My GP doesn't listen. Would an endocrinologist be able to help?

I was detected Gs about 15 years ago after suffering a viral hepatitis.Now i am 38 and recently again consulted gastroenterologist for relapsing episodes of jaundice and gastro issues.My gastroenterologist reconfirmed it as GS which is not surprising at all but he suggested some tests which revealed low vitamin B12 & D3 count.At that particular institute i met with some patients of GS having same vitamin issue.it serms to be really interesting.As per advice i am taking vitamin B12 injections &D3 suppliments for last 1 month.my heart palpitation problem has gone off totally.muscle cramp edpecially cough muscle problem healed a lot.you will find that low vitamin B12 symptoms and Gs symptoms having lot of similarities.So please check these two vitamin counts along with thyroid profile.eat small meals and dont skip meals.take low fat diet and plenty of vegetables.drink plenty of water.include at least one pomygranate in your diet and it will definitely keep away the symptoms.at least i have felt it.and dont panic.waiting for your reply.

Hi Lian

Sorry to hear of your health problems and these concerns falling on deaf ears.

I'm in my late 50's and was diagnosed with GS at age 30. 

GP's do not understand GS and if I ever mention something about my GS, they merely wipe it off and say something to the effect, "that's nothing".  A gastroenterologist or liver specialist are probably the only ones who understand GS.  But then, if they haven't had GS themselves, they still don't fully understand how debilitating it can be.

I get absolutely exhausted, virtually bedridden after a virus or missed sleep over many nights.  Post virus or medical procedure with an aenesthetic is likely to really knock you around.  It does with me, and I find all I can do is have days off in bed.  Even showering or making meals is absolutely exhausting during this time.

Lian, you mentioned you have palpitations.  Do these occur often?  As it might be worth seeing if you have AF (Atrial Fibrillation) seeing your mother had a stroke at an early age.  Sorry, not trying to frighten you.

I would say, you would be better off cutting your working hours down to part-time, not fulltime, as the exhaustion from these hours is only adding to your condition. It's extremely important not to overtire yourself as it will be hard to get yourself back into physical condition.

Being exhausted does make us eat often as our bodies need fuelling.

Try and increase your iron levels, although my gastroenterologist said even if I ate a handful of parsley per day it wouldn't be able to be retained in my body. 

Lian, don't skimp on meals, look after your body, listen to your body when it's exhausted and make sure you rest as much as you can; I know it's not easy working, running a house and looking after children.  But your health is extremely important to your family so take care.

Regards  Andree

Hi Lian,

My GS symptoms (mainly fatigue) came on around the age of 30, the same time as I suffered from Candida.  My GP is generally pretty good but is totally dismissive of GS causing my fatigue, if I tell someone that I don’t drink alcohol or exercise too hard because of my GS and fatigue they look at me like I’m a hypochondriac.  My wife is a naturopath and one thing I remember her saying is that a lot of illnesses originate from the gut/digestive system (GS obviously doesn’t originate here but candida does and I believe with GS you will feel the symptoms more if your gut is out of balance).  Definitely if I’m not eating well my symptoms get worse.  She also researched further into it and there was something to do with the enzyme(?) that doesn’t perform that well for GS sufferers also deals with the stress hormone, so if your stressed, physically or mentally it can make it worse and is almost like a snowball effect.

I also get palpitations and never thought there was a link with GS, but it is only when stress and/or other triggers are introduced (alcohol, coffee, over exertion). 

I am still searching for answers but this is what I find trigger my symptoms:

Poor diet, mild dehydration, lack of sleep, stress, physical exertion.

To try and stay level I try to manage my diet, I bought a liver cleansing diet book and try to stick to a lot of the principles in that without sticking to the exact diet.  I drink 4-6 litres of water a day (this is a big one for me and I find it helps heaps, before discovering this I would have been 1 litre tops).  I try and get 8 hours sleep a night, I find if I’m fatigued I sleep really well (as long as I’m not stressed) and will need 9 hours.  I exercise daily but do not push myself to exhaustion.

I hope this helps

Jason

hi there, I know exactly how you feel and yeah it feels unbearable. Have you had your sexual hormone levels checked at all I.e. Testosterone and estrogen. There's some evidence that points to the gene that causes the bilirubin spike to be related to a sluggish phase 2 liver detox when it comes to metabolites of estrogen and certain toxins/drugs. This would explain the antibiotics and I had the same reaction. Calcium d glucarate has been shown to help people with this since it basically does what our livers can't do and helps level out our hormones and toxins, but I would advise being tested first just to make sure. Look up symptoms of estrogen dominance and tell me that the symptoms don't fit

Hi Lian

Sorry to hear about your symptoms. I'm a 50-year-old surgeon who was diagnosed with Gilbert's about 25 years ago, since confirmed genetically. After decades of intermittent symptoms typical of those on this forum I started to feel worse over the last couple of years. After aggressive investigation that I should have arranged years ago (and after being dismissed as 'only GIlbert's in the past by a hepatologist) I found finally found that dairy allergy was the causative problem and the Gilbert's was a (genetically-confirmed) red herring. Now normal, and all the horrendous symptoms I put down to GS have now resolved.

I'm bothering to write because I suspect there is an underlying cause other than GS in many patients. One of my secretaries had very similar symptoms to me, and we found she had coeliac disease.

Neither of our diagnoses were straightforward, but once we found the right tests everything fell into place. An interesting point is your mention of a low phosphate level, which can be a sign of malabsorption and it would certainly be worth checking a broad range of bloods and perhaps other investigations to look for anything out of the ordinary. The same goes for other contributors with nutrient deficiencies.

In my own medical practice (not GI surgery), I always tell patients that there is a cause for everything and we just have to find it - symptoms don't just happen for no reason. I never give up on a patient until we've identified the cause of their problem and would have thought that pretty much the same thing applies with the GS-type symptoms we've all experienced - it was certainly the case for both me and my member of staff. A relatively low bilirubin alone is probably going to be asymptomatic in the great majority of people and I wouldn't be happy unless I had ruled out another cause.

Good luck

Biometric