Glivec and hair fall

Hi Shaz
I have been on Glivec, Nilotinib and now dasatinib, and hair loss on all 3. Where are you being treated? Perhaps there are not many CMLers that your Dr sees, because its a common problem. My hair is thin, and I keep it short, but do be careful to keep a hat/scarf on in the sun. Burnt head hurts !!

ATB
Pennie

Hi Pennie

I am being treated at Kings College Hospital London. The consultant yesterday i saw was very vauge about my questions. The problem at King's is that my consultant (Dr Ho) has left Kings. He was the best doctor i have been seen by at Kings. My appointments are every three months and everytime i go i see a different doctor/consultant.

What hospital are you being treated at? Is it the same case at your hospital too (Doctors being changed every visit)?

Shaz

I also have an under active thyroid, funnily it was my thyroid that masked my cml as the doctors always said it was my thyroid making me tired, cold etc. Although i have not had hair loss, the above site that Sandy has put the link for is really good. If you have any q's about the thyroid i may be able to help as i have had it for 11yrs.

Thanks

Naomii

I live in Morden, so perhaps a coffee when we can meet up at Kings?
ATB
Pennie.

Hi pennie
I am sorry I thought you lived in staines (must have seen someone writing here about living in staines). I live in twickenham. So sure a coffee would be great.
And once again thanks for all the info/help.

Regards

Shaz

This was copied by member of thyroid Uk discussion forum because links to UK press are not available for those outside UK.

MAIL ON SUNDAY 3rd July 2011 REVIEW SECTION
- PAGE 23 -
THYROID ARTICLE AND CASE STUDY.

"FOR TWELVE YEARS I WAS A VICTIM OF "THE GREAT THYROID SCANDAL"

Matthew Barbour

For Gayle Coyler, the past decade has been a battle stop. Not only did it take two years to be diagnosed with an under active thyroid-despite suffering symptoms, including extreme weight gain, exhaustion, depression and joint pain - but it took nearly another 10 for her to convince doctors that she had been prescribed the wrong medication.

"Between 2001 and 2002, I put on nearly 5 stone, I was constantly tired and I couldn't concentrate" says Gayle, 44, a Business Support manager. "throughout this time, I visited my GP but I was told my symptoms were due to my weight, the stress levels from my job, and being a single parent. The possibility of a thyroid condition was never mentioned. By chance, a colleague had suffered the same symptoms and been diagnosed with thyroid disease. She told me I might have the same ".

Gayle, from Whitstable, Kent booked an appointment with her GP to ask for a test. "Despite still insisting my problems were down to weight and stress, he agreed. A week later the test came back positive and I was diagnosed with hypothyroidism", she says.
The thyroid is a gland located in the neck. it produces a hormone called thyroxine (T4).The body converts this into a hormone called triiodothyronine (T3) responsible for regulating the body's metabolism, the rate at which it burns energy. Hypothyroidism occurs when the thyroid cannot produce enough thyroxine or cannot convert it into T3. The condition effects 15 in every 1000 women and 1 in 1000 men in Britain.

Gayle was prescribed synthetic thyroxine, taken in tablet form, and told to return every 6 months for a hormone test. Over the next two years, her dosage was trebled, but her symptoms failed to improve.

"I tried to explain that the medication wasn't working, but the doctor said my weight and lifestyle was causing the problem. It was exasperating" she says.

In late 2004, Gayle moved form Kent to Bristol and was referred to see an endocrinologist at Bristol Royal Infirmary. "As soon as I walked through the door, he said he didn't know why I was there", she says. "He told me that my T4 levels were fine, that the drugs had worked, and suggested that the problem was that I was a 'couch potato'. At the time I was senior supervisor for a team covering the whole of South Gloucestershire and Bristol, so I was far from inactive. I left in floods of tears feeling as if I would never get taken seriously".

In the following years, Gayle saw many doctors, each dismissing her concerns. In desperation, she turned to the Internet and came across a web site run by Dr Barry Durrant-Peatfield, based in Surrey.

On his site, it explained that he had left his job as a NHS GP in 1980 to open a private practice to offer treatments that the NHS would not, and written a book called 'The Great Thyroid Scandal and How to Survive It' about how synthetic thyroxine does not work for everyone.

"I saw Barry in March last year". He asked for all my blood test results and for me to keep a diary of my food intake, blood pressure and temperature when I woke for a week.

"When he saw my results, he told me he knew exactly what the problem was. I was not converting the T4 form of the hormone into the active t3 form, so while blood tests showed I was fine (they only monitor T4 levels), this was far from the case. I could have cried I was so happy. It felt it was light at the end of this long tunnel".

In 2001, Dr Durrant-Peatfield was suspended by the General Medical Council for his stance on thyroid disease treatment and subsequently gave up his license to practise, meaning he could no longer prescribe medicines. However, he recommended Gayle purchase a synthetic T3 supplement through a web site.

"Within 2 months, I had lost more than 2 stone and felt like a new person. Friends told me "the old Gayle was back" - for me it was nothing short of a miracle" Since then, Gayle, whose son Tom is 23, has finally been prescribed the T3 supplement on the NHS after her GP attended an endocrinology conference and heard about Dr Durrant-Peatfield's theory and how it works for many patients. "Now I can get my medication on prescription which is unheard of, but similar to many GP's, mine is afraid of going public, she adds.
Gayle is not alone in her plight. An estimated 250,000 UK patients are suffering with the same condition and are either being misdiagnosed or being prescribed incorrect medication because the NHS testing guidelines and attitudes to synthetic T3, according to campaign group Thyroid Patient Advocacy (TPA).

However, Dr Mark Vanderpump, consultant endocrinologist at the Royal Free Hospital in London, warns; "roughly 5% of patients do not respond to conventional T4-only therapy, and there is active research being carried out to understand why these people react differently to their medication.

"We must take an evidence based approach to what works best - there have been 12 trials that show T3 makes no difference to these patients' health. Clearly sufferers are taking T3 because they feel desperate, but clinical evidence shows it doesn't work.

“The current version of synthetic T3 results in dramatic peaks and troughs of hormone levels, which can increase the risk of heart problems and bone density. As doctors, we have to work within guidelines, from organisations such as the British Thyroid Association and the Royal College of Physicians".

Sheila Turner, 73, who set up TPA 6 years ago after suffering a similar experience to Gayle, disagrees. "We want an Enquiry into how this condition is dealt with by the NHS" she says, "everyday, my InBox is full of Emails from people who say their GP's are too frightened to step away from official guidelines.

"Cost differences, or lack of evidence of the T3 drug working are cited as reasons not to change. This is ridiculous when we have so much anecdotal evidence to the contrary."

The synthetic T3 cost £43.32 for 28 tablets, while T4 is £2.08. But Dr Durrant-Peatfield believes costs and ignorance cannot stand in the way of so many thousands of being denied what they need.

"The truth is that T4 doesn't help many patients. It might cost the NHS under a tenth of T3 but why even prescribe a drug that isn't effective. In the meantime, thousands of men and women are suffering without the right treatment".