high bilirubin levels

i had blood tests done recently ( january) and my bilirubin level was 28, in 2006 i was told i had a condition called gilbert's syndrome but there was no treatment for this condition. I have high cholesterol it was at 10.2 so my gp prescribed atorvastatin it is now at 7.2.I read on nhs website that you should not take statins if you have gilbert's syndrome, for sometime now ive been having terrible tummy pains along with abdominal swelling, my ankles and knees are swollen too. i had a scan done last month to rule out gallstones or cycts the scan results didnt show anything.

I have fibromyalgia. but for along time now i have been feeling unwell, I have IBS, headaches, dizzyness, nausea, tinnitus, high cholesterol, weight gain. I have had blood tests for thyroid but my gp only tested TSH and that was 2.59 and they say that is within range. I wondered if anybody could give me some advice on my symptoms and whether my bilirubin levels could make me feel unwell, I have no energy and feel tired all the time but i have poor sleep due to my pains from my fibromyalgia. 

6 Replies

  • Hi sorry to hear about your troubles britishlivertrust.org.uk/li...

    Hope that helps explain why your feeling way you do 

  • Hi. This sounds exactly like me! I went to the doctor recently as felt unwell and asked for liver function tests and my bilirubin came back high. It often is and I have been diagnosed with Gilbert's too (also investigated for autoimmune hepatitis) They say it is a benign condition but I can definitely tell when mine is elevated. However you should go over to the thyroid forum, your TSH is like mine was and you have lots of hypo symptoms, as I do too. I have also been diagnosed with fibro but believe my thyroid is the underlying cause. You need further testing, in some countries a TSH of 3 (which you nearly are) would be treated for hypothyroidism but you also need your T3 and T4 testing as they could be low. My TSH has finally now shown up as high 5.2 but as my other numbers are 'in range' I know it's unlikely the NHS will treat me (they don't treat unless Ths reaches 10) so I am going private as it's likely I have sub clinical hypothyroidism). Thyroid and the liver are linked too as this is where the T4 gets converted into the active T3. Visit the Thyroid Uk website and read up on their forum, it would be worth doing your own private blood tests and there is information there as to where you can get them done.

    MP x

  • Thanks for your reply. I did a private blood test last week and my results say I'm within range. 

    TSH.      2.64        0.27- 4.20

    T4 total   85.8     64.5 - 142.0

    Free T4     13.04     12 - 22

    Free T3.     4.26     3.1 - 6.8

  • Sorry. Forgot to mention I have been on thyroid forum and have had few replys agreeing my symptoms sound hypo related. I have lost count how many times over the years I have discussed my symptoms with different doctors even the surgeon that removed my benign nodule say my tsh is fine and my thyroid is functioning normally  but I do not feel well at all and havnt for years. I had glandular fever when I was 19 I am now 51 and I reckon IV never been right health wise since having had glandular fever all those years ago. After several blood tests I had done in 2013 and everything was normal my GP suggested that I have fibromyalgia and said that it is treated with pain relief and exercise, I find it very difficult to muster up any energy or motivation to exercise when I can barely function .

  • I know, I am the same. I used to run 10ks, now I could sleep 18 hours a day. Your blood tests are almost a carbon copy of ones I have had done. Your T4 is at the low end and many on the thyroid forum say their TSH needs to be below 1 to feel well. Did you do the test before eating as early as possible in the morning as that is when TSH is highest? I also did a thyroid urine test which showed very low T4 though bloods always show in range albeit low end like yours. It might be worth you doing that along with an adrenal test because your adrenals could be burnt out, mine definitely were. At least that way you would have more info and could supplement or self treat. I was so much better on nutri thyroid and an adrenal supplement, even started back at the gym. I saw Dr p and he advised on the tests and the supplements. However I am not feeling great again shown by my TSH and I think I need prrescription thyroid meds. Like I say my bloods showed all was 'normal' but are now showing high TSH. I think further tests and not ruling out thyroid just yet as your journey sounds so similar to mine. I was also investigated for lupus as I had a positive ANA. Then investigated for the autoimmune hepatitis. Eventually was diagnosed with fibro but I never believed my body could go so wrong for no reason. I have thought it was my thyroid now for four years but I do also think my liver causes me problems too. You sound the same. MP x

  • Is it possible that you could be double checked for lupus? I am diagnosed with this condition and it is a difficult illness, especially the systemic version, which is the one I have (SLE). It is poorly understood and it took me many years to get my diagnosis. I had glandular fever at 15 and was never right since. Was not diagnosed with lupus until I was 23! Lupus also fluctuates in that you have remission where the disease has periods where activity and inflammation are low. When it is active, I am exhausted,my joints ache, my hair can fallout and I get nose ulcers amongst a range of other symptoms..

    If you can go private try and get yourself to the London Bridge hospital as the country's specialists are based there (professor de cruz, dr Hughes etc). If you do have lupus, they will find it...remember there is a criteria to fulfil...there is no one single blood test to reach a diagnosis although your ESR will always be high.

    I'm now on here as I have what seems to me to be a painful liver... Swollen tummy, oedema in my legs, face and ankles... Liver function tests are normal but ultra sound shows fatty liver...I can't find anywhere that a fatty liver can make you swollen and in pain so trying to find out more....

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