Hi, I have recently been diagnosed with overactive thyroid and graves disease. I have been given Carbimazole to be taken three times a day and have been advised to take selenium 200mcg, which I am doing. I don't actually have any symptoms apart from my eye i have developed a retracted eyelid and it feels gritty. You can also see the white above my eye which you can't on my other eye. I am skinny but have always been and put this down to being very active and probably not eating enough. I'm 5ft 7inch and weight 8.8 stone. My question is: Will my eye go back to normal on my medication? I have asked my doctor but can't seem to get a straight answer. I have attached my blood results. If this helps, I have got an appointment with an eye specialist but it's not until two weeks time any advice would be appreciated. Thanks so much.
Recently diagnosed : Hi, I have recently been... - Thyroid UK
Recently diagnosed
Just to add carbimazole dose is 5mg x 3 daily. Thanks
They are fairly high levels to not feel symptoms.
TSI or Trab antibody testing confirms Graves.
Doctors often conclude that TED occurs only with hyper Graves,but that’s not entirely accurate.
What’s the total carbimazole dose?
You need to retest function around 6 weeks later & the dose needs to be adjusted to keep you in range & not too low.
TSH isn’t reliable,it’s the ft4 & ft3 you need to monitor. Doctors often incorrectly focus on TSH.
Many say the appearance of eyes improve & early treatment from a specialist will help.
Selenium 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 which “melts” 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 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 TED triggered or worsened when thyroid levels are low / high or fluctuating. Getting levels in range and stable a big priority.
TED charitable trust is a Informative site about TED & symtoms
Thank you so much for your reply. I am taking Carbimazole 5mg three times a day.
That’s reasonably low a for starting dose.
I didn’t have as high levels than you (have a nodule) but started on 20mg for 2 months. I was almost hypo but time the confusion between endo & GP was sorted out & I was retested.
Dose was reduced to 10mg & been any varying doses ever since.
Was anything else tested, when thyroid abnormal often nutrients can be affects.
See if Folate, ferritin, B12 & vitamin D can be tested? Or look at private options.
Gluten can often be an issue with thyroid autoimmune - do you have stomach issues?
Thanks for your reply. I don't have any stomach issues. I feel fine. I only went to the doctor because of my eye. I also went to the opticians and was told I have healthy eyes, so there was no problem there. I did get tested for B12 and that was fine. I'm not sure what else I was tested for but have asked for the report but have yet to receive it. I don't have any other symptoms and am very active. I do about 3 hours of walking a day. I have done a blood test for the specialist and have to do another one a few days before I see him, but have not heard anything as yet. I have an appointment in January to see him. I also have an appointment for the eye specialist in a couple of weeks, so hopefully, I will get some more information.
ALWAYS get copies of your blood test results and ranges
Keep good records of how you feel at each test
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
You definitely need TSI or Trab antibodies tested to confirm Graves’ disease
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
medichecks.com/products/tsh...
Plus both TPO and TG thyroid antibodies tested for autoimmune HYPOTHYROID Disease also called Hashimoto’s. Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
It’s possible to have TED with Hashimoto’s too
Hello Asha and welcome to the forum :
If there is no obvious physical swelling or breathing or swallowing obstruction you are likely dealing with a thyroid auto immune disease of which there are two.
Both Graves and Hashimoto's start off the same way and Hashimoto's is not treated with n anti thyroid drug.
Both can cause eye issues and the only way to tell these two AI diseases apart is by knowing which antibodies were found positive and over range and the diagnostic medical proof and the justification for prescribing a certain medication.
Graves antibodies are generally expressed as either a TSI - thyroid stimulating or a TR ab - thyroid receptor blocking antibody :
Hshimoto's antibodis are generally expressed as either a TPO or a TgAB and some people have both AI diseases running at the same time and Graves treatment takes precedence.
Graves is treated with an anti thyroid medication such as Carbimazole which simply blocks any further T3 and T4 own thyroid hormone production and levels of T3 and T4 rising higher and higher which is seem as life threatening if not medicated, and slowly your over range T3 and T4 should fall back down into the ranges and any symptoms experienced relieved.
With Hashimoto's the T3 and T4 fall back down into range themselves and there is no need to medicate with an AT drug, and in fact, as the gland becomes further disabled by successive attacks from your immune system you will become hypothyroid and require thyroid hormone replacement -T4 - to remain well.
With Graves the NHS generally allocate a window of around 15/18 months for treatment with an AT drug and the hope is your immune system calms down and this is just a ' blip ' :
Quite why your immune system has been triggered to attack your body is the question but it's complex and possibly needs some thought on your part.
The thyroid is the victim in all this and not the cause - as the case is one of your immune system having been triggered to attack your body :
Graves is a poorly understood and badly treated AI disease and you might like to read up and I found the most well rounded site that of Elaine Moore who has the disease and finding no help with her continued ill health after treatment started researching herself and now a leading, well respected World wide authority on all things Graves - elaine-moore.com -
I only found out all I know about Graves around 8 years after being diagnosed in 2004 and having been given RAI thyroid ablation in 2005 - I now manage lingering Graves, thyroid eye disease caused by the RAI amongst other things, and hypothyroidism and now self medicate as the NHS do not offer all the treatment options that they once could, due solely to costs.
Though too late for me I found Elaine's section on alternative, and more holistic, complimentary therapies very interesting and the advice to look for ways that may help calm down your immune system response including possible life style choices
Hashimoto's - thyroidpharmacist.com - seems well received by forum members.
Most recent Graves research :-
ncbi.nlm.nih.gov/pubmed/306...
pubmed.ncbi.nlm.nih.gov/338...
Thank you so much
P.S. if using any drops, sprays and or gunky grease to ease your eye symptoms please just make sure every product whether OTC or prescribed is Preservative Free.
As to you question - it's too early to say anything sensible about your symptoms, first we do need to know exactly what you have been diagnosed with and that must be confirmed by the blood being further analyzed to identify which antibodies were over range and positive at diagnosis.
Could they be further down this print out you photographed ?
Hi, all I was told was I have an overactive thyroid and graves disease. There's no other information on the blood results I uploaded. The specialist prescribed the medication over the phone and I'm seeing him in person in January. However, I do have an appointment in a couple of weeks with an eye specialist. I am just a bit confused as I am showing no symptoms other than one eyelid being retracted.
Is it worth asking your doctor, maybe they have confirmed blood test results sitting in the filing tray at the surgery ?
Do you have online access to your medical records held at the surgery - it is now your legal right so you not asking for anything untoward ?
That's good advice. I will contact my doctors again. I did ask them today and they said they would send them via text but I haven't received them yet. I will ask them for online access to my records. Thank you so much for your help.
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