Sunday, 12 June 2016

Hypopituitarism, Hypithyroisism & Osteoarthritis

This is one brave young woman's fight against pain on a daily basis, told to me via interview.

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What is your name and age?
My name is Carol Pocknall
I'm 41yrs old.

When were you diagnosed with hypopituitarism?
I was diagnosed with hypopituitarism in April 2015

How was a diagnosis made?
The diagnosis was made via blood tests at the hospital but as there are many elements to the condition I then had further glucagon and insulin stress tests plus a brain scan (MRI)

What symptoms did you / do you have?
The symptoms I had were;
Extreme tiredness
Muscle weakness - couldn't even raise my arms at times
Muscle pain - hips, knees and made my osteoarthritis in my spine worse
Nausea if standing for more than a couple of minutes
Light headedness
Sever headaches
Rapid weight loss - not eating due to the nausea
Lactating even though not, or never have been pregnant
Menstrural cycle totally stopped although not pregnant
Always felt cold - the exact opposite to what I always had been
Passing water more often
Confusion (brain fog) loosing track of conversations, can't find the words I want and not 'computing' what people say
Just generally feeling run down

What causes this condition?
The cause is often a tumour on the pituitary gland (hence I had the MRI) or trauma to the glad.
I have neither so my cause is unknown.

Is there a cure?
There is no cure

Is it hereditary?
It is not hereditary

Are you prescribed medication?
Yes I am prescribed medication.
I have to take steroids (hydrocortisone) three times a day due to my pituitary gland not producing cortisol.
The steroids keep my alive.
Without them I will go into adrenal crisis and could loose my life.
I am on the steroids for the rest of my life.
I have to be careful if I become unwell as cortisol levels will drop so have to increase the steroids.
I have to wear a medical ID.
I also have to inject growth hormone everyday as again, due to the pituitary gland not working I do not produce growth hormone. (Yes I am fully grown but the growth hormone is needed for general well-being, it helps with the fatigue and muscle weakness) I will have to inject for the rest of my life.

What treatment have you received?
No treatment is available, just the medication

How has this condition affected your life?
It has affected my life massively.
Continuous hospital appointments and blood tests.
Can no longer work full-time due to the muscle weakness and pain and fatigue.
Always tired, often need a sleep during the day.
Can't walk as far as I used to - a 'day out' wears me out.
Have to pace myself so I can get through the day.
Feeling stupid when I can't keep up with conversations or blurt out rubbish as I can't find the words I want and anything comes out it it's place.
As an example, I once asked my husband to spray candy floss around the bathroom, I of course meant air freshener.
I also told my brother there was an Eskimo in the fridge for him - I meant a (chocolate) eclair.
Feeling down about weight gain (I know I said weight loss in symptoms but now I'm on medication I've gained a lot of weight)
Not as confident as I used to be.

What advice would you give others recently diagnosed with this condition?
I can understand people being frightened when you're told you have a life threatening condition but there is a huge difference between life threatening and terminal, don't let it make you live in fear.
If you feel unwell, tell your endocrinologist (endo) just because your blood tests may be in range, it could be that you need to be at the higher end of the range so need higher doses of medications - listen to your body.

When were you diagnosed with hypothyroidism?
I was diagnosed with hypothyroidism in April 2015

How was a diagnosis made?
The diagnosis was made via blood tests

What symptoms did you / do you have?
I had all the symptoms as in question 4 but did not realise it was two different conditions.
After diagnosis I learned that the extreme tiredness and later weight gain was down to hypothyroidism

What causes this condition?
Hypopituaritism caused my hypothyroidism

Is it hereditary?
It is not hereditary

Are you prescribed medication?
Yes I take thyroxine daily.
I will need this for the rest of my life.

What treatment did you receive?
No treatment, just the medication

When were you diagnosed with osteoarthritis?
I was diagnosed with osteoarthritis in 2008 ( can't remember the month) after 17yrs of being told there was nothing wrong with me!

How was a diagnosis made?
Diagnosis was made by x-ray (on my spine)

What symptoms did you / do you have?
Excruciating back pain, sometimes preventing me from walking

Is it hereditary?
It is not hereditary

Is there a cure?
There is not a cure

What is the cause of this condition?
General wear and tear

Are you prescribed medication?
I am prescribed medication on an 'as and when I need' basis.
During bad flare ups I have co-codamol (30mg codine) arcoxia and if it's really bad also diazepam.
As much as possible I try to not take medication or self medicate with 'off the shelf ' paracetamol and used to ibuprofen but I now can not take these due to the steroids.
Being in pain 24/7 becomes the norm and you learn to live with it to a certain degree and not rely on the meds.

What treatment have you received?
No treatment.
My spine has tried to repair itself and grown a spur.
A bone spur is an extra growth of bone but it doesn't necessarily grow where it should!
Mine is growing into my nerves (yes that is as painful as it sounds).
I have been told I can have surgery to remove the spur but it will grow back.

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Help & Support:

http://www.pituitary.org.uk/information/pituitary-conditions/hypopituitarism/

http://www.btf-thyroid.org/

http://www.arthritisresearchuk.org/arthritis-information/conditions/osteoarthritis/living-with-oa.aspx

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