Hi there, I am extremely worried. My serum ferritin levels are very high and going up very fast. On 19th October they were 700 and then, when I last had blood tests done, on 4th December, they were 900.
The ferritin had been creeping up over the last two years, but it has suddenly in the last four months gone from 400 to 900. I am most worried about the sudden increase in the last few weeks.
When my GP saw my ferritin was rising he said that I should lose a bit of weight. My BMI was high at 30 because I put on 14 pounds during lockdown. I have been on a very low calorie diet since the end of September and I have now lost 30 pounds in 10 weeks. My GP told me that my ferritin levels should be going down because I have lost so much weight. I am now just 7 pounds outside my BMI range. He had originally said that I probably have a fatty liver and that is what is causing the high ferritin. Now I don't know what to think.
Stupidly I googled "high ferritin" and the results are alarming. Cancer, autoimmune liver disease, haemocromatosis are just some of the scary possibilities. I know that one shouldn't google such things but it is hard not to do so.
My questions are several. Could the low calorie diet and the process of weight loss actually be causing this sudden spike in my ferritin level? If yes, is it dangerous? Or will it just go back to normal once I have stopped dieting. I was aiming to get down to 10 stone which is comfortably within my BMI range. I have 16 pounds to go. Is it safe to continue dieting? Another question, I take iron tablets on prescription. Should I stop taking those for the moment?
I see that high ferritin can be caused by a high thyroid test. I have Hashimoto's and I take both levothyroxine and liothyronine. Both are comfortably in the normal range. My TSH is slightly suppressed but it always has to be to keep me in the normal range for T4 and T3. So I don't think that the high ferritin is due to taking too high a dose of thyroid hormones.
Any help very gratefully received.
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MrsMcGoogle
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He had originally said that I probably have a fatty liver and that is what is causing the high ferritin.
Has your doctor actually given you a liver function test?
Has your doctor given you an iron panel?
Has your doctor done a Full Blood Count?
Edit : I've deleted the links I gave about haemochromatosis and iron overload. Your problem is most likely to be caused by you taking iron supplements, which I didn't notice when I first read your post.
At the moment your doctor sounds like he is fear-mongering and gaslighting you. Has he actually done anything useful apart from blaming you?
He did all the tests and they are all normal. I can see them myself on the Patient Access system. The only one that is out of range is this very high ferritin level.
When you see your doctor tomorrow ask the receptionists (not the doctor) for a copy of your blood test results from the last year or two, making sure the reference ranges are included.
When a doctor says a test result is normal they just mean it is in range.
Imagine three patients A, B, and C all have a ferritin test. The reference range is 13 - 150.
A : Result = 13 mcg/L
B : Result = 82 mcg/L (i.e. mid-range)
C : Result = 150 mcg/L
The patient who is likely to feel best is patient B with the mid-range result. The patient who will feel worst is patient A with the bottom of range result. Patient C with the top of range result is likely to feel worse than B but better than A. But a doctor would say all the results were "normal".
There is an optimal level for quite a few test results that thyroid patients are likely to get done, in some cases worked out from patient experience, but doctors either don't know this or don't believe it or don't care. They stick with "in range = normal" for everything.
Oh right. I had not thought of any of that. I'll go online and look at my other results now. If you click on a particular result it comes up with the results for that test going back for several years and a graph. Patient Access is excellent.
You might have to give some blood to lower your levels. I also have high Ferritin which is caused by inflammation in my case. Mine isn't as high as yours and is about 300 but my GP did say if it got over 800 I might need further investigations and I would have to donate some blood to bring it down. I just noticed you are taking iron tablets so that could also be causing yours to be too high so I would stop taking them if I was you and see if your levels go down. Just to add I have had a liver function test and my liver is ok.
Yes I too have had a liver test that showed all the enzymes were okay. I will hold off on my iron tablet tonight and I will ask my GP tomorrow about lowering the level by giving blood.
I think your high ferritin is so high that you might need to get blood taken to reduce your ferritin. Iron is poisonous in overdose and the body can't get rid of it easily. This is referred to as "therapeutic phlebotomy". Apart from knowing what it is called, I don't know anything about it.
Your doctor should have stopped your iron supplements as soon as he realised your ferritin was over the range. But no - he wanted to blame you and your weight instead. You have strong grounds for an official complaint, in my opinion.
Good heavens... i know next to nothing about Iron and ferritin , so when i noticed the iron supplements that MrsMcGoogle was taking from the doctor, i thought " that seems odd, i thought they would raise ferritin, but obviously i know nothing"
Stupidly I googled "high ferritin" and the results are alarming.
I rather disagree with the word "Stupidly".
I know some people find it difficult and upsetting to read some of the information they find. I suggest that for many it is a good thing to have gone looking things up. Yes, you might be shocked and alarmed.
Far worse to be shocked and alarmed a further year or two down the line. Especially if there was something you could have done to avoid the consequences - whatever they might be. For example, right now, it seems utterly beyond belief that your doctor has not advised you to stop taking iron tablets. You have posted here, people have replied. You have the choice of stopping the iron tablets. Talking to your doctor about why they have have not already been stopped. Or whatever else makes sense. If you did not even now know it is a potentially serious issue, you might just ignore it.
I am taking ferrous sulphate 200mg tablets x2 at night.I have a telephone appointment with my GP tomorrow evening to discuss these latest test results. A friend of mine was so alarmed when she googled "high ferritin" that she made me call 111 today to ask if I should be admitted. I ended up speaking to a doctor who had access to my medical record. She said that as my liver function tests are all normal she wasn't overly worried about the ferritin. Meaning I am not suffering from liver failure and don't need an emergency admission. She did say that I need to be referred by my GP to haematology or to see a liver specialist. I am still wondering if my results are because I am on a very low calorie diet and losing 3lbs a week. Any idea?
I think your doctor should have been monitoring your Iron and Ferritin levels and you are not to blame at all. A lot of people blindly take what their doctor prescribes without question but in your case your doctor is at fault.
I really don't know much about dieting and ferritin.
But, earlier, I looked at some information around the web. I found suggestions that there are links between ferritin and weight. But of the papers I skimmed, they were speaking of things like a difference between (at most) 25 and 100. Nothing like 900!
Your friend was entirely reasonable. (Many would appreciate such friends who support them in their hour of need.) The doctor you spoke to appears to have taken it seriously and looked appropriately - for an emergency check.
Iron is nothing like as simple as we wish it was. But I cannot get my head to accept that you should be supplementing iron at all.
MrsMcGoogle - it is definitely not your fault or the fault of your weight. Your doctor out to have been finding out what was causing your very high ferritin. He also ought to have realised that you are taking iron that he had prescribed iron for you and realised that he should have stopped it. Even if he hadn’t prescribed it he should still have asked you if you were taking it yourself or if you were eating a lot of iron rich foods. Don’t blame yourself. Hopefully you will get sorted out soon.
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