Good Afternoon - I am wondering if I might ask for some help with regard to my Raised Ferriton Levels please -
I was taken ill in August 2021 with severe Fatigue and Lethargy - and since then have had numerous tests and procedures which have all come back negative - in May 2022 I was diagnosed with Hypothyroidism and started on 50mcg of Levothyroxine - this has further gradually increased to 100mcg which I am still on.
From August 2021 to date, the only consistent findings were my Raised Ferritin Levels - which have been from 700 - down to 564 - but is now again at 715 ug/L from a Medichecks BT on 10/1/23 -
FERRITIN: 715 ug/L (13 - 150)
CRP HS: 0.34 mg/L (0 - 5)
Although my Thyroid now appears to be under control and a good level - I am still suffering a number of dibilitating symptoms as well as Fatigue and Lethargy and including - V weak legs /body/joint pains - , Palpitations ,Brain fog and a Fizzy Head -
In April 2022 It was thought that I might have Haeomachromatosis and I was given a gene blood test to check this out - however this came back as negative.
So as yet although my thyroid is now under control - there has been no real explanation as to the cause of my raised ferritin levels or my ongoing symptoms causing me to feel so unwell.
Prior to August 21 - I was a very active 78 year old with many classes and projects and a very busy social diary - but since then I have been finding it really hard, and struggled just to get through the day - so am desperate to get back to feeling well and enjoying life again.
I have had a great deal of help and support from Thyroid UK Healthunlocked and they have suggested that I contact you in the hope that you might have some suggestions please.
Any help will be much appreciated
Many thanks
Lemondrizz
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Lemondrizz1
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hi when you say your h gene test came back negative so you have the results i have homozygous H63D which shouldn’t lead to hh but i have it and have been having weekly venesections to get me to maintance .
there are quite a few of us with it with this mutation which shouldn’t over load
Have you had your transferrin saturation checked if this is also high it is another sign of hh
An mri scan would also confirm , i am now back full of energy and need to maintain at below 100 ferritin
I do not have the gene test result as it came to my Gastroenterologist and I have not seen the copy of this - should I request this do you think ? I was just told that it had come back as negative ? I did ask if there were any other tests that could be done to check this out as I continue to have raised ferritin levels and on my last BT it was 715 -
Would I expect to suffer debilitating symptoms with raised ferritin please.
Yes I have had my Iron Studies test done on several occasions - with the last one being done on 20/10/22 with the following results.
Serum iron level (X76tH) Above Range - 27.7 umol/L (11.0 - 25.0) Abov high reference limit
Serum TIBC (XE2mF) 47 umol/L 45.0 - 72.0
Serum unsaturated iron binding capacity (XabAY) 19 umol/L
TRANSFERRIN SATURATION Above range 59% (15.0 - 45.0) Above high reference limit
Hereditary Haemochromatosis is often caused by the HFE gene having common mutations C282Y and/or H63D, but there are numerous others and even more still yet undiscovered. Therefore, you don’t have to test genetically positive to have haemochromotosis or iron overload.
Your results of over-range ferritin, serum iron and T/S% show without doubt you are suffering iron overload. The body has no way of eliminating excess iron and so the only treatment to reduce toxic levels is venesection.
Ask for a referral to a hemo asap as iron levels are likely to just keep building.
Thank you so much Radd for your reply - and for all the information.
I have asked to be referred to a Haemotologist with a view to having venisection as no one is able to explain the reasons for my raised ferritin - and the many debilitating symptoms, including weight loss - (initially two and a half stone) - that I have been experiencing over the past 18 months - I have now been 46kg snce February 22 - and have been prescribed Fortijuice since then in order to help me try to maintain my weight.
I have a good diet and appetite but cannot seem to gain any weight.
I was told by my GP that he did not think they would consider venesection unless my Ferritin levels were over 1000 and they are currently 715 - however I do wonder if this is weight related as being so lightweight - maybe 715 might be equal to 1000 if I was heavier.
Maybe I should ask for a private consultation - but is there something that I could quote to help my case please -
GP’s aren’t familiar with the intricacies of iron overload and a genetic diagnosis certainly appears to make it simpler to access treatment.
It doesn’t matter whether you have a common mutant inheritance or a rare iron loading genotype, if you have significant iron overload it needs reducing. GP is likely reading guidelines stipulating patients with ferritin levels over 1000 should be offed fibrosis assessment to exclude the presence of cirrhosis, as it is now known that certain genetic impairments might not necessarily result in raised liver enzymes.
But purposely allowing ferritin levels to exceed 1000 lg/l would result in a very intensive venesection schedule to bring it back down. Most iron-overload patients have a maintenance goal of ferritin <50 lg/l and Tsat <50%. You could ask GP to seek further info. Several years ago I had to give mine haemochromatosis information as he hadn’t heard of it before! It’s not as rare as it’s made out to be, just not commonly tested for. Has GP given you a FBC & LFT?
Radd - Thank you again for all of this - and for your prompt reply - I could not help noticing the time that you sent the email - ?
Enclosed now my FBC and LFT done in October 22 FYI.
It does feel as if I am going round in ever decreasing circles and feeling increasing ill. I suspect it would be a long wait to see a Haematologist so will request a private appointment - I spect like you I have had to do most of the investigations and research myself as have been fobbed off along the way by GP's nd Consultants looking for causes of inflamation ?? I even asked my Rheumatologist last January if I could be a canditate for venesection and he said he did not think it would help - the levels would decrease gradually on their own - which they did until May 22 - down to 595 and have now started rising again.
I am so grateful for your help - as it is a long journey - trying to fight my way through the mire of it all and trying to be taken seriously.
Your test results look good but if ferritin levels are fluctuating it indicates some inflammation is present and of course paradoxically toxic over loaded iron can cause inflammation in itself. But because serum iron is also over range if this were me I would want further investigations done. Have you had CPR & ESR tested?
I woke in the night so naughtily spent half hour on my phone and then fell asleep again (thank goodness) 😁.
Good Morning Radd - thank you so much for all your help -
Sorry to hear that you have had a stroke and hope that you are making good progress.
As I am 78 - I do not think that I would be able to donate blood -
I have since writtin to my GP requesting a referral to a Haematologist asap and understand that this has now been actioned and I am hopeful to hear more very soon.
I had previously asked my GP if this could happen with a view to starting venesection - but he did not think my levels would be high enough ?? I did read however, that to receive venesection you would have to be at least seven and a half stone.
I had lost almost two and a half stone from February 21 to September 21 and although having gained some weight - I am still only 7.24stone, the same weight as I was in February 22 - so wonder if venesection would be able to be considered.
I think that weight loss is also a symptom of Raised Ferritin ?
I'm not aware of iron overload causing weight loss any more than weight gain. I think it is very individual. I didn't lose or gain weight but my ferritin didn't go that high. My venesection treatment came about because of genetics, high Serum iron and T/S of 99%.
It is possible to have anaemia with iron overload, and to receive venesection you will need healthy RBC's and sufficient haemoglobin. If you are underweight and unwell in other aspects the risks of venesection will be considered against the risk of overloaded iron damaging your organs.
I have recovered hugely from my stroke thank you. It was more a TIA except I suffered lasting visual impairments and a little hearing loss both on one side so technically a stroke.
You need further investigation and at the very least you need an “iron panel” that will show what your TSAT is, and will give a better indication of whether there is iron overload, or not. Raised ferritin is not specific to haemochromatosis. It can be a sign of liver damage or inflammation, so you need some tests to check the health of your liver function. Lastly, I know this is unlikely but are you taking any supplements that contain iron or are made from animal-sourced organs? These organ supplements seem to be very popular at the moment, and are usually dessicated and/or in powder form. I agree that a ferritin of 700+ is rather high and warrants further testing, particularly your TSAT levels.
As my Ferritin Levels have been raised since August 2021 - I have had many BT and procedures to try to find the cause including Liver function tests and Renal Profile - the lastof these for both L & R were done 2/10/22 all tests have come back negative with no further indication as to why the raised ferritin.
I also had an Iron Studies done on 20/10/22 with the following results.
Serum iron level (X76tH) Above Range - 27.7 umol/L (11.0 - 25.0) Abov high reference limit
Serum TIBC (XE2mF) 47 umol/L 45.0 - 72.0
Serum unsaturated iron binding capacity (XabAY) 19 umol/L
TRANSFERRIN SATURATION Above range 59% (15.0 - 45.0) Above high reference limit
It does appear that there is possible iron overload going on, in which case I think you need to persist in seeking an opinion. Have you been seen by a haematologist yet? If not, I think you should. Your TSAT isn’t massively high but it is a parameter which can fluctuate a bit, so a repeat test might show a higher (or lower) result. Even so, 59% is still above range. High ferritin and raised TSAT are a sign that you may be overloading. You describe the genetic test results as ‘negative’ but did you actually see a print out of this result which details the findings? For example, I am homozygous for the C282Y mutation, which means I have inherited two copies of this particular mutation. Someone who is heterozygous for this mutation has one copy plus one normal copy. Some people with just one copy seem to overload, although usually most don’t. But it does happen, so it’s worth checking exactly what your result was.
If there is no obvious reason, I’d still suggest that a haematologist is the best person to see. They can decide whether you should start venesection treatment, or whether further investigations are necessary.
Personally. I don’t think it’s likely that diet alone is enough to push someone who does not have haemochromatosis into iron overload as people who have normal iron metabolism can regulate their body’s absorption of iron to protect against overload. Until you know what’s causing this, I’d still be careful around any supplements including superfood powders, alagae powders, or anything fortified with iron. I’d also go easy on vitamin C supplements if you take them as these increase iron absorption. Personally I avoid red meat, but this is my choice. I was advised to avoid organ meats altogether by my haematologist, which wasn’t an issue at all for me but for some reason organ meats are a bit of a trend — and very high in iron. The point is, if you are already overloading iron you don’t want to put more into your system. If you’re not having venesections there’s no other way of getting it out of your body. I really think you ought to pursue what’s going on with your raised ferritin, TSAT etc.
Thank You Autumn Leaves for your reply - and information contained.
I have since writtin to my GP requesting a referral to a Haematologist asap and understand that this has now been actioned and I am hopeful to hear more very soon.
I had previously asked my GP if this could happen with a view to starting venesection - but he did not think my levels would be high enough ?? I did read however, that to receive venesection you would have to be at least seven and a half stone.
I lost almost two and a half stone from February 21 to September 21 and although having gained some weight - am still only 7.24stone, the same weight as I was in February 22 - so wonder if venesection would be able to be considered.
That’s very good news. I think the haematologist is probably the best person to decide on whether venesection treatment is appropriate. I’ve never heard of there being a minimum weight requirement but I don’t have that expertise. I’m just a patient. FWIW I was hovering just above the cutoff point of underweight BMI for several years and it was never an issue. It obviously depends on the overall health of the individual. Some people are just very slight in build but are otherwise in good health whereas others might have lost a lot of weight because of serious illness. It’s always a risk-benefit decision, whatever the treatment.
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Diagnosed as Compound Haemochromatosis