On iron supplements but my ferritin did not inc... - Thyroid UK

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On iron supplements but my ferritin did not increase

WhyAmISoTired profile image
11 Replies

I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low.

I started taking iron supplements last year. I am taking Sideral Forte which I ship from Germany, I tried Solgar gentle iron but it was not gentle enough for me! I do feel better in some ways (most amazingly, the dry mouth problem disappeared completely) but I am still very fatigued and I seem to get worse after my period. Sadly I did not test my ferritin before starting supplements but I did test it in January and then 5 months later and my ferritin is not increasing :-(

Here are the tests:

July of last year (before supplements)

Iron 13 μmol/l (11-32)

Transferrin 2.2 g/l (2.0-3.6)

Transferrin Saturation 23.5% (16-45)

Sadly I made a mistake and didn't test the ferritin :-(

January (after 2-3 months of intermittent supplementing, I started with bisglycinate but I could not tolerate it well)

Iron 11 μmol/l (11-32)

Ferritin 61 μg/l (15-291)

Transferrin 2.0 g/l (2.0-3.6)

Transferrin Saturation 21.9% (16-45)

May

Iron 13 μmol/l (11-32)

Ferritin 54 μg/l (15-291)

Transferrin 2.1 g/l (2.0-3.6)

Transferrin Saturation 24.6% (16-45)

So my transferrin saturation is increasing, which is good I think, and my symptoms are partially better, which is also good. My hemoglobin increased quickly after I started supplementing, also good. But the ferritin actually went down after 5 months!

Any advice? Is it normal that the ferritin does not increase at the beginning if iron reserves have been low for a long time? Should I just continue what I am doing for a few years? Maybe I should try another supplement but I have IBS/c already...

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11 Replies
jrbarnes profile image
jrbarnes

My ferritin was 19. I take Thorne brand iron. The pills are small and very gentle with no side effects. They come in 25mg and I take 100mg every other day. It works fast.

DiNL profile image
DiNL

i have PA and have struggled with absorbing iron. I have since tried heme iron. I am in the Netherlands and use Optifer from Amazon. I take about 40mg a day. I know I can take more but need to figure out what works for my body. My ferretin is rising for the first time. I ordered 3 arrows heme from the USA. It is much stronger as each pill has 20mg in it. But can’t tolerate it as well as the Optifer. Perhaps try heme iron. Are you taking your iron with vitamin c to help it’s absorption? It really helps!

Hookie01 profile image
Hookie01

How much are you taking?

WhyAmISoTired profile image
WhyAmISoTired in reply to Hookie01

It is 30mg iron, plus 70mg vitamin c. I take one every day.

humanbean profile image
humanbean

muscle twitches

These can be caused by other vitamins and minerals being low, not just iron. The ones I know of are low levels of magnesium, vitamin D, potassium, and sodium. I think possibly low calcium might cause them too.

For me personally, magnesium is the really essential one to stop me getting twitches and cramp. If that doesn't work then I'll try a small amount of potassium bicarbonate. Sodium/salt would be really a last ditch attempt.

I know my vitamin D and calcium are never low so I don't personally take those for twitching or cramp.

.

Is it normal that the ferritin does not increase at the beginning if iron reserves have been low for a long time?

I have had low iron / ferritin most of my life. In 2013 I had extremely low ferritin and under the range serum iron. I don't absorb iron well.

I started testing and treating myself because doctors would only ever give me a couple of months of iron supplements, and I discovered that this wasn't nearly enough to make a dent in my low levels. The biggest thing I discovered that helped is that the iron supplements that doctors prescribe can be bought in pharmacies in the UK without prescription. I also discovered the BNF - British National Formulary that gives the doses that doctors prescribe.

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drugs/ferro...

bnf.nice.org.uk/drugs/ferro...

bnf.nice.org.uk/drugs/ferro...

^ I could never tolerate ferrous sulfate, and I think that is fairly common.

I was taking the maximum dose possible of ferrous fumarate 210mg for 22 months before I got my ferritin up to mid-range. Serum iron stayed low.

The other thing I discovered that finally allowed me to improve my iron / ferritin was learning that I could get an iron panel done privately without involving a doctor, just with a finger-prick blood sample.

medichecks.com/products/iro...

Some discount codes :

thyroiduk.org/help-and-supp...

Once I got my ferritin to mid-range I started taking a maintenance dose of iron to keep my ferritin as close to mid-range as I could, because without it my ferritin plummeted very quickly. My serum iron stayed low. (This is a classic result in a common condition called "Anaemia of Chronic Disease".)

irondisorders.org/anemia-of...

Please note that people can be iron deficient with or without anaemia, and the iron deficiency ought to be treated in both cases, but often isn't if the doctor hasn't found anaemia.

irondisorders.org/wp-conten...

cks.nice.org.uk/topics/anae...

.

I stayed on my maintenance dose for about 5 years, testing regularly, then the pattern of my results changed and my serum iron and ferritin started rising higher than they ever had before so I gave up iron altogether. I still do regular iron panel testing.

I had to do all this by myself because I didn't want to have to fight doctors for testing and treatment all the time.

Supplements available in the UK without prescription :

healthunlocked.com/thyroidu...

Everyone has to find the iron supplement that they can tolerate for themselves, and it can be a long-winded search. If constipation is an issue with iron then take high dose vitamin C with the iron. Too much vitamin C will give people diarrhoea, too little while on iron supplements will cause constipation. When that happens, adjust the vitamin C dose up or down as necessary.

Take iron supplements four hours away from any thyroid hormones because iron can reduce the absorption of thyroid hormones hugely.

Pros and Cons of Every Day and Alternate Day Dosing of Iron Supplements :

healthunlocked.com/thyroidu...

I don't recall every-other-day dosing working for people with thyroid disease, but its always worth knowing it might work.

Optimal results for an iron panel :

rt3-adrenals.org/Iron_test_...

Note that in some people with methylation / MTHFR gene problems (these are very common), low folate and low vitamin B12 can reduce or stop iron absorption. The best supplements to improve folate and B12 are, respectively, methylfolate and methylcobalamin, avoiding folic acid and cyanocobalamin. It's the "methyl" donors that people with methylation problems need. Read up on "under-methylation" and "over-methylation" for more information on the subject.

WhyAmISoTired profile image
WhyAmISoTired in reply to humanbean

Thank you humanbean, that is a lot of helpful information. I am pretty sure the twitches were due to low iron because I was twitching so much last year and that's 98% gone. Palpitations are also gone. But I'm still tired!! I will try different kinds of iron and see what works.

Santolina profile image
Santolina

B12 dosage apparently decreases ferritin.

WhyAmISoTired profile image
WhyAmISoTired in reply to Santolina

Yes, that's my impression as well! I'm determined to get it back up!

j9j8j7 profile image
j9j8j7

The problem with most iron is that so many things affect absorption. Calcium is a big one but also tea, coffee, wine, a lot of wholegrains, soya, certain herbs, certain nuts, and the list goes on and on. So it can make it hard for your body to absorb much of the iron you are taking. Heme iron is easier for most people to absorb and much less effected by other foods (I believe it's still best to avoid dairy/calcium for a few hours either side of taking it). I really struggled with side effects from various different iron supplements but have had no issues with Three Arrows heme iron.

WhyAmISoTired profile image
WhyAmISoTired in reply to j9j8j7

Thank you, I will try it. Did it work?

j9j8j7 profile image
j9j8j7 in reply to WhyAmISoTired

I've only been taking it a few weeks and haven't had my bloods retested yet but I am feeling a lot better than I was before starting the three arrows iron (and haven't changed anything else) so pretty sure it's working.

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