endo appointment

[thyroidnodules]

So, had an appointment with my endo at hospital who heard from my GP that i am using NDT and they said they wouldnt help me further with my nodules and thyroid if i continued on this course so went in to discuss. they are not happy with my suppressed tsh which is too low in range, they say. She proceeded to tell me about the pituitary gland etc etc and that the t3 is not measured by them as that changes on a daily basis etc etc etc. I told her i was unwell on levo and gained a huge amount of weight. She reluctantly agreed to start me on a combination of t4 and t3 for three months and made a further appointment to see how i was getting on and to see if my dose needed tweaked. she also took bloods and will send me results along with a letter to take to doc for prescription. It has only taken me seven years to get a result lol

[Hidden]

In Merseyside (about 8 CCG's) there is a system in place whereby anybody who complains excessively about the inadequacies of levothyroxine is sent to see a consultant at a major NHS local hospital. That NHS consultant is authorised to prescribe NDT on a private prescription to appropriate patients. This system exists seemingly to shut us up and stop us wasting the "valuable" time of GPs and endocrinologists.

BUT, BUT, BUT........the person concerned is NOT an endocrinologist, she is a surgeon!!!!

As the fact that this system MUST therefore be known to all CCG's in Merseyside and therefore to all doctors and endocrinologists here, then there cannot possibly be any excuse for similar events happening here as you describe above. ALL doctors registered with the GMC are INSTRUCTED to inform their patients of any medicines etc that may help their patients provided they know they exist and could do this, IRRESPECTIVE of whether they are permitted to prescribe them!

Make of this what you will. Ask you own doctor whether their CCG has such a system, and if not, why not! Be forceful, don't accept their nonsense. Tell them to get in touch with the PanMersey APC to find details of the system they have in place and the reasons for it existing.

During my quarrels, my endocrinologist told my CCG that "at least NDT is a lot cheaper than T3/T4" but even that was not enough to persuade the CCG to give me NHS NDT to my IFR.

If a doctor seems to be ignorant of the fact that NDT exists, then ask them why they have failed to read the multiple documents recommending the use of levothyroxine monotherapy from several medical institutions, BTA, NICE etc. It is mentioned on every one of them.

[thyroidnodules in reply to Hidden]

yes interesting, she told me they do not prescribe NDT on NHS (i live in Edinburgh). i didnt complain all that much to be honest, i just went on NDT after a horrible experience with levo, my whole body swelled up in particular one leg and when i mentioned to doc it might be the levo he told me no it wasnt and that i probably had a dvt and to go straight to hospital or i could die lol. i just stopped the levo and ordered Thiroyd from abroad and eventually everything returned to normal. i value the advice on here more than the NHS on thyroid problems. She said if i continued to have a suppressed TSH i would get osteoporosis and heart problems. i have researched this and read the opposite. Its quite scary how opinions differ. At the end of the day, the docs have a duty of care and so they had to offer me an alternative before they washed their hands of me

[Angel_of_the_North]

If objection to testing T3 is that it changes on a daily basis (and I've not seen any evidence that it does), why do they tests TSH which changes hourly (which is actually what T3 does, too)?