How can you confirm iron deficiency and identify the cause

[KE12]

Hi all, I’d love to get your opinion since you’re the most knowledgeable group I know.

It’s been a really long journey and I think I’ve figured out why I’m out of breath all the time and tired (and many other symptoms) and I think it’s down to an iron deficiency.

I thought it was b12 but I’ve been supplementing and my bloods show an increase.

My ferritin levels are 62 (13-150) and were 65 a year ago. I have been taking 18mcg of iron everyday for well over a year but it’s not made any difference. I’ve included other results in case im missing something. These were taken in the morning and no levothyroxine for 24 hours. I take 150 levothyroxine and it seems to work for me.

my b12 is 834 (145-569)

TSH is 0.8 (0.27-4.20)

T4 is 16.5 (12-22)

Folate is 39.3 (8.80-60.80)

D3 is 93 (no exact range but 50> is considered sufficient)

I have been supplementing all of these and my blood is showing I’m absorbing them.

As per most people’s experience my drs have not been great. I’ve recently moved area and that has not improved things which is why I’m trying to control what I can as much as possible.

What I’m not sure of is why I’m iron deficient and what’s causing it. I think I have low stomach acid so I’m taking Betaine and a digestive enzyme which worked before and I took a break and it’s been 3 weeks and no change so far. I get bloated when I eat anything so it’s leading me to think it’s digestive but not sure what exactly or how to tackle it.

Does anyone have any ideas of why I’m not absorbing it, other things I can get my dr to test and any treatments I can try?

Thank you!

[SlowDragon Administrator]

You need TSH, Ft4 and Ft3 tested together

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you taking

Do you always get same brand at each prescription

Do you have Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Private tests are available as NHS currently rarely tests Ft3 or both thyroid antibodies

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

Iron and ferritin

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

Stop iron supplements 5-7 days before test. Test early morning and only water between waking and test. Don’t eat iron rich dinner night before test

medichecks.com/products/iro...

come back with new post once you have results

[KE12 in reply to SlowDragon]

The dr didn’t request a full iron panel this time but these were my results last time and nothing has changed in symptoms. These were a year ago.

Serum TIBC - 56 (50-72)

Transferrin saturation index 48% (20-50)

Iron level - 26.9 (14-30)

I’ve been on the same brands of levothyroxine, I have 100 with accord and 25 with mercury pharma.

I’m struggling to get drs to take control of the situation and figure out what’s going on which I’m sure would be no surprise to this group. Process of elimination and with corroborating symptoms tells me I’ve got an iron deficiency.

[SeasideSusie Remembering in reply to KE12]

KE12

Serum TIBC - 56 (50-72)

Transferrin saturation index 48% (20-50)

Iron level - 26.9 (14-30)

So you don't have iron deficiency, in fact your serum iron and saturation areclose to the top of the ranges and suggest that iron supplements aren't needed, much more and you'll be over range and continuing to take iron may lead to iron overload/toxicity.

Optimal iron panel levels according to rt3-adrenals.org/Iron_test_... are:

Serum iron: 55 to 70% of the range, higher end for men - yours is 80.62%

Saturation: optimal is 35 to 45%, higher end for men - yours is 48%

Total Iron Binding Capacity (TIBC) or Transferrin: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 27.27% so at the lower end of the range and doesn't indicate the need for iron supplements.

You just have lowish ferritin and you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

everydayhealth.com/pictures...

If you continue to supplement iron you must keep a close eye on your levels by regularly doing a full iron panel every couple of months.

[KE12 in reply to SeasideSusie]

Thanks for the interpretation of the results, I assumed that low end meant deficiency.

I eat a varied diet including meat but it’s obviously not enough so I’ll try eating liver and black pudding and in a concentrated form to see if that makes a difference. Thank you.

[Titaniumfox]

I completely agree with Seaside Susie. I too have a relatively low ferritin but my last 2 iron panels (I do them annually) have shown my iron is now over range and my TIBC is under range. Also have high over range transferrin saturation 56%. I was so bothered by this that I tested for haemochromatosis and found I carry the main gene for it C282Y. Normally as 'only' a carrier I would not develop iron overload but there are a number of genes that can also contribute and I would only need to be a carrier of another to end up with haemochromatosis. It may be that I am just starting to develop it. You also need to do a full blood count as that can reveal further whether there are problems with iron.

Edit: I don't and have never supplemented iron and don't eat red meat, so you can see why I might start to wonder why my iron is now over range!

[KE12 in reply to Titaniumfox]

I’m not sure I fully understand the difference between iron and ferritin yet 😬

I am supplementing with iron so it’s possible it’s high because I take 18mcg a day which I can reduce now I know iron is not the problem.

The dr did a full blood count and I had it done last year as well and both came back normal. If you think it would help to post it here let me know.

I can look into haemochromatosis as it’s not something I know anything about, and certainly if symptoms don’t improve with diet changes.

Thank you

[Titaniumfox]

Ferritin is a protein that stores iron. It's like a huge container ship! The iron measured in an iron panel is 'free' iron, so not bound to ferritin (or transferrin, an iron transport protein). In full blown haemochromatosis ferritin levels will go up and up to dangerous levels. People have been know to have ferritin values of over 3000! If I were you I would stop supplementing iron for now. Do another iron panel in a few months when you are not supplementing and keep an eye on what transferrin saturation is doing, along with free iron and ferritin. If your FBC is normal for now, that's good.

If you are interested in learning more about haemochromatosis then do visit their website:

haemochromatosis.org.uk/