Still desperately trying to sort myself out and am feeling really angry today following the latest 'report' from an endocrinologist who, despite my ongoing symptoms of ill health, claims she cannot help me and doesn't want to see me for another year!
Despite her brief as an endocrinologist to evaluate my thyroid or possible Cushings and look into the adrenal adenoma I have she insists on looking at other things which is driving me mad.
I have all the usual issues that so many of you on here have with this ongoing problem.
I believe that my situation was made a lot worse by the lack of diagnosis of a serious lactose intolerance which left me housebound for almost 20 years, doctors as ever preferred the term 'irritable bowel' and did nothing.
I have had problems with type 2 diabetes, blood pressure, high cholesterol, triglycerides etc for years, I will not take statins etc which is a bone of contention with the endocrinologist. My esearch tells me this will make things worse and is not the best course of action for people with thyroid disease.
Having discovered my lactose intolerance I have, at a stroke, eliminated all the shocking bowel disorders I had to live with for so long.
Back in the 90's I believe I should have been put on thyroxine but instead was put on HRT, this has been a disaster and I now think that this threw my hormones into imbalance. Something I am trying to address but with no help or support it is very, very difficult.
Since way back in the 90's I have had very low sex hormones, Testosterone undetectable, Androstenedione and DHEAS undetectable, SHBG always very low. I have asked and asked the doctors to look into this without any success whatsoever. Now I have been looking into it some more and have discovered that low SHBG is far more serious than the doctors seem to accept and could provide an explanation for my problems.
•Low SHBG is a Key Marker of Cardiovascular Disease, SHBG levels have an important relationship with nearly every biomarker of cardiovascular disease, from C-reactive protein (CRP) to arterial calcification. Low SHBG is also associated with elevated triglycerides and low-density lipoprotein (LDL).
•Low SHBG is associated in the cluster of conditions known as the metabolic syndrome, which encompasses obesity, insulin resistance, lipid abnormalities, and chronic high blood pressure.
•SHBG production is strongly influenced by sex hormones, increasing in high oestrogen states and falling in high androgen states. Production is also affected by age, corticosteroid status, thyroid status and other factors.
•Concentrations are commonly low in polycystic ovarian syndrome, contributing to the excess androgen effects in this condition. Low concentrations of SHBG in obesity, hypothyroidism and acromegaly may influence total testosterone concentrations indicating the need for an assessment of free testosterone concentration.
What I cannot find out as yet is how to raise SHBG levels other than take green tea and soya! Anyone know anything more about this aspect?
I have a lousy endocrinologist but a great GP who has agreed to checking the status of my sex hormones, intrinsic factor, homocisteine and thyroid anti-bodies but past experience shows me that I'm not over the hurdle yet as the lab can sometimes refuse these tests. I can't afford to go private yet so am hoping we get them through.
I am quite horrified by what I am reading about SHBG and I would love to know if anyone else has knowledge of this aspect or could point me in the direction of more research/info
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What ever you do dont take Soya as its one of the worse things to eat when you have thyroid problems.
Your question interests me as I, only recently, had a hormone test done after a rather large ovarian cyst was detected. ALL my hormones where at rock bottom which the doc said was normal as I am post menopausal, haven't asked any questions on this site about this as I didn't think anyone would be able to help so will watch your replies with interest.
Sorry I couldn't help much but if I come across anything I think might interest you I will pass it on.
Thank you so much - I have to go out in a mo but will look into it when I get back later. I think I might be onto something with this - but who knows??
Was just going to send you another link which says "So what foods were associated with increased SHBG? Rice, green vegetables, meat and fish" and "And what foods decreased SHBG levels? Wheat, millet, sorghum, other cereals, legumes, corn, carrots".
Heres the link but I must warn you it needs a bit of brain power (not an easy thing when the old brain fog is present)
Just a pointer, if you want to reply to someone in particular, you need to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.
Louise
x
I am a 54 yo male, and Disabled with chronic pain, the Opiates I have taken for many years have had a chaotic effect on my hormones generally, sex hormones in particular, opiates are a common cause of Hypogonadism. I am on Testosterone Replacement Therapy, for me that means I make TOO MUCH Oestrogen, which I have to control!
My SHBG is also low, and as you say, it is NOT a good sign, although the good news is, get thyroid issues under control, and T3 in particular is known to raise the levels. It is also an indicator of Metabolic syndrome, which I have (sounds like you do too!) Metformin as prescribed for diabetics is good, but you don't get it prescribed in the UK unless you have actual type 2 diabetes. I self treat,( it's cheap!) you mention diabetes, so make sure that Metformin is in your treatments, unless there are reasons why not. I also self treat for low adrenal output (not your problem by the sound of it?) and with NDT too. There are supplements that help lower homocysteine which might well be worth looking into too. Self treatment is not for everyone, you need to do a LOT of research, but as Doctors know nothing about so many common issues, it has left me no other alternative.
I have controlled both my weight (lost 40Kg but I am still not low enough!) and other issues very significantly with a Low carb diet (Low Glycaemic Load in my case), although thyroid issues are a bit of a battle, and I have Testosterone replacement, although (I KNOW!) there are other issues not fully resolved. Thyroid levels often also have a significant impact on Triglycerides, but low carb again helps that A LOT! It's not an easy step, but it has been the most significant impact on my life of any measure I have taken.
There are online groups for support for men in this sort of situation, there WILL be similar places to get advice for women needing Hormone replacements, I would recommend you try to find them, (Google is your friend!). Medical practice in this country was making me MORE sick, and it was only by following measures used in the US that I got anything like well, although I can't pretend to be perfect, but I have certainly resolved some issues!
I'm so sorry to hear about your problems and can really relate to them. I've had a lifetime of chronic ill health sue to a thyroid condition that began in childhood. Always misdiagnosed and badly treated, I've found endocrinologists and other specialist to have little to no interest in my symptoms. I'm really angry about it all at the moment as I was diagnosed with 'irritable bowel' years ago, this has led to years of severe disability on those symptoms alone. I finally diagnosed myself with lactose intolerance about 18 months ago and cured myself of 'irritable bowel' overnight!
I am really worried about my SHBG and other sex hormones having been so low for so many years, and yes, metabolic syndrome or syndrome X is probably one of my complications. My GP has agreed to re test all these levels and if the lab play ball we can look at the results and see if we can work out which are out of balance.
I have been offered Metformin but refused, if I accepted the meeds the doctors want to prescribe I would be like a walking chemist and I would rattle! I am certain that my problems are endocrine related but feel very alone in trying to sort them out, I think I was born with a rogue thyroid - hyper at age 11 and a lifetimes ill health and many misdiagnosis since.
I am concerned about my adrenals and do have an adrenal adenoma, if I had no symptoms I would not be so worried but…I have been tested for Cushings several times, I did get 'pseudo cushiness' due to being prescribed with dermovate for psoriasis. Cyclical cushiness is still an option, every doctor I have seen has suspected cushyngs but when tests come back normal loose interest and refuse to address the other issues. It may still be this at the root but I hope not.
I am getting homocysteine levels checked as my GP has agreed to do this, I am hoeing they will be okay as I take metholcobalamin 5,000 and ubiquinol daily, I am sure I had a B12 problem but took the meeds as soon as I worked this out - thus rendering tests unreliable.
I did Atkins for years with mixed results but now do the alternate day fasting which I find much better and have lost a stone in weight, it's now stopped weight loss so may have to get tougher with it!
I use the net a lot, it is not easy, there is a lot of misinformation out there - but without it I wouldn't have discovered so many things.
Really hope you manage to get all your issues resolved, the state of endocrinology is shocking and I have no idea why patients with so many serious problems are just left to rot, it's all so wrong.
It looks like the one drug you have refused is the one and only drug that might be worth taking among of ALL the pharmaceuticals available! All other diabetic treatments cause weight gain
It is the ONLY drug reccommended by the Life Extension Foundation in the US due it its benefits, and as it is out of Patent, it means it is cheap and not making drug companies huge sums of money!
I will look into it again. To be honest I have refused most drugs because I know that whatever is going on is related to my endocrine proble, sort that and it will all get better.
Of course what I hadn't properly banked on was the fact that all endos I have seen to date, and there have been many!, seem to have little to no interest in helping me get to the bottom of the matter.
I believe that my diabetic test has gone up rather than down since coming off Atkins and moving to alternate fasting (which it shouldn't have done - bah!) I will wait a short while and have it retested.
I'm looking at this info with interest and will do some more research over the weekend, does taking metformin mean you can have a 'normal' diet? what I like about the fasting diet is that I suffer like crazy with no food every other day but can eat more or less what I want on the eating day.
I intend to continue with B12 and have also added Folic Acid and B6
Well I am not diabetic (yet!) I mainly suffer insulin resistance and reactive hypoglycaemia, getting on to low carb did a LOT to improve that, getting testosterone sorted helped very much too, and improving adrenals and thyroid even more, so with Metformin too, that I am now able to eat carbs without any significant effect, other than the fact I gain weight VERY easily if I do, so it's special occasions only, even though a low carb diet is a bit of a chore!
My Grandmother was type 2 diabetic, and could never get ANY real control of her condition, and had all the problems that brings, as such I have tried to stave off my decline as much as possible, she was told to eat a lot of carbs, and I believe that's why she was so ill despite being in a care home and unable to cater for herself, as her diet was so carb based as she was instructed to eat!
Metformin has fewer side effects too if you eat low cab, and I have seen plenty online who live low carb and are diabetic, getting much better control that way!
I found the low carb diet taxing to say the least, I did it for years and it clearly keeps the sugar levels under control. Theoretically the alternate day fasting should do the same thing - time will tell!
You really would think that hospitals and care homes would have the edge, they certainly do not practice what they preach do they?
I intend to stay off as many meds as possible, lost all faith now but am very comforted to know that if tings really deteriorate Metformin may not be quite the evil I believed it to be.
Keep that control and keep well
I am not the biggest fan of Pharmaceuticals at the best of times either, but often there is no alternative, at least int eh short term, Metformin seems not to be quite in that category though.
Oh they DO follow the guidelines, but current diabetic protocols are for HUGE amounts of carbs in diets, and to be honest, its more than people should eat who are NOT diabetic. Her diet included very large amounts of fruit, which of course is fructose, a sugar that has the very highest glycaemic impact! They advocate blood glucose levels of 8+nmol/L as being a good target, when some damage will certainly occur at those levels, yet restricting carbs can avoid that in many people.
Anything that Endos get involved in needs double checking - for some reason they have a very bizarre interpretation of what is good and what is not
It's so hard isn't it? I gave up eating fruit years ago, I sometimes allow myself some low carb berries or the odd banana but on the whole eat no other fruit.
Since coming off the restricted diet I have not been so strict in stopping sugar though so I guess I will find out how that has been affected when I get the next test. Will seriously restrict carbs again if I have to, am hoping that I don't but suspect that I will!
Yup, I no longer believe that Endos are able or willing to help no matter what - unless you fit into a very limited category, I certainly don't!
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