Hie all I m on cabrimazole for hyperthhyperthyroidism so my eyes were bulging or puffy it started in 2020 around october .When i visited the hospital they said usuaaly it will go away with these thyrod meds , but i m seeing no change i having problems with vision i cant face light but on gadgets i will increase the brightness ,they are itchy and irirritated find myself blinking so much .
Can someone advice me if i can see the optomoptometrist whilst i m still on cabrimazole , i ave been taking cabrimazole since 6 August .
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TanyaPrudence
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Sounds like you have Thyroid Eye disease (TED) but not had diagnosis or treatment?
TED is closely associated with Graves hyper. Usually your GP or endocrinologist refer you to an ophthalmology specialist.
The thyroid condition and the eye issue are managed by different hospital specialists.
What was your starting dose of carbimazole - was it reduced?
What is current dose?
Your doctors MUST be establishing the cause of your hyper to ensure carbimazole right treatment.
Do you have access to results?
TSH.
FT4.
FT3.
Which thyroid antibodies have been tested?
TPO & TG signify autoimmune
TSI & TRab confirm Graves.
In my last post I asked if you are in UK ? As I can offer further a link to a very good UK charity for TED.
Where are you living? Please put country in profile.
Things you can do to help -
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. 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 recently been using ocufresh carbomer lubricating eye gel it a light gel so best of both worlds.
For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks). Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones. Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow. This protects eye and helps retains the water.
If swollen, inflamed & more painful, I switch to cold compresses.
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 with vision or changes to eye appearance are very rare.
Don’t Google example and panic over worst case scenarios, they are always the most severe examples.
It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. Many report that TED is triggered or worsened when thyroid levels are low / high or fluctuating. Are your levels stable?
Have you been able to access the TSH, Free T3 and Free T4 and thyroid antibodies requested on the form you photographed on your previous post ?
Have you any blood test results and ranges detailing thyroid antibodies and letters like TPO: TgAB : TSI: thyroid simulating and or TR ab : thyroid receptor blocking antibodies :
I would have thought the hospital endocrinologist would have linked you into the Emergency eye department because the thyroid and eye health issues can be related if you have Graves Disease but we need to know which antibodies were found over range and positive when first prescribed Carbimazole.
If you go into the Thyroid Eye Disease Charitable Trust website tedct.org.uk they can signpost you to your nearest hospital who treat thyroid eye disease and where you may also find an endocrinologist on site as the 2 health issues need to be monitored closely together.
TED charity also run a help line - 9.00am - 9.00pm every day of the week.
In the short term if using any drops or ointments to ease the pain, discomfort and burning just make sure every product is preservative free.
Thank you - I've just seen your TSH, T3 and T4 results and that you have an over range and positive Trab antibody test.
So I think we are looking at Graves Disease and hopefully the Anti Thyroid drug will help to relieve your symptoms - please check the Patient Information Leaflet for side effects of Carbimazole and there is an alternative drug called Propylthiouracil - PTU for short - if needed.
Graves is an auto immune disease and something has triggered your immune system to attack your body and with Graves it tends to attack the thyroid and eyes and quite why this has happened to you is the 64 million $ question.
There can be a genetic predisposition and / or a sudden shock to the system like a car accident or the unexpected death of a loved one that has upset your system and triggered your immune system to attack your body, or Graves can simply occur ' out of the blue ' .
The AT drug simply' buys you time ' and works by blocking your T3 and T4 rising any further as Graves, left untreated, is considered life threatening, and slowly your high T3 and T4 blood test results and will fall back down into range and your symptoms relieved.
You need to rest up and be kind to yourself and do think you need to consult a TED specialist as to your eyes and strongly recommended you get some help from the TED charity as detailed previously if your surgery and hospital haven't referred you anywhere.
When at the hospital did they give you an appointment card for your follow up appointment in 6-8 weeks time ?
From memory I had bloods run for TSH T3 and T4 every 6-8 weeks with a follow up and dose adjustment with the endo at the hospital or through the doctor having taken endo's advice over the telephone.
You are not well and deserve some help, face to face, with all this.
A side effect of Carbimazole is itching and skin rashes to name but a few ??
yes i have the appoappointment card my next visist for 6 week checkup will be in November , when i got these results the general practitioner told me that my nextvisit will be at the endo hospital.
Ok then good, I thought you weren't in the system.
So you likely need to get your surgery to run the blood tests a week prior to hospital appointment so there's something to talk about when you get to see the endo.
Keep copies of all your blood test results and you should see the T3 and T4 dropping back down the ranges from where they first started - and keep notes of how you feel at every dose adjustment and explain your symptoms to the endo so rather than just be a equation of the computer to compute you give input about symptoms and talk through how you are feeling.
As your T3 and T4 drop back down your dose of Carbimazole will be titrated down as you do not want your T3 and T4 falling too far through the ranges as then you will experience symptoms of hypothyroidism that are equally disabling.
When metabolism isn't running smoothly and either too fast or too slow - hyper or hypo - your core strength vitamins and minerals can nosedive through their ranges and compound your health even further.
Ask if you can have your Ferritin, folate, B12 and vitamin D run and if you are successfully through the NHS just start a new post with the results and ranges and forum members can advise of where these levels need to be for optimal health and well being - just be sure to black out your personal details on any shared medical printouts.
If you go into Thyroid Uk - the charity who support this forum - thyroiduk.org - you can read about all things thyroid, and there is a section detailing private companies who can run blood tests for you if you doctor isn't able to.
Since you are currently under the hospital and in treatment I tend to think you may find the NHS more willing to run these tests for you - though, of course, I could be totally wrong - but I hope not.
Graves is a stress and anxiety driven auto immune disease so - stop it !!
Yes you will need regular follow up's so just be accepting that you are being looked after.
Please get some help regarding seeing a TED specialist as your eyes also need regular monitoring and your dose of Carbimazole needs to be titrated with a TED specialists input to ensure you go low and slow down the ranges.
The NHS generally allocate a treatment ' window ' of around 15-18 months with AT medication so just take it one day at a time and look after yourself, rest, relax and find things you enjoy doing - your body needs to reset itself, and your immune system needs to calm down and this must not be rushed.
Most recent research is suggesting the longer one stays on the AT medication the better the outcome or the patient ; pubmed.ncbi.nlm.nih.gov/338...
Yes you need to retest the TSH, FT4 & FT3 at regular intervals. eg every 6 weeks.
The carbimazole acts to halt or reduce the amount of new hormone being made.
As your body uses up the existing thyroid hormone stores you need to decrease dose to prevent levels dropping to low. or increase dose if thyroid levels are still too high.
Do you have a doctor who will test? or a way to order blood test from lab?
GPs in UK will often only test TSH but many will use a private lab service to arrange more complete testing.
What was you starting carbimazole dose & current dose? Has it been altered?
usually it’s started much higher eg 30-40mg carbimazole with levels as high as yours were. 20mg over time might be enough bring them into range.
Do you still take Propranolol? As this will also have mild anti thyroid affect, so will help but - it’s carbimazole which will treat the high levels. Do not stop propranolol abruptly - reduce slowly.
The TSH may stay low. So you are looking to have FT4 & FT3 mid range. Midrange means you are at less risk of hypo & if levels begin to rise you can catch it before it goes too high.
If you have difficulty with levels moving too fast or balancing FT4 & FT3 with 1 being very high doctors can give a high dose of carbimazole to block all funtion. Then replace thyroid hormones with a hormone replacement. This is known as block and replace.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed).
If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling.I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
tedct.org.uk
Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world. Please keep posting if you need any further advice or support.
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