Hi I have been diagnosed as HypErthyroid Graves with TED's in my left eye. The doctors continually misreport what has happened so I am not sure what is a good idea or not.
The initial diagnosis was in Feb 2023 TSH <0.01 , T3- 39.5 , T4-67 , ALT 61(before medication) and it was months before that I had the symptoms of feeling sick around meal times, and palpitations and exhaustion when walking. I was started on Carbimazole 15mg and Propranolol 40mg.
5 weeks later I developed this TED's in my left eye. and the doctor is telling me its the thyrotoxicosis that is causing it (seems like its the medication to me) I have also stopped taking the meds for 3-4 days and found that the TED's improves.
The doctor says Oh! don't stop taking the meds. and wont talk about this improvement from stopping the meds.?
The results from March 2023 ALT 208 nothing else?
The results from May 2023 TSH <0.01 ,(T3 not mentioned) T4 28, ALT 108.
I assume T3 is now normal so that's why its not mentioned.?
From my research TSH should be 0.4 , T4 9 - 25, and T3 3.5 - 28 approx. but the reference ranges have changed at some point. which makes mush into unclear mush. good job who ever comes up with this stuff. So I really have no idea what any of this means and Id be surprised if anyone else does.
What is ALT.?
At the visit to the endocrinologist 27/06/23. The doctor says this is now normal (ALT 108) and I should increase Carbimazole to 20mg as the TFT are still above normal range. What is TFT its never been mentioned before.?
also results of what I assume was my blood test at this appointment were
haemoglobin 158
white cell count 7.53
platelet count 310
serum bilirubin 9
serum alkaline phosphatase 138*
serum alanine transaminase 45
serum albumin 44
serum TSH <0.01*
serum free T4 29*
serum anti-TPO antibodies 125*
I get some of this but don't really know what its telling me.
The methylprednisolone seems a bit drastic, as the side effects are many and none look good, also it can interfere with 256 other drugs including propranolol and salt, so as I'm on those two for sure and many of the others this would seem a no go.
Anyone with any experience of this steroid infusion.?
I have also got Oral thrush which they seem unable to treat. and as far as I'm aware that's a fungal infection. which is stated as "can cause death" when using these steroids.?
Any insights or help would be greatly appreciated.
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Sunshrine
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reference ranges for fT4 / fT3 / TSH differ between labs using different test methods / test machines.
you can only interpret results using the ref range that came with that test. (usually shown after the test result in brackets)
The fT3 range you mention 3.5-28 ish sounds incorrect .. most fT3 ranges are something like 3 ish -6 ish . (28 would be WAY over the top of all fT3 tests i've seen)
fT3 is not always done.. so the fact you only got TSH / fT4 results does not mean fT3 is now within range ... much more likely it wasn't tested that time. if it had been tested the result would be given.
Always give ref ranges for all test results you post .. (the ref ranges that came with those tests~ ranges are not transferable between labs)
Common fT4 ref ranges are eg [7.9-14] [9-19] [12-22] +others
difference between TSH and fT3 ranges are smaller . most TSH approx [0.3/0.5 - 3.5 /5] ish
ALT ~ bit hazy on this , but ALT is a liver enzyme ... it is monitored when giving antithyroid drugs(Carbimazole or PTU) due the possibility of a rare but serious side effect on liver , which if it happens means Carbimazole must be stopped )
Others who are more experienced than me about Graves / TED will be along shortly .. but in the meantime:
Re, the TED.....this is caused by the same TRab (antibodies) that caused the thyroid to overproduce T4/T3 in Graves (by acting on TSH Receptors on the thyroid) .
but, there are a few other locations in the body that have TSH receptors .. and one of them is some parts of the eye tissue. So the same antibodies that act on the TSH receptors on the thyroid can also act on the eye tissue, causing TED.
These Antibodies are called TRab ~ Thyroid Stimulating Hormone Receptor antibodies
( they are used to confirm diagnosis of Graves Disease)
Antithyroid drugs ( carbimazole ) do not directly affect these antibodies . so carbimazole shouldn't worsen TED
Antithyroid drugs just block the process inside in the thyroid that allows it to make T4/T3 from iodine .. in a dose dependent manner ~ the higher the dose, the less T4/T3 can be produced.
I am very interested to know how you edit your message as I have no idea how to do that. and bar writing a new post or randomly selecting someone's reply to re-reply to I dont now how to get new information into my post.
Im a bit hazy on everything at the mo.
and I have to stop reading frequently as it hurts.
Hello there,I have Graves disease since 2018 and also TED in both eyes since the beginning.I see an ophthalmologist specialist for it.My right eye is the worst but it is also in my left eye.I have been offered steroid infusion if it gets worse.My consultant told me the worst thing for TED is fluctuating thyroid levels.Mine was worse when my levels were too high or too low.I don't think it is to do with the medication.I had a total thyroidectomy last June as it was too difficult to stabilise my levels even on block and replace.My eyes have settled down a lot and I needed 6 weeks of tapering steroids(prednisone tablets) after my operation to prevent a flare up.I had no problem at all with them,in fact I felt great.My eyes are a bit red and gritty at the moment but I am going through a dose change and that isn't great for my eyes.Hope my experience helps in some way.
Yes I was told the meds fluctuation is not good, I missed some doses early on due to the volume of patients at my practice slowing things down. but I think I've got a handle on that so hopefully it will improve. although Mr endo says I'm about to change dose as well. So fingers crossed or was that eyes.
So TRab & or TSI MUST be tested or doctors are assuming you have Graves.
TPO is tested & positive by most ranges. This confirms autoimmune, not specific for Graves.
Most doctors assume TED is associated with Graves only - but can occur without it.
I have non autoimmune hyper & forever being told I have TED by doctors then told I can’t have TED as negative for autoimmune.
TED treatment can be very poorly recognised & treated. Push for an opthamologist specialist.
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.
For dry eyes I recommend warming eye mask & *preservative free* eye wipes / drops / gels. Some like to use drops in day & gel at night, but I use carbomer gel eg Ocufresh gel which is a lighter gel which melts quickly in. Rotating different brands seem to help.
Very gentle massage toward lash line, you 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 eyes more swollen, inflamed or painful, I switch to cold compresses.
If you like to moisturise near your eye area use water based clear gels not oil / cream, this will lessen any clogging. I did this as developed milia white spots round eye.
TED & Graves stem from the same autoimmune activity but do not always correlate & run separately. ie TED can precede hyper, or hyper can be controlled with medication but TED occurs. Many do report TED triggered or worsened when thyroid levels are low / high or fluctuating, but your doctor is inaccurate to say the hyper is causing TED. & the carbimazole medication should not affect TED either.
Have stable thyroid levels is best to help TED.
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. I put in an album on phone & hid behind a cute kitty picture.
Carbimazole 15mg and Propranolol 40mg. Is not a high dose. It’s best to take as consistently as possible & adjustment are likely. This is usually 6 weekly til stable.
This is a good site for information on blood test - link to ALT
I’ve no experience of methylprednisolone steroid infusion.
Regarding your oral thrush, I remember another member having this issue. Test blood glucose HBA1C can often occur with diabetes. Blood sugar can increase when hyper. The member I recall got more help from pharmacist & got a gel to treat mouth.
Hi Im not sure where I would post an addition to my first question/post. bar writing a new post
so I'll put the additional info I have so far here and if you think it should go somewhere else then please let me know.
haemoglobin 158 130-180
white cell count 7.53 4.0-11.0
platelet count 310 150-400
serum bilirubin 9 0-21
serum alkaline phosphatase 138* 30-130
serum alanine transaminase 45 10-50
serum albumin 44 35-50
serum TSH <0.01* 0.27-4.20
serum free T4 29* 11-22
serum anti-TPO antibodies 125* 0-34
I have been taking Selenium 100mcg twice a day.
but have not noticed any direct effect.
The double vision is worst in the morning then usualy gets better through the day. reading and computing make it way worse.
I have never had dry eyes or gritty eyes. If anything the opposite, really watery eyes.
I have tried eye drops(Xailin) like the doctor advised, again I cant say ive noticed any effects one way or the other. except crud build up outside my eyes.
When you say active phase. how long is this, does it have a set time. Ive been on the meds since Feb.
I will post again but feeling unwell at the minute. I think its all the eye work, typing and reading.
It can be confusing. I believe you were answering some of the questions various members asked you. When you replied, because you reply was to my post, I was notified but others wouldn’t have been.
The post is visible to all but unless they happened to looked back they wouldn’t know about your update. Mentioning them draws it to their attention. You can do this by using the @ icon & their name. Sunshrine
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).
As others have said, 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 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.
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.
Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. Please keep posting if you need any further advice or support
Really great advice Buddy. Keeping a ‘hidden’ photographic record and not looking on Google is a very good idea.
I think constant use of preservative free eye drops throughout the day and a gel at night will make Sunshine’s eyes feel a lot better. Much better that they are not dried out and irritated. I found an eye-bag that was heated in the microwave a good thing or even just squeezing out a facecloth in hot water and putting it on my eyes for a while.
Sunshine should ask to see a consultant who specialises in TED.
I know it must be frustrating that his consultant won’t discuss him thinking his TED improves when he stops the carb but I wouldn’t stop taking the carbimazole though because that’s what is going to calm things down.
As for the missing T3 result - believe it or not it seems to be up to the lab to decide if they are going to test it - in all the time I was being treated for Graves it was never tested - even when my consultant requested it. That - well and the fact my vitamins etc were not tested in that time either is the reason I pay for home finger prick tests and get everything tested. Skip the doctors altogether.
I think TED is something that ‘just happens’ to some people rather than it being caused by the carbimazole so I would stick with the carb - unless a TED specialist tells yu to stop it. My eyes were affected - double vision, weak muscles etc but fortunately not so badly that eye drops etc couldn’t keep things under control.
Not sure what I can add - but that I have Graves Disease diagnosed 2004 and RAI thyroid ablation 2005 which resulted in my being primary hypothyroid with Thyroid Eye disease.
Graves is an auto immune disease and something has triggered your immune system to turn and attack your body rather than defend it.
Why you - why me - is a question we all ask and the best placed person for the answer is within ourselves.
Every persons journey with Graves is unique to them, and we are looking at an AI disease for which there is currently no cure and why Graves is so poorly understood and badly treated.
All mainstream medical can do is try and manage the symptoms expressed with Anti Thyroid drugs and Beta Blockers, as Graves can be life threatening if not medicated, while we wait for your immune system response to calm down and your antibodies to fall back into range.
Some endocrinologist suggest a Block and Replace treatment option whereby your AT drug fully blocks any new daily thyroid hormone production and add back in a measured dose of T4 so you do not fall too far through the T3 and T4 range and experience the equally disabling symptoms of hypothyroidism.
Do you have an ophthalmologist and an endocrinologist liaising in your treatment options ?
There are specialist TED eye clinics throughout the country, where, as I understand it, ophthalmologist and endocrinologists who have a special interest in Graves / TED work together to optimise the patient's health and well being - and you can contact the charity, The Thyroid Eye Disease Trust - and be signposted to your nearest specialist clinic.
This may or may not be acceptable to you but if you can't get by the AT drugs then you are looking at having a thyroidectomy as if with TED - the other option, RAI, should be off the table as RAI tends to exacerbate or cause TED - as happened to me.
Recommend you get your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D up and maintained at optimal levels as when hyper or hypo and your metabolism not at your unique ratio the body struggles to extract key nutrients through food, no matter how well and clean you eat and low levels simply compound your health issues further.
it is a scary time and you are in information overload along with what appears some unanswered questions from mainstream medical>
Can you talk with your doctor and ask for a further explanation of these blood test - as we really need ranges to make better sense of all this detail.
Whatever eye drop preparations you use - please ensure all are Preservative Free even those prescribed by the NHS.
You might like to dip into Elaine Moore - books and website - elaine-moore.com
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