please excuse this long-ish missive........after my lady was [ early last year ] ---eventually ---with a hyper-active thyroid after tsh/t3 tests were carried out via our gp----she was put on 60mg carbimazole per day ,she then developed a lung problem where eventually 9ltrs of fluid was drained from her right lung [ no reason for this to happen---could this be due to the thyroid problem not being treated....no answer as yet ----this had to be operated on [successfully] very soon after the endo that had never examined her e.mailed our gp with the instruction to advise the patient to STOP all medications untill her next appointment [5 weeks away] . I after gaining lots of info from this site STUCK MY FEET INTO THE GROUND and refused point blank to do this ,our gp actually agreed with us although he is not an 'ENDO' we then had a meeting with this endo who proceeded to try to cajole us into his opinion ----before examining the patient----but upon refusal----we agreed to ADJUST the meds to 30mg carbimazole p.d.increase levothyroxine[ by then she was on 50mg p.d.] to 150 pd TO BE TAKEN AT THE SAME TIME EVERY DAY----mornings---this meeting was on the 18th march---i now have her bloods 4/2/13---t4 5.0 tsh 125.59-----8/2/13---t4 7.0 t3 2.9 tsh 103.40----tsh 13.59..........total vindication of NOT ADHERING to advice by the endo to be used as a guinea pig ....................all test results now seem to be going in the right direction because of where my feet were.......we will NOT BE SEEING THIS ENDO AGAIN i have already arrainged for the case to be handled by another trust ---under nhs rules ----our next appt. is on 2/4/13 at the new trust -------and whoever we see they will have ALL the relevant facts to hand......remember we seem to know more about this than these so called 'specialists' that dont take into account the individual in front of them.....any comments or advice that you can give me would be appreciated..

7 Replies

  • Alan

    I am glad things are now going well. It comes as a suprise to those of us with thyroid gland problems that the way to recover is by ignoring suggestions which you instinctively know don't sound quite right.

    Some of the Endocrinologists are good but I think many do not know how much suffering goes on because of ignoring clinical symptoms and relying on thyroid gland blood tests alone.

    Keep us posted on the appointment with the new Endo.

  • will definately keep all posted.....but what i have realised in the short time i have been contacting this forum/site is that too many endocrynologists CANNOT and WILL NOT think outside of the box or away from the ' SCRIPTURES' that they believe are sacrosanct and not to be questioned ------- by anyone.........we can change this point of view and may eventually teach some of these so called professionals that not everything is always ' SET IN STONE ' and never to be changed or adjusted . We all need to keep the faith and push on -- WE WILL GET THERE EVENTUALLY...

  • Well done you!!

  • thank you for your comment.....but im no different to anyone else WE CAN ALL GET TO WHERE WE WOULD LIKE TO BE let us all keep pushing for what we all have a right to ---------proper treatment ////correct treatment //////patient respect from OUR nhs [another form of health insurance .....that you have no choice but to subscribe to]------and more importantly the the mini dictators that believe they are holier than thou and NEVER to be questioned under any circumstances

  • I've got a 'battle' on my hands with my own Thyroid problems, but not as serious an issue as yours. Very frustrating!

  • all battles can be won ---with determination,knowledge and above allhelp and focus......always remember YOU are the driver and never the horse------we know more about some things [like the effectiveness of medications ] than any of these so called specialists....our knowledge and experiences is just as important...good luck with you 'battle' we are all with you-----never forget at the end of every tunnel ther is always a light

  • Bless you xx

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