I have just made an appointment to speak to my MP (also a junior health minister) at his local surgery on May 24th. I had to submit the subject of my concern which is the problem in supply of Liothyronine (T3).
I urge everyone to find out when their MPs are having a surgery, make an appointment and speak to them personally about this issue.
Some have already contacted their MP. See nobodysdriving blog.
thyroiduk.healthunlocked.co...
I think to a letter to the Government Health Minister should also be sent.
It's a scandal there is no stocks of T3.
Yes I have been reading the T3 blogs. It occurred to me that it is harder to ignore the requests to investigate this problem if presented in person
I have written to editor of The guardian newspaper. I will not stand for our illness being taken for granted.
Dear Sir.
I am writing to you to enquire if you would be interested in helping many worried hypothyroid sufferers that depend on the medication Liothyronin T3.
According to the only pharmaceutical manufacturer Mercury Pharma that supplies the medication in the UK they have they have run out of the main ingredient.
I and many other hypothyroid sufferers depend on the medication and find it extraordinary that the manufacturer has not set up contingencies to help sufferers like myself.
Hypothyroid sufferers that depend on the medication Liothyronine feel our illness is being taken for granted.
Many sufferers as myself are writing to their MP'S and contacting the media.
Given the fact that hypothyroid illness indeed on the list of illnesses that their bodies would indeed pack up if they did not have the medication support to sustain this from happening.
All hypothyroid sufferers are medically exempt from NHS charges because of the seriousness of the illness.
It is a fact that many sufferers like myself cannot tolerate any other form of thyroid medication apart from liothyronin T3.
There is considerable ongoing controversy at present concerning the difficulties that all hypothyroid sufferers are being subjected to and what they are experiencing through unacknowledged and ignored treatment where doctors and specialist endocrinologists are concerned.
The information goes across the board on specific Thyroid support groups such as:
scottishthyroidpetition.com and the many other sites on the internet and Facebook even thyroidchange.com which is the American thyroid site.
I wonder what would happen if diabetics were informed that insulin was out of stock it doesn't bare thinking about the emergency situation that would pile up.
Myself and many other worried hypothyroid sufferers would be very grateful to you if you would help us bring awareness to our dilemma or indeed help point us the right direction how to raise awareness.
I recently wrote a letter to my local MP in Hereford as below:
I did receive a response from Bill Wiggin stating that he would contact the local NHS trust however given the urgency I believe that given the seriousness of hypothyroid sufferers illness I feel it is being taken for granted.
I look forward to hearing from you soon and hope you could take all hypothyroid sufferers plea in to consideration and report on it.
Kind regards
Mrs. Kerry Bird and on behalf of the hundreds of hypothyroid sufferers that depend on the medication of Loithyronin T3.
Dear Mr. Wiggin.
I am writing to you as a resident in Hereford and a patient in need.
My name is Kerry Bird.
I am a 53 year old wife and mother and have hypothyroidism illness which is
a life threatening illness if it is not treated with thyroid medication.
Due to the illness being life threatening all sufferers are medically exempt
from NHS charges.
Recently it has became apparent that I could not tolerate levothyroxine T4
and must avoid it and that I needed 'T3' (liothyronine) only treatment to
get well.
I am getting well on Liothyronine.
The medication I am on is unique in many ways, but also is 'quick acting'
(it enters and leaves the body fairly quickly: ie couple of days).
Also for some complicated reason, there is ONLY ONE provider for this
medication to the NHS, this is Mercury Pharma.
There is ONLY ONE type of liothyronine licensed in the UK by the MHRA. this
is 'Liothyronine 20mcg' by Mercury Pharma.
If I run out of this medication I will deteriorate EXTREMELY quickly and
within 3 days I may require hospital admission as on the second day of no
medication I already cannot get out of bed as I am in severe pain all over
my body.
When I went to get my repeat prescription from the pharmacy 2 weeks ago it
transpired that Mercury Pharma has a 'production problem' and liothyronine
will be totally out of stock for a minimum of 2 months but Mercury Pharma
predicts this will be a LONG TERM problem.
My pharmacist was unable to source any liothyronine.
I quickly alerted my GP and my endocrinologist at Warwick hospital.
Between them I sourced enough Liothyronine to last me for the next four
weeks.
But now there is NO MORE to be found.
I have contacted the MHRA and they told me the pharmacist has to work in
conjunction with the GP and between them two they MUST source something for
me.
The pharmacist has found an alternative which can be imported but it is ten
times more expensive than the one I am currently on, and other sources are
unlicensed (they are perfectly safe medications, used extensively in the USA
but just not licensed over here).
My endocrinologist already told me that the only liothyronine he will be
able to prescribe is the one which is licensed (ie the Mercury Pharma one),
however if none can be found then what do we do?
I am SURE my local PCT and GP have a duty of care and surely they cannot
decline to prescribe the more expensive version that the pharmacist can
source for me. After all this is only needed during this time of need then
eventually I will go back onto the 'cheaper version'.
Also unlicensed medication CAN be prescribed in the UK, the doctor
prescribing has to take responsability for its prescribig of course, but of
course with no medication I am SERIOUSLY worse off than with it so surely
the GP in this case can prescribe? after all it is the SAME medication/same
ingredients.
After all with no medication I will get too ill to look after myself.
I am acting now, 4 weeks before I run out as I do not want to find I get
admitted into hospital 4 weeks from now. My husband works in Libya and is an
ex hereford forces man when I become very ill because of having no medication my husband
would have to return home this would cause loss of our income.
The unlicensed liothyronine the pharmacist can source takes time to import,
so action is NEEDED NOW or I will not get it in time for when I run out.
Mercury Pharma has already told me there will be NONE until the very least
end of June and most certainly later.
PLEASE I BEG YOU/URGE you to contact my PCT and my GP and tell them they
have to act now.
I am spending every minute of the day worrying about this, please help me.
My GP is XXXX Hereford.
Many thanks
Kerry Bird.
Edited by admin to remove GP's name (Please don't Name and shame identifiable individuals)
An excellent letter and hope things get resolved as it would be terrible to be forced back onto levo (as some Endo's still insist it is the best) (little do they know as they have not had to suffer the consequences).
We need to be able to source whatever thyroid medication suits and which makes us well.
HI, WHAT FANTASTIC LETTERS!! I DO HOPE NOTICE IS TAKEN FOR ALL OF YOU ON T3 ITS A REAL WORRY I CAN,T THINK HOW THEY LET STOCK GET SO LOW, THEY MUST HAVE KNOWN A WHILE BEFORE THAT THERE COULD BE A PROBLEM, I TAKE LEVOTHYROXINE AND HOPE THAT IS NOT A PROBLEM IN THE FUTURE,I ADMIRE YOUR TENACITY AND WISH YOU THE VERY BEST FOR YOU AND ALL WHO TAKE T3, EVE X
Blimey I have just read this. I take T4 and T3. I am due to collect a new prescription so once I do this I will also write a letter.
Hope you don' t mind if I copy yours!
My MP is usually very good at responding to my letters
Val
About to start T3 - desperate....
Non-standard MP response to T3 withdrawal. 
Wrote to my MP about cost of T3 in Crete and he replied
Hi guys, I have a thyroid ultrasound-guided biopsy in a few days and have no idea what to expect. Can anybody shed light on the procedure?
Interested in your Health Records? Citizens Speak.
