Gilbert’s Syndrome

[CecilyParsley]

Hi everyone, just making some notes in preparation for my new Rheumatology appointment and I came across something I had missed. Apparently I have Gilbert’s Disease hyperbilarubinanemia. I am flabbergasted as everytime I mention that my eyes are quite yellow my GP tells me that I am imagining it. Well clearly I am not. Has anyone else here got this condition? It causes me no problems

[jane1964]

Hello I have think if I were you I would ask my GP to refer you to see a hepatologist to get this looked into.I see a hepatologist and a rheumatologist and they cooperate in my treatment as the liver problem limits some drugs the rheumatologist wanted to use.I would definitely want this looked into.My liver disease is different but the symptoms are hard to distinguish from my other disease but include fatigue and itching hands and feet now on treatment I have few symptoms but nevertheless I unfortunately have cirrhosis.Any liver problem needs addressing to avoid damage to your liver .The good thing is many liver problems can be treated and the liver will repair itself.Best wishesJane.

[CecilyParsley in reply to jane1964]

Thank you Jane. I am relieved that this condition is not one that adversely affects me but it is just ludicrous that it has been lost in the small print of a report. Both myself and my husband have raised the fact that my eyes are yellow tinged at times but been told we are too anxious? I am pleased to hear that your treatment is going well for you xx

[Wendy39]

Hello CP

I am afraid I cannot help with the Gilbert's Disease. Sounds like it should be taken seriously.

I always tell the people in my group to get their medical notes. Both me and my sister found things in our records that we hadn't been told about our own health. It really is shocking. I now ask for all letters from Consultants etc to be copied to me and I collect my blood results from the GP too.

It always amazes me that me that Doctors still hide things from us.

Plus, in your situation, you have been gas lit by your GP about a very real symptom of a very real disease.

They should be ashamed of themselves. But they never are.

I REALLY hope that this appointment with the new Rheumy surprises you and is positive and I am very glad you are going to be so well armed with all of this knowledge!

Wishing you lots of luck.

Wendy xx

[CecilyParsley in reply to Wendy39]

Thanks Wendy, my heart is in my boots to be honest. Now I have comments from one Rheumy that I read things on the internet and thought I had it ( it was Lupus UK that he told me to contact and I do in fact have APS), I have another Rheumy stating that I was desperate to have a diagnosis of Lupus ( I have had that three time’s and twice now had it taken away and who in their right mind would want it?, then the latest who wrote that I have a poor view of the medical profession especially when they try to give a differing opinion, and she has simple fibromyalgia and gets very anxious about her eyesight when there is nothing found?? Honestly if I did not know it was me they were talking about I would think it was someone with a serious case of Munchausen syndrome . And if I dispute this, I will appear even more unbalanced. I am very close to giving up and just not seeing any of them to be honest. My latest bloods are of concern too. Although I take 1200IU Fultium D daily my Vit D is still low. My calcium is low, my folic is low even though I take 5 mg folic acid daily, my Haemaglobin is very high, my leucocyte are always low but my B12 is 2000!, which is ten times what it should be. My GP just says we will run the tests again next week but they are normal for you? Gggrr

[Hidden in reply to CecilyParsley]

Please don’t give up on doctors CP - you have conditions that need acknowledging and monitoring and I’d look into challenging the worse offending letters and misdiagnosis’s.

There’s no hurry - bide your time - just make sure that you send any letters of complaint to individual doctors or to your health authority/ health board electronically so there is a record and they can’t deny receiving it.

I had some help with this recently through the officer representing patients in my area CAB. She talked through my complaint with GP practice with me and then drafted a letter for me to tweak as I saw fit. This helped a lot as I struggle with processing where it comes to organisations and systems. But I’ve written many letters to my doctors over the years, challenging their assumptions, with the advice of friends here and trusted family members.

I have noticed that all clinical letters about me or to me , even from neurology and from the vascular dr twit - are very careful in what they say now! There are a few I could pick holes in and if a consultation has gone very badly eg gastro in November - I don’t ask for copy of the letter as I don’t want to be needlessly distressed by reading their crap! However I do report back to my GP what I think or what they say to make it clear that I think this consultant has “bad doctor” written over their names. Generally my GP seems to like me and has even confided in me on occasion so I think she trusts and is interested in my opinions about clinicians I’ve seen.

I have also used the “I want Great Care” website to convey my negative and positive experiences when I feel strongly enough.

I know this writing of letters takes up lots of time. I admit I’m not paying for my nhs records as Wendy suggests because I’m more thin skinned than I care to admit and I know from experience that a lot of comments would make me angry or hurt or change my relationship with doctors I otherwise get on perfectly well with. A lot of problems are in language used by the medical profession - it’s like learning a foreign language!

bbc.co.uk/programmes/m000dpkc

But nonetheless I have found that it’s really cathartic to write to the relevant doctor or go through PALS and explain the impact a clinical letter or a bad experience or a terrible GP comment has had on me. And knowing that I will write a very acerbic letter that pulls no punches and cc any other relevant clinicians - means that most of my doctors have thought harder about what they say and this in turn had improved my overall care greatly I think. Xx

[CecilyParsley in reply to Hidden]

Thank you so much for taking the time to respond to my self pitying post. When this wave of fatigue eases I will definitely consider writing a complaint against the last Rheumatologist . He describes in his report how he gave me a thorough examination on two occasions and that I reacted painfully in all 11 Fibromyalgia trigger points. Now I know that my short term memory is not good but my husband accompanied me on the first occasion and my carer on the second and that man never put a finger on me let alone examined me. Pure lies. My husband is absolutely livid. He lied to support his diagnosis. Xx

[Hidden in reply to CecilyParsley]

Ach there’s nothing worse than a liar! Definitely challenge this as he’s clearly caused you trauma and this needs addressing.xx

[lupus_paradise]

Hi CP, I was diagnosed with Gilbert's Syndrome a few years ago. It doesn't give me any symptoms or any problems at all. It's diagnosed by an excess of bilirubin in one's blood but no other signs of liver problems. Not sure if that's the same as Gilbert's Disease but sounds similar.

Interestingly I only found out by looking at my own test results and asking GP. It wasn't volunteered to me. I am an advocate of having copies of your tests and doing background research so that one can have better informed discussions with one's doctors.

Good luck.

[CecilyParsley]

Thank you yes it is the same thing and the thing that concerned me is that what I read said not to fast or follow a low fat diet . I tried a juice diet and have never been so violently sick in my life. Plus I take aspirin for APS. The only symptom I have is whenever I get an infection the whites of my eyes go yellow which I have been told that I am imagining.