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Elevated SHBG via Cirrhosis induced via HH

Posted , 4 users are following.

tomironoverload
tomironoverload

Hi,

Has anyone experienced elevated SHBG and are they being treated for it? Apparently this Protein binds to your Testosterone and renders it inactive to cells.

Would be interested in your responses.

Thanks,

T

1 like, 4 replies

4 Replies

  • QUICK-FIT
    QUICK-FIT tomironoverload

    Posted

    Hi Tom your post caught my eye as i have been diagnosed with HH 3yrs ago and after 20 pints removed, still feel terrible (worse than how i felt when i attended doctors for Fatigue) But long story short, i asked to have my Testosterone level checked after matching up some symptoms and sure enough my result came back as very low. I was put on the gel for 3 mths and never been prescribed it again. I had a blood test done to check my level in the 3rd month which as expected came back fine. I have slumped a great deal since then so i might just go back and demand another test. Thanks for the reminder. Im sorry if this reply is usless to your question, as i dont understand what SHBG means. But i hope your ok and nothing that cant be fixed. thanks t.c from quick-fit
    • tomironoverload
      tomironoverload QUICK-FIT

      Posted

      Hi, Thanks for responding, I wish I was ok, had heart failure at 24 after feeling very ill for many years, after a month in Hospital I got diagnosed with type 1 and type 3 Hemochromatosis, my Ferritin was just under 8k, subsequently dx with Type 1 diabetes, Cirrhosis, Hypopituartism, Hypogonadism aka Low T, Dilated Cardiomyopathy, Growth Hormone deficiency, Osteoporosis, the list goes on, liver cirrhosis can raise your SHBG sex hormone binding globulin levels to crazy levels, it's a protein that binds to test and renders it non bio available so useless however ur test levels may be normal so an SHBG blood test should always be run with a testosterone blood test, lots of Endocrinologist miss this trick, does your medical practitioner indicate your low T was due to HH, how old are you and what was ur Feeritin at dx, I've been diagnosed 10 years and always been close to the UK HH society so have a decent level of knowledge,

      Thanks,

      Tom

  • QUICK-FIT
    QUICK-FIT tomironoverload

    Posted

    Hi Tom, thanks for your reply. I must admit im left stunned at how bad this is for you.

    My levels were just under 800 at dx and its taken me 40yrs.

    I was given the impression that mine was high and dangerous and i had to drop a pint every 2 weeks. I have had at least 20 pints removed and it takes about 3 months to elevate just over 50 and i return and drop another pint. My doctor said that low T can happen with HH but only after i pushed to get mine checked after months of depression,Fatigue etc etc. I have been to the endo-clinic and had a short synathen test, got told everything was good and thats when my doctor informed me that my Testo-gel was being stopped as my levels were back within range. Im still fatigued but they have sent me for a sleep apnea test and now i got to go and get some kind of gum shield to wear at night to cut down my snoring. They somehow believe this will help me but im skeptical to say the least.

    I know how i feel with my experience but i feel terrible as it sounds like you been to Hell and Back 6 times. My oldest son just turned 18 in March and he has been complaining of a Sharp pain on his right hand side abdomen, if it was lower down i would have suspected appendix, but i finally convinced him to go and get checked out and he appeared home with a test-tube for a urine sample. A week later im still on his case to deal with it. Been on his case regarding HH but its like talking to the cats lol. Sheryl from Australia is very very clued up on this Disorder bro, and with your experience i believe this is the best place for our other blood brothers & sisters to learn about it. Are you coping ok Tom cause you got a lot on your plate for your age man.?  Quick-fit

  • sheryl37154
    sheryl37154 tomironoverload

    Posted

    Gee, I thought I was going crazy.  I thought I had responded to this but can't find my response.  Then I remembered that your first query was in the "Liver" forum and yes, there was my response.  Anyway, will repeat -

    "

    From your pen name, I take it you have haemochromatosis.  I found some interesting info in Wikipedia describing SHBG.  Look at "Control" and "Conditions associated with ..." and see if any of that information is relevant to you.

    Both myself and my husband have haemochromatosis and he also takes thyroxine which may explain some things for him."

    Now that you have posted more details, I too am knocked out by what has happened to you.  All the more reason for everyone to be screened for HH at an early age.  We in Australia are fighting for this.  Cost was blamed, $100+ was quoted, but I found that our pathologists only charge about $36.  At the very least, drs should do Iron Studies on everyone on a regular basis.  $27.95.  Iron Studies are a window to a lot of health issues and it is rarely done, except by very good drs.

    Tom, according to Wikipedia, you certainly have a number of issues that raise SHBG (Sex Hormone Binding Globulin).  With those pituitary gland problems, have you had an MRI?  HH can cause a tumour on the pit gland causing those hormones to go out of whack.  Even the smallest tumour (microadenoma).  I ended up with one causing excess prolactinoma and it caused my oestrogen to be ineffective, throwing me into 6 years of hellish menopause before I was diagnosed.  Carbergolin eased it immediateIy.  Usually when one pit gland hormone is affected, another is out too.  I had slightly elevated Growth Hormone but not enough to be treated on second test.  (I wonder what it would be if I had a third test!!!) I am hoping you have been given medication for these.  You are probably sick of popping pills.

    I don't know enough about Type 3 HH except it causes major onset of HH before 30 - I will have to read up on it.  I had severe symptoms for 9 years before I was finally diagnosed after one of my hips broke up from osteonecrosis caused by my blood being so thick with iron.  I hope the UK HH org is fighting to get screening.  Trouble is, too many researchers preface their research report with 'not many people get symptoms' or something like that.  I have not come across anyone yet with HH who does not have symptoms - and if they don't, I would say - YET!  So drs ignore it.

    With GH deficiency, are you overweight?  I have found that people who have fatty liver (and I know you are way past that with cirrhosis) benefit hugely by cutting out sugar and starches (that means potatoes too!).  I am underweight, muscle loss, but feel better ellimanating sugars and starches (since found that we with HH do not digest them very well) and have been trying to find an answer to extreme fatigue.  HH affects the hypothalamus too, which sits just above the pit gland and I suspect now that it has an effect on fatigue.  Nothing we can do about the hypothalamus except keep up the venesections.

    However, my blood is often so thick and black, even though my platelets test are normal, they have problems venesecting me.  I can't get any answers from drs.  So I have decided to try aspirin to thin my blood on my own accord.  After less than a week, I noticed a reduction in my fatigue!  I had been referred to rehab to try to gain strength and it was very hard going, using up time I no longer have due to having such short days, and making me want to sleep more.  However, since the aspirin has kicked it I actually WANT to do more.  If that is the answer, then many years of my life have been wasted unnecessarily.

    Anyway, first mention in print, still under study.  It is 100mg coated so it does not break down too early and I take it with breakfast.  I accidently missed two days running and really felt the difference.  This is more info for Quick-Fit.

    Tom, with cirrhosis of the liver, it might not be appropriate for you - check with dr.  Regarding testosterone, my husband has an injection every three months which work better than any other medication.  But I don't believe that once you got to the normal level, that it stays there with problems such as yours either.  Also have your Vit B12 and Vit D levels checked?

    If low, injections are best for Vit B12, and Vit D3 forte drops are better than wasting money on tablets.  Some people just can't absorb Vit B12 from tabs either - my husband was in that situation too.  I was amazed at what a deficiency can do to the body and the brain.

    I really hope you can get some answers that lead to some better health for you.  You have to continue to be assertive with your drs to make them come up with some answers.  Get copies of your test results if you have not already so you can keep an eye on them yourself.  Good luck and keep talking.

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