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 at the time 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 my blood pressure 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. Suddenly 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. My left kidney started hurting and my right eye was twitching like mad. Honestly I felt as if I was totally falling apart and no one seemed to understand how it felt.
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. In 2011 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, although I ended up with cholestasis, pre-eclampsia and gestational diabetes!
In August 2011, when my baby was just 6months old, I was rushed to hospital with a bp reading of 200/110. To say that I was terrified would be an understatement! 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. A second Endo then set about telling me that there was nothing at all wrong with me that taking anti-depressants, high doses of vitamin D and having my hubby working closer to home couldn't fix! Condescending so and so he was! All I can say about that, is thank goodness for Dr Google!!! There is a wealth of info on the internet.
I have been sent to a neurologist, rheumatologist, endocrinologists, cardiologist and endless GP's. The cardiologist suggested to get my parathyroid/thyroid checked out as she couldn't find any probs wth my heart - 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 pushed for thyroid testing as well 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. I have since learned from good sources on the internet, that they should be testing your actual thyroid hormones (FT3, FT4, rT3 and antibodies).
I have been sent to a neurologist, rheumatologist, endocrinologists, cardiologist and endless GP's. The cardiologist suggested to get my parathyroid/thyroid checked out as she couldn't find any probs wth my heart - 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 pushed for thyroid testing as well 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. I have since learned from good sources on the internet, that they should be testing your actual thyroid hormones (FT3, FT4, rT3 and antibodies).
In the end, I decided to bypass all the so called experts and contact an endocrine surgeon myself. He has been wonderful and even if he wasn't convinced that my parathyroid was the problem to begin with, he didn't just give up on me. He suggested tests for me to get and always answered my questions. He eventually diagnosed me with Normocalcemic Hyperparathyroidism and operated to remove that pesky para.
After surgery, my TSH rose and 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 now, post surgery and taking Thyroxine and NTH, I feel better than I have in a long, long time. I recently found out I have Ankylosing Spontilitis as well, but I still feel better than before :)
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 on 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 or a 3rd or 4th 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.
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