Providing support to people affected by Turner Syndrome and their families in New Zealand
Providing support to people affected by Turner Syndrome and their families in New Zealand
Hi everyone. I’m Marina. I have Turner Syndrome and was diagnosed last year with Coeliac Disease.
Since I have been taking Eltroxin for low thyroid function, I have been asked to write about both these issues.
Firstly, Coeliac Disease IS/CAN BE connected with Turner Syndrome and as such should be one of the many things to be on the lookout for. People should have a coeliac markers blood test done to make sure. I managed to slip through the system! I was diagnosed because I took Fosamax for low bone density which gave me moderate gastritis; because I had such an upset tummy we had to check out all avenues and fi nd out what was going on. I had taken Fosamax previously and stopped because of oesophageal irritation but this time my tummy was sore and painful as well as irregular bowel motions. I stopped taking it and went to my doctor and we decided on a follow-up which was coeliac markers, colonoscopy and gastroscopy. No after effects, and I remember nothing about the procedures except waking up and having some lovely soup and a date scone afterwards, which tasted wonderful following 24 hrs of no real food! I went back to the specialist, my coeliac markers were positive and the biopsy they took with the gastroscopy was positive – so, no escape – no gluten from now on. Gluten is commonly found in wheat, rye, oats and barley, but hides in a lot of products, everything has to be purchased with care.
I have joined the Coeliac Society and it is a wonderful source of information especially when you fi rst fi nd out. There is a great web site and copy in book form sent out each year: www.mfd.co.nz, which lists gluten free food.
This is food that has been tested and proven to have no gluten. I am going overseas and you can also get cards, requests for chefs etc in different languages which makes things a lot easier at restaurants etc.
When you are fi rst diagnosed you do not know where to start, and I have never spent so long in the supermarkets as I did in the fi rst couple of months! But you get the hang of it. There are lots of things available from nearly an infi nite range of fl ours and mixes to bread, biscuits and ready made treats and even in the year I have been diagnosed it has increased.
So while it is frustrating when there is nothing on the table you can eat at supper, and pot luck meals can be limiting, you learn to adjust – to not being on a ‘see food’ diet! The gluten free food actually tastes better to me, no doughy reaction in my mouth and you gradually start to get more energy etc.
I started taking the new form of Eltroxin in Feb/March. I had just started feeling pretty good after the gastritis and sorting out the gluten free diet, but then by April/ May I started not being so well in a number of ways.
It was then I heard about the Eltroxin reactions people were having, so I monitored myself for a couple of months, by which time I was starting to get dizzy and lose sense of balance. I went to my doctor with my list of reactions and he added my reaction report to the many others that have been received.
My reactions were dizziness/loss of balance, headaches, fuzzy thinking, nausea, tingling hands and feet, lack of peripheral circulation, general aches and pains, and lack of energy.
As I write, I have only been on another form (which has only just become available and you have to pay for at the moment) for a couple of days, but I no longer have cold hands and the dizziness etc is disappearing.
Hooray! I’m beginning to feel normal again. If you are on Eltroxin for your thyroid function and are having funny things happening, it could be the cause, so get to your doctor and discuss the situation with them.
By the time you read this, the new medication could well be funded. These side affects creep up on you and you do not really realise how much effect one little tablet is having!