As my aches and pains have started to come back after a relatively pain free period of about a month, rheumatoid arthritis it set me thinking about all the other diseases and conditions which have fit my symptoms over the past 10 years.
My endocrinologist cast me adrift with an incorrect diagnosis of FHH over 2 years ago as my blood calcium level was not massively high and my urine calcium was low.
Many of us don’t need to be told that it can be a long and drawn out process getting a diagnosis of Primary Hyperparathyroidism.
GP’s may never see a case of Primary Hyperparathyroidism and I was certainly my GP’s first case.
Our symptoms often fit in with many other conditions and many Primary Hyperparathyroidism patients initially get sent to see a Rheumatologist since muscle/joint aches and pains are usually caused by Rheumatological diseases.
One condition which I considered I might have was Fibromyalgia because it most closely fit my symptoms.
There are no blood tests for fibromyalgia! – A diagnosis is usually made based on symptoms after other things are ruled out (hopefully including a blood calcium & PTH blood test to rule out Primary Hyperparathyroidism).
A rheumatologist who hasn’t tested for Primary Hyperparathyroidism or referred the patient to an endocrinologist might miss the possibility of Primary Hyperparathyroidism and diagnose the patient with Fibromyalgia!
Here are the symptoms of Fibromyalgia listed below (taken from the NHS website) – any of them ring a bell with anyone else?
Poor quality sleep
Cognitive problems (‘fibro-fog’)
Cognitive problems are problems with mental processes, such as thinking and learning. If you have fibromyalgia, you may have: trouble remembering and learning new things problems with attention and concentration slowed or confused speech
If you have pain and stiffness in your neck and shoulders from fibromyalgia, you may also have frequent headaches. These can vary from being mild headaches to severe migraines, which may also involve other symptoms, such as nausea (feeling sick).
Other symptoms of fibromyalgia can include:
Not being able to regulate your body temperature (feeling too hot or too cold)
Restless legs syndrome (unpleasant sensations in your legs and feeling like you need to move your legs to get some relief)
tingling, numbness, prickling, or burning sensations in your hands and feet (paresthesia)
tinnitus (the perception of a noise in one or both ears that comes from inside your body)
depression – constantly feeling low, a lack of interest in the things that you usually enjoy, feeling tearful
Is it just me or does this not look like a list of symptoms for Primary Hyperparathyroidism?????
Fibromyalgia is a syndrome of symptoms – and a convenient pigeon-hole to put patients who can’t be diagnosed with anything more certain.
My personal experience is that my Rheumatologist wouldn’t know the symptoms of Primary Hyperparathyroidism if they smacked her in the face!
I do wonder, just how many people are out there, suffering in silence with undiagnosed Primary Hyperparathyroidism.
If you have been diagnosed with Fibromyalgia, it may be helpful to get your doctor to rule out Primary Hyperparathyroidism with a simple Blood Calcium and Parathyroid Hormone (PTH) test.