I've nagged her to follow up on her high ferritin results for the last year or so, though GP seemed disinterested with it above 700 so I sent her to give blood which bought it down to 400.
Since then we have successfully got her GP to acknowledge her Hypothyroidism and prescribe T4 and I got her to again enquire about her high ferritin, this time he listened and ran a genetic test which is positive and suggests testing first degree relatives...
Had a little read about it and apparently its something that can develop between the ages of 30 & 60
Anyone knowledgeable that can give me any pointers to make sure she gets the right treatment?
I've pulled this off the NHS site and wondered if you've been offered these tests or is it a case of nagging for them?
Further tests
If blood tests show that you have haemochromatosis, you may need to have some further tests to check if the condition has caused any organ damage, particularly damage to your liver.
These tests may include:
a liver ultrasound (Fibroscan) or MRI (liver multiscan)
an ECG or echo - to check your heart
rheumatology - check for joint diseases, such as arthropathy
endrocrinology - to check for diabetes or Addison’s disease
a DEXA scan - to check for osteoporosis
Liver damage is 1 of the main complications of haemochromatosis.
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Initially low antibodies when I first started her on T4 a year ago but I think they have been checked again and now higher, I need to pin her down and have a proper look at her results and history, she tends to just ping me snippets like todays result
Whilst that is concerning, it sometimes feels like we are approaching peak "links with dementia". Not that there aren't lots of links between many disorders and dementia, but it's important not to get taken over by concerns. Sometimes the statistics are very slight - or, in the fullness of time, non-existent.
Excess iron accumulation in the brain is a consistent observation in Alzheimer's Disease. Iron affects amyloid precursor protein (AbetaPP) processing and promotes deposition of Abeta
a significant percentage of AD patients can be expected to carry this mutation
Which appears to mean that a significant percentage of AD patients can be expected not to carry this mutation.
And, just having this mutation has a statistical effect but that does not mean it affects every individual. For example, it might need multiple factors - genetic and other - to result in AD.
(I don't think I have haemochromatosis genes but my ferritin, for example, is always high - though not 700 - more like 400. So if higher iron is a risk factor, then it could affect me as well.)
Hi helvella TiggerMe , like bo62 I'm a carrier of the hereditary haemochromatosis gene, but don't have the disease. My niece and brother both have the disease. My niece is fine and was diagnosed and treated early however my brother was diagnosed late. As a result he had damage to his liver. This caused levels of harmful substances to rise in his blood and caused brain inflammation (think it's called hepatic encephalopathy). As a result he now has cognitive problems, though not exactly Alzheimers. All this is very very preventable with early treatment (basically drawing off excess blood at regular intervals). So cognitive decline definitely isn't on the cards for people diagnosed and treated early. Hope your sister isn't too distressed by the diagnosis, from my family experience it is a serious condition but treatment is simplish and very effective.
Truth is I don't think my sister has a clue and doesn't look into these things as I now do so I shall be pushing for all the tests, sad coincidence is she is preoccupied with a friend who is in the final throws of liver failure 😔
I was diagnosed in 2016 and had a liver scan and then other organ scans which were all good. These tests need to be organised by a haematologist so get your sister to ask GP for a referral.
GP knew nothing about haemochomatosis and I had to provide info after my cousin and then sister were diagnosed some years ago. In females it typically presents during (peri)menopause when periods stop, whereas men are usually diagnosed much earlier.
Haemochromatosis sufferers are prioritised for blood giving appointments as their iron-rich blood is highly prized. If your sister is able to donate blood I would strongly suggest she follows this route as haemochromastosis isn’t well recognised or well catered for within the NHS. I used to donate blood (easy peasy in my local Coop carpark 😁) but since my TIA am not allowed (in spite of no blood clot or bleed 🙄) and I get pushed between the kidney dialysis unit and oncology for my venesection because there is no specific unit set up for haemochromatosis in my area.
Also since the covid era I have been pushed onto another hospital miles away that means I have to drive miles home after treatment. It also reviews labs slightly differently to how I was diagnosed which somewhat complicates matters, as the different genetics are poorly understood and seem to differ per hospital. Luckily my hemo speaks up for me.
Sorry your sister has this diagnosis. From what I remember your own iron/ferritin levels are low?
I'm pleased they finally listened and she might at least get some useful tests and monitoring (saves me nagging🙃 she cursed me last year when I sent her to give blood as it wiped her out)
I'm trying to rack my brains to remember my brothers results that I briefly saw last year, they weren't low but I can't remember how high 😬
I'm still taking heme a couple of times a week ferritin sits around 60 but full iron panel is good
I refer to it quite often because it has some info helpful to people with low iron, but I have always been under the impression it has much more info on "too much iron" than it does on "too little iron".
I was diagnosed in 2015 with Hereditary Hemochromatosis , im Homozygous C282Y, from what I gathered is being positive doesn’t mean you be actually “have it” another words, doesn’t mean you’re “active”, but with your sisters ferritin level being high and her testing positive for the genetic disorder then yes she’s definitely active! Bless her heart and it’s not a disorder that is well known about nor is it on doctors list of priorities, sad to say cause it is very important t pop know that a person has it and to monitor their blood levels. The labs are the
Iron Panel
Ferritin
These two will give you 4 blood levels that are very important to monitor with this disorder along with
CBC
Yes, phlebotomy is the treatment of choice!
There’s also something that you should be aware of, it’s called
Anemia of Chronic Disease
It’s treated differently than “Anemia”, google it! Also google the labs I listed. And yes, the siblings and any children should be tested and her parents as well, what (allele-gene-mutations)did she test positive for if I may ask? Thanks and any specific questions I’ll try to answer without confusion and hopefully haven’t already but maybe I can direct you to excellent online resources. Have a great day!
Kudos to you for being the loving nagging sister! I hope she gets all the help she deserves and needs! Very glad to hear she has an actual hematologist involved cause that’s not always the case…unfortunately and sad! It’s a simple genetic disorder to manage as long as you have a doctor monitoring and testing for any damage done to date which I pray for her she’s well!
'There’s also something that you should be aware of, it’s called Anemia of Chronic Disease'
Haemochromotosis is not called Anemia of Chronic Disease, which is a form of anaemia caused by chronic inflammation (and not necessarily a lack of iron).
The chronic inflammation caused by conditions such as RA, cancers, certain long term infections, even Hashi/Graves, etc, can disallow good function of iron’s underlying mechanisms, resulting in insufficient circulating red blood cells or haemoglobin (the part of red blood cells that carries oxygen).
The chronic inflammation resulting from long term iron overload can be a cause of Anemia of Chronic Disease, which is tricky to manage as the body is saturated with iron but deficient in iron it can successfully utilise. If you have Hashi/Graves I would suggest a gluten free diet and any thing else known to help reduce chronic inflammation so encouraging irons mechanisms to work better.
correct, it is not called that, I’m so sorry if I have led you to believe that I was saying that, what I was saying is when you have the labs drawn to monitor your hemochromatosis and your iron or ferritin is low it is called anemia of chronic disease and treatment different than anemia, I had a low iron during a hospitalization in 2009 but H&H was normal and my doctor was not aware I had this genetic disorder, so I was treated in the hospital with “iron” which is not the treatment when you have hemochromatosis, I thought I would confuse you and I’m sorry, please google, research the diagnosis of anemia of chronic disease with hemachromatosis, I would think the info would be the same as what our doctors have. I’m sure the hematologist is way knowledgeable on this unfortunately I not my primary care doctor at the time was not. Again I’m sorry for the confusion bebe
TiggerMe my youngest daughter was recently diagnosed with haemochromatosis and so my husband and I were told to get tested and also her brother and sister. We are all clear and her 3 children, all in their teens will also be tested. My daughter suffered a lot with joint pains and headaches. Since giving a pint of blood every 6 weeks she is feeling much better.
Interestingly enough I did have "high" ferritin results until the ranges were changed to accommodate post menopausal women. Prior to menopause and prior to my hypothyroid and Hashimotos diagnosis my ferritin/Iron levels were often low. I think a gluten free diet allowed my iron/ferritin levels to rise.
Hope your sister gets to see a heamatologist soon and that things improve for her.
TiggerMe not sure on the genetic test details but my daughter had inherited the problematic gene from both me and hubby, so I assume we are classed as carriers. It is also, so I inderstand more problematic in Celtic nations, OH is Scottish! Don't know where my gene came from!
I'd seen that about Celtic folk, which we've no connection... I was surprised it is so prevalent 1:200 North Europeans and yet it seems her GP had been ignoring high ferritin for years 🤷♀️
TiggerMe, ignoring blood results, I firmly believe that some docs outsource it to their receptionists. I am staggered how many do not seem to "see" when a result is out of range. Strangely enough they can always SEE when TSH is below range but they don't seem to see when T4 and T3 are too low in range!! But the biggest issue is not listening to patients when they talk about their symptoms, as we all know bloods don't tell the full story. TUK symptom checklist is so useful and I check it out about once per year.
It seems high ferritin doesn't raise a flag to check that it isn't a one off so is just dismissed 🤷♀️ but like you say no such blind eye with TSH so the triggers must be in the system... it just seems that the whole system is unreliable and so many people unquestioningly take 'normal' or 'satisfactory' as just that when it really isn't either 😟
Hi, I’m sorry to hear about your sister. I have had rapidly increasing ferritin for several years & nobody cared. I can’t donate blood as I had a blood transfusion after a C section giving birth to my son in 1988. Mad cow disease means I’m banned as I might be carrying the disease. I tried very hard to find somebody to take my blood privately with no luck at all. Extraordinary.
Anyway I recently found I have developed cateracts which is another high iron consequence. I also was sent to A & E for emergency retinopathy checks by local optician. Another likely iron problem as I’m not diabetic., yet.
I kept researching and discovered that there is a diet which lowers ferritin. I’ve been following it with great success. It’s called the LIFE diet. I’ll find the reasearch paper for you.
I think the NHS approach to high ferritin is the same as it’s approach to TSH ie it has to be over 10 to be diagnosed whereas we know damage is being caused & symtoms increase when it’s above the normal range. They insist on over 1000 for iron.
My ferritin level was dismissed as “just a sign of inflammation” when it got over 400 yet the article I found said damage is defiantly caused at that level. Particularly to the eyes & pancreas causing retinopathy & diabetes. NHS shortsightedness again.
Bertwills, so very sorry to hear about how your high ferritin was mis managed. The common sense approach (there's a thing) would have been to take your blood and throw it away!!
I shall mention the LIFE diet to my daughter, thank you.
Oh my! Like you say another short-sighted NHS strategy, my sister used to be a regular blood donator so hopefully this will be the easier route...
Looking at the Life Diet she is already ticking many of the boxes and I did check she isn't taking Vit C or anything with iron (though she does have a habit of buying the latest trendy supplement 🙄) which has possibly stopped it rising above 1000?
Very interesting. My ferritin has been high but slowly lowering since started thyroid medication. Coincidence? However at my diabetes eye check (apparently now don’t have diabetes) eyes are showing slight retinopathy. You could not make it up could you. Seems like it’s got to be a great big red flag before a GP notices anything. My list is LARGE.
I think eyes are very sensitive to many things. I’m appalled to think that my ferritin could have been building up despite me asking for help to reduce it. I used to go very regularly for eye tests but 2020 & covid put me off. I thought I just needed new lenses. Awful shock to find cateracts, retinopathy & now glaucoma. Pretty sure it’s iron.
Honestly I am at the point of wondering what ‘over worked’ GPs are actually doing. I think they must be spending a lot of time on paperwork generated by a system that just does not trust them . A system allegedly designed to make things easier and better for the patient. Do you think they know it’s not working and why?
I think the essential problem is the “pathways” & “guidelines” they have to follow. They have no freedom to act independently . Recently I had an appointment with a locum. He was older & retired, so much better, listened well & was absolutely shocked by my tales of woe. Prescribed what I asked for & ordered a blood test. Brilliant. Such a contrast to the younger ones.
Here’s a photo of the research article. It’s not a bad diet to follow. I don’t add the linseed to the recommended smoothie as I already eat linseed bread.
Vitamin C tablets aren’t allowed & I’d been taking slow release ones as recommended by Sarah Myhill. I’m glad I didn’t ever take her preferred enormous dose.
Using just the diet for 2 months my ferritin level has gone down from 401 to 266 .Top of the range is 150.
Here’s a photo of my Medichecks ferritin results tracker. You can see the rapid fall at the end of the graph. That was after eating the LIFE diet for just 1 month. I’m so pleased I found it. Hopefully I can stop any more damage accruing but my eyes are still causing concern. Possible glaucoma too now. They were fine in 2019. Just shows it’s not a good idea to miss regular eye checks.
Honestly we just all need to become our own health experts don't we to find what is best for us rather than having any reliance on the NHS... save them for A & E
Even private medicine isn’t all that much better unfortunately. Spending £400 plus for a “consultation” with Dr Sarah Myhill was a total waste of time & money. She knew I had high ferritin results but still advised ma
Doing our own research, where possible is definitely the best. Convincing a medic to do something with the results of our reasearch is the biggest problem now.
When I tried to discuss my Medichecks tests with a GP he said, “if you go looking you’ll always find something “!
He refused to do anything about lots of out of range results.
When I asked if I could return to having NHS T4 prescribed he said that I’d need to spend a month without any medication to see what the results were. Unsurprisingly I refused,
I’d been on NHS T4 for 20 years before going private for 5 years to get T3. I have to buy my own T4 now.
It is all so twisted isn't it! The fact you are punished for trying other options.... Sister has just been through the cold turkey phase to finally get them to acknowledge her hypo (I'd been treating her for over a year when they previously refused her) She was intrigued to see if she really needed T4.... she got her answer and is now slowly getting them to provide the correct dose!
Far more knowledge here to draw upon and self treat
I just add T4 on to my order from Roseways as I take T3 too. It costs so little I can’t be bothered to fight the GP. I’d probably face a TSH battle too. I certainly didn’t want to take no hormone for a month!
Hello Tigger, it is essential your sister gets her iron levels down to circa. 50 a soon as possible. Her GP should be sending a blood sample off for a genome test to confirm your sister does have haematomachrosis and the type of gene mutation (I.e. C282Y mutation). GP referral to a specialist HAEMATOLOGY CENTRE so the condition can be monitored and managed. ENDOCRINOLOGIST should be managing the HYPOTHYROIDISM - GPs know little to nothing on managing this condition although prescribing T4 is a good 1st step.
For Haemotomachrosis typically will need a pint of blood every couple of weeks until ferritin level gets to 50.
Specialist will initiate Liver test to confirm no damage from storage of iron. Fibroscan or just a liver function test, plus anything else like ECG, etc.
Need also to think about diet. Foods with high iron levels such as red meat & iron vitamin supplements including those in cereals will be a no no. A good site to follow and find out more is :-
Really helpful thank you, good to know where we are aiming to get her ferritin down to.... so far this is where we are... not sure why they say 're-refer'?
My partner attends a specialist NHS clinic at the hospital to check progress. He hasn't needed to have blood taken, but they keep a close watch on his levels. Might be worth checking if such a clinic exists in your area to get her referred.
Haemochromatosis is the most common genetic disease in UK, Ireland, Canada, Australia and probably New Zealand. You would think that they would be on the ball about it but apparently not. It was my Irish endocrinologist who asked me about it because my hemoglobin is usually up at 160. I got DNA testing done privately.
I did a lot of reading up and discovered that eating beans makes it worse because unlike normies, we absorb iron from everything and there is actually more iron in beans than in red meat.
Drinking one 32-ounce LIFE smoothie every day. The LIFE smoothie consists of 8 ounces (by weight) of DGLVs, 2.25 cups of blueberries (preferably frozen), 1 banana, 1 tablespoon of unsweetened cocoa powder, 1 tablespoon of ground flaxseed, 0.5 cup of soy milk (plain or vanilla) or unsweetened vanilla almond milk, and 0.5 cup of water blended together with a high-intensity blender (1200 peak watt power). DMD counseled each patient on how to properly measure and blend the ingredients.
Consumption of at least 5 ounces by weight of DGLVs in salad or cooked vegetables per day. Examples of DGLVs include spinach, kale, collard greens, bok choy, broccoli, cauliflower, cabbage, Brussels sprouts, arugula, Swiss chard, endive, asparagus, mustard greens, beet greens, mache, broccolini, broccoli rabe, radish, watercress, escarole, romaine, and green leaf lettuce. Other nonstarchy vegetables, such as onions, mushrooms, garlic, green and yellow zucchini, eggplants, peppers, or tomatoes are also recommended.
Consumption of fruit is unlimited. Berries are encouraged.
Daily consumption of at least 0.5 cup of beans or legumes or 3 ounces of bean pasta is required.
Consumption of whole grains and starchy vegetables (e.g., potatoes, winter squashes, peas, and corn) is limited to no more than 2 servings total per day. Also, patients could not eat more than 1 medium cooked or uncooked sweet potato or 4 cooked carrots per week during the study period because these foods contain B-carotene and could confound the use of serum B-carotene concentrations as an indicator of DGLV consumption.
No more than 1 serving or 4 ounces of refined grains can be consumed over 7 d.
No more than 24 g added sugar/d, which is in accordance with the American Heart Association and the WHO's guidelines, can be consumed.
No more than 2 ounces/d of raw seeds and nuts can be consumed.
No more than 6 ounces of fish, eggs, or dairy products can be consumed per day.
No more than 1 tablespoon of oil can be consumed per day.
Red meat, pork, cold cuts, bacon, butter, and cheese are not allowed.
No more than 2 medium-sized dates can be consumed per day as they have a high sugar to micronutrient ratio.
Patients with low vitamin B-12 (<550 pg/mL according to European standards) or high methylmalonic acid concentrations are instructed to take 500 to 1000 μg vitamin B-12 daily.
Hi there, I was diagnosed with Genetic Haemotomochrosis in May 2021 , I had been feeling very unwell for at least 18months before that. I had terrible fatigue, Stomach pains etc, it was after seeing many different GP's that a locus actually said I'm going to get you checked for GH. and it came back positive. I was eventually sent for a liver scan and `I also had Non Alcoholic Fatty Liver Disease , I had a phone appointment with Consultant Haematologist and She said I had to have Venesection every month until they got my Ferritin levels down, ive now got it lower and have to go every 3 months to hospital for Venesection . Ive also been Diagnosed with Diabetes 2 . Ive had Under active Thyroid for approx 20 years, also Fibromyalgia , Sleep Apnoea, Ive had a lot of Stomach issues, and it really affects what I can eat. I was told Avoid Vitamin B12, Vitamin C as these can make Iron issues worse. I suffer a lot of Arthritis and Degenerative Disc Disease .
The hospital Consultant has never seen me in Person, only spoke to her once on phone, next was a Registrar on phone and I'm due another phone call on 5th June !!
None of the Doctors tie together any of these Ailment, Under Active Thyroid etc, I'm on 75mg of Levothyroxine and that was after years of pushing for it , I had been on 25mg for at least 18 years, !! I am Scottish and I found out myself that it's more typical in Celtic people. Ive joined Haemotomochrosis Uk and they have an App called MY IRON
try on there for more advice for your sister, its certainly not a well known Illness that doctors make us aware of . They should have posters in the GP Surgeries informing people.
Sorry to hear you have been so badly cared for over the years... but it comes as no surprise any more 😕 what level was your ferritin when they finally diagnosed? Did your liver results show the issue of fatty liver or was it only when scanned that it showed up and does this reverse as levels drop or do they link it more to your under treated Hypo?
Thanks, I can't remember my levels but I'm sure it was in the hundreds, ? I had Venesection last November , then I was due for Venesection again in February but was unwell, so I went again in March and was told I DIDNT NEED IT AS MY LEVEL WAS 52
I had Venesections on Monday ( 29th April ) I was hoping I didn't need it as I hate needles lol , but I was told I needed it as level was 57 . There doesn't seem to be very good communication from Hospital for Patients, The Nurses don't give you any Information , they just seem to be there to take the Blood, and just say you will need to speak to consultant , but that's only on phone , never in person and not on a regular basis. I was only told of Non Alcoholic Fatty Liver after Scan, to be honest all of this has been a real shock, as I had no idea of this Illness, and didn't realise the Implications regarding my Liver etc, Its been a case of learning as I go , they don't even have any information at hospital about Haemotomochrosis !! And GP's say theirs no connection to Thyroid, so you are really up against it !! I really do suffer a lot with Bowels and food intolerances now , I can barely tolerate so many foods now
but I can't get anywhere with any of the Doctors.
You're the first person ive seen on here talking about this and its been very informative seeing other people come forward with their experiences .
Im going to have to do more Research into this as I'm just being pushed aside to suffer alone. ~Im glad I saw your post . your Sister is lucky to have you in her corner .x
I have lots of food intolerances since becoming hypo, I can't tolerate dairy, nightshades or barley and every so often I get a histamine release that really knocks me for six so I avoid high histamine foods like avocados, beans and anything aged even left overs ☹️
I've cut out all these things and my gut health has improved, I take a shot of cider vinegar in the mornings if I can stomach it and I've added in TUDCA which increases bile production and that has been a great help for gut and liver, the fatty liver issue is a hypo thing too but I seem to have improved things there by adding L-glutamine to help with detoxing 🤗
This forum is brilliant as you can go from completely clueless to well informed within days 😅
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I think my daughter may have a thyroid problem, she has finally had an initial blood test which showed raised prolactin and a TSH of 2.5
Please pray for my little sister Jenny
Has anyone received treatment with a TSH just inside range, but positive TPOab?
Results back, advice appreciated please
