Do I need to see endo as well?
GRAVES EYE DISEASE. PLEASE HELP. Have an appt i... - Thyroid UK
GRAVES EYE DISEASE. PLEASE HELP. Have an appt in eye clinic on monday.Went to A/E last night ...been rx'd 50 mg steroid daily until im seen.
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nezzykins
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Not 100% sure but I think you need to seen by an eye specialist who specialises in Thyroid Eye Disease rather than an endo. You ought to already be being seen by an endocrinologist for your Graves and I think they would just refer you to the eye dept for TED and treatment. The steroids ought to calm things down hope you don't have to wait too long. You could always talk to your GP about it.
Thanks for your reply frt and nut case.Yes ive been diagnosed with graves and graves eye disease. After the RAI 5 yrs ago, I developed graves eye disease. My endo discharged me not long after into my GPs care, so ive got to go through the whole process of referral from GP again ! Not good care is it?
The two are treated separately. You will see an opthalmologist for your eyes and endocrinologist for your Graves' and thyroid.
Yes, thats true. But because of many other things going on in my body, I have asked my GP to refer me back to endo as they seem to do things here differently. Its such a pain. I would like to see holistic medicine being practiced. My endo dischaged me after getting my thyroxin levels normal...following RAI then into GPs care!
I'm glad you are taking control and asking for a referral. I suggest you stay that way and get your endo to work for you. Make sure you always get a copy of your blood tests then you will begin to see what works for you as far as results.If you don't feel well then, whatever range that is, is the wrong range! Ask for vit d, b12 ferritin and a full TFT's TSH, FT4 and most importantly T3. He should be testing your T3 if you have Graves'.
You should find that with having TED you will, in general, now start receiving better treatment as the endo and Opthalmologist should work together. The objective is now to keep you TSH as low as they can to help with your eyes. The theory is that if the TSH is low the antibodies will stop attacking your eyes. Well that's the theory!. It's really important every time you visit both your endo and opthalmologist that you remind them, ask them, how's my TSH? And remember eyes take precedent over everything.
I understand you wanting to explore holistic medicine but I can only lend my experience with Graves' and TED. It's a hard disease to deal with. The eye side of it has shocked me and continues to do so. I eat healthy, exercise, don't drink or smoke, have given up my job to avoid stress an yet my eyes are active are still being attacked and I would give anything to make it stop.
Take carexx
Thank you for your reply. I think you may have misunderstood where I was coming from when I mentioned holistic care, by that I really meant was that I would like to see all doctors working together and not as separate entities. Then no-one can lose. Sharing and giving their own input into the persons case history. All working along side of each other for an accurate and speedy diagnosis. Then most patients can be able to enjoy a better quality of life and support. I asked the Dr if he could refer me to endo but they told me that is not done and I would have to get a referral to see endo through my own GP! See what my problem is? Rules and regs have all changed in Cwm taf health board ( South Wales) its all gone mad there!
Do you have thyroid problems or has the Graves' just attacked the eyes? I have heard it is possible to have Graves' eye disease without thyroid problems, although most people, like me, have both. You are doing the right thing because even if you have thyroid involvement as well, the Endo does not usually have the specialist knowledge - he deals with endocrine disorders, not autoimmune attacks on the eyes.
Ive got both Marram.. I want to see an endo to check out some other things thats happening to me, such as eyebrows falling out, extreme lethargy, general aching especially shins. Ive also got the hand tremors but pulse is normal. Very strange red rash on inner palms and bright red feet! So im getting my eyes assessed first, then wait for all results b4 making appt with endo. Hope you are able to understand my reply. Thanks for your r. Much appreciated.
hi there nezzykins , it sounds very much like TED -- which my lady has been treated for for some time ---- the treatment regime consists of constant monitoring and then high dose steroid [ my lady started at 80 mgs] and then slowly reducing to zero [ this took 7.5 months ] --- it can cause extreme problems to stop from a low dose to zero straight away --- she is now about to have LOW DOSE RADIATION TREATMENT === absolutely nothing to worry about === she had her unique mask fitted last week and starts treatment next week === the main problem with this being weight gain while your on the steroids , my lady increased from 11.5 to over 16 stones , [ BTW I requested from gp soluble tablets -- much easier to take and digest ] .....the treatment has been carried out by moorefields and barts in London === both consultants have been superb === even admitting that even they do not know why it actually works , but it always does ....... if you are being treated at either of these hospitals I can only recommend them extremely highly ...... yes you will need to also consult your endo , because , he/she will have to be aware of ALL OTHER MEDICATIONS that you are taking because some meds have an effect on each other and may need to be adjusted accordingly ........hope this helps .....alan x
Thanks for your reply Allan. I had radioactive iodine for the Graves and went on to develop graves eye disease, which ive found out is quite common in the literature. Ive never felt well since RAI.I totally agree with you that an endo is necessary, and my plan is to get referred again after my eye scan and blood tests are all done with. Here in S Wales many things seem different to how other health Authorities run things.Its all very confusing. I asked my eye specialist if SHE could refer me to endo as he's now finished with my case. She said no. Go back to your own GPto make another referral!! Its all very tiresome.....like a game of witts Allan.
yes I have found out ,over time , that TED can be caused by thyroid conditions OR the medications that have to be taken to control the thyroid ...... there is an extensive program being carried out at the moment [ throughout the entire country ] called 'SIRTED' specifically for thyroid eye disease ---- a number of hospitals are involved in this testing ........ I also have my own doubts about rai and the effects that follow on from treatment ......alan x
Hi Allan. Can you tell me how to get a look at "SIRTED" as in your last reply. Ive googled it but cant come up with anything. Many thanks x
if you try checking the ' moorefields hospital site ' [ main London eye hospital ] you will find out all about the 'sirted ' trials and what it/they are all about ----- THYROID EYE DISEASE --- and all treatments need to be actioned in conjunction with each other ===== sirted stands for an acronym , but I cannot remember exactly what for at this moment , ----our dept. at moorefields is ADNEXAL .....hope this helps ......alan xx
TY For your reply Allan. All replies are well received and noted. Xx
