trigger factor for GS

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I ddin't have any symdromes of GS until 4-6 years ago after I started and stopped taking amytripline. I strongly believe Amytripline trigger the sever symdromes that I am having 24/7. Anybody's experience could concur this?

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  • Posted

    Hi John,

    My son has GS and his symptoms seemed to appear after what we thought was a bout of food poisoning.  He was 16 at the time.  He has suffered migraines and sinus issues since he was 12.  Around the time of the food poisoning (?) he was also taking Endep as suggested by his GP to try to control the migraines.  I couldn't quite remember if he had stopped the Endep just before this episode of nausea and vomiting.  He thinks it was well before.  Did your symptoms come on instantly after stopping the Amytriptyline?  Can I ask why you were taking this drug?  Was your first GS episode severe or did you just gradually start to get symptoms of GS?  Do you have high Bilirubin?  My son's has been consistently high for over 2  years now - we had another blood test last month and it was 70.  What are your main symptoms with GS?  Have you found anything that has helped you to feel better?  We have been to so so so many doctors and specialists and it feels like we have made no progress at all.  We have connected with another GS sufferer in Australia and he may possibly be organising a study of people suffering from GS.  If this study does go ahead there will be a need for people to participate.  Would you be interested?  Thinking of you and hoping that your symptoms improve.

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    • Posted

      hi, annette,

      My first symptom, constant liver pain(tenderness) started right after I took amitripline(25mg) for a month for migraines. Other symptoms, brain fog, fatigue, indigestion, can't concentrate, starts to show up gradually. 

      My indirect bilirubin is 3 times of normal value.

      I live like a zombie everyday in the past 4 years. I don't want to live like this for the rest of my life.

      I started self medicate since alll the doctors just ignore my complains insists that it is benign. I think that what they learned from school/text book. Aslo chronical disease is hard to deal with.

      Fasting help me to get rid of most the symptoms but also cause me sever weight lost.

      echinacea juice helps a lot.

      I start milk thistle two days ago. I don't know whether it works.

       

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    • Posted

      Thank you for doing the rally suffer down in Austrilia. I am once the program starts the results will benefit many people around the world.
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  • Posted

    Your symptoms sound very similar to my son's, his concentration was once extremely sharp and ever since he contracted glandular fever, food poisoning and was diagnosed with Gilbert's Syndorme he has not been able to concentrate for longer than 30-40 seconds on one task. It has been very hard to treat because we are worried that any medication that is taken for the symptoms could make things worse due to Gilbert's affecting the liver. 

    The triggers for the symptoms do differ between people, my son gets severe bouts (2 weeks - 2 months) of nausea/vomiting if he attempts anareobic or aerobic excercise which has made it harder to gain weight. Fasting actually makes him feel alot worse.

    Pain medications do trigger symptoms as well, however, when he took Amitriptyline it didn't make things better or worse for him. Are you able to excercise? Which other drugs have you taken since the Endep? Have any made you better/worse? 

    You're definintely not alone with the feeling of being a zombie, there seems to be a lot of people who're incapable of working or studying full time and socialising with Gilbert's Syndrome due to a mixture of the physical sickness and the lack of mental clarity. 

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    • Posted

      I am not able to excercise at all due to extreme fatigue and tiredness..even I tried to force myself to take a run, I don't even sweat which a sign a liver doesn't well. I took amitripline on and off for two years. completely stopped more than two years ago...

      I really really what to do now....I am seeing my doc next week to do another bililrrubin test to make  a record to see how it changes.

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  • Posted

    Hi Annette and John

    The enzyme that is deficient in Gilbert's is responsible for the metabolism by glucuronidation of amitriptyline, so this makes sense.

    Interesting to see your comment about fasting helping your symptoms, John. Classically fasting is used as a test precipitant for raised bilirubin in Gilbert's. I found that weight loss helped me, and if I put on fat it increases my symptoms (itching, night sweats, feeling lousy on waking up in the morning) fairly quickly. Fasting generally makes me feel worse though - after a day or two of dieting I often feel pretty bad, especially in the morning.

    Regards

    Biometric

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    • Posted

      Hello biometric,

      Thank you so much for valuable reply. I noticed several great thread you posted here. I hope our discussions are on to something.

      The reason I was asking others trigger factors is it seems to me GS only show up symptoms at certain point of suffers life. I was fine ten years ago. It must be something trigger/wakeup GS symptoms.

      My rationale on fasting is my live lists it's ability to process bilirubin , or the ability to detox, which makes me brain foggy and fatigue, fasting doesn't introduce extra toxic into body so it makes me feel good.

      I am hungry while fasting.

      Kombucha helps me a little bit too. Some say it detox liver.

      Biometric looking forward to your comments/ help

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  • Posted

    Could it be something else as well?  The two people I know with GS also have hereditary haemochromatosis. Needs an Iron Studies blood test - not just iron.  Then if two levels are high, a genetic test.

    Symptoms are the same as what you are describing with the exception of Annette's son who suffers severe bouts of vomiting from exercise - unless he is pushing himself too hard.

     

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    • Posted

      This has occurred to me too. I am heterozygous for haemochromatosis, but then so are 1 in 10 Caucasians. Probably has a minor effect; my iron studies are perfectly normal.

      There is certainly a requirement for more than one factor to be pressent in order for symptoms to occur, as the main GS mutation (UGT1A1*28) is present in maybe 5% of Caucasians but the symptoms are far less common. Some research recently - a few papers in fact - suggests that more than one mutation must be present for high bilirubin levels to develop. I have the *28 mutation but also two others so I guess this combination is responsible in my case.

      The knowledge base is still immature. There may be a spectrum, with a single isolated mutation at the mild end and if several complete (homozygous) mutations are present the more severe form of adult high bilirubin, Crigler-Najjar type 2, might develop. There is at least one case I can think of offhand where a patient developed Crigler-Najjar type 2 after 30 years earlier being diagnosed with GS.

      I wonder also if mild intrahepatic cholestasis plays a part in some of the symptoms, particularly when abnormal LFTs develop. This probably shades into fatty liver disease; as I've written in posts before, my symptoms improved (a lot) with body fat reduction.

      Biometric

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    • Posted

      At risk of this developing into a long story, I will try to keep it short but relevant. This started in the days of pre google.  After 9 years of severe undiagnosed HH symptoms, I stepped sideways and one of my hips broke up - osteonecrosis from HH.  One of the pain killers I was put on was Tramal.  In a couple of days, sweat was pouring out of my head and face constantly.

      Tramal was put down as the cause.  In severe pain, I persisted and 4 years later I had my hip replaced, then the 2nd one went, more Tramal.  Eventually I was able to go off Tramal.  The severe heat in my head persisted.

      Thyroid and menopause (but I was on HRT) was the alternative thoughts  but came to nothing.  Eventually 6 years after onset, I sought another dr's help - straight to an endocrinologist.  A small tumour on my pituitary gland was found, causing excess prolactin.

      The pituitary gland assoc website said women should take oestrogen supplementation with a prolactinoma but did not say why.  I researched that and found that excess prolactin made oestrogen ineffective via the 5-alpha reductase enzyme - so I had severe menopause symptoms despite my supplemented oestrogen that I was already taking.

      I was prescribed Carbergoline to reduce the excess prolactin and the tumour.  And guess what, the severe head heat and sweats stopped.  Google prolactinoma and it will not tell you that it causes excess sweating or even menopausal symptoms.  It was all indirectly, and my intensive research paid off.

      At the same time, the endocrinologist discovered I had severe arrythmia.  Off to a cardiologist, 24 hr holter test confirmed 21,000 extra heart beats in 24 hours.  I was put on beta blockers.  Almost immediately, my brain went foggy, could not focus, think, concentrate, brain not talking to my bladder so I was constantly peeing myself, could not articulate more than 2 words.  The words got lost between my brain and my tongue.  Tried to drive to dr but found I was letting car drive aimlessly as I could not remember where I was going.  Went home.

      Next trip, kept reminding myself I was going to dr, then discovered I could not remember how to get there.  Then discovered I could not read traffic lights.  Went home and have not driven since.

      The beta blockers were dilating my blood vessels in my brain and letting the iron particles in (from my HH).  Put onto calcium channel blockers which made my prolactin sky rocket to >4000.  This cardiologist knew I had HH and prolactinoma.  (The b*stards are trying to kill me, lol!)

      I took myself off the heart blood dilators and bought a heart monitor strap that runners etc use with a wrist watch monitor.  Having taken part in a bio feedback experiment at my university, I learnt to 'think' my pulse down low or high.  So when my wrist monitor indicated my heart beats were very rapid (or even too low at times) and beeped at me, I concentrated on thinking it to a normal level.  The wrist monitor provided the bio feedback which helped me know what I was doing.

      It took years for me to get my articulation back and first thing I did was address a group of Rotarians to talk about HH, the lack of knowledge and diagnosis and complications from it.

      As a result of the 9 year delay of diagnosis of HH, more and more health issues are happening but I have to look after myself and ensure I am getting appropriate treatment.  My heart is affected but hard to find someone with sufficient knowledge of what HH does to the heart.

      But the moral of the story is that a lot of things are not straight forward, and indirect circumstances can be at work affecting your health.

      Have you talked to your country's GS association?  They may be able to give you the clues.

      I hope this helps.

       

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    • Posted

      Fatty liver disease is very much a problem in this modern world of hot chips and cola with everything.  Some drs are telling people they have haemochromatosis when they are only heterozygous with a high ferritin iron level (caused really by fatty liver disease).

      A couple of ladies in my support group in that situation decided to do something about it, and stopped eating bad fats, sugars and starches (potatoes, bread, pasta, rice, etc.  You don't have to starve, you can eat heaps of other stuff.  Their ferritin iron levels dropped by the hundreds and they discovered their waists again.

      Personally, too, I think having had glandular fever can cause problems later on.  Those who have had glandular fever in their distant past, seem to have worse HH symptoms.  As it affects a lot of the organs that HH can affect, it must weaken the barriers to those organs, providing a pathway for iron loading.  My personal opinion - I have not come across any research on that.

      And as GF affects the liver, GS might come into that.

      My previous response to John is being moderated as it looks like a word I used is too naughty and is being blocked until cleared (or not!).

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