Transferrin Saturation High

Hi, thanks for your reply, I thought having symptoms for 2 years was bad enough, 26 is a long long time.  I am not able to take HRT as I developed a DVT whilst on it.  I feel a bit sad that they did not take notice when it was first shown as being high in March 2016 then maybe I would not feel so awful now, but compared to some I am lucky so not complaining.  I started menopause 10 years ago so hoped to be through it by now but I expect lack of hormones will always play a part in how we feel.  I have booked myself into the blood bank next week to have some blood taken, not sure whether I should do this without GP's say so, but so fed up feeling tired, achy and generally run down.  Feel like I have a cold which never comes out properly.  Trouble with so many things the symptoms are so alike you never really know what it causing what, but going in the right direction now hopefully so going to stay positive.  Take care

You don't need a dr's permission to donate blood.  Do not mention the words, HH, high iron, high ferritin, etc.  You are just there to donate blood like many others who do so to help out with the need for more blood to help others.

The blood bank will decide if your health is ok to donate blood, ie. no heart issues, no medication that they don't like, etc. 

 

Hi, when I booked for blood clinic answered all the questions and found I am eligible to donate.  NOT so according to google as I take a blood thinner.  I was looking forward (sort of) to giving blood to start being proactive with my health.  Why oh why, do they not ask the blood thinner question on the blood site I could have gone miles into town and wasted my time.  I am not sure now what they will have to do to reduce it.  Hope you don't mind me asking but as you have many years experience with this and are used to seeing various numbers do mine in your opinion seem that bad.

?Serum iron level  27.2 umol/L

Transferrin  2.07 g/L

?Transferring saturation 58%

?Serum ferritin 2224.4 that was March 2018, in March 2016 when first discovered it was 301.08,

According to google and forums etc. iron doesn't reduce without treatment but mine has?

?Also I did my transferrin saturation test without doing a fasting test which a couple of websites say I should have done and will make a difference.

?My only saviour at present is my liver is healthy, do have a tiny bit of fatty liver but was told that everyone of my age 58 will have this to some degree. 

?I want to be armed with as much information as I can now that my new GP actually wants to do something and feel so fed up that it could have been sorted 2 years ago.  Thanks

Sorry not 2224.4 but 224.4 which is lower that 301.08

Nearly had a heart attack when I read 2224.4 ferritin.  Thank goodness it was a typo.

No, your ferritin is not high at all.  Despite your positive genetic test, you may not be loading iron at all.  Your high TS% is an indicator for HH, but some people with HH (even C282Y homozygous) do not load iron.  But something later might trigger it, so best to keep being monitored.

I have venesections and I take aspirin to thin my blood.  It does not cause me any problems.  Your blood might run a bit more after withdrawal of the needle - normal pressure fixes that.  However, people are different.

If they did not ask if you are on blood thinner maybe it is not important to them.  If they accept you, go.  It is worth the bother.  It may make you feel better as our ferritin does increase with age anyway and donating blood causes us to make new blood faster while you have got rid of some old blood, but otherwise you might have to search for other reasons for your symptoms.  And insufficient oestrogen plays a big part.

I am never requested to fast for my Iron Studies.  I expect it is important to be consistent.  Do it same way each time.

Also you could ask to be investigated for some subtle loss of blood - colonoscopy?

Also it is important to have good Vit B12 and Vit D levels.  Insufficient Vit D can cause the symptoms you have.  A practitioners brand of Vit D3 drops are most effective.  I wasted my money on tablets for years and still had low Vit D.  After years of neurological symptoms (depression), weakness, fatigue, etc, my husbnd's dr put him on to Vit B12 injections.  Made a huge difference to his wellbeing.  He was unable to absorb B12 from tablets.  Recently I had a B12 injection before travelling overseas and even though my B12 level is normal naturally, I believe it really helped me over the bumps.  So I will continue to have them

Also, I read that it can improve blood volume which has been useful for me for venesections when the phlebotomists had difficulties getting a good vein.

Research I have read (from top researchers in Rennes, France) says that CoQ10 and Vit E is good for those with long term high TS%.  Avoid sugars and starches to improve your fatty liver situation.

 

When you donate blood do not mention HH, high ferritin, high iron, nothing.  You are just there to donate blood out of the kindness of your own heart (it is also kind to your heart).  You are just one of the many people who donate blood every three months whether you have high iron or not.  You heard the need for more blood donations and there you are to help out.

 

Hi, have replied to Sheryl above to say that I now cannot give blood as on a blood thinner, this question was not asked anywhere on their site.  What are your numbers?  My old GP noticed this 2 years ago and called to say they were high, was being tested for anaemia as tired, symptoms same for high and low I think.  I asked to be retested a couple of times and was again called to say it was high but nothing was done about it.  My new GP sent me for the saturation test which has come back high.  I don't understand if GP's are all trained the same way why some think high iron is safe when it clearly isn't in the long run.  Take care

Hi, I am being referred which is good.  I know GP can't know everything but if the blood test comes back with a big red star against it and is way off the scale why do they still insist it is ok.  I was first told mine was high March 2016 and all they kept saying was all ok, it was only my new GP that says its not ok.  Can't help wonder what damage has been done in the last 2 years that could have been avoided.  I did look at buying the book but to be honest knowing that I cannot do anything about it as cannot have blood lets freaks me, so don't want to read a book that the first line on the cover reads Cancer.  Trust me I am not a miserable person just feeling a bit let down and hope that I can get myself sorted somehow once I have seen the haematologist. I think I may have caused this myself somehow as I took a lot of iron supplements when first went 2 years about feeling tired and achy as GP said could be low in iron, as I had been before, which is how they found out I was high.

I have read 'Iron Elephant' which makes interesting reading about a family's fight to get a diagnosis.  However, it was too late for the husband.  He suffered terribly from very high ferritin long term which caused his cancer of the liver.  But it is old information now.  Science has moved on and thankfully drs have become more aware and researchers know much more about it now.

The author started the awareness campaign in Canada, the couple having moved there from South Africa if my memory is correct.

While there is a very good book about hemochromatosis published by the Iron Disorders Institute in the US, it too is getting old.  If you want to find a book (try library first), look for The Hemochromatosis Cookbook by Cheryl Garrison.  The first 2/3 is very informative and will allow you to take some control.  The rest are recipes which I have never used because they have a distinctive US style but overall the book reassures you about what you can eat.

Above all, do not stress about it, you are far from problematic results.

 

Thanks for both of your replies, very helpful.  I am doing lots of googling and trying to be good with my diet, I do eat a lot of white bread and was shocked to see 2nd ingredient is iron.  I do eat a lot of sugar so am going to work on that.  I feel I am going round in circles, I feel tired and weak so eat sugar to get a high then down you come again so will start looking at alternatives.  I will also look at B vitamins, I do take magnesium which I think helps me feel better. My liver results are good at the minute so at least that is a positive and have to make sure it stays that way. I have also just had a test for h pylori which I think is somehow connected to all this and came back normal, so hopefully if there was blood they would have spotted it in my stool sample, but you never know. I wish there was a good multivitamin that didn't have iron, but having a struggle finding one. Take care

Try eating a piece of protein instead of sugary foods.  Also look for bread that is very seedy (protein).  White bread is full of sugar.  There are some non iron multi's out there.  Some people on this forum have said what they use.  One of the ones I use is Nutrition Care Formula SF88.  It is better value by the large bottle of 180 tablets, 1 per day.  You might have to go to a pharmacy which has an alternative care educated person to get it or have your dr prescribe the first one as it is a Practitioner's brand.