After having a disappointing appt in may ive now managed to get (through PALS) another appt for a second opinion i would like to be a bit more assertive this time but without sounding like the hypochondriac i was made to feel like with the last endo. This time i have choosen who i want to see rather than take pot luck. I would at least like to have the T3 test which ive never had and maybe at some time a scan (i paid for the last one as gp said they wouldnt find anything wrong and there would be no nodules as the condition was only mild but althought only small there were several nodules) after the last endo appt i was referred back to the gp who once again put me under the mental health. mental health then dischaged me but ive been put on a recovery programme. Do i have the right to request the T3 test.
endo appointment.: After having a disappointing... - Thyroid UK
endo appointment.
As you have Hashimoto's, have you gone gluten free?
Have you had vitamin D, folate , B12 and ferratin levels checked?
Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. 😟
You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D and also the gluten connection
If you can not get GP to do these tests, then like many of us, you can get them done privately
thyroiduk.org.uk/tuk/testin...
Blue Horizon - Thyroid plus eleven tests all these.
just my 2pence worth , make sure-certain , that the ''endo '' is ACTUALLY an endocrinologist specialist -- and NOT from any other department [ usually diabetes ] that know extremely little if anything about the endocrine system and the treatment --- which only exasperates and brings on further issues that then take many years to resolve ...... you need to be strong from the start of your treatment regime ...... and if your g.p. says that he/she cannot give t3/t4/ferretin/folate / b.12 /vit d3/ etc tests THEY ARE LYING TO YOU its just that they don't want to pay for them --- my lady has ALL OF THEM DONE ON EVERY BLOOD TEST SHE HAS == ON THE NHS == so it can be done , for the betterment of treatment of the patient and the g.p. ......alan
hes actually doing a lot of research into thyroid disease. hes based at the medical school which is next to the hospital (i work there myself as a nurse and have been to one of his talks on thyroid diseases which is why i chose him)
Hello Alan, how do you achieve what you advise us to? The endo I have just seen appeared to know less than my GP about thyroid problems even though I had first rung round all local endocrinology departments to find out which one would be best.
My GP ran the T3 test and the result suggests I have a conversion problem but GP will not prescribe T3 nor will the endo, they just suggest increasing my Levo even though the first thing this new GP did was to reduce my dose and even on the reduced dose I have suppressed TSH.
So, how do you achieve it?
firstly :: phone directly to the hospital's CHIEF EXEC'S OFFICE and ask the exact field that your endo specialises in [ most times it will be diabetes ] .... then raise this with your g.p. ... secondly raise the ACTUAL FACTS with your g.p. that THEY ARE RESPONSIBLE for your full healthcare and ongoing treatment AND YOU WILL HOLD THEM MORALLY AND , IF NESSESARY LEGALLY RESPONSIBLE ---- but also they will have to pay [ through their trust fund ALL of the costs of un-nessesary costs TO THEM , including prescription payments ] :: lastly you need to do good research to find a sympathetic endocrinology dept at a hospital === of YOUR CHOICE through the free choice system [ any nhs hospital ] and request this from your g.p. --- he/she will have to send you the paperwork with 2/3 hospitals for you to contact direct and then the starting process begins....in ending I have a superb g.p. who has been sourcing his info from many places , including this forum , and indeed understands the importance of ALL OF THE TESTS BEING DONE AT THE SAME TIME ---- EVERY TIME ..... to show a full and complete picture ...... but you do , at times need to be forcefull and not automatically accept what whoever in front of you states === always ask for the reasons why they are advising , and if there are ANY other alternatives as well as the possible downsides of the treatment that they are recommending [ that usually makes them think twice on the normal ] ..... alan xx
incidently , EVERY time my lady has a blood test the lab - sometimes through the g.p. - has ALL TESTS DONE INC separate t3/t4/feretin ..etc EVERY SINGLE TIME ..... and if ness her meds are adjusted accordingly immediately ..... it really has worked for her & and us ......I hope that this may be of help to you ...... alan x
Thank-you Alan, great advice, I can't imagine though having the energy to out-persist my GP.
that's why the most important thing is to have a sympathetic and open g.p. that not only works for you , but also for him/her .
unfortunately for so many people this seems to be the major stumbling block , fortunately for us we have a superb g.p. which is , in my opinion , 1 of the reasons why my lady is in such a good place now . never forget though that each and every time you succeed it WILL give you a lift .......alan xx
joyce59 You can request the FT3 test, your GP can put it on the form, but there's no guarantee it will be done. It appears that the labs are the ones who decide whether or not it will be done and then it's usually only when either TSH and/or FT4 are way off. I think the only time the lab is more likely to do it routinely is if the form is marked something along the lines of 'Patient on T3 medication'.
Much easier to take matters into your own hands and get a Blue Horizon test done at home. As SlowDragon says, their Plus Eleven tests everything and gives a complete picture, but if you already have the other information then they do a basic TSH/FT4/FT3 test I think, you'd need to check out their website.
Joyce59,
You have the right to request T3 is tested but you may find the lab declines to test FT3 unless TSH is suppressed. I think it is unlikely an ultrasound will be ordered unless the nodules are palpable which they usually are not until they are >1cm.
thanks for the reply clutter last year my cousin had a 6cm nodule that was growing inwards so it was not palpable from the outside. not sure if this is common. she had a goiter but normal blood results so of course a gp told her nothing was wrong. it was only when she paid for a scan the nodule and a smaller one was found. shes since had half her thyroid removed and is now well and dosnt need to take any levothyroxine.
but if the g.p. states on the blood form ''' requested by specialist ''' .. AND FOLLOWS THE RESULTS UP WHEN THEY GET THEM ... the lab will have to do them IN ALL CIRCUMSTANCES .. never forget that it is the gp that has to pay for them when nessesary via the nhs contract that they abide by ..... we just need to have a g.p. that follows the hypocratic oath and not political doctrines that change on each waking moment
Dear Joyce59, I achieved a T3 test by keeping on asking the GP but it took 12 months and it sounds as if you are having more success than I.
I too just had a disappointing endo consultation, please could you tell me if PALS is open to anyone and if I might have a second consultation through PALS?
Best of luck
P . A. L . S . stands for the '' patient advice liason service '' and should be your first port of call for ANY complaint or complement within that particular hospital ... and is open to ALL PATIENTS/USERS of that hospital .... to allow them to resole any problems that may occur at the first instance ......... if this is not resolved YOU do need to then take it to the next stage [ whatever that may be -- and it can be done --] ....... but pals is open and available to EVERYONE --- you just need to be aware of it and how to contact them AND make certain that your complaint is registered ....alan
Thank-you Alan for the info about PALS, very helpful.
Thank-you again Alan for alerting me to PALS. It gave me confidence when communicating with my GP and I succeeded in getting a referral to a Professor in Cardiff and his team. The Professor told me my blood test results show I am at coma level - they gave me medication before I left the hospital and I'll remain under their care.
im so glad to be of help to you , as indeed others have been to myself for my lady , keep your gp in the loop though he/she may well learn something ..... at least you seem to be on the right road now good luck with your ''new treatment '' ......alan x
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