raised Ferritin and low TIBC

[Racheeeel78]

Could anyone help me understand these labs. For reference my ferritin has raised from 67 to 176 in 6 months without supplements or diet changes. Full blood panel all in rage. My folate has dropped from 10 to 6. My b12 is 690, my vitamin D is 100. Liver and kidney all normal and inflammation markers in normal rage. I have under active thyroid (TSH 0.18 T4 15 and T3 5. I also have stage 4 endo but haven’t bled for a year due to mirina coil. Thanks you!

[FallingInReverse]

So what is your CRP-hs number and can you share the full prior iron panel?

Your last posts seem to show you’ve had ~50% transferrin saturation percent for two years…? Accurate?

Have you ever taken iron supplements?

You have CBC now or previous to share?

[Racheeeel78 in reply to FallingInReverse]

Hi fallingInReverse,

I haven’t took iron supplements for over 6 months. Here’s a history on my ferritin.

10 January 2025 173 ug/L

16 September 2024 147 ug/L

27 March 2024 67 ug/L

24 May 2023 56 ug/L

29 December 2022 49 ug/L

5 July 2022 40 ug/L

7 February 2022 49 ug/L

Ferritin seems to of risen once I stopped having heavy periods due to mirina coil which was in December 23 until December 24.

Latest bloods- all last week:

Erythrocyte sedimentation rate: 2

Normal range: 0 to 12

Serum C reactive protein level: < 1.00 mg/L

Normal range: 0 to 5

Total white cell count: 5.4 10*9/L

Normal range: 4 to 11

Haemoglobin estimation: 118 g/L

Normal range: 115 to 165

Platelet count: 213 10*9/L

Normal range: 150 to 450

Red blood cell (RBC) count: 4.16 10*12/L

Normal range: 3.9 to 5

Haematocrit: 0.373 L

Normal range 0.37 to 0.47

Mean corpuscular volume (MCV): 89.7 fL

Normal range: 78 to 97

Mean corpusc. haemoglobin(MCH): 28.4 pg

Normal range: 27 to 34

Mean corpusc. Hb. conc. (MCHC): 317 g/L

Normal range: 310 to 360

Red blood cell distribut width: 13.3 %

Normal range: 11.5 to 15

Mean platelet volume: 11.1 fL

Neutrophil count: 2.5 10*9/L

Normal range: 1.5 to 8.0

Lymphocyte count: 2.2 10*9/L

Normal range: 1.1 to 4.0

Monocyte count: 0.5 10*9/L

Normal range: 0.2 to 1.1

Eosinophil count: 0.2 10*9/L

Normal range: 0.1 to 0.4

Basophil count: 0.0 10*9/L

Normal range: 0 to 0.3

Thanks for your help!

[Racheeeel78 in reply to FallingInReverse]

In 2022 my transferrin saturation was also 49%. My other iron panel results were mid range though (apart from serum iron 29 TR 30) and ferritin was 49.

The only other thing is I’ve lost 2.5 stone with diet & exercise this year but don’t know if that’s relevant or not (I gained after 2 ops and UAT diagnosis in same year).

[FallingInReverse in reply to Racheeeel78]

Hi Rachel,

Thoughts, let me know if I’ve mixed up any of the facts.

I’d say most likely culprit is the coil stopping your heavy periods. Blood loss (of course so commonly from our periods) is a very direct cause of changing iron status.

Our bodies shed twice the amount of iron on days we have our period, and so you would have to consume multiples more than that amount of iron on those days to absorb/replace just to maintain.

The CRP you show is low in range - there is no inflammation at play (which, if high, would also raise your ferritin result).

~50% trans Sat % for an extended period of time is too high. It’s remained there without supplements for how long?

Are you doing anything for your low folate? Folate is key for red blood cell production, and so MAY contribute to your lower hemoglobin.

I wonder if your diet to lose weight has dinged your nutrient intake.

In any case, it’s common for us hypo folks to need a folate supplement. It should be up near 20.

How much Levo and/or T3 do you take?

[Racheeeel78 in reply to FallingInReverse]

Thanks so much for your reply

My saturation has been 49% since 2022 I have not got another full iron panel on record before that to compare. In 2022 my ferritin was only 49 as well (I had two operations for endo that year so could that cause ferritin to drop? I stopped taking iron 6-8 month ago.

I’ve just ordered some folate 5mg so will start taking them asap!

I take 100 Levo and 10 lio for thyroid. I has full panel done in December with an endo and he seemed happy- although he didn’t test folate. He did ferritin and Tod my dr to run full iron panel, which is where we are today.

Diet wise I’m not too bad- no gluten, and minimal UPF.

Do you think could be early stage haemochromatosis and ferritin is now showing as raised since not bleeding for a year due to mirina?

Thank you so much for taking time to reply!

[FallingInReverse in reply to Racheeeel78]

What are your symptoms, by the way?

What are ranges in these T4 15 and T3 5?

As you likely know, even with a great diet, our hypo can often mean we have low stomach acid that makes it hard for us to absorb the nutrients we ingest. Hence all the supplements we all take!

As for iron hemochromatosis - tagging humanbean or TiggerMe who I think knows about that or can recall who does here. I am classic hypo anemic/low ferritin… so have no experience with that issue!

It’s all so individual as far as how we all absorb. Always a balancing act of iron in-iron absorbed-iron out.

[Racheeeel78 in reply to FallingInReverse]

My TSH is 0.18

T4 16

T3 3.7 but I forgot to take my lio 8-10 hours before test so it had been over 24 hrs so endo said it reality it would be more. Weirdly my T4 lowered from 18 when introducing lio (same 100 dose of Levo)

I could deffo do with eating more veggies and greens in diet. Mainly eat Greek yoghurt, soup and fish/chickenand rice! I do have bone broth each day for gut health but now wondering if that raises ferritin 🤔

Thanks for your help, super appreciated 🙂

[FallingInReverse in reply to Racheeeel78]

Ranges on the ft4 and ft3?

[Racheeeel78 in reply to FallingInReverse]

T3 3-6.8

TSH 0.27 - 4.2

T4 10.8- 25.2

[TiggerMe Ambassador in reply to Racheeeel78]

Certainly worth pushing for a haemochromatosis test as you are certainly trending upwards, any family history? If you find them unhelpful you could give blood to lower your levels and continue to monitor

Free T4 (fT4) 16 pmol/L (10.8 - 25.2) 36.1%

Free T3 (fT3) 3.7 pmol/L (3 - 6.8) 18.4%

So we'll ignore the low fT3 as more than 24 hours after last dose but it's not unusual for fT4 levels to drop when adding T3

[Racheeeel78 in reply to TiggerMe]

Thank you, after doing a deep dive on this forum and online it seems women tend to get diagnosed after menopause when their periods stopped, so seeing a rise after not bleeding from mirina makes sense- I’ll push for a test.

Family history: my mum has passed away at 45 and I don’t have a relationship with my dad so I have no idea.

Really hoping it’s not as i have stage 4 endo too so was in talks with gyno about an early hysterectomy which would make problem worse! Thanks for your help

[TiggerMe Ambassador in reply to Racheeeel78]

It didn't come to light for my sister until after menopause but then she has always given blood regularly to, I nagged her for 18 months to get it checked out but her GP really wasn't on the ball so I told her to keep donating as her ferritin was 700+ and then all of a sudden he conceded and tested her a few months ago and she is now on a proper regime and then they flap about how she needs to inform her family members 🙄 turns out she is the only one of the 4 of us to be effected 🤷‍♀️

It's interesting they mention a side effect is pain just above the liver and I remember Dad would always rub that area when he was just sitting chatting

[Racheeeel78 in reply to TiggerMe]

Pleased she’s finally getting support from GP, and great advice from you to keep donating! Hopefully she’ll be supported now! Funny how bits of the jigsaw start to make sense when you look back like with your dad. I’ve seen that you can get private test for £75 so I’ll do that if GP refuses a test as can’t hurt to know either way so can understand what’s going on 🙂

[NotElissa]

Your ferritin indicates inflammation I had it when I had the coil. It does not suit everyone and it caused my cervix to be inflamed and I was fast tracked for a biopsy which was benign and I blame the coil. It caused me to become fat, my hair to fall out and my face to become spotty at 47 years!

Here a link about the side effects

bnf.nice.org.uk/drugs/levon...

[Racheeeel78 in reply to NotElissa]

Hi NotElissa,

These coil moved itself down to my cervix so I had it removed last month. I have stage 4 endometriosis and honestly having a pain free year was life changing for me. I’ve had 4 surgeries, fallopians removed and a cyst that burst during an open surgery when I was 22 (41 now). It is interesting that iron results like this since coil and not having periods. When I bleed I have a tremendous amount of pain each month. It’s so difficult to know if I should have it again…. Sorry you had such a bad time with it 😢

[Espeegee]

please do look up some info on the Mirena coil, it doesn't have a good reputation. I know you have to balance it out against the endo and its effect on that but it's always best to know the facts.

[Racheeeel78 in reply to Espeegee]

I did so much research on it and I really did not want it - hence only trying in my 40’s. I tried cerazette and it made me so moody and anxious. My problem is if I bleed I’m literally passing out in pain each month and taking time of work. The next option for me is hysterectomy which carries other risks. It’s a really difficult one as the one year I had the mirina I lived a normal life!

[Espeegee in reply to Racheeeel78]

I totally sympathize, you're between a rock and a hard place. Have a look at DMSO, I haven't tried it but it seems to be well supported for pain relief. Another to look at is methylene blue, again I haven't tried it but it's worth a look at alternatives. Both have been around a very long time and have a lot of advocates.

[Racheeeel78 in reply to Espeegee]

I’ve never heard of these- thanks so much I will do some research 🧐

[Zephyrbear]

My eldest daughter had dreadful endo and at the age of 45 was offered a full oophoro-hysterectomy. As she no longer wanted any more children she had it done. No longer a full “open the belly up” surgery it used to be, it was done vaginally and she was up and about within days, cooking Xmas dinner! She hasn’t looked back since and is enjoying her life again without the debilitating endo.

[Racheeeel78 in reply to Zephyrbear]

So pleased for your daughter, it’s an awful disease! I have another cyst and fibroids so gyno sending me for a scan and we are going to discuss hysterectomy! Thanks for sharing a positive story ☺️

[humanbean]

Optimal iron results :

Source : rt3-adrenals.org/Iron_test_...

.

Info about optimal ferritin :

thyroidpharmacist.com/artic...

Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.

.

Your results :

Ferritin 173 (13 - 150) Over range

Serum Iron 23 ( 14 - 30) 56% through the range Optimal

Serum Transferrin 1.87 (2 - 3.6) Under range

Transferrin Saturation 49% (15 - 50) 97% through range

TIBC 47 (50 - 85) Under range

...

Having too high a level of iron and/or ferritin in the blood and body is dangerous. Excess iron can deposit itself in organs and other places you don't want it. It can make people feel very unwell. Look up the effects and symptoms of haemochromatosis. (I'm not suggesting you have that!)

Doctors will usually pay attention to haemochromatosis or iron overload - but they will only take it seriously and consider treating the condition if ferritin is about 1000+ mcg/L. So your level of 173 will be considered to be quite normal. And your serum iron is actually optimal. So, although your results are not all optimal I don't think they are worryingly high.

...

I suspect that your mirena coil is altering your sex hormone levels and this in turn could be having an effect on your iron. Obviously the lack of periods will have a major effect on your iron and ferritin levels.

.

My folate has dropped from 10 to 6.

I would suggest that your folate is too low and that you should raise it to about 20. Personally I take methylfolate. I avoid folic acid like the plague.

[Racheeeel78 in reply to humanbean]

Thanks humanbean.

My saturation was 49% through when my ferritin was just in the 40’s is that unusual?

My ferritin has clearly increased with the coil so my main concern would be getting and hysterectomy and it continues the trend- it’s raised by over 100 with no supplements since it was having the coil.

I wouldn’t want to get hysterectomy if there is something more serious at play.

Thanks for this information 😊

[Espeegee in reply to humanbean]

My ferritin has been as high as 650 (13-150) and has never been below 300, it was never mentioned by any doctor who saw it, when I brought it up with one GP it was clear it didn't mean much to her. I also have NAFLD, this can cause high ferritin levels so it seems. The GP had no idea what to do so I mentioned that and Endo I saw had suggested being referred to a gastroenterologist so the GP referred. The one I saw was also not very clued up so he just had a set of thyroid tests done and a 24 hour urine collection neither of which resulted in any sort of treatment. I've accepted that if I can reduce my weight substantially, the NAFLD will also reduce and presumably my ferritin level will drop. The other option is blood donation but I'm well above the age for that.

[learner01]

It’s important to find out if you have haemochromatosis because if left untreated it can lead to serious liver damage, cirrhosis and worse. You may not have any liver pain or symptoms but your liver could be being damaged. Livers can recover if the damage has not gone too far. Treatment for haemochromatosis is having blood taken so as to keep iron levels in safe range.

haemochromatosis.org.uk have information.

Unfortunately GPs not necessarily aware of it, but they should be, it’s the most common genetic disease and common in those of Celtic descent - 20% . A late relative had it and first haematologist wasn’t interested but she was subsequently diagnosed by a different one. My relative was a regular blood donor so her iron levels were being kept down by that and may have contributed to delayed diagnosis. She was later told that her regular blood donating had more than likely saved her life.

All the best.