started this petition to
Ipswich and East Suffolk CCG and Minister of State for Health
*** PLEASE NOTE THAT I HAVE UPDATED THIS PETITION WITH FURTHER DEVELOPMENTS ***
I was called in to see my Dr this week and told they could no longer supply my T3 medication as the CCG had stopped funding it due to it being so expensive. I was diagnosed with an underactive thyroid was I was 17 and I have had problems with fatigue since I was a teenager. I have never been quite right since then but I have been much better for the last couple of years and I believe that is mainly due to two things: 1) being prescribed T3 and 2) improved diet. So when I was told they were stopping my T3 I was pretty unimpressed as you can imagine.
For years I had health problems, with prolonged periods off work. I kept going back to the Drs and they kept fobbing me off. I had read about T3 and I was convinced I needed it, so I kept asking them to test my T3 levels. I was told all sorts of nonsense including 'there's no such thing as a T3 test' and 'it's not available in this country'. Every time I saw the Drs they made me feel stupid and like a hypochondriac. I came away with tail between my legs and I kept vowing that next time I would be more assertive. In the end, as my health deteriorated and my quality of life declined, my visits to the Drs increased and one day, at the end of my tether, I threw my toys out of the pram and they reluctantly referred me to a Chronic Fatigue and ME specialist. The specialist recommended a number of things, including tests for my T3 levels.
After I had the test my GP called me in and admitted they had been reluctant to do the test as it was so expensive. At the time I thought he was talking about the test but in hindsight I think he was talking about the medication. I know there has been a lot of controversy surrounding the
diagnosis and treatment of thyroid problems. I don’t exactly understand it all but from what I gather people are not diagnosed or are misdiagnosed with Chronic Fatigue Syndrome, ME, Fibromyalgia amongst other things. For those who are diagnosed they are often prescribed the wrong medicine. Essential medicines such as T3 and Natural Desiccated Thyroid are withheld, even though they make such a difference.
Recently on Trust Me I’m A Doctor, they discussed this issue. On the programme they stated that pharmaceutical companies charge around £300 for two months supply of T3, while it costs just pennies to manufacture.
Taking away my medication is a travesty of justice. I BELIEVE IT IS A CONTRAVENTION OF HUMAN RIGHTS. I want the CCG to reinstate funding for my T3. I want Thyroid patients to get the correct diagnosis and treatment. I want Thyroid disease to be made a priority. I want to have quality of life.
UPDATE 24th September 2017
Since I originally started this petition there has been a couple of developments.
My T3 ran out a couple of months ago. I started to look for solutions. I discovered Dr Oliver Frey, a holistic thyroid doctor in Ipswich, but because he was a GP rather than a physician or surgeon, I was unable to claim for that on my health insurance and so I went to the Nuffield Hospital instead to see an Endocrinologist. I was able to obtain a private prescription for T3 and I was advised that it would cost around £160 per month. When my boyfriend took the prescription to the pharmacy it was actually £300 and so we decided to look into alternatives. We were advised that T3 was available in Greece at a cost of 50 Euros for one year’s supply. A friend was visiting Greece and they were able to source one month’s supply for 1 Euro and 15 cents. They were unable to source any more as the pharmacies had run out due to the UK tourists buying it all!
Other people recommended Natural Desiccated Thyroid (NDT) as an alternative to both T3 and T4 and many said that this is even better due to it being natural rather than synthetic. I sought advice from my friend Val Chater (TFT Val) who is a kinesiologist and using muscle testing she confirmed that NDT would be better for me.
NDT can be purchased online but again a lot of places were running out due to the high demand. Eventually I was able to purchase four months supply of NDT from Thailand for around £26 including postage and packaging.
Within less than two weeks without the medication, I became severely ill to the point where I thought I was going to have to take time off work. As I run two businesses and do not receive sick pay that would have been a nightmare. Luckily that was the day my package of NDT arrived from Thailand and I felt better within 24 hours.
In light of recent events I would like to update my petition and urge the CCG and NHS to consider offering NDT as an alternative to synthetic thyroid medication and to take this debilitating disease seriously.