It wasn't depression it was Neuroglycopenia

[Nicnak1997]

Hi,

I have just joined the website but have written the following about my experiences. If it helps just one person I will be happy

I suffered with ill health for over 20 years and was misdiagnosed with depression, fibromyalgia, tennis elbow, irritable bowel syndrome etc. A couple of years ago my life got to a point where couldn’t function on a day to day basis and I was extremely ill. My GP probably just thought I was a hypochondriac.

I spent most of my life asleep and had no energy for anything. I tried to play golf but I just couldn’t. I was craving sugar all the time. I was having hypos all the time including in my sleep. I believe if I hadn’t have found my consultant then I may have died soon. If I didn’t die I certainly would have ended up diabetic. I have never been able to drink alcohol as it makes me fall asleep (even in a night club) and it wouldn’t take much. I wouldn’t remember what had happened the night before. If I hate carbohydrates eg bread, it felt like I was drugged up, I couldn’t stay awake and no one could wake me up. I had constant headaches which were horrendous, I had them all the time, I woke up with them I went to bed with them and they never went. They would sometimes last for months without a break. My skin felt like it was crawling. I had very bad stomach problems, bloating and pain. I itched all the time. My concentration levels were terrible, with brain fog and I just couldn’t do anything (like I had a total block on all the time). I had two tennis elbows which lasted six years and no medication or cortisone would ever do anything for them.

That is when my GP referred me to the best endocrinologist who changed my life. He is an expert in PCOS, diabetes and the endocrine system. After flaking out with a glucose tolerance test and many other blood tests he gave me his diagnosis. I had Neuroglycopenia (blood glucose reading of 2.0), Insulin Resistance and PCOS. A few years back I went for fertility investigations because I wanted another child and couldn’t get pregnant. I had a PCOS assessment and was told I didn’t have PCOS (by CARE). PCOS was only confirmed by my endocrinologist with a blood test.

He told me that I wasn’t depressed, didn’t have fibromyalgia etc. All my problems were down to PCOS which was a genetic problem in my family (early baldness before the age of 30 in my dad's side). My family has a history of heart problems and diabetes. I guess I am the lucky one, my brother already has type 2 diabetes in his mid forties and although I have early symptoms of developing diabetes I have had an opportunity to get myself back on track and so avert the onset of the illness. My 18 year old daughter has also been diagnosed with PCOS as she was displaying symptoms from an early age. I want to make sure she doesn’t suffer like I have.

Being ill all these years has ruined relationships, lost me jobs and my quality of life has been very poor.

My endocrinologist gave me Metformin as this works on the PCOS (isn’t licensed in the UK to treat PCOS but it should be). He also gave me Spironolactone which is a testosterone blocker. Of course if you take Metformin you should also take vitamin B12. People with the PCOS gene produce too much testosterone. The PCOS gene is present in both men and women and men can suffer with problems just as much as a woman. I didn’t get PCOS because I put weight on, I already had the PCOS gene and it made me put weight on because it makes you Insulin Resistant.

After being on my medication for around two and a half years and a change of lifestyle (ie a low glycaemic diet and exercise I can now say that I am feeling well. I have lost a total of 3st 9lb (now 9st 5lb) I will need to take my medication for the rest of my life and live a very strict lifestyle (it's a struggle) but it is much better than being so ill and the prospect of dying early. All my blood tests show all my hormones are in healthy ranges, my organs are all working well and I am now a healthy person. I have an annual check up every year just to keep a check of my blood figures.

I still suffer with peripheral neuropathy, my eyes are affected, I rarely have a hypo, I rarely have headaches and when I do I know that I haven’t been looking after myself too well (it’s difficult to live a strict lifestyle when you have to go out and socialise). I know when I have overdone it when I get a headache or the odd hypo. Carbohydrates still make me go to sleep. My stomach is much better now that my problem is under control. I only get joint pains when my insulin gets too high. Another symptom I still get when I know I haven’t been good with my diet is my brain literally stops working. I guess no one can understand what that means unless you suffer from it yourself.

I believe there are many people out there who have been ill for years, their doctors have misdiagnosed them or just say there was nothing wrong with them. My doctor used to take blood tests and they would all seem normal. No one ever did a glucose tolerance test. I once went into my doctors surgery having a hypo and they told me I was having an anxiety attack. If you can’t find out why you are ill I would ask for a second opinion. It’s always worth checking your glucose tolerance and getting a proper blood check done for PCOS. It goes hand in hand with insulin resistance and causes so much damage to your health. If you catch it early it is easier to put the problem right. I would never wish what I went through on anyone.

Metformin isn’t available to me free like a diabetic, I have to pay for it because they haven’t licensed it in the UK for treating PCOS. If I developed diabetes because of my PCOS they would then let me have it free. I am taking Metformin to stop me getting diabetes yet the NHS won’t support me on that one. If anyone out there has PCOS or knows someone who has it then they should always be treated. PCOS causes diabetes, strokes and heart problems which usually means an earlier death and a substantial long term cost to the NHS.

If you go on to develop type 2 diabetes then it isn’t too late. Your health is the most important thing in the world. You can change your lifestyle and make yourself better.

 

[Liam1955]

@Nicnak1997 - Hello and Welcome to the Forum.. I will tag @daisy1 who will provide you with some basic information. Ask any questions you may have.

 

[Brunneria]

Thank you!

I am always surprised that PCOS has so little presence on this forum, but I think it is because people turn up here after years of PCOS and with a new diagnosis of T2 diabetes, so the PCOS gets kind of shunted to the background.

I agree with everything - PCOS can have systemic miserable effects that rule your life, and affect relactionships, fertility, aches, pains, exercise and mood. And it is often unrecognised and even if diagnosed, it can be dismissed with 'lose weight and it will all get better', when in fact losing weight and keeping it off is like climbing Mount Everest without bearers, oxygen or a map.

 

[daisy1]

@Nicnak1997

Hello and welcome to the forum Thank you for the detailed account of your health problems and I hope this will be useful to many members here. Here is the information we give to new members and I hope you will find this helpful. Ask as many questions as you need to and some members will reply.

BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find over 150,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes-and-whole-grains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

LOW CARB PROGRAM:
http://www.diabetes.co.uk/low carb program


Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to bloodglucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.

 

[donnellysdogs]

I have been misdiagnosed with Pernicious Anaemia, Fibromyalgia and Neuropathy (and more in past 20 years).

In 2003 we paid privately to see a rheumatologist due to consistent debilitating pains in my legs. He wrote to GP but the letter got filed and I wasn't informed of the findings..."likely intolerance to aspartame and sweeteners".

I asked in 2015 for a review of my medical notes and this was when the aspartame link and letter was noticed. There are no tests for aspartame poisoning or intolerance.

Moving on til recent years. I had really high, off the scale high B12 and folate. My diabetic consultant asked for more tests and discussed luekaemia with me. She said I didn't look as if I had leukaemia. Then last year they found I had breast cancer... My levels of B12 have dropped since the cancer was removed.....

Now, I have had to have oestrogen inhibitors... They have caused me horrendous pains again in my legs.

Avoiding all aspartame and all sweeteners except xylitol and all preservatives totally eliminated my leg pains.

Now I have a battle to get an anti cancer tablet to not cause me excruciating, crippling pain in my legs. I'm now on my last drug available-will get it tomorrow hopefully to try. If it is pain free it will be great, if not I have accepted that I will have to accept a shorter quantity of life but a better quality of life and not take anymore tablets.

Even painkillers like gabapentin, amitryptalene etc crucify my legs. The only painkiller I can tolerate is an opoid patch that then totally paralyses my stomach which then means another tablet to over ride the morphine affect.

My GPs do not appreciate the impact of sweeteners and drugs etc on me...

Its great to hear that you have a brilliant endocronolgist and like you I too find that lower specific carbs are easier on my stomach. I cannot eat onion or garlic..

Metformin is also now linked to breast cancer reduction for diabetics. Apparently women taking insulin and with dense breasts are twice as likely to get it and these may well be something that perhaps you could use as a reason to ask for it on NHS??? Just a thought.

So glad to hear you are managing so well. Its really positive to read your post...

 

[Lamont D]

Hi @Nicnack1997,

A truly remarkable story and well done on all your battles, you have had such a long Boulton get yourself diagnosed.
This was a very similar story to mine and I really do empathise and sympathise with how you use to be, because I've been there.
I have a rare condition and it took a really good endocrinologist to get my diagnosis correct after a really long battle.
As you say, unless you've had those awful symptoms, you really don't know how bad things can get.
Constant hypos is what my symptoms were and I call it, my hypo hell! There is nothing worse than finding yourself somewhere where you don't know how you got there and how you got there and why you went there.
The symptoms of anxiety and depression caused by low bloods is disconcerting to say the least.

If you want to read my story just follow the middle link in my signature box below, I have named it 'a reactionary' and if you want to read about my condition, we have our own forum, it's called Reactive Hypoglycaemia. First link below.

The reason I'm telling you this, is because your story reminds me so much of what I went through and I believe you could gain some knowledge as the treatment, mainly diet, is so similar to reactive hypoglycaemia.

Best wishes.

Welcome to the forum.

 

[RosieLKH]

Welcome and thanks for telling your story. I agree itt is hard to live the strict lifestyle, but you seem to be doing really well now. Well done and keep sharing.

 

[Nicnak1997]

Hi @Nicnack1997,

A truly remarkable story and well done on all your battles, you have had such a long Boulton get yourself diagnosed.
This was a very similar story to mine and I really do empathise and sympathise with how you use to be, because I've been there.
I have a rare condition and it took a really good endocrinologist to get my diagnosis correct after a really long battle.
As you say, unless you've had those awful symptoms, you really don't know how bad things can get.
Constant hypos is what my symptoms were and I call it, my hypo hell! There is nothing worse than finding yourself somewhere where you don't know how you got there and how you got there and why you went there.
The symptoms of anxiety and depression caused by low bloods is disconcerting to say the least.

If you want to read my story just follow the middle link in my signature box below, I have named it 'a reactionary' and if you want to read about my condition, we have our own forum, it's called Reactive Hypoglycaemia. First link below.

The reason I'm telling you this, is because your story reminds me so much of what I went through and I believe you could gain some knowledge as the treatment, mainly diet, is so similar to reactive hypoglycaemia.

Best wishes.

Welcome to the forum.

Thank you for your reply. It is good to know that I am not the only person in the world who has these problems. It helps to make you feel less isolated. It will be good to get to know a few people on here so that we can hopefully help each other.

 

[Lamont D]

Thank you for your reply. It is good to know that I am not the only person in the world who has these problems. It helps to make you feel less isolated. It will be good to get to know a few people on here so that we can hopefully help each other.

It's the reason I'm still here!

I found this site, and a fellow RH poster and now we have our own forum, trying to help those who are not getting the help they need.

Hope you can contribute to others, who have been where we have been.

There is a lot more forums than the greetings one. Hope you can discover more and if you have questions, ask them, someone will come along and answer for you!

 

[ickihun]

Hi,

I have just joined the website but have written the following about my experiences. If it helps just one person I will be happy

I suffered with ill health for over 20 years and was misdiagnosed with depression, fibromyalgia, tennis elbow, irritable bowel syndrome etc. A couple of years ago my life got to a point where couldn’t function on a day to day basis and I was extremely ill. My GP probably just thought I was a hypochondriac.

I spent most of my life asleep and had no energy for anything. I tried to play golf but I just couldn’t. I was craving sugar all the time. I was having hypos all the time including in my sleep. I believe if I hadn’t have found my consultant then I may have died soon. If I didn’t die I certainly would have ended up diabetic. I have never been able to drink alcohol as it makes me fall asleep (even in a night club) and it wouldn’t take much. I wouldn’t remember what had happened the night before. If I hate carbohydrates eg bread, it felt like I was drugged up, I couldn’t stay awake and no one could wake me up. I had constant headaches which were horrendous, I had them all the time, I woke up with them I went to bed with them and they never went. They would sometimes last for months without a break. My skin felt like it was crawling. I had very bad stomach problems, bloating and pain. I itched all the time. My concentration levels were terrible, with brain fog and I just couldn’t do anything (like I had a total block on all the time). I had two tennis elbows which lasted six years and no medication or cortisone would ever do anything for them.

That is when my GP referred me to the best endocrinologist who changed my life. He is an expert in PCOS, diabetes and the endocrine system. After flaking out with a glucose tolerance test and many other blood tests he gave me his diagnosis. I had Neuroglycopenia (blood glucose reading of 2.0), Insulin Resistance and PCOS. A few years back I went for fertility investigations because I wanted another child and couldn’t get pregnant. I had a PCOS assessment and was told I didn’t have PCOS (by CARE). PCOS was only confirmed by my endocrinologist with a blood test.

He told me that I wasn’t depressed, didn’t have fibromyalgia etc. All my problems were down to PCOS which was a genetic problem in my family (early baldness before the age of 30 in my dad's side). My family has a history of heart problems and diabetes. I guess I am the lucky one, my brother already has type 2 diabetes in his mid forties and although I have early symptoms of developing diabetes I have had an opportunity to get myself back on track and so avert the onset of the illness. My 18 year old daughter has also been diagnosed with PCOS as she was displaying symptoms from an early age. I want to make sure she doesn’t suffer like I have.

Being ill all these years has ruined relationships, lost me jobs and my quality of life has been very poor.

My endocrinologist gave me Metformin as this works on the PCOS (isn’t licensed in the UK to treat PCOS but it should be). He also gave me Spironolactone which is a testosterone blocker. Of course if you take Metformin you should also take vitamin B12. People with the PCOS gene produce too much testosterone. The PCOS gene is present in both men and women and men can suffer with problems just as much as a woman. I didn’t get PCOS because I put weight on, I already had the PCOS gene and it made me put weight on because it makes you Insulin Resistant.

After being on my medication for around two and a half years and a change of lifestyle (ie a low glycaemic diet and exercise I can now say that I am feeling well. I have lost a total of 3st 9lb (now 9st 5lb) I will need to take my medication for the rest of my life and live a very strict lifestyle (it's a struggle) but it is much better than being so ill and the prospect of dying early. All my blood tests show all my hormones are in healthy ranges, my organs are all working well and I am now a healthy person. I have an annual check up every year just to keep a check of my blood figures.

I still suffer with peripheral neuropathy, my eyes are affected, I rarely have a hypo, I rarely have headaches and when I do I know that I haven’t been looking after myself too well (it’s difficult to live a strict lifestyle when you have to go out and socialise). I know when I have overdone it when I get a headache or the odd hypo. Carbohydrates still make me go to sleep. My stomach is much better now that my problem is under control. I only get joint pains when my insulin gets too high. Another symptom I still get when I know I haven’t been good with my diet is my brain literally stops working. I guess no one can understand what that means unless you suffer from it yourself.

I believe there are many people out there who have been ill for years, their doctors have misdiagnosed them or just say there was nothing wrong with them. My doctor used to take blood tests and they would all seem normal. No one ever did a glucose tolerance test. I once went into my doctors surgery having a hypo and they told me I was having an anxiety attack. If you can’t find out why you are ill I would ask for a second opinion. It’s always worth checking your glucose tolerance and getting a proper blood check done for PCOS. It goes hand in hand with insulin resistance and causes so much damage to your health. If you catch it early it is easier to put the problem right. I would never wish what I went through on anyone.

Metformin isn’t available to me free like a diabetic, I have to pay for it because they haven’t licensed it in the UK for treating PCOS. If I developed diabetes because of my PCOS they would then let me have it free. I am taking Metformin to stop me getting diabetes yet the NHS won’t support me on that one. If anyone out there has PCOS or knows someone who has it then they should always be treated. PCOS causes diabetes, strokes and heart problems which usually means an earlier death and a substantial long term cost to the NHS.

If you go on to develop type 2 diabetes then it isn’t too late. Your health is the most important thing in the world. You can change your lifestyle and make yourself better.

@Nicnak1997 who told you metformin isnt licenced for PCOS?
I went on the trials in London in 1997and it was passed.
I went on to have 2 pregnancies on metformin 2x500mg

 

[Nicnak1997]

@Nicnak1997 who told you metformin isnt licenced for PCOS?
I went on the trials in London in 1997and it was passed.
I went on to have 2 pregnancies on metformin 2x500mg

Hi,

As I have PCOS and not diabetic I do not qualify for free prescriptions like a diabetic would.

My endocrinologist (private) diagnosed my problem and it was a normal condition for him to treat. When I went back to my NHS GP he had absolutely no idea what he was doing and couldn't understand why I was being treated for my illness the way I was. GPs don't seem to understand the condition. I tend to avoid going to my GP as of my previous bad experiences. I don't tend to trust them anymore and that is a real shame.

You sound like everything got sorted and you were able to have children ok. Do you still maintain good health?

@Nicnak1997 who told you metformin isnt licenced for PCOS?
I went on the trials in London in 1997and it was passed.
I went on to have 2 pregnancies on metformin 2x500mg

@Nicnak1997 who told you metformin isnt licenced for PCOS?
I went on the trials in London in 1997and it was passed.
I went on to have 2 pregnancies on metformin 2x500mg

 

[Nicnak1997]

Hi @Nicnack1997,

A truly remarkable story and well done on all your battles, you have had such a long Boulton get yourself diagnosed.
This was a very similar story to mine and I really do empathise and sympathise with how you use to be, because I've been there.
I have a rare condition and it took a really good endocrinologist to get my diagnosis correct after a really long battle.
As you say, unless you've had those awful symptoms, you really don't know how bad things can get.
Constant hypos is what my symptoms were and I call it, my hypo hell! There is nothing worse than finding yourself somewhere where you don't know how you got there and how you got there and why you went there.
The symptoms of anxiety and depression caused by low bloods is disconcerting to say the least.

If you want to read my story just follow the middle link in my signature box below, I have named it 'a reactionary' and if you want to read about my condition, we have our own forum, it's called Reactive Hypoglycaemia. First link below.

The reason I'm telling you this, is because your story reminds me so much of what I went through and I believe you could gain some knowledge as the treatment, mainly diet, is so similar to reactive hypoglycaemia.

Best wishes.

Welcome to the forum.

hi again,

I read your very first blog explaining your journey and yes we definitely have a lot in common. It was strange because my consultant told me my condition was rare too. He was giving a lecture at Harvard Medical School and wanted to use me as a case study.

I particularly noticed your following comments on

Alcohol - I used to be affected by even small amounts of alcohol, I would get quite drunk on not that much and often couldn't remember what had happen.

Weight gain - I was also diagnosed with insulin resistance. When you have that then weight loss is just impossible. I could starve myself and never lose weight. Only a low GI diet and exercise has achieved weight loss. This is the key for people like us.

Sleep - Insulin rises naturally in the evening, through the night and early morning. I was recommended to do 10 minutes exercise before bed and on rising in order to lower my insulin. You only tend to have disturbed sleep when your insulin isn't stable during the night. The key to this is to get your insulin lower before bed time.

Reactive Hypos - Mine too are reactive condition and carbs are my enemy.

Your blog was a very interesting read and as you previously said in your reply we have a lot in common. One thing that would be interested to know is that do you have the PCOS gene? My consultant tells me that men can carry the gene and one symptom of this is baldness in men before the ago of 30. You might be a man but you can still have the PCOS gene which would result in you getting the same illnesses ie more prone to heart problems, strokes, diabetes etc.

Make you wonder how many more people there are out there who also have our problem but have yet to be diagnosed.

Keep up the good work, you are doing well.

Regard

 

[Freema]

Hi,

I have just joined the website but have written the following about my experiences. If it helps just one person I will be happy

I suffered with ill health for over 20 years and was misdiagnosed with depression, fibromyalgia, tennis elbow, irritable bowel syndrome etc. A couple of years ago my life got to a point where couldn’t function on a day to day basis and I was extremely ill. My GP probably just thought I was a hypochondriac.

I spent most of my life asleep and had no energy for anything. I tried to play golf but I just couldn’t. I was craving sugar all the time. I was having hypos all the time including in my sleep. I believe if I hadn’t have found my consultant then I may have died soon. If I didn’t die I certainly would have ended up diabetic. I have never been able to drink alcohol as it makes me fall asleep (even in a night club) and it wouldn’t take much. I wouldn’t remember what had happened the night before. If I hate carbohydrates eg bread, it felt like I was drugged up, I couldn’t stay awake and no one could wake me up. I had constant headaches which were horrendous, I had them all the time, I woke up with them I went to bed with them and they never went. They would sometimes last for months without a break. My skin felt like it was crawling. I had very bad stomach problems, bloating and pain. I itched all the time. My concentration levels were terrible, with brain fog and I just couldn’t do anything (like I had a total block on all the time). I had two tennis elbows which lasted six years and no medication or cortisone would ever do anything for them.

That is when my GP referred me to the best endocrinologist who changed my life. He is an expert in PCOS, diabetes and the endocrine system. After flaking out with a glucose tolerance test and many other blood tests he gave me his diagnosis. I had Neuroglycopenia (blood glucose reading of 2.0), Insulin Resistance and PCOS. A few years back I went for fertility investigations because I wanted another child and couldn’t get pregnant. I had a PCOS assessment and was told I didn’t have PCOS (by CARE). PCOS was only confirmed by my endocrinologist with a blood test.

He told me that I wasn’t depressed, didn’t have fibromyalgia etc. All my problems were down to PCOS which was a genetic problem in my family (early baldness before the age of 30 in my dad's side). My family has a history of heart problems and diabetes. I guess I am the lucky one, my brother already has type 2 diabetes in his mid forties and although I have early symptoms of developing diabetes I have had an opportunity to get myself back on track and so avert the onset of the illness. My 18 year old daughter has also been diagnosed with PCOS as she was displaying symptoms from an early age. I want to make sure she doesn’t suffer like I have.

Being ill all these years has ruined relationships, lost me jobs and my quality of life has been very poor.

My endocrinologist gave me Metformin as this works on the PCOS (isn’t licensed in the UK to treat PCOS but it should be). He also gave me Spironolactone which is a testosterone blocker. Of course if you take Metformin you should also take vitamin B12. People with the PCOS gene produce too much testosterone. The PCOS gene is present in both men and women and men can suffer with problems just as much as a woman. I didn’t get PCOS because I put weight on, I already had the PCOS gene and it made me put weight on because it makes you Insulin Resistant.

After being on my medication for around two and a half years and a change of lifestyle (ie a low glycaemic diet and exercise I can now say that I am feeling well. I have lost a total of 3st 9lb (now 9st 5lb) I will need to take my medication for the rest of my life and live a very strict lifestyle (it's a struggle) but it is much better than being so ill and the prospect of dying early. All my blood tests show all my hormones are in healthy ranges, my organs are all working well and I am now a healthy person. I have an annual check up every year just to keep a check of my blood figures.

I still suffer with peripheral neuropathy, my eyes are affected, I rarely have a hypo, I rarely have headaches and when I do I know that I haven’t been looking after myself too well (it’s difficult to live a strict lifestyle when you have to go out and socialise). I know when I have overdone it when I get a headache or the odd hypo. Carbohydrates still make me go to sleep. My stomach is much better now that my problem is under control. I only get joint pains when my insulin gets too high. Another symptom I still get when I know I haven’t been good with my diet is my brain literally stops working. I guess no one can understand what that means unless you suffer from it yourself.

I believe there are many people out there who have been ill for years, their doctors have misdiagnosed them or just say there was nothing wrong with them. My doctor used to take blood tests and they would all seem normal. No one ever did a glucose tolerance test. I once went into my doctors surgery having a hypo and they told me I was having an anxiety attack. If you can’t find out why you are ill I would ask for a second opinion. It’s always worth checking your glucose tolerance and getting a proper blood check done for PCOS. It goes hand in hand with insulin resistance and causes so much damage to your health. If you catch it early it is easier to put the problem right. I would never wish what I went through on anyone.

Metformin isn’t available to me free like a diabetic, I have to pay for it because they haven’t licensed it in the UK for treating PCOS. If I developed diabetes because of my PCOS they would then let me have it free. I am taking Metformin to stop me getting diabetes yet the NHS won’t support me on that one. If anyone out there has PCOS or knows someone who has it then they should always be treated. PCOS causes diabetes, strokes and heart problems which usually means an earlier death and a substantial long term cost to the NHS.

If you go on to develop type 2 diabetes then it isn’t too late. Your health is the most important thing in the world. You can change your lifestyle and make yourself better.

what a very fine explanation and also information and warning to others..
very interesting too how complicated PCOS really is..

is it by the way the very raised testosterone that leads to too low blood glucose in the brain ?

 

[ickihun]

HI,

As I have PCOS and not diabetic I do not qualify for free prescriptions like a diabetic would.

My endocrinologist (private) diagnosed my problem and it was a normal condition for him to treat. When I went back to my NHS GP he had absolutely no idea what he was doing and couldn't understand why I was being treated for my illness the way I was. GPs don't seem to understand the condition. I tend to avoid going to my GP as of my previous bad experiences. I don't tend to trust them anymore and that is a real shame.

You sound like everything got sorted and you were able to have children ok. Do you still maintain good health?

I do. With the help of metformin. I add weight when I'm not on it. Its looking like I'm losing again now im using it regularly. I was taken off it before given insulin injections in 2015. My liver was kicking out too much enzymes and I was suffering with a fatty liver on fruit (healthy) diet. Hence I guess the med stopped working.
Now on metformin again after a year break, it has taken a year to resettle into it again.
My periods return as soon as I take it.
I feel more normal on it than without it.
The first time I stopped taken it was under the direction of a professor at St. Thomas' s hospital London where I was part funding my first cycle of ivf. The ivf failed as I added over a stone in the 6 weeks of the ivf cycle. I guess if I'd stayed on metformin it may have worked.
I abandoned my fertility treatment and went back on metformin. Within which time I was never tested for diabetes. I was only tested in 2002 at change of gp practice that I was told I was indeed diabetic.
I'm guessing I was diabetic from the age of 6yr old where I recall diabetic symptoms. Including horrific thrush, all my childhood. GP in the 70s had not heard of diabetes type2 in 6yr olds.

 

[ickihun]

hi again,

I read your very first blog explaining your journey and yes we definitely have a lot in common. It was strange because my consultant told me my condition was rare too. He was giving a lecture at Harvard Medical School and wanted to use me as a case study.

I particularly noticed your following comments on

Alcohol - I used to be affected by even small amounts of alcohol, I would get quite drunk on not that much and often couldn't remember what had happen.

Weight gain - I was also diagnosed with insulin resistance. When you have that then weight loss is just impossible. I could starve myself and never lose weight. Only a low GI diet and exercise has achieved weight loss. This is the key for people like us.

Sleep - Insulin rises naturally in the evening, through the night and early morning. I was recommended to do 10 minutes exercise before bed and on rising in order to lower my insulin. You only tend to have disturbed sleep when your insulin isn't stable during the night. The key to this is to get your insulin lower before bed time.

Reactive Hypos - Mine too are reactive condition and carbs are my enemy.

Your blog was a very interesting read and as you previously said in your reply we have a lot in common. One thing that would be interested to know is that do you have the PCOS gene? My consultant tells me that men can carry the gene and one symptom of this is baldness in men before the ago of 30. You might be a man but you can still have the PCOS gene which would result in you getting the same illnesses ie more prone to heart problems, strokes, diabetes etc.

Make you wonder how many more people there are out there who also have our problem but have yet to be diagnosed.

Keep up the good work, you are doing well.

Regard

I've been told about bauldness in young men are the pcos equivalent, too.

 

[ickihun]

what a very fine explanation and also information and warning to others..
very interesting too how complicated PCOS really is..

is it by the way the very raised testosterone that leads to too low blood glucose in the brain ?

I'm not sure how the brain is effected @Freema but yes increased testoesterone in pcos sufferers is apparent. I believe the cause of the missing periods, hirsutism and hormone imbalance.
I'm guessing the insulin resistance is cause of the hormone imbalance too. Insulin and thyroxine hormones combined.
Now how does the hormones start being imbalanced? Carbs?
There's a thought!
On low carb I don't lose weight nor resume my periods without metformin. I am severely insulin resistant.
It I had to put money on it I feel more a liver problem than a pancreas problem.
That is why I love liver blocks! And ironic only certain foods can block! Like certain food start the whole insulin resistant problem.
Certain foods to the individual not across the board. Although I feel certain carbs are the catalyst! Maybe not all.

 

[ickihun]

It is a shame PCOS is relatively ignored but I started search for answers in America in 1990s and came across their research into metformin. I'm not sure if any further research has been done seperately to metformins benefits for it.

 

[jinglybells]

hi again,

I read your very first blog explaining your journey and yes we definitely have a lot in common. It was strange because my consultant told me my condition was rare too. He was giving a lecture at Harvard Medical School and wanted to use me as a case study.

I particularly noticed your following comments on

Alcohol - I used to be affected by even small amounts of alcohol, I would get quite drunk on not that much and often couldn't remember what had happen.

Weight gain - I was also diagnosed with insulin resistance. When you have that then weight loss is just impossible. I could starve myself and never lose weight. Only a low GI diet and exercise has achieved weight loss. This is the key for people like us.

Sleep - Insulin rises naturally in the evening, through the night and early morning. I was recommended to do 10 minutes exercise before bed and on rising in order to lower my insulin. You only tend to have disturbed sleep when your insulin isn't stable during the night. The key to this is to get your insulin lower before bed time.

Reactive Hypos - Mine too are reactive condition and carbs are my enemy.

Your blog was a very interesting read and as you previously said in your reply we have a lot in common. One thing that would be interested to know is that do you have the PCOS gene? My consultant tells me that men can carry the gene and one symptom of this is baldness in men before the ago of 30. You might be a man but you can still have the PCOS gene which would result in you getting the same illnesses ie more prone to heart problems, strokes, diabetes etc.

Make you wonder how many more people there are out there who also have our problem but have yet to be diagnosed.

Keep up the good work, you are doing well.

Regard

Hi Niknak1997 - I've been trying to private message you. I saw your story while searching for some answers to my own. I can't see how to message you (I followed the video posted but I don't get the same options). Not sure if it's because I'm new? Are you able to message me please? I see similarities in your story to my own 15 years of hell! Keen to speak to you. Many thanks.

 

[Brunneria]

Hi and welcome @jinglybells

The forum is set up to prevent new posters from being able to send private messages until they have posted several times. It is intended to prevent people from just setting up an account and spamming everyone by PM.

If you just keep posting, you will find that the PM facility unlocks soon (although I am not sure exactly how many posts you need to make before it happens), and then you will be able to contact @Nicnak1997 directly.

Hope that helps.

 

[Freema]

Hi,

I have just joined the website but have written the following about my experiences. If it helps just one person I will be happy

I suffered with ill health for over 20 years and was misdiagnosed with depression, fibromyalgia, tennis elbow, irritable bowel syndrome etc. A couple of years ago my life got to a point where couldn’t function on a day to day basis and I was extremely ill. My GP probably just thought I was a hypochondriac.

I spent most of my life asleep and had no energy for anything. I tried to play golf but I just couldn’t. I was craving sugar all the time. I was having hypos all the time including in my sleep. I believe if I hadn’t have found my consultant then I may have died soon. If I didn’t die I certainly would have ended up diabetic. I have never been able to drink alcohol as it makes me fall asleep (even in a night club) and it wouldn’t take much. I wouldn’t remember what had happened the night before. If I hate carbohydrates eg bread, it felt like I was drugged up, I couldn’t stay awake and no one could wake me up. I had constant headaches which were horrendous, I had them all the time, I woke up with them I went to bed with them and they never went. They would sometimes last for months without a break. My skin felt like it was crawling. I had very bad stomach problems, bloating and pain. I itched all the time. My concentration levels were terrible, with brain fog and I just couldn’t do anything (like I had a total block on all the time). I had two tennis elbows which lasted six years and no medication or cortisone would ever do anything for them.

That is when my GP referred me to the best endocrinologist who changed my life. He is an expert in PCOS, diabetes and the endocrine system. After flaking out with a glucose tolerance test and many other blood tests he gave me his diagnosis. I had Neuroglycopenia (blood glucose reading of 2.0), Insulin Resistance and PCOS. A few years back I went for fertility investigations because I wanted another child and couldn’t get pregnant. I had a PCOS assessment and was told I didn’t have PCOS (by CARE). PCOS was only confirmed by my endocrinologist with a blood test.

He told me that I wasn’t depressed, didn’t have fibromyalgia etc. All my problems were down to PCOS which was a genetic problem in my family (early baldness before the age of 30 in my dad's side). My family has a history of heart problems and diabetes. I guess I am the lucky one, my brother already has type 2 diabetes in his mid forties and although I have early symptoms of developing diabetes I have had an opportunity to get myself back on track and so avert the onset of the illness. My 18 year old daughter has also been diagnosed with PCOS as she was displaying symptoms from an early age. I want to make sure she doesn’t suffer like I have.

Being ill all these years has ruined relationships, lost me jobs and my quality of life has been very poor.

My endocrinologist gave me Metformin as this works on the PCOS (isn’t licensed in the UK to treat PCOS but it should be). He also gave me Spironolactone which is a testosterone blocker. Of course if you take Metformin you should also take vitamin B12. People with the PCOS gene produce too much testosterone. The PCOS gene is present in both men and women and men can suffer with problems just as much as a woman. I didn’t get PCOS because I put weight on, I already had the PCOS gene and it made me put weight on because it makes you Insulin Resistant.

After being on my medication for around two and a half years and a change of lifestyle (ie a low glycaemic diet and exercise I can now say that I am feeling well. I have lost a total of 3st 9lb (now 9st 5lb) I will need to take my medication for the rest of my life and live a very strict lifestyle (it's a struggle) but it is much better than being so ill and the prospect of dying early. All my blood tests show all my hormones are in healthy ranges, my organs are all working well and I am now a healthy person. I have an annual check up every year just to keep a check of my blood figures.

I still suffer with peripheral neuropathy, my eyes are affected, I rarely have a hypo, I rarely have headaches and when I do I know that I haven’t been looking after myself too well (it’s difficult to live a strict lifestyle when you have to go out and socialise). I know when I have overdone it when I get a headache or the odd hypo. Carbohydrates still make me go to sleep. My stomach is much better now that my problem is under control. I only get joint pains when my insulin gets too high. Another symptom I still get when I know I haven’t been good with my diet is my brain literally stops working. I guess no one can understand what that means unless you suffer from it yourself.

I believe there are many people out there who have been ill for years, their doctors have misdiagnosed them or just say there was nothing wrong with them. My doctor used to take blood tests and they would all seem normal. No one ever did a glucose tolerance test. I once went into my doctors surgery having a hypo and they told me I was having an anxiety attack. If you can’t find out why you are ill I would ask for a second opinion. It’s always worth checking your glucose tolerance and getting a proper blood check done for PCOS. It goes hand in hand with insulin resistance and causes so much damage to your health. If you catch it early it is easier to put the problem right. I would never wish what I went through on anyone.

Metformin isn’t available to me free like a diabetic, I have to pay for it because they haven’t licensed it in the UK for treating PCOS. If I developed diabetes because of my PCOS they would then let me have it free. I am taking Metformin to stop me getting diabetes yet the NHS won’t support me on that one. If anyone out there has PCOS or knows someone who has it then they should always be treated. PCOS causes diabetes, strokes and heart problems which usually means an earlier death and a substantial long term cost to the NHS.

If you go on to develop type 2 diabetes then it isn’t too late. Your health is the most important thing in the world. You can change your lifestyle and make yourself better.

oh what a bad struggle and suffering you have been through... good that you are now in better health and in control most of the time, many of us type 2´s also are really low in carbs a lot, not me,but many in this forum is as low as around 30 grams of carbs a day and some even eat less..
Before my diagnosis my brain also felt like a cronic flu for around 12-15 years, was famous for wanting to go have a rest or sleep all the time I was visiting family (alone with a child the only time I could do it really when my little daugther was around... with a good consious.... so I know the feeling of actually wanting to cut ones brain off to feel better... symbolically...

Well and many more probably have this PCOS in smaller or bigger degree, you seem to have been hit in a much more servere degree than most are... so happy that you were lucky you found a saviour... and good that you make this condition and suffering more known in forums like this.. cause many do maybe suffer from a combined condition here as well without knowing it..

actually also thought myself that I have a high level of testosterone all my grown up life... but now my brain is normal again on lower carbs as a type 2 have to do, but also on metformine...