Hello.
I don't routinely have my bilirubin levels checked, but I am going to start now that I realise that high bilirubin levels are a sign that your liver is not coping with what it is having to process. I also need to get the bottom of this for my lovely daughter so she doesn't suffer as I have.
Now I know more about how Gilbert's Syndrome effects my body it makes sense that I had endometriosis, an ovarian cyst the size of a cantaloupe melon (removed by oopherectomy) and heavy, painful periods with clots. These are all caused by high oestrogen levels because my liver cannot process oestrogen like women without Gilbert's Syndrome - the oestrogen stays in my system and causes problems.
For anyone else struggling with this - I have discovered that with Gilbert's Syndrome, the body is unable to process oestrogen fully, so it gets returned to the body and ends up in the gut, causing loose, pale stools and faecal urgency. The body gets overloaded, I have itchy skin flare ups too. I am exhausted and have suffered very painful joints for 3 years now.
Every peri/menopausal woman with Gilbert's Syndrome should be...1. taking Calcium D Glucarate (helps liver function) and Zinc, but also potentially a probiotic with BIFIDO in it to help balance the gut flora that gets thrown off by all the oestrogen floating about your gut.
2. taking the lowest transdermal dose of oestrogen that you can to cope with your meno symptoms. Don't take oral oestrogen because your liver can't cope with it.
3. avoiding fat soluble vitamins like B3, A, K as they have to be processed by the liver and your liver is likely already overloaded.
4. eating no/very low saturated fat, your liver can't process it. Healthy fats all ok.
5. reducing alcohol intake to minimal amounts or none - so that you don't overload your liver.
6. avoiding taking paracetamol or ibuprofen (or any meds) unless you really have to.
7. avoiding high intensity cardio exercise as this causes bilirubin spike. Do weights, yoga and walking instead.
Progesterone doesn't seem to be processed in the same way by the body (the liver glucoridation pathway) so I am not sure why my first primary symptom was progesterone intolerance. I now take bio identical progesterone 100mg (1 x utrogestan tab) every other day, inserted vaginally (as recommended by Dr Louise Newson). This works for me. Not taking things orally reduces the stress on your liver. Perhaps progesterone was just another medication in a bodily system that was already struggling ... just too much.
GPs just don't know about this and are not interested. They just say come off HRT, but then you get all the night sweats, heart palpitations, etc that come with menopause. And if you don't take HRT you lose all the protections it gives a woman with regard to osteoperosis, Alzheimer's and heart disease.
The solution is not to come off HRT, but to find as many ways as you can to support your liver so that HRT works for you.I really hope this helps someone else. There isn't much research around Gilbert's Syndrome as medical schools routinely teach that there are no symptoms. Sufferers can tell you that there are indeed symptoms. Serious, life-altering ones.
I am still on my journey and will report back if I find out anything new on this subject and to let you know if I finally overcome my exhaustion, brain fog, joint pain and IBS symptoms - none of which I ever had before menopause.
Thanks for this forum.
Thanks for your kindness.
xx xx
PS Here is a really helpful podcast from Australia
https://www.fxmedicine.com.au/podcast/gilberts-syndrome-maria-allerton-n%C3%A9e%C2%A0shaflender
