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

Digestive health
1

Hi im new to this forum. My name is Lian (Leanne but spelt wierd). Im 37 and a Mri radiographer who works 12hr shifts. Im really struggling at the mo. My days off are recovering as im so tired.

Ive been plagued with GS symptoms since I was 19. I suffered with gastroenteritis twice in my first pregnancy and dont think ive ever recovered. Since then i have 'episodes' of illnesses that wipe me out for a month or two. I have reacted terribly to antibiotics ever since. I suffered with systematic candida. My symptoms of my most recent 'episode' is palpitations, blurred vision, shaking and diziness and general lethargy. My limbs went so weak. My GP said it was probably viral but sent me to a TIA clinic as my mum had a stroke at 38. I wasn't convinced I'd had a stroke, but i went with the hope they would do more thorough tests. Surprisingly they were 'fine' except my high bilirubin. My blood pressure was high but put down to 'white coat'. Its just a vicious circle and im left frustrated that doctors dismiss my GS and imply im a hypercondriac. When i try to explain GS is symptomatic, they refuse to listen & can be quite patronising . My phosphate level was low, again dismissed as not severe enough, which it could be contributing to my symptoms.

I have found this site as my boss, husband & family all think its stress as 'no abnormal results'. Im not stressed, im a calm person but feel let down that no one can help me. Ive put on 2 stone as i feel drained and don't exercise due to feeling weak & achey.

Im convinced my GS is related to hypothyroidism or parathyroid related but I just can't get passed the GP gatekeeper! Is it worth going private to see an endocrinologist? Has anyone else managed to get their GP to take it seriously? Any advice would be appreciated thank you.

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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.

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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

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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

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Hi Andree thanks for your reply. I would love to go part time but financially that isn't an option. I do get exhausted after any minor ailments. My 17 & 4yr old keep me busy on my days off. I think i need to slow down to recover properly.

I had an 'mot' when i went to the TIA clinic including mri, ecg, heart echo & carotid doppler, all ok. Im going to cut out caffeine to see if that helps.

Cheers

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Hi Jason thanks for your reply. Im going to stop caffeine. I think hormones are affected with GS and may be the sourch of my other issues. I will take your advice on upping the water intake. Im constantly thirsty no matter how much i drink.

I have been going to the gym when Im not exhausted. Once i feel better I'll go back but take it easy.

Cheers

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Hi Lian,

one other thing I forgot to mention was apparently the same enzyme was responsible for breaking down preservatives, so I try to minimise preservatives in food.  Good luck.

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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

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It seems pretty obvious that this woman is overworking herself; working full time and 12 hours per day.  Once she severely cuts back on her working hours her GS will settle and so will her other health problems.

 

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Hi I do work hard but I have had these symptoms for the last 4yrs. Only went back to work last year. Thanks for your input. I appreciate all comments.

Im looking into all aspects to improve living with GS.

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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

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Hi Biometric, thanks for that. I am determined to find a cause for these symptoms. I have been fobbed off numerous times. Im feeling a bit better this week. Im at the GP this week armed with a list of reasons with my past history as to why I should be tested for thyroid, allergies, vitamin & mineral deficiencies.

Its interesting considering malabsorption and wonder if something underlying may be preventing me from doing so.

A woman my age automatically thinks hormones are to blame. As the symptoms have been more severe & frequent since my second child.

Im even going to the dentist to replace my long over due amalgam fillings.

I want to be able to find the cause and sort it & get on with my life.

If more doctors had your mindset there wouldn't be so many people misdiagnosed. Its too easy for GPs to push antidepressants on to vulnerable people.