High ferritin is (as far as I know) usually considered to be most serious if you have the condition due to a genetic fault, and in those circumstances you would be given regular therapeutic phlebotomy. But if the high ferritin is not as a result of genetics, then the doctor should explain to you what can be done to lower it, or what you need to do to lower it by changing other things.

For example, if you have high inflammation then it would be necessary to find out what was causing the inflammation and then deal with it before ferritin would drop naturally. If you had an unsuspected gluten intolerance causing inflammation then you might not lower your ferritin until you had been gluten free for a few months.

arotella profile image
arotella in reply to humanbean

THE REFERENCE GAUGE FOR IRON IS 150 FOR MALES AND 50-75 FOR FEMALES.

You may have haemochromatosis, which can be a serious illness, so see your GP with the results - the treatment is drawing blood, so you could try giving blood as a temp measure to get ferritin down. A lot of vegan protein is very bad as made from soy and is highly processed (rice protein is better than soy) - best avoided - and you need salt for your adrenals so you can deal with stress, and, if you aren't vegan, butter is a great source of vit A and D and healthy fats - much better than all those inflammatory Omega 6 oils. Kale (and other brassicas) in smoothies is bad for the thyroid - if you weren't ill, I'd say OK - but you are ill. Insufficient saturated fat (although the coconut oil will provide some MCTs) will reduce cholesterol, which you need to make hormones - hence low libido and other illnesses.

Cherief profile image
Cherief in reply to Angel_of_the_North

Maybe my lack of butter and salt is causing problems

Angel_of_the_North profile image
Angel_of_the_North in reply to Cherief

Salt possibly, fat possibly, lack of vit A and D possibly. Not butter per se, although it is a good fat, unlike most vegetable oils.

Cherief profile image
Cherief in reply to Angel_of_the_North

I dont think im ill. I feel pretty fine for 61,

loueldhen profile image
loueldhen

My ferritin was 177ug/L (13-150). I used it as an excuse to give blood again (after a long break from feeling I was too poorly). You have to be stable on your thyroid meds and clearly feel fit enough to give blood. Donated twice now over the last three months and I feel better. Don't know if feeling better is related of course and haven't had a recent ferritin test but take comfort from the fact that I pass the iron test they give you before they let you give blood.

Katepots profile image
Katepots

Sorry for late reply. NDT is natural Dessicated thyroid.

You say you're not on any thyroid meds? I'd ask for a printout of your latest blood results and post on here. GP will say normal when not!

Jackjkt profile image
Jackjkt

I have hemochromatosis (genetic) and hypothyroidism (diagnosed at 16). You must find a doctor who will work with you to diagnose and treat! You need to look out for yourself!

arotella profile image
arotella

THANK YOU SO MUCH VERY HELPFUL. GOD BLESS YOU.

arotella profile image
arotella

DO YOU KNOW OF A HOLISTIC APPROACH FOR LOWERING FERRITIN LEVELS? THANK YOU IN ADVANCE FOR A REPLY.

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