Sunday, 10 June 2012


About 15 years ago, I started having problems with fatigue. It hit me quite suddenly and literally knocked me for a six. I was fit and healthy, had a young daughter and was used to having a lot of energy. My doctor knew me well and took it very seriously. He ran a whole range of tests which all came back clear and so he put it down to CFS and proceeded to put me on regular Vit B12 injections - which did nothing at all!

Further down the track, arthritis type pain followed in my back, knees, right shoulder and hands...... Sent off for x-rays and told my joints looked a bit worse for wear, but they couldn't find anything too serious. Then came the high blood pressure that just seemed to shoot up out of nowhere - no medication, just monitoring to start with. Bad reflux followed;  Doc sent me off for a gastroscopy which showed no real problems so he started me on losec. Now the weight started to pile on; neither Jenny Craig or Sureslim seemed to be able to help me. I have had problems with sleeping, mainly not being able to get into a deep sleep or waking all night to go to the toilet. My hair is dry and brittle and falling out. My nails are brittle and break easily and I have problems with my circulation where my hands and feet go to sleep all the time. Recently my left kidney has starting hurting and my right eye is twitching like mad.

My blood pressure wouldn't stabilize and kept spiking, so I ended up on medication for that and I started having heart palpitations all the time as well. At this stage I had been through 2 relationships and met and moved in with the love of my life. We were in our mid thirties and wanted to try for a baby. Falling pregnant really fast, we were both ecstatic until 5 weeks later our dreams ended in miscarriage. We were both totally shattered, but decided to try again. 4 miscarriages later we were about to give up and cut our losses. We had genetic testing, untold blood tests, including thyroid tests and were both deemed fertile and doctors could find no logical reason why I couldn't carry a baby, especially since I had 2 healthy children previously. I stopped taking the pregnancy vitamins and tried to plan a future with just us and my other 2 kids from a previous relationship.

A few months later, I found out I was pregnant and we decided I should give up work. For some reason, this one worked and our son was born in 2005. We were elated and couldn't believe how lucky we were. However my health issues seemed to get worse and worse. Fatigue was a real issue and I started to have problems with basic exercise, where my legs would just ache. My right shoulder was hurting so much I found it hard to hang out the washing.

We moved to Australia in 2007 and I just seemed to go downhill. In 2009 I was diagnosed with Fibromyalgia after having a multitude of tests ranging from a MRI, blood tests, ultrasounds etc
I resigned myself to the fact that this was it and I just had to live with the pain and fatigue and try and get on with my life. Last year we were blessed with the birth of our daughter  - a pregnancy that came as a complete surprise and although plagued with health problems, resulted in the miracle of our beautiful baby girl. No problems with miscarriages this time.

In August 2011 I was rushed to hospital with a bp reading of 200/110. They couldn't find any reason for this and one of the doctors decided to check my calcium levels - which were high. After that came the PTH tests and vit D - the PTH being high and vit D being low. This was the first time I had ever heard the term Hyperparathyroidism mentioned - I had never even heard of a parathyroid gland until that day. (For those of you that have never heard of them either, they are 4 glands about the size of a grain of rice positioned behind your thyroid gland. Their sole purpose is to regulate calcium in our bodies. Sometimes they can go 'hyper' and grow into a tumour that is referred to as an adenoma, resulting in them stripping the calcium from our bones and putting it into the bloodstream - causing bone pain, brain fog from excess calcium and other problems).

An ultrasound of my thyroid found it to be enlarged on the right side.  It is strange to wish you have a tumour, but if all my symptoms could be cured by an operation to remove it - then I was rooting for the tumour!!! A sestamibi scan showed no adenoma but showed a hot spot on my right thyroid lobe.

It hasn't been an easy road and I have had to fight the doctors all the way. First an Endocrinologist which said my problems were all caused by the low Vitamin D and that my other problems, including the bone pain, were not in any way related to my calcium! She could not explain why my calcium was high when my vitamin D was low - it makes no sense if your parathyroid glands are working as they should. Vitamin D is only in our bodies to help absorb calcium. .

I have been sent to a neurologist, rheumatologist, endocrinologist, cardiologist and endless GP's. The cardiologist said to get my parathyroid checked out - but that is easier said than done when a GP sees Fibromyalgia on your records and doesn't want to look any further. I have also asked for thyroid testing as there is thyroid disease in my family. I have always been told my tests were normal and never realised until recently that they only test your TSH - they don't look any further if this test comes back in the normal range. This week I will be pushing for an antibody test after the ultrasound showed my thryoid was enlarged.

In the end, I decided to bypass all the so called experts and contact an endocrine surgeon myself. So far he has been wonderful and even if he wasn't convinced that my parathyroid wast the problem to begin with, he hasn't just given up on me. He suggested tests for me to get and always answers my questions. He eventually diagnosed me with Normocalcemic Hyperparathyroidism and operated to remove the pesky para.

After surgery, my TSH rose and finally started to show that I had Hypothyroidism - which I suspect I have also had for years. I now have a wonderful GP and an holistic GP as well that are working together to get my thyroid sorted. I tried synthetic thyroid replacement for a few months and didn't see a lot of improvement and so am now trialling Natural Thyroid Extract. Wish me luck! I can honestly say that this last few days, 6months post surgery and 2weeks on NTH that I feel better than I have in a long, long time.

My argument is that we shouldn't be having to diagnose ourselves - we trust doctors to do this for us. But I know so many people that have been lost in the system and put onto anti-depressents or deemed to be suffering from anxiety, without bothering to do anymore testing. If you feel that something is wrong and your doctor is not helping you, please do not lay down and die - get a 2nd opinion and fight. Keep fighting until you are satisfied that everything that can be done, has been done. It is your life and you deserve to be allowed to live it to the fullest.





  1. I like that you have written about this Gladys :)
    Getting it out there and getting it off your chest. I hope that you writing about it is the start of a good journey into getting yourself back to normal. In the way of us getting the written story that has a happy ending!
    I am still keeping everything crossed that you get the diagnosis you are after and get this disease fixed and also getting the information about it out there for others :)

    1. Thanks Hayls :) I honestly believe that the pregnancy vitamins ( containing calcium ) were probably responsible for the miscarriages. Once I stopped taking them, I stopped losing babies. And the vitamin D makes me feel so much worse - which is why I think I have gone downhill since moving to Australia....

  2. Well I had my 4DCT scan and they found what looks like an adenoma. My ionized calcium was high, serum calcium borderline, PTH normal and vit D slightly low. The surgeon now says if I can show him blood work where both my calcium and PTH are high and my vit D normalish, he will operate and take out the diseased gland. In the meantime I am in limbo land. I went to see my gp (when I say my gp, the medical centre where you see a diff gp each time) and asked for the thyroid antibody test as well as my regular calcium, PTh and vit D tests. He gave me the form for the antibodies, but refused the calcium tests saying I only had it done a month ago. Wouldn't listen to my reasoning and I left near to tears. I have an appointment tues with the other medical centre here. Hoping they are more compassionate there. I am just hanging on waiting for that high calcium and PTh test.....

  3. Gladys, I enjoyed your article and have experienced most of the above for the last ten years. I feel and relate to you more now and hope you find a way to regulate. My DOC keeps upping my thyroid meds and now I'm on high blood pressure meds and cholesterol meds. Wishing you much peace, health and prosperity and look forward to reading your work. Be well, my friend, MG ❤❤