Maintenance levels
Posted , 8 users are following.
I am trying to understand what would be a good Ferritin maintenance level and what are everyones experiences. I started at 700 when I was diagnosed in Jan 17, after bi-monthly phlebotomies my ferritin was 30 by Oct 17. I felt horrible by October and it turned put by Homoglobin was too low. They stopped taking blood and scheduled a blood test in Apr 18. So by Apr I had a ferritin level of 90 and the DR said to follow up in six months ( Oct 18).
So with my current diet I seem to increase ferritin by 10 per month (complete projection) so that would put me at about 140 today.
The thing is from December 17 to a couple of weeks ago I was feeling great for the first time in years, but for the last couple of weeks my symptoms are starting to return, brain fog, fatigue, etc...
I know the normal range is 30-300 but do most people only feel better under 100 Ferritin?
Wondering if I should insist keeping it under 100 all the time...
Thought?
0 likes, 8 replies
Piggypolo stephen25002
Posted
Looking forward to any responses you get for this! I started at 1500 in Dec 2017 and I'm still at 800 now. Venesections every 4 weeks, just increased to 2 weeks.
ellen12819 stephen25002
Posted
You need to join this https://haemochromatosis.org.uk/ all your answers are right there and by joining, you help with the cost of sending out and collating new starter packages, you learn all the latest information to keep you abreast of what is correct. This site was recomended to me by my consultant as the only place to get the latest and correct information. The numbers both yourself and piggypolo are talking about have recently altered and are now medical council guidelines. You can visit and read for yourself. Good luck and I am so pleased you have been diagnosed and can work towards improving /extending your lives.
sheryl37154 stephen25002
Posted
Hi Stephen
I am glad to hear that you have be venesected to below 50, which means that you have been 'de-ironed'. But it sounds like your bi-monthly regime was kept going too long which is one of the causes for your Hb becoming low. You regime should have been slowed to monthly, then two monthly, and after hitting <50, put on 3 monthly maintenance. Of course, we with GH do not behave like text book numbers, so there will always be anomalies.
Another reason for your low HB would be caused by avoiding foods with iron. It is not recommended. You need your iron for a lot of health reasons, not to mention to keep up your Hb up while being venesected. It is wrong advice to be told to avoid foods that contain "high" iron, with the exception of liver (too much) and clams whose iron content is so high I think it is a misprint.
I was diagnosed in 1998 so I have been experiencing it for many years. As a result my son was also diagnosed homozygous, as well as his father. I have found that my optimal level seemed to be 34 which gave me 13 good days which I thought was great, then the fatigue and heaviness set in. My TS% always remained high.
I continued to have 3 monthly venesections, even though my ferritin levels went into the low 20's. Finally my TS% started reducing. Then I really started to feel better. There is research that found that having a high TS% was toxic and make us continue to have the symptoms even though we have been de-ironed. Once you get that low and continue to have venesections, your ferritin only drops by small amounts - not like when your ferritin is high. In earlier years, my ferritin had been down to 8 and 13 with no negative effects. Then it was let go higher again. The haemotologists were experimenting as they did not have today's research to go by - not that they read up too much on it anyway - GH is not their special field.
I read a lot of medical research on GH, talk to researchers, go to conferences - one this weekend. The latest I have read published by my GH organisation is, it is best to keep <50 - I shall be querying that as I have not read any research that reports that. However, in my experience being lower than 50 for years now, it is not a problem - more the opposite.
Low Hb is the problem - these are your red cells and when you are low in these you are anaemic even though you might have a high ferritin and need venesections, but you can't have a venesection because your Hb is low - vicious circle.
Let us know how you go.
sheryl37154
Posted
I checked on the UK haemochromatosis website and found the conference reports, in particular for 2017, wherein Prof P Brissot (my favourite researcher) is reported to be of the opinion that both ferritin and TS% levels should be brought to <50 - the 50/50 rule he calls it.
"In maintenance (ie after deironing and with venesection being simply frequent enough to prevent iron stores building up again) transferrin saturation again becomes a crucial measure, with a level of 75% or more being an indication of the system beginning to struggle and iron loading recommencing. For this reason, Professor Brissot (along with his peers attending the previous day’s medical conference) is of the opinion that SF and TS should both be maintained at under 50 – microgrammes per litre in the case of SF and percentage points in the case of TS. He referred to this as the 50/50 rule.
We know that many of our members and other GH patient will welcome this clarity, with many hospital consultants and GPs unsure about the use of TS as a measure and sometimes unwilling to include the test on a regular basis. It also supports anecdotal evidence that some people continue to suffer serious symptoms alongside high transferrin saturation, even when the primary test conducted within a patients venesection programme – serum ferritin – is very low."
This confirms my experience as outlined above.
If your dr does not agree, print off the report from the website and give it to him to read.
stephen25002 sheryl37154
Posted
The problem is I live in Quebec, Canada and our medical system does not test for TS%. They only measure the ferritin levels and make decisions on that, so I can't get a complete picture of what is going on.
So I now have a level a ferritin of over 100 with no measurement of TS%.
As for diet you are correct, since being de-ironed, I started eating red meat again(although only one or twice a month) and only avoid liver and raw seafood....
sheryl37154 stephen25002
Posted
Prof Paul Adams is your guy in Canada. Read up on his research to see if there is something you can use for leverage. Also there is a strong haemochromatosis organisation in Canada. Contact them to find out how you can get around it, if possible.
If not, just keep having your venesections to bring down your ferritin to <50 and your TS% should follow suit. Mine took 20 years but I had severe symptoms for 9 years before I was diagnosed which probably had an impact on that for me.
jwrhn1951 stephen25002
Posted
I think your low Hemoglobin is what is causing your symptoms and you should concentrate on bringing it up, once you are deironed there really is no reason to avoid iron in your diet, eat a regular diet and forget about trying to avoid iron at least until your Hemoglobin gets over 17...
miller.jones stephen25002
Posted
with hemoglobin being low that is not good you will feel awful with joint pain etc this should pass with time but they should of been doing checks may not do it every time but if you are having two sessions a month one of those sessions they should be doing ferrtin/fbc and the swab
I would take a look at your diet and see what you are eating a when you are eating not just for the iron side of things but you may not be getting enough nutrition.
Did you also get tested to check all your vitamins/minerals?