This is information from TUK. It is self-explanatory.
thyroiduk.org/tuk/newspage....
I have emailed my MP a short while ago.
HAS EVERYONE WHOSE HAD T3 WITHDRAWN WRITTEN TO ... - Thyroid UK
HAS EVERYONE WHOSE HAD T3 WITHDRAWN WRITTEN TO THEIR MP?
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seeing my MP tomorrow about T3 post code lottery so will be letting him know!
I would encourage those who have not had it withdrawn to contact them too. I have. Those of us still being prescribed are constantly under threat and stress of waiting for the sword to fall!
And what's more we are the proof, still out here, that it works!
This fight is not just for ourselves but for our children and their children. This debacle has just gone on too long.
What you've stated is very true. It is also for others who may develop hypo and the consequences of not having options if levo is not working for them.
Absolutely shaws . And we all have to stand up and stand together to show the extent of the problems faced by patients. I don't want my kids going through 30+ years of trying to get health problems sorted. I have always thought my younger son to be Hypo - we have had several episodes over the years since he was very small where is is just lethargic, cold etc...I have seen him go through the same things I did a as child. Dr's would not listen.
He had some sort of 'asthma' attack, that put him in hospital at about 8 years old, his SATs levels were extremely low. The only outward signs were a hoarseness and breathlessness when walking a few yards. We had just returned from holiday and he was back at school the following week. So I thought I'd better get him checked out as it was Friday, and didn't want to take the chance of him being ill over the weekend. He ended up being sent into hospital straight from GP's, for two night was on oxygen and being checked every hour. Eventually they had to pump him with steroids to get his SATs sorted. A month later SARs was publicised.
We are now about 8 years into a nightmare of getting him, at 24yrs old, sorted. Having had some sort of Glandular Fever 'like' virus 8 years ago. Suspect it was GF, but no one thought to check. Long story, in short, I googled when he was too ill to go back to school, skin was red raw and peeling etc. Realised if given antibios for tonsillitis, when GF can cause this. Why did Dr's not know this?? He was a prime suspect for it?
He is now 3 years behind with studies, all because of 'flare up' usually caused by any stress...i.e. exams. All points to Adrenal. Took him to Dr P early last year, definitely adrenal. Yet GP's have tested and scanned him for everything but will not look at adrenal. I did eventually get GP to do a T3 reading to be on safe side, (she said no point as she couldn't interpret it?? No surprise! I told her I could! )
My son still struggles, exam time usually! Flare ups are fewer and less sever.
I'm pretty certain my older son is Hyper. Which is much more common in the family. That all to come!
So we have to get this all sorted now. Training and understanding of thyroid disease in general is just not good enough.
You are very correct.
So far, now being hypo for 10 years, it seems as if doctors no longer know any clinical symptoms: only diagnose by a blood test and the TSH when it reaches 10 (in UK): don't give sufficient doses: or levo doesn't suit some people but not offered an alternative. Are unaware hypo causes low temp, low pulse which is easy to detect without a blood test.
So the person suffers disabling symptoms, is given 'other' prescriptions for them which dont help, so we may be diagnosed with a 'somatoform' condition and which I think means a 'mental' health problem. The doctor is fed up seeing them appear in the surgery but he/she isn't capable of diagnosing the patient.
I am sorry your son has had problems and you and I think a Mother's instinct is best, far more than doctors and it assumed they know more than we do.
I was in a similar situation when daughter was young: always having problems: always ailing and tonsils removed: etc. Sent here and there but no diagnosis. I mentioned to our doctor that my sister had Rheumatoid Arthritis and he ticked me off in no uncertain terms for 'putting ideas' into her head.
If only he had taken a blood test or referred her, with the result that she's was not diagnosed with juvenile R.A. but has had a life of pain/operations/replacement of nearly every joint in body, including fingers toes. Thankfully she has a great husband, second to none, but she is wheelchair bound now and I ask myself often 'could it have been prevented by thorough testing and familial history'.
I do hope your son's health is sorted out and your other son as well.
in reply to shaws
It's very sad to think the answer might be 'Yes.' Take care. xx irina
Omg! The crap we have to go through! Thank various gods they have you for a mother ~ someone to stand up for them👍. We have to learn and fight against this ignorance and corruption, for ourselves and our children, and for any other poor, unsuspecting sufferers that become victims of this medical fiasco! Good for you!🌟
Done. Nus Ghani, Wealden.
Vince Cable has been allocated an Adjournment (or at the end of Parliament's day) debate on Hypothyroidism and T3 this coming Monday! He has been heavily briefed on the cost issues arroind T3. You will be able to watch live on the BBC Parliament website. Please ask your MPs to attend.
Thanks for the information.
moyramm in reply to
Is this debate still planned for Monday as I thought it was being moved to Tuesday X Moyra
This is from TUK's site but I will add in lynmynott
thyroiduk.org.uk/tuk/newspa...
Sorry Shaw's but I read a post on the ITT site last night that said the debate had been changed to Tuesday .So now I am not sure if it is Monday or Tuesday X Moyra
in reply to moyramm
Nope, I am in direct contact with Vince Cable & his office, and it is the EU withdrawal bill which has been moved to Tuesday. Someone on the ITT facebook page got the wrong end of the stick.
Parliamentary calendar: calendar.parliament.uk/cale...
moyramm in reply to
So sorry I had seen the ITT post and thought it was the T3 debate that had been changed X Moyra
in reply to moyramm
The T3 debate was going to be late at night, but because the EU Withdrawal Bill (which was scheduled for before it on Monday), will now be on Tuesday, the T3 debate will be earlier, but still on Monday. Hope that all makes sense! Thanks for your support! Liz.
I wrote to my MP, I provided her with a great deal of information as to why I shouldn't have T3 stopped, but she wasn't interested and did nothing to help.
That's a shame but most who don't have hypothyroidism or know someone who has ,couldn't imagine at all how difficult is for some to recover their health without options being prescribed, other than levo if patient isn't well.
At least you tried and I wonder if the MPs will be present when the debate begins or whether most will leave the floor.
Very true shaws. I am so pleased that I found NDT Nature Throid - for me its even better than T4/T3 combination, so it was probably a blessing in disguise when my T3 was stopped. I am so grateful to Thyroid UK and the forum for all the information that has helped me find my way back to good health.
Doctors used to prescribe NDT but this is what a TUK Adviser/researcher/scientist wrote to the BTA and he made three yearly requests for a response to his statement before his untimely death - they never did.
I saw my MP in person in September he said he would take it up with the CCG and Jeremy Hunt. Never heard anything and a later email and letter have remained unanswered. When I ran into him at the CCG AGM he apologised and said "you know, other things". so I don't bother with him now.
It is disappointing when some people say one thing then do another. What chance have we if doctors/endocrinologists are lax and MPs say one thing then do another.
If a member of their family developed hypo, they can afford private doctors who will prescribe NDT or T3.
Considering it is their patients lives which can be improved or not by their action or non-action.
Written to MP more than once but he just does not seem interested. Just passed on all the rubbish we have been reading.
I've emailed my MP, Laura Pidcock, but I think she's about to go on maternity leave.
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