Ferritin question

[islandgirl1986]

Hello. Can someone help with what iron supplement to take. I did respond to 'Clutter' but I think I sent it wrongly ( thankyou Clutter,and if you are about could you recommend) . Doctor did give me ferrous fumate some years ago,stopped after about a year. I take levo and small amount of calcium, I'm aware not to take them close together.

[humanbean]

The ferrous fumarate you need is :

Ferrous fumarate 210mg in a box of 84, which is enough for three doses a day (the maximum dose), and a box lasts for 28 days if taking the maximum dose. Obviously you could take fewer doses if you wanted. A box has been costing me £4.14.

You can only buy it from a pharmacy. Boots insist on a prescription, but other pharmacies will sell it without one, so be prepared to shop around. I've bought it from Lloyds and Tesco pharmacies.

There is a big fly in the ointment though. Ferrous fumarate is in very short supply at the moment and many people are struggling to get hold of it. I haven't read any explanations as to why, but I've seen a suggestion it will be available again in May.

pharmaceutical-journal.com/...

I think we all know what a shortage means. When it comes back it will probably cost an awful lot more than it has done up to now.

[humanbean]

The problem with iron is that the amount of elemental iron in supplements varies wildly.

For example :

One pill of ferrous fumarate 210mg contains 69mg of elemental iron.

One sachet of Spatone contains 5mg of elemental iron.

I realise that there will be variation in how well different supplements are absorbed. But I would personally go for the highest amount of elemental iron that I could tolerate.

[milkwoman]

I have tried many different types of iron supplements to raise ferritin levels and nothing worked until I started on Ferrex-150 (150 mg elemental iron in a single capsule) and Ferritin Bioavailable Iron (5 mg). Both of these are available on Amazon. Cost is very reasonable.

I started off taking 1 capsule (each) mid-day (1:00pm or so) so as to not interfere with the thyroid meds I take in the am and late afternoon. I also take Vitamin C to aid in absorption. I used to take regular Vit C (1000 mg) but recently switched to a pure form of vitamin C called Acerola Vit C (140 mg).

My ferritin levels always improve while on this protocol (ferritin went from 19 ng/ml to 40 ng/ml in 11 weeks). When I stop (I had to on two occasions per request from gastro - they wanted to make sure that my low ferritin/iron wasn't due to gastro issues), my ferritin levels always drop.

I am recently back on the protocol and am again seeing my levels improve. I don't have any stomach issues with these (and I can take them with or without food).

[helvella Administrator Thyroid UK in reply to milkwoman]

Thank you for posting that. We have seen far too few personal experiences such as yours.

I have often pointed out haem/heme and ferritin iron supplements as options. Most especially as haem, ferritin and "the others" are absorbed by three separate transports through the gut wall. It might even be that you can maximise absorption by taking all three forms of iron. (Always being very careful not to overdo it.)

Haem and ferritin are widely claimed to be much less likely to cause gut issues than "the others". Having viewed micrographs of the impact of substances such as ferrous sulphate, I'd be trying haem and/or ferritin if I needed any extra iron.

Has anyone had any negative effects from haem and/or ferritin supplements?

[milkwoman in reply to helvella]

You're welcome, helvella. And thank you for your kind words.

I wasted so much time over the years taking different iron supplements that simply didn't work. All were more expensive than what I am taking now and some caused me stomach issues. So you can imagine my frustration then, when while supplementing, my levels continued to drop. I knew I had an absorption issue but no doctor could tell me how to solve it. All I knew is I was losing stamina and exercise endurance as well as muscle strength and growing weaker and more fatigued as time went on.

I stumbled upon the Ferrex-150 while searching "ferritin supplement" on the internet and read the good reviews on Amazon. It was also at this time that I found the Ferritin Bioavailable Iron. From what I've researched, it is the ONLY ferritin supplement in existence.

My hope is that my experience can help anyone else in the same situation. I find the information on iron supplementation to be very confusing and am relieved to have finally found something that is working for me. I still have a ways to go to get my levels in the optimum range for me (I'd like to see it at 100), but I am getting there.

[helvella Administrator Thyroid UK in reply to milkwoman]

There is this from the USA:

iherb.com/Cardiovascular-Re...

(Might be same stuff in different packaging, I don't know!)

[milkwoman in reply to helvella]

Yes, that is the Ferritin Bioavailable Iron I am taking along with the Ferrex-150. Same packaging. (I am in the USA). Most likely the same pricing with shipping as Amazon (free ship on Amazon).

(I didn't think we could post links to supplements).

[helvella Administrator Thyroid UK in reply to milkwoman]

It is fine so long as they are not prescription-only (in the UK) and it is only intended to help others - not spamming.

[islandgirl1986]

Thanks all for comments on iron. I managed to get some Ferrous Fumarate 210mg (approx 69mg elemental iron) from a small local chemist. Difficult to get hold of as a few people said. My Ferritin was 31 ug/L (15 - 300). Does anyone know how long I should take it for, I suppose I should tell doc and get it tested at some point. Also does anyone know why levels drop?

[milkwoman in reply to islandgirl1986]

I hope this supplement helps you. Raising ferritin is typically slow going so I would expect to take it for a long time. 69 mg of EI isn't really that much - you may end up taking 2, 3 or 4 pills a day. I was (am) taking 300 mg EI daily along with 10 mg of ferritin.

Docs will tell you that it is you menstrual cycle that is causing you to lose ferritin. Of course, with the numbers you posted, docs will tell you you are "fine" since you are "in range". Doesn't matter to them how you "feel".

Yes, you should get tested in about 3 months to see if your supplementation is working and your levels are increasing.

Have you been checked out by gastro to rule out any issues there?

I don't have any answers with regards to causes. You could have a malabsorption issue, or perhaps, like me you are athletic and deplete iron stores because of rigorous cardio exercise, or, also like me, you have inflammation in your body due to autoimmune disease.

[milkwoman]

I had a Fecal Occult Blood test done. It is very simple and basically, you scrape a stool sample onto a card and the lab looks for trace occult blood. I never suspected my iron/ferritin issues were gastro related - have never had blood in my stool - so it was of no surprise to me that that test came back negative.

When I say there is a mal-absorption issue, the trick is finding the RIGHT kind of iron that your body can use. For years I took the "regular iron" and my levels kept dropping. So, I had to keep trying different forms and get tested and see if anything was being effective.

Since I am still a menstruating woman AND I maintain a high-level fitness routine (cardio and weights) AND I have hypothyroidism, lupus and Sjogren's, I'm probably using up iron and ferritin stores more rigorously than most. My experience has been that when my levels are up and my thyroid hormones are in balance (due to my thyroid meds being correct), I feel better.

[humanbean in reply to milkwoman]

Regarding the Faecal Occult Blood Test, be aware that it is not a very trustworthy test. It can easily give false positives and false negatives. The results can be affected if the sample has dried out too much before processing, or if you have been eating certain foods. Taking vitamin C supplements increases the chance of a false negative. It is also unreliable for finding people who have bleeding polyps - certain types of polyps are known to bleed only intermittently.

[milkwoman in reply to humanbean]

Very good info, humanbean.

Your response made me realize that I gave some incorrect info above. The test I took WASN'T the card type (referred to as FOBT), but the more-reliable, more sensitive type where the sample is taken via a wand with an end that you scrape across a stool and then the wand is inserted into a vial containing solution. This test is called fecal immunochemical test or FIT, for short and isn't affected by diet or supplements. (I swear, being hypo and having lupus, I really don't know anymore what is happening with my brain!)

I think you are correct that certain types of polyps can't be detected this way. There isn't a history of polyps or colon cancer in my family. I have no pain or eating issues or gastric issues and since my iron/ferritin levels still fall within the "normal range", my gastro determined that I'm okay. Personally, with my fit lifestyle, I would like my ferritin levels to be MUCH higher so, at least for now, supplementation is the way for me to go.

Trust me, if after a period of time I'm still feeling fatigued and exercise endurance wanes, and supplementation does NOT continue to raise my levels, a scope or colonoscopy is in my future. (Actually, I'm only a few years away from 50 so a colonoscopy is in my future regardless).

[humanbean in reply to milkwoman]

I had a polyp of the "intermittent bleeder" type, and the FOBT test came back negative. I was diagnosed with piles and dismissed, despite me telling doctors over and over again how much blood I was losing. It was only when I had a colonoscopy under general anaesthetic that the culprit was found and dealt with.

[milkwoman]

You're welcome.

I think, no wait, I *know* I have many, many, MANY (!)more missing pieces to figure out for myself. I really just want my "old, energetic self" back. I've been unwell for so long it seems (though, yes, doing better on meds) and even when I believe I'm on the "right track" something new and unexpected arises. My doctors help somewhat but I wish it weren't such a battle all the time. This site is such a godsend!

I've only been back on the correct iron supplements for a little over 4 weeks now and I've just recently had a change in dosage for thyroid meds (day 6 of slowing increasing my daily slow-release T3). Surprisingly, yesterday's cardio and lower body sessions were better than they have been so I am *hoping* (fingers-crossed) that I am on a good trend again. All I can go by is how I am feeling. With everything so intertwined (e.g., iron/ferritin/b12/D3, etc, affects thyroid meds and thyroid affects the body's usage of vitamins and minerals) it is challenging to know what is off-balance and causing things to go haywire.

All we can do is hang onto the "good days" and push through the bad ones and try not to kill anyone in the process!

Hugs.

P.S. Ha! No, but that would be cool. My screen name is a play on my married last name (it starts with Milk). My husband nickname is "Milkman" so I thought why not be Milkwoman?

[missymystique]

Ferritin pills make my tummy go crazy!