i feel that I have to share an astounding happening with all !!!!!!!!!!!!!!

to start my lady has been treated for ' thyroid eye disease ' for the past 9-10 months at a major hospital by a super CONSULTANT and on the last visit, 1.1/2 weeks ago, he stated that he would be referring to another doctor for treatment to ' arrest' the ted ....we then received the appointment 2 days later [post ] ..... on Friday [ yesterday ] we attended and the doctor , after examining , fully explained the treatment and that HE/THEY didn't know why it works but it works in about 90% of cases and has NO side effects === treatment is extremely low dose radiation === and that we would hear from them as to the appointment ..... and that once the ted was arrested it could then be treated in conjunction with the thyroid issue together because both conditions effect each other as well as the treatment for both ....... we left the hospital at about 11.30 am -----low and behold I received a telephone call at 3.10pm to offer an appointment for the start of this treatment for 10 days [ YES 10 DAYS TIME ] ........when I picked myself up from the floor --- I fell off of the chair --- I was then told that ALL of the transport had been arrianged [ the treatment has to be carried out for 12 consecutive days which mean 12 hospital appointments after the initial one ] ------- THIS BEING ON THE NHS the only thing I can say would be SUPER /GREAT / FANTABILISTIC ........WE CAN RECIEVE SUPERB SERVICE AND TREATMENT we just need to find the right doctors/consultants/specialists etc. I am still in a relative state of shock at the swiftness of action and will compliment the hospital and doctor when nessesary .......THERE IS HOPE FOR ALL OF US OUT THERE -----I WILL TESTIFY TO THAT .........alan

17 Replies

  • That's great news, Alan, I'm really chuffed for you and Mrs. Alan. Those doctor's have really moved quickly.

    How is the radiation administered? My sister had mild TED and I think it's worsened since she had RAI and I'm trying to convince her to have regular eye tests.

  • hi there clutter , I am still somewhere up in the clouds thinking about it , ....as I understand it on the first appt. you are sized up for a 'mask' [ the treatment actually starts on the second appt. ] it is then given in a similar way that chemo is given [ but the levels that are given are not much more than in a watch that glows ] but it is directed and confined to the specific area --- hence the low doseage needed this is why it takes 12 days to compleat , and then has no other side effects --- as I say as we havnt actually started yet I WILL update on- site as to how good/pearshaped [not] it goes and maybe help some others in their journey through this damn tunnel ......alan xxx

  • Thank you. I shall follow Mrs. A's progress with interest. Is this a new procedure? I'd only heard of surgery previously.

  • What a great result for your good lady and yes I am in total agreement that good service and good doctors do still exist in the NHS. The treatment and level of service I have had at my local hosp over the last year has been second to none and I, like you, am truly grateful for the care and kindness given.

    Hope all goes well.

    Moggie x

  • Hi Alan

    That's great news, so happy for you and your wife.

    I absolutely agree there are some pretty amazing "professionals" in the NHS. Also some pretty amazing staff.

    There are also some pretty "un -proffessional" so called "proffessionals" who sadly distort the picture of the NHS. Iv'e had my fair share of the "Un Proffessional" ones over the last 3 years :( but that's another whole long story ;)

    Very happy to hear your news Alan and wish your wife well with her treatment x

  • I think eye specialists are on the ball because you either have something that they can see or you don't, ie there's either nothing wrong with this patient or there is something wrong with this patient and there are ways of treating whatever condition you have.

    Personal opinions and beliefs don't seem to come into like it seems to do in other fields of medicine - especially thyroid conditions - where different consultants / doctors / hospitals have different ideas.

    Besides eye conditions tend to need treatment pretty quickly so they are used to acting quickly. A friend was being seen for something to do with her Graves when they decided she needed her eyes seen, she was taken straight to the eye department and treated on the spot, can't remember what her problem was though but there was no messing about. Needless to say she was very impressed. Who wouldn't have been.

    Good luck to your lady, sounds like she is in very good hands. :-)

  • the thing that sticks in my mind is that we was refered to the eye SPECIALIST by the thyroid specialist that is still treating my lady and he refered her to this specialist AND ALL [ INCLUDING OUR GP ] ARE TREATING VARIOUS CONDITIONS SEPERATLY and treating separately .......and all are singing from the same songsheet for the betterment of THE PATIENT ===== my lady , we have been together for 34yrs , and counting ........[ I still try to remember WHEN I broke that many mirror's !!! yuk yuk , .....my lady's treatment although troublesome has been manageable with true and real thought from both of us ........WE WILL GET THERE ===== AT THE MOMENT WE ARE OUTSIDE THAT DAMN TUNNEL ......I feel we have all the help that we can get at this time and I will work with them ====== but god help them if they go wrong ---- coz he/she will be the only one that can !!!! .....alan xx

  • Hi Alan, it's a roller coaster with TED. I have Graves' TED and severe proptotis. Was offered the radiation but after being medicated heavily on steroids via IV drip for 16 weeks I became a nervous wreck and didn't take them up but I did have the initial consultation with the radiotherapy department. They radiate at 20 gy per session which verse's cancer is normally around 60-80 gy. No real side affects except maybe feeling flu like or a bit more tired than usual. Here is the BFT youtube video guide. I know others have had great success with it, so best to both of you.

  • very very informative , we actually saw dr nick plowman ---who appears on this video .....and he explained everything that is stated here ---- with the benefits AND the potential pitfalls but actually seeing the process will help my lady in her treatment because I can prepare her first [ she is a paternal worrier ] ......thank you so much for your post it will help enormously .......others may find benefit from it on our site !!!!! .....alan xxxxxxxxxxxxxx

  • thought I would give you a quick update .... the last treatment session went ahead yesterday [ thurs ] .....all went brilliantly staff, doctor[s] , transport were absolutely superb --- even the ma - in -law [ who accompanied kim on several sessions was overwhelmed --- and that has to be unique --- we are so grateful for your previous post it really helped put her mind at rest and allowed her to not worry or stress before it started . once again thank you so very much for your help in this .....alan xxx

  • Fantastic that all has gone well. Tell Kim well done, no mean feat going through all that, she's done better than me. I can only hope and keep everything crossed for a good outcome with the eyes.

    Some time now for you both to relax and reflect on what you've achieved :-)


  • I'm a bit late Alan but have just read your report. What fantastic news.It helps restore some faith in the NHS and must have given you both a huge boost.I hope sincerely the treatment is 100% successful and that all the visits go smoothly.

    Sending you both my very good wishes,


  • thank you so much for your good vibes , yes there are some good things that the nhs do do ....and that was my point , that with perseverance and the right people behind you YOU WILL GET THERE [ there is that light at the end of that damn great tunnel ] .....we will ALL get there and on this journey maybe understand and empathise with others that have problems that are not connected with our own issues ...... I know that if I hadn't received the help from the GOOD people on this , our site , we would not be in the terrific position with my lady that we are now ....... and I will forever do whatever I can to help/keep / and extoll ALL of those that enable it to carry on .....sorry for the long 1 but I do feel strongly on this .....alan xxxx

  • Good news!! Can l ask how long your wife has had thyroid eye disease? Please

  • hi denD, my lady was refered to ' moorefields ' approx. 8 months ago by the endo that was treating her hypo/hyper thyroid condition ........it was a bit of a pain with the various hospital/doctor/blood test visits etc. but when EVERYONE SINGS FROM THE SAME SONGSHEET and more importantly actually COMMUNICATES with each other any problem can , in the fullness of time , be resolved and dealt with .........alan xx

  • Two years later, I've just read your ecstatic posts! I'm delighted that your lady Kim received such fast, comprehensive and efficient treatment. I hope all's well now. Your posts make wonderful reading x

  • thank you for your reply , elven, yes although we went from about 3 hospital visits -- at 2 different hospitals a week -- as well as doctors and blood tests -- and the medication regime went up to a cocktail of 43 tablets a day my lady is now down to a full blood test every 2 months 2 visits to the endo per year and 2 to moorefields per year .... she is now down to 5 tablets EVERY 2DAYS ..... and the conditions are easily manageable comfortably , with the proviso that if ANY tests show a problem it will be dealt with sooner rather than later ........ without this site and the good people here I dread to think where we would be now and will forever try to help them and the site in whatever way I can [ check out the ''ali-can comp '']for one ......alan xx

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