Endocrinology appointment with graves

[Hkm2281]

I was diagnosed with graves in dec, finally saw an endo in march started me on carb. Im just wondering how frequently those with graves see there endo when they are in active treatment. I did have my next appointment in dec (would have been a 10 month wait between) but they have cancelled it. I have started getting pain in eyes now fear I have thyroid eye disease too.

[bantam12]

I used to see my Endo every 4-6 weeks while on treatment.

[PurpleNails Administrator]

I usually have a blood test every 6 weeks, then contacted by tele clinic by specialist nurse. Then attend an appointment every 6 months. (longer gaps and postponements lately).

You must be monitored frequently when taking carbimazole to ensure the levels stay within range, staying too high or falling below must be avoided and you must be dosed by ft4 & ft3 not the TSH alone.

When was your last test?

Contact your GP or endo department with regards to your eyes. You May find your levels are too low and that it shown to trigger thyroid eye disease. Other than pain in your eyes do you have any other symptoms, with your eyes or other?

[Hkm2281 in reply to PurpleNails]

Hello,

Thanks for your reply, I phoned up my GP practice every 8 weeks and they are usually accommodating in a blood test although just ft4 and TSH . My last test was last fri and my levels are in range now including TSH 0.18 (range 0.1 to 4).

My eyes hurt when I move them left and right, theres a bit of asymmetry when my eyes but most wouldn't notice.

[Hkm2281 in reply to Hkm2281]

I have included a pic of how my eyes are now.

[PurpleNails Administrator in reply to Hkm2281]

You eyes look very good. I don’t see any asymmetry. Pain when moving can be a concern. Keep raising it with the GP & endo until they listen.

In my area certain specialist high street opticians are responsible for any eye issues and they are expected to liaise with hospital ophthalmology. They deal with all eye related ailments & emergency’s (along side their normal work).

Unfortunately all the opticians near me seem to have limited emergency appointments. Hopefully others find better.

GPs now pass any eye issue to them so they will not help me either. As I don’t have Graves endo says I can’t possibly have TED related issues so no help there either & I have a noticeable asymmetry. I’m at a loss trying to find help, but hopefully your GP or endo will help you or if you area has arrangements with opticians they will help too. If your area doesn’t do this system, a standard optician can advise and write a referral letter for your GP.

[Hennerton]

I think you need to make a polite request to have regular blood tests to monitor how your thyroid is reacting to carbimazole. It may work very quickly and then you will become under active, which will feel as bad as the reverse but in different ways. I was an absolute pain to my GP practice and demanded blood tests whenever I could feel I was not right. They were very accommodating but I think they are less generous with testing nowadays.

Make a note of every result and make sure they are testing T4 and T3 as well as TSH. You must look at the range given and ensure you are in a good place. Generally GPs are happy wherever you are and they mostly know very little about thyroid, which is why you are seeing an endocrinologist.

Sadly they know only a little more.

If you develop a sore throat, you must tell your GP immediately. I expect they warned you of this?

As you have eye pain, it is a good reason to ask for an appointment with your GP and he/she can decide whether to investigate it.

I ended up having my thyroid out and I would recommend trying everything before you go down that route. I bitterly regret that I allowed this to happen without looking into it more but these were the days before I was proficient at finding information online. Good luck!

[Hkm2281 in reply to Hennerton]

Fortunately the results go on my GP app so I always have access to them which is good. Gp doesn't like to make a decision on meds last blood in aug it took ther consultant 1 month to reply about a dose change what's the point in that.

Yes I'll try to avoid thyroid removal I do seem to react well to meds so hopefully that will remain. He did say I had a 50 50 chance of keeping it.

[Buddy195 Administrator]

I have TED & would recommend you take Selenium daily just in case you have this too. It’s definitely worth seeing your optician ASAP & getting a referral to an ophthalmologist who specialises in TED if you need to. I have not yet required any intervention; just sunglasses (for light sensitivity) selenium & preservative free eye drops (for dry eye)to date. Keep posting if you need further advice.

[Hkm2281 in reply to Buddy195]

Thank you I will look into this. I saw my optician at specsavers, he said he didn't know what graves was and if I was concerned see my gp.

[Hkm2281 in reply to Hkm2281]

I have included a pic of my eyes!

[Valarian]

Every 4-6 weeks until my thyroid levels were within range, then typically every 3-6 months, depending on test results, whether my medication had been changed, and appointment availability. There were periods where I had tests more frequently than appointments (which is also the case at the moment).

If you’re worried about your eyes you should definitely push for an appointment, even if it can only initially be a phone consult at the moment .. you made need specialist referral to a thyroid eye clinic.

[Hkm2281 in reply to Valarian]

Yes im going to phone gp on mon, my eyes have been really uncomfortable again today. That's not normal is it, I'll see what they say.

[pennyannie]

Hey there again ;

Looking back I think I saw your ferritin at very low levels ( 17 ) in a previous post ?

It was advised to get an iron panel and testing for B12, folate and vitamin D - have you managed to action anything on these and do you have some results to share for knowledgeable people to advise on loading doses ?

Graves is known to " trash " vitamins and minerals and without these at optimal levels your thyroid hormone replacement and overall health and wellbeing, will be compromised.

Depending on where you live there might be a TED ( thyroid eye disease ) specialist outpost of Moorfields Eye Hospital London : please seek with doctor / hospital for advice on this matter :

If using any eye drops, lotions or potions please ensure that they are preservative free.

Are you still on the Carbimazole with now Block and Replace or was this AT drug switched to PTU because of your rashes ?

[Hkm2281 in reply to pennyannie]

Yes in aug it was 17, gp said it was normal range. Vit d they wouldn't test, folate was ok, and b12 they wouldn't test. I live in manchester, there is an eye hospital there, my endo is based at the hospital next door at MRI.

He kept me on the carb so I can only have it in doses less than 20mg seems to keep rash away at those levels. I can't be on block and replace now.

Thanks so all your reply, it always helps to think about your next moves!!

[pennyannie in reply to Hkm2281]

Oh, hello there, just saw your picture :

I'm sorry but you really need to know your levels of ferritin, folate B12 and vitamin D :

You may need to get these tested privately if doctor will not oblige - your ferritin at 17 maybe in the range but in all honesty this number needs to be up at around 70 + : and I'm guessing these other core strength vitamins and minerals have all taken a hit because of the Graves and so will need building up.

So I'm confused. as I thought you were put on Block and Replace, why was this stopped, or did it never start - sorry :

Your doctor says you are now back in range for your TSH but what are your T3 and T4 results and does this mean your Carbimazole will be reduced down as otherwise you may fall into hypothyroidism.

Can you just " turn up " at the eye hospital if in pain ?

If not you need an urgent referral from your doctor / endocrinologist .

[CanIHaveYourJuiceBox]

Pre covid , I used to have a blood test and then an appointment every three months. Since covid , I’ve had one telephone consult since March. I just managed to get my bloods done this week. My next appointment is in December.

[Buddy195 Administrator]

Your eyes look very similar to mine. TEDct are a great source of information, but don’t scare yourself looking at treatments & worse case scenarios as things can calm down a lot with correct Vitamins and thyroid medication. The TEDct helpline gave me details of a specialist TED ophthalmologist in my area & were lovely in the phone! Please ensure you are supplementing with selenium as a precaution as this can really help. Are your eyes dry at all- I use HycoSan Extra drops. I also take lutein & zeazanthin (eye complex 7 from Amazon) as this helps my dry eye. I have Hashimotos with mild TED. I did think I had Graves initially, as I had hyper symptoms, but antibodies clearly show Hashis.

Keep posting if you need any support or advice! 😊

[Lora7again]

You are very brave to put your real picture on here. My eyes have been ok and one started to bulge but never got as bad as yours.

Have you looked Elaine Moore's site?

Here is a link to it.

elaine-moore.com/

[Kaitie]

I got diagnosed in jun with Graves’ disease I’ve on seen my specialist 1 and she suggested removal of thyroid as it’s so big and I’m hvi g trouble with my eyes

[Lora7again in reply to Kaitie]

Do you have the results of your goiter scan?

[Cavapoochonowner]

Just seen post.I have graves and also ted.I'm on block and replace for second time after a relapse only 2 weeks after stopping.I could never get appointments with my endo close enough together for blood tests ie around every 6 weeks so he used to give or send me a few blood forms, I have the bloods done at my local GP then phone his secretary so she can inform him.Last time he phoned me to change my dose which was great , but this time I haven't heard and I had one last Wednesday.He must be writing to me which isn't ideal as it can add a couple of weeks on which isn't ideal if the dose needs changing.I can't remember how I got refered about my eyes.I am already attending an opthamology dept as I've had 2 cataracts removed and a detatched retina in the past.I may have mentioned my eyes there or my endo might have referred me as it comes under a different department.My main problems are dry gritty eyes, alot of puffiness below and above my eye pain when looking to the side and above or below, slowness in movind my eyes up, down or side to side and occasional double vision when my eyes are tired.I have been disgnosed with mild ted, monitored and prescribed ibuprofen for the pain and swelling and hycosan eye drops as required to help with the dry gritty feeling.Sometimes I wear an eyemask at night to stop me rubbing them and also it helps with the dryness incase my eyes don't close fully when I'm asleep.Hope this helps.Sorry its a bit long winded but I found it's helped me to learn about other peoples experiences.