63. TS – Why restricted height and infertility are not the whole story!

I have not blogged about Turner Syndrome in a long time but looking back at some of my early post has inspired me I have recently read an anthology of autobiographical essays by women with Turner Syndrome ‘Standing tall with Turner Syndrome’. It was very insightful to read what other women with TS thought were the major issues they faced with TS.

I have had reason to dwell on the full impact TS has had on my life and the many ‘curb ball’s it has thrown at me in the last twelve months. I do not do this to say in any way I have had more difficulties health wise than other women but to give an indication of all the fun things that TS can bring! Here is why!

- In May 2013 after three years of discussing spotting between periods with two GPs, an ultrasound scan, and a fairly frightening discussion and my annual Turner Syndrome check-up I was sent to a local hospital’s gynaecology clinic. The Doctor at this clinic suggested I have a D and C to check out the reasons by my spotting. I did not expect to get a call two days later calling me in two days hence for this procedure! I knew just what could be wrong and got very nervous! I had the D and C which went off well and thankfully all that was wrong was a cervical polyp. However this cervical polyp had caused a lot of doctor visits, discomfort and worry. I taught a couple of months later that another friend with TS had also gone through the same procedure with same outcome.

- I have had pains in my left ankle and foot over three years. I firstly noticed this on a trip to Cambridge with my book group in August 010. After a lot of GP visits (to three different GPs! ) one GP diagnosed Plantar Fasciitis. When it did not improve, I had to have a very painful cortisone shot (this occurred over the period of the London Riots of August 2011). After another year or so when things not getting much better my GP finally sent me for an X-Ray. The X-ray indicated I have early arthritis in this ankle along with Oestopenia. This finally allowed me to take appropriate action.

- I recently had a blood test as part of what I call my TS annual MOT that indicates that I may possibly have the beginnings of a ‘fatty liver’

There is one other ‘gift’ which I have been trying to deal with over last two years but this is a separate post in itself!

Here are some of the other health issue I have all of which can be related back to TS

Coeliac Disease- This directly impacts on my life three times a day when I have breakfast, lunch and dinner. It makes going out for a meal or eating with others (such as when I visit them) a minefield! I could go on forever about this. It is a significant health issue in and of itself and I could create a blog about my life with Coeliac disease alone! I know at least three other Women with TS who have Coeliac Disease. I have read that while the incidence of Coeliac Disease is 1 in 100 in the general population it is 1 in 20 in Women with TS.

Hypothyroidism

Bone density / Oestopenia- OK my last bone density scan was good but I am aware that my hip bone density was lower than it should have been for some years. By making sure I looked after myself, taking my calichew, eating high calcium foods and taking exercise, I have got the bone density in my hips into the normal range. I know some of my other friends with TS have issues as well.

Astigmatism – I have worn glasses for almost three years.

I have to take three different medications at three different points of the day. Calichew and thyroxin do not agree to I have to take them at opposite ends of the day. I fit in my HRT at lunch time! It is to put it mildly a nuisance to have to remember to take each one every day.

Hearing- I had glue ear as a child and some loss of hearing.

But my issues are nothing to the issues some of my friends face. One good friend has had gradual loss of hearing over the last few years. Lucy has significant hearing issues. I do not want to be controversial but I would say that the issue of TS and hearing is almost as significant as the issues of height and fertility, I have seen how it impacts on the quality of the life of my TS Friends. It impacts on all our interactions with others and our ability to participate fully in everyday life. Again I stress that I do not make a special case of myself – I am just using my own experiences to illustrate the point that for women with TS there are other health issues that have a major impact on our quality of life besides height and fertility.

I am grateful to the Turner Syndrome clinic that I attend for monitoring all these issues.