Getting to the bottom of long term chronic illness.

[johnnyxs]

Like most of us I have been suffering with unexplained illness over a considerable period of time.

Once a strong and fit athlete, motivated and energetic the past decade or so has seen me reduced to a mere shell of my formal self with an ever increasing list of symptoms,

Fatigue, Stress ,chronic UTI’s, muscle cramps, joint pain, dry mouth, dry burning eyes, blurred vision, hair loss, lost libido, brittle nails, dry skin, headaches, neck & head pain, wrist and ankle pain, constipation, memory loss , poor conscentration, brain fog, depression, mood swings, anxiety, inexplicable sadness and crying ?, profuse sweating , pins and needles in the fingers, itchy shins.etc etc

In desperation and fed up with my miserable life I went to my Doctor last September and insisted that he that he refer me to an Endocrinologist  . I told him that my quality of life was now completely unacceptable and my health had steadily deteriorated over the past 10 years.

I finally saw the Endo in December last year and he ordered a complete blood panel including adrenal and testosterone. Due to various cockups at the Hospital and surgery I had to get the blood tests repeated in January and didn’t get the blood test results until March this year.

The Endo phoned me and told me that I had a brain tumour !  Apparently my Pituitary had a tumour which was producing too much Prolactin and reducing my Testosterone production .

Meanwhile in  January this year  I started to drink and urinate huge quantities of water, some days 8lts or more . A blood sugar test and HBS1a test revealed that I had Type 2 Diabetes !

Apparently it looks like I have been undiagnosed pre-diabetic for at least 10 years ! The Doctor had ignored all the classic signs of pre-diabetes ...the fatigue , sweating, blurred vision hypoglycemic episodes and high blood sugar levels, itchy skin on legs etc.

So now I have a diagnosis of Hypothyroidism, Adrenal fatigue, Diabetes and a Pituitary tumour ....which  goes a long way in explaining all the awful undiagnosed symptoms that I have been suffering this past 10-15 years and a chance of appropriate effective treatment at last

The reason that I wanted to share this with you is not for sympathy or recognition or anything like that. I want to prevent others from suffering for years with undiagnosed symptoms and poor quality of life like I have been forced to by my Doctors ignorance. If you are not getting the treatment and diagnosis you need ,insist on it , Insist on a referral to a consultant and do not potentially suffer undiagnosed and treatable illness unecessarily.

Best wishes to all fellow sufferers

Johnny

[Butterfly65]

Johnnyxs,

So Sad and so very frustrating & bloody annoying  to hear you have had to endure years of feeling so unwell without a proper diagnosis and then to discover you have not one, but four autoimmune conditions.

Thank you for your story and advice. Seems we should all learn to be more proactive when it comes down to our health issues and not be fobbed off with 'it's all In your head" take some antidepressants and everything will be ok. Best wishes to you and I do hope you are able to regain an acceptable quality of life.

[shaws Administrator]

I wonder, Johnny, if you have had undiagnosed hypothyroidism long before your other symptoms appeared. 

Despite seeing many doctors with my symptoms - not one diagnosed or thought of a thyroid gland dysfunction. Fortunately a first aider saw my swollen gland and was discharged from the A&E as 

[shaws Administrator]

I am very sorry about your diagnoses. I do wonder if you had undiagnosed hypothyroidism as I've read that if we are undiagnosed/undertreated that we can develop other more serious illnesses and it's only when things are so serious that diagnoses are finally made.

Many people remain undiagnosed when the reliance is on the TSH alone, or the doctors don't even think of testing the thyroid hormones, as I myself can confirm.

I hope you feel much better a.s.a.p.

[johnnyxs]

thank you all for your good wishes .

I have been diagnosed with hypothyroidism for the past 10+ years and have been taking varying amounts of levo with no real improvement.

Pre-diabetes is a very debilitating condition because you are completely unaware of when your blood glucose levels are up and down and all over the place . Previously I had attributed all these symptoms to Hypothyroidism not knowing about the diabetes, Adrenal fatigue and Pituitary issues . There is no way of knowing for sure which condition came first . It is entirely possible that my Pituitary tumour caused all the other conditions over time .

Now that I am monitoring my glucose levels 4x a day I can directly associate various 'symptoms' with high or low blood glucose levels. After 3x months I can tell exactly when my blood sugar levels are dropping low before I have a Hyperglycemic attack or are increasing too high ,by the way I feel ie sweating, headache, anxiety, feeling hot and flushed, hand tremours etc .

All these symptoms I have suffered for many many years without knowing the cause due to my Doctors ignorance. Previously I would think nothing of consuming most of a huge 200gm bar of chocolate in an evening !

This is why I am recommending that anyone with similar undiagnosed symptoms check their blood sugar levels . A blood glucose meter only costs £12 or so and could reveal an unknown  pre-diabetes condition before it becomes full blown irreversible Diabetes.

Blood tests for Tesosterone and Adrenals Pituitary etc are more complicated and have to be requested by consultants as the blood samples have to be taken before 9am then frozen and  are sent to specialist laboratorys

[dolphin5]

Good luck with your recovery! X

[johnnyxs in reply to dolphin5]

bless you Dolphin

[greygoose]

Doctors have ignored all my symptoms since I was about 8 years old. I was just told I was greedy and lazy and a little bit stupid! Then, according to them, I became a crazy teenager, should see a psychiatrist, and then a neurotic, hysterical woman. No-one tested for thyroid until I was 55. I tested positive for Hashi's, and had obviously had it for a long time, because there wasn't much gland left. How different my life would have been if they'd tested and treated when I was 8!  

[johnnyxs]

thank you sandy for the link I'll mention it to my endo

The Pituitary produces a number of hormones and the one that is causing me problems is Prolactin.

I am seeing my consultant later this month to get the results of my mri scan . I'm hoping that I can treat the problem with a drug that reduces prolactin production .