I have Graves’ disease and overactive thyroid and have been suffering with fluid around my eyes.
Have been over treated with Carbimazole and blood test came back
Free T4 undetectable
TSH 66.12
My dose has been reduced to 10mg Carbimazole blood test came back
Free T4 10.7
Free T3 7.4
TSH 0.03
The results are a lot better but am still suffering with fluid around my eyes, have spoken to the consultant (haven’t seen him face to face since Covid) but no joy as to what’s causing it. Any help would be soooo much appreciated. 😊
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This could have been caused by your T3 and T4 levels having dropped too much too quickly and the anti thyroid medication being at too high a dose for too long.
Do you have your initial diagnosis of Graves Disease showing which antibodies were over range and positive and the medical evidence on which the treatment plan is based ?
Do you also have your initial blood test results prior treatment showing your TSH, T3 and T4 results and ranges ?
Hi, thank you for the quick response. Have been diagnosed for a couple of years, my thyroid has gone into remission and have been on and off the same tablets. Have never had an antibody test just the usually T4, T3 and TSH results. Eyes haven’t changed since being over treated and are not better with a lower dose. They thought I’d had a thyroid storm and have seen ophthalmologist and eyes are fine, just fluid around them 🙈
There are 2 thyroid auto immune diseases Graves and Hashimoto's :
They both start the same way with hyper type symptoms and it is essential to know which antibodies were over range and positive as Hashimoto's is not treated with AT drugs.
We see people on here believing they have Graves, when in fact, when they look they find they are with Hashimoto's and have been misdiagnosed and given the wrong medication.
if you have never had your antibody blood tests run this needs to be redressed :
Do you have the first blood test result and ranges that was run when you first went to the doctor complaining of symptoms ?
You are legally entitled to copes of your medical records.
Have just going through all the paperwork I’ve had, and was wrong sorry, have just found TPO antibody test done >1,000kiu:L plus ultrasound scan too. FT4 was 10.5 Thyroid stim hormone 1.40.
Thyroid Peroxidase TPO - are generally found in Hashimoto's AI thyroid disease though can be found in Graves patients and Graves treatment always takes precedence as it is viewed as life threatening if not medicated.
Free T4 was 10.50 in a range of ?
Thyroid stimulating hormone TSH was 1.40 in a range of ?
With Graves the TSH is generally low suppressed and under the range ::
Sorry am confusing you and myself, these were after carbimazole. Haven’t found the results from before but will have another look. Thank you for all you help 😊
No worries - just be sure whatever lotions, potions, gels and or eye drops you may use are all Preservative Free even those that may have been prescribed -
I had to find this out for myself and then advise my doctor and eye consultant :
Neither Graves nor Hashimoto's respond well to stress and anxiety so let's just park this for today but you really do need to know if you have Graves Disease.
The antibodies unique to Graves are generally written as either a TR ab - commonly referred to as a thyroid receptor blocking antibody or a TSI - commonly referred to as a stimulating antibody.
So as you can see there are blocking and stimulating antibodies at any one time and you can also experience a ' middle ground ' where these 2 extremes of symptoms off set each other and you feel relatively normal for you.
If you go into Thyroid UK this is the charity who support this forum and where you can start to read around all things thyroid thyroiduk.org
Thank you, stress kicked it off this time, with my daughter being pregnant and get Covid on her lungs and being hospitalised, both all good now. So fingers crossed symptoms will ease. Thanks again for all your advise and will definatley ask if it’s graves tc
Well all you need is the medical evidence of which antibodies were found over range and positive at diagnosis, there has to be a print out there, somewhere.
Thyroid Eye Disease TED is closely associated with Graves but can occur without being hyper & without Trab / TSI antibody formation, medics are extremely poor at recognising it.
Selenium - Take 200mcg at first but this should dose should only be taken for 6 months. Then reduce to 100mcg . Bear in mind selenium rich food can take you over the maximum requirement.
Preservative free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I found warm compresses (eg wheat bags, microwaveable gel masks) helped. Very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water. If dry eye is less of issue you may find cold compresses more comforting.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched.
Serious complications are rare. Do not Google the condition and panic over worst case scenarios. Keep a photo record of eyes eg take a photo every 2 or 3 weeks.
Many report TED triggered or worsened when thyroid levels are low.
What dose of Carbimazole did you start on. Are you regularly monitored? Initially 6 weekly until stable.
Important carbimazole adjusted by FT4 & FT3. For TSH to reach 66 you surely must have been on too high a dose for too long.
Graves must be confirmed by positive TSI or TRab. Doctors test for TPO antibodies which confirms “autoimmune”. If TSH is low they assume Graves.
But it’s equally it suggests thyroiditis or Hashimoto’s. - this can begin with transient hyper but level drop naturally, carbimazole hastens it.
Thank you soooo much, have googled selenium it’s worth a try, cold compresses don’t seem to do anything so will try warm one’s instead, and eye gels at night too. Blood test next week so will see what the results come back as and a telephone conversation beginning of august.
Thank you all for all your advise, you do sometimes feel like your all alone with this but thankfully I love this forum 💗
I have graves and overactive thyroid, on 5 mg carb. I have woke up with fluid under eyebrow on top eyelids (but not under eyes). I was unsure if it was all the crying I did at the start or chlorine after a swim. Even too high a dose of propanalol I suspected as for a few weeks I was on 120 mg a day when my thyroid results were ok but the appointment with endo wasn’t till weeks later. I was out of breath lying down and heart beats 46 per min. Soon as I mentioned propanalol during appointment he said come off it you don’t need it now. When I woke up with swollen eyelids which on one occasion had raised my right eyebrow - I used to put cold cucumber on my eyes and this did soothe them. Does it stay like that permanently or go down as the day goes by? Mine would reduce during the day or over a couple of days. Hope you are sorted soon - i understand how this makes you feel x
Hiya, they do seem to ease throughout the day but by night time there runny and itchy. Will try cucumbers again see what helps. Hope your feeling ok now ? x
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