Advice re High Bilirubin (Gilbert’s) and ‘Borderline’ Iron Levels

[Buddy195]

Iron Saturation (January 2025)

Serum Iron level 23.0 umol/L (9-30.4)

Unbound iron binding 44.4 umol/L

Serum unsaturated iron binding 67.4umol/L

Serum saturated iron binding 34%

(Laboratory note: ‘iron saturation= borderline.communicate with patient)

Serum ferritin

38.6 ug/L (30-337) January 2025

32.5 ug/L (30-337) December 2024

(Laboratory note= satisfactory)

Medichecks iron status June 2024

Iron 25.8 umol/L (10-30)

TIBC 64 umol/L (45-81)

UIBC 38.2 umol/L (25-45)

Transferring saturation 40.3% (25-45)

Ferritin 59.1 ug/L (30-264)

Bilirubin (January 2025)

Total Bilirubin 36 umol/L (0-20) (29 umol/L December)

Conjugated 5.3 umol/L (0-5)

Percentage conjugated 15%

Unconjugated 31 umol/L

Liver function test (January 2025)

Serum alkaline phosphates level (ALP) 54 u/L (30-130)

Serum alanine aminotransferase level 20 u/L (0-30)

(16 u/ L December 2024)

Serum albumin level 41.5 g/L (35-50)

(Results borderline= communicate with patient)

I had some liver tests in December 24 following stomach issues after taking a week’s course of antibiotics and was told my Bilirubin was high. I don’t have jaundice (yellowing) although am quite pale! GP wanted to retest 6-8 weeks later as (unknown to me) my Bilirubin has been elevated in the past. GP has now confirmed I have Gilbert’s Syndrome, which does not require further treatment. There seems to be conflicting advice in my search for information on Gilbert’s and what (if any) supplements might be helpful.

As I was concerned that my ferritin has dropped further since I last checked in June 2024, GP agreed to an iron panel. I am trying hard to raise ferritin through diet ( I’m a pescatarian), but unsure if supplementation would help.

If anyone has knowledge of Gilbert’s with a thyroid condition, or can offer any insights into my iron levels, I would be very grateful!

[helvella]

We've had posts about Gilbert's over the years. Search finds about two posts a year! But we all know that HU search is not that good.

Might be worth having a read over old posts? Or searching HU using another search engine (e.g. Google) to perhaps get more complete results.

Without apostrophe:

healthunlocked.com/thyroidu...

With apostrophe:

healthunlocked.com/thyroidu...

For your sake, I rather hope that the low rate of posting indicates a relatively low impact of Gilbert's.

[Buddy195 Administrator in reply to helvella]

I’d never heard of Gilbert’s before- apparently it can affect 1 in 20people.

[SlowDragon Administrator in reply to Buddy195]

Loads of my family have it …..my mum did and both my children do ….but I don’t

[SlowDragon Administrator]

Gilbert’s syndrome is pretty common

gilbertssyndrome.org.uk

being pescatarian and Hashimoto’s you will probably struggle with Ferritin

Will tag humanbean and FallingInReverse to comment

What are your thyroid levels like

[Buddy195 Administrator in reply to SlowDragon]

Thanks SD. My FT4 was tested in December and has dropped from 16.4 (Summer 24) to 12.8, which is concerning as my levels have been fairly consistent for past few years. I thought I’d try and address the ferritin first and then get a full thyroid panel privately to see if it remains low/ increase my combination dose as needed.

[SlowDragon Administrator in reply to Buddy195]

My FT4 was tested in December and has dropped from 16.4 (Summer 24) to 12.8,

What’s the range?

What was Ft3 result?

I would suspect if you improved Ft4 level your ferritin will improve

Low Ft4 suggests you need dose increase in levothyroxine

Being hypo makes low iron/ferritin and reduction in other vitamins more likely

If Ft4 was high and Ft3 low and ferritin was low ……then you would look at improving low ferritin to improve conversion of Ft4 to Ft3

[Buddy195 Administrator in reply to SlowDragon]

Jan 25

FT4 12.3 (7.8- 18) No FT3 tested by GP

June 24

FT3 5.1 (3.1- 6.8)

FT4 16.4 (12-22)

As I like to adjust one thing at once, I was wondering if I should ask for/ consider an iron supplement prior to adjusting Levo. I am due a full thyroid test from Medichecks (normally test x2 year) so will order that asap.

currently taking 75mcg Levo and 15mcg Lio

[SlowDragon Administrator in reply to Buddy195]

If Ft4 is still similar on Medichecks test I would be looking to increase levothyroxine to 87.5mcg

[Buddy195 Administrator in reply to SlowDragon]

Would you do this now and retest in 6-8 weeks….or test first to monitor FT3? I used to be on 87.5mcg Levo and 15Lio prior to starting HRT a couple of years ago. I needed to adjust downwards (whereas other members taking HRT report needing slightly more).

[SlowDragon Administrator in reply to Buddy195]

Know how sensitive you are to change in dose I would test first

[Buddy195 Administrator in reply to SlowDragon]

SlowDragon id be grateful of your input/ advice.

My FT4 is just slightly lower than Summer24 in this test/ ferritin about the same/ active B12 dropped slightly …. I’m thinking I may add 12.5mcg Levo (ie move to 87.5mcg Levo and 15mcg Lio from 75mcg/15mcg) I’m taking Ingennus super B x3 week so will increase to x5 week. As you know, I like to adjust slowly as I seem to get an anxiety spike otherwise.

Latest results arrived today- no idea why TSH failed

[SlowDragon Administrator in reply to Buddy195]

I would consider even smaller increase

Perhaps 87.5mcg 2 days a week and 75mcg 5 days

[Buddy195 Administrator in reply to SlowDragon]

That’s a great idea!

[Buddy195 Administrator in reply to SlowDragon]

Just read this on the link you supplied

‘We know some medications are processed differently by GS sufferers and so anyone taking any medication who has GS should be aware of this. There is evidence that HRT can affect bile composition (hcd2.bupa.co.uk), which may have implications for GS sufferers’

Ive got a lot more questions now! 🤣

[FallingInReverse in reply to Buddy195]

The article link I sent addresses the drug sensitivity and also the mechanics of bile.

Read the section titled “The dark side of Gilbert’s syndrome.”

It’s a short article and really clearly written.

[Buddy195 Administrator in reply to FallingInReverse]

Interesting that even ‘safe’ drugs like paracetamol can cause issues for those with Gilbert’s. Will need to be vigilant with all medication. I’m on HRT and wonder if this also has adverse issues for Gilbert’s.

[helvella in reply to Buddy195]

The big positive is that at least you now know. Without knowing, you obviously had not the slightest idea that all these things need to be considered individually and within this background.

[FallingInReverse in reply to Buddy195]

And funny so many articles are like - no issue, carry on!

[Buddy195 Administrator in reply to FallingInReverse]

Yes, my GP was like ‘it’s no big deal’ and said I had elevated bilirubin in the past, but this probably wasn’t discussed with me, as other liver results were normal. Interestingly, over a decade ago, it was actually a gastroenterologist who suggested I may have a thyroid issue & sent me to an endocrinologist. I was diagnosed with gastritis at the time via endoscopy. Luckily going GF eliminated this issue for me & (up until recently)I’ve had no gastric issues. Taking a course of antibiotics late October 24 gave me a lot of stomach/ bowel issues (after a week of taking them) and I’m thinking this flared liver issues.

[FallingInReverse]

Did a quick deep dive on Gilbert’s … very interesting! Here’s a quick reply from me matching it to what I know of iron.

As I like to adjust one thing at once, I was wondering if I should ask for/ consider an iron supplement prior to adjusting Levo.

* Your iron saturation (as measures of iron in the blood and the cells… where overage can do damage) are right where I’d want them. Although saturation dropped from 40 -> 34… that is a perfect range low and high where I try to stay. If you’ve done that without supplements, I say keep up the iron rich diet.

Gilbert’s

I’d say that to anyone with your iron panel, but googling Gilbert’s and I’d say it’s more important for you.

…Because iron is a pro-oxidant, and excess iron through supplementation can increase oxidative stress. This is best avoided with Gilbert’s, as while it’s not a liver disease, the genetic variant (UGT1A1 mutation) reduces the liver’s ability to process and clear bilirubin. This is a problem because elevated bilirubin can increase oxidative stress and impair detoxification pathways. Since iron is also metabolized through the liver, too much could stress the liver so it makes your bilirubin worse.

I’ll guess that mechanism might be relevant for anything you do. That the bilirubin creates oxidative stress and difficulty clearing other oxidants too, and so maybe for you the whole “anti-oxidant” management bucket is one to explore and manage more than others might (antioxidant foods, vitamin C & E, NAC, co-q10 , etc).

[Buddy195 Administrator in reply to FallingInReverse]

Thankyou so much for your reply. I will very heed your advice re only improving ferritin through diet, not supplements, as I do not want to put any more stress on my liver. I will certainly explore further antioxidants, vitamin E, NAC and co-q10- as I’ve not looked into these.

I posted before about how (I believed) high dose turmeric may have reduced my ferritin last year, but it’s interesting that since I stopped the turmeric completely, my ferritin has actually dropped considerably. Maybe it’s time to reintroduce!

Up until last week I’d never heard of Gilbert’s Syndrome, so it’s very new to me. Apparently cold weather, dehydration and stress can cause flares.

[Tina_Maria in reply to Buddy195]

I would be very wary with turmeric supplements, especially if you are having problems with bilirubin, as there have been some cases of liver injury with turmeric supplements. I include a report from the food standard agency:

cot.food.gov.uk/node/13031

Some supplements have also been found to contain heavy metals, so depending where you get the supplements from you may get more than you bargained for. Consuming turmeric in food (curries etc.) should be okay, as it would be a much lower dose.

[Buddy195 Administrator in reply to Tina_Maria]

Thanks for the advice!

[FallingInReverse]

Did you have a CRP paired with any of those ferritin results?

[Buddy195 Administrator in reply to FallingInReverse]

1.5 mg/L (0.0 - 10.0) so guessing no issues with inflammation

[radd]

Buddy195,

Elevated bilirubin is not necessarily the result of Gilbert's syndrome as is commonly associated with hashi-hypo on multiple levels: impaired liver clearance cause by low FT3, gallbladder issues and fat malabsorption issues, bile-duct issues, etc. Also Graves regarding high T3 causing death of liver cells, and/or any autoimmune condition inviting others, eg autoimmune hemolytic anemia.

I would be investigating further before I just accepted that diagnosis.

[Buddy195 Administrator in reply to radd]

The GP seemed to think that the liver profile was fine, other than elevated bilirubin. I have no stomach issues/ pain to suggest gallstones. I also had a full blood count (repeated from December), bone profile, urea and electrolytes, haemoglobin AIC level, which all appear fine.

What other tests would you ask for?

[radd in reply to Buddy195]

Buddy195,

Once you are certain you are optimally medicated thyroid hormone wise and those meds are performing well, I would be looking at the autoimmune side given your history of having both Graves and Hashi (although this is an area I haven’t explored extensively).

However, I know that autoimmune hemolytic anemia causes the immune system to make antibodies against red blood cells, which creates breakdown and when RBC’s are destroyed they release haemoglobin which is broken down by the liver resulting in elevated bilirubin.

I previously had elevated bilirubin levels although mine was due to haemachromostosis but I do think yours are worth checking out as if autoimmune, might be controllable through eliminating auto-immune (chronic) inflammation.

[Buddy195 Administrator in reply to radd]

Thanks radd, I will discuss with my endo as GP adamant it’s Gilbert’s (as low CRP, no issues with blood panel, plus I do feel well- so hopefully that rules out Gallstones etc). I need to work on improving ferritin through diet (bit tricky as I’m pescatarian but am upping my intake mussels/ tuna etc). Was somewhat shocked that my FT4 has dropped (at same time as ferritin) so just ordered a full private test to check FT3/ other key vitamins. Will share when I have them. If thyroid still not optimal, will raise Levo slightly….hopefully this will raise ferritin too 🤞

[radd in reply to Buddy195]

Forgot to suggest which labs in answer to your question 🙄.

FBC that includes RBC, Hb and HCT (hematocrit). This is a good test to ensure iron is working properly also.

[FallingInReverse]

The plot thickens! This is one of those things that has subtlety/paradox which I think is what makes it confusing to summarize.

* So we know with Gilbert’s, the liver enzyme UGT1A1 has reduced activity, leading to higher levels of unconjugated bilirubin in the blood.

* But apparently mildly elevated unconjugated bilirubin is not a problem, and can even be anti-oxidant itself!!

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The catch: Energy and cellular demands… although bilirubin has antioxidant properties, its metabolism requires energy and cellular processes. In Gilbert's, the liver is already slightly less efficient in processing bilirubin. So if there is added strain (from iron overload, as an example) the iron overload is more likely to lead to oxidative stress in liver cells.

Further, with those energy & cell needs - of course our hypo will compound that due to our slow metabolism and reduced mitochondrial efficiency, straining any energy-dependent processes in the liver.

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The key point is that while bilirubin itself isn’t harmful, the underlying inefficiency of its processing makes the liver more susceptible to oxidative damage from other stressors

Note - this is not liver disease, and causes no structural or functional liver damage.

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Interesting reference:

journal-of-hepatology.eu/ar...

[Buddy195 Administrator in reply to FallingInReverse]

Thankyou. I’m trying to take it all in, but think it will take time to process!

[FallingInReverse in reply to Buddy195]

Read the section titled “The light side of Gilbert’s syndrome” in the link I sent.

I like Radds comment to make sure this is a Gilbert’s.

But if it is - in many ways it looks like there are positive sides to it to.