Couple of years ago I was diagnosed with thyroiditis. Last year became quite unwell and got told had hyperthyroidism.
I had a nuclear uptake scan done a few weeks ago and had first consultation with endo and scan has come back that I have Graves.
Scan also picked up that I have a nodule so am having an ultrasound scan in couple of weeks. Bit nervous as to what to expect, anyone who has had one, do they just do ultrasound or a needle to see what it is.
I’m also being referred to eye specialist, this really worries me, I’ve had sore eyes for a few months, how many people suffer with TED and is it very treatable?
Thanks
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Veejay17
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Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb) are associated with Graves, have you had these tested?
Ask the hospital for a copy of the scan report & don’t trust a verbal summary that it shows Graves... detection of a nodule should state if the nodule is functioning (hot or toxic) or cold.
Fine needle aspirations (FNA) are guided by ultrasound. I had a local when I had one sprung on me unexpectedly but I do hear others have samples taken without it. The doctor had me gently bite end of tongue which helps you to keep still & it’s completed very quick.
They may take a few samples as FNA can sometimes be insufficient. 19 / 20 samples taken are benign.
Excellent you are under the care of a ophthalmologist who monitor you correctly. Should you show signs of TED there are treatment options and serious complications are quite rare.
I have lots of eye problems but told I’m told it can be thyroid related as I have hyper nodule not Graves & so I can’t get any help!
Hiya, thanks for your response. Yes have had antibodies tested and positive. I didn’t know you could get a copy of scan, thanks for that will ask. The consultant never mentioned on phone if was hot or cold just said nodule, maybe have to wait to the ultrasound for that information as no idea if the other scan would of picked that up. I wouldn’t be overkeen on having done without a local, you brave there. Sorry to hear you can’t get any help with your eyes, that’s crazy. I’m trying drops at the moment . Fingers crossed appointment not too far away.
An uptake scan shows the areas of activity within the gland. Each condition has a distinct pattern. So with Graves the entire gland would be highly concentrated, compared to a healthy thyroid. One showing thyroiditis has low concentrations. A cold nodule would show very low concentrations.
I was never given a copy of the image but I had a printed copy the interpretation report. Your report alone might be sufficient evidence to proceed treatment progression for Graves but many would insist on the conclusive evidence of the TrAb & or TSI Ab are positive as these are unique to Graves. Whereas TPO & TGAb are associated with both autoimmune conditions Hashi & Graves. You are seeing a lot of emphasis over this point as on this forum we learn of many people having not only anti thyroid medication but even Radioactive iodine or surgery which are irreversible treatments for what may have been a transient state.
I have thyroiditis too, mine started as sub clinical hypothyroid. My first symptom was eye problems. Nurse practitioner prescribed eye drops. Still had issues, optician prescribed eye drops, still had issues, opthamology checked my eyes, diagnosed dry eyes and gave me eye cream. My eyes only give me problems in the winder / dark nights especially driving. Although I’m told it’s dry eyes, I feel my pain Is muscle related. Not ted but worth a mention.
I’ve also had ultrasound on my thyroid and fine needle aspiration. It’s totally fine. I also had to go back a year later to check any nodules etc hadn’t changed in size. The radiographers were really good and told me everything they could see at the time so it wasn’t like you went home wondering what had been seen. It’s the same scan pregnant people get with gel on and a roller over the area. I didn’t feel much with needle part - it just sounds way worse than it actually is!
Thanks for reply, certainly helps Seems to be way that they tell you to use eye drops, was the cream much better for you? I struggle with brightness, tried to change my prescription sunglasses lense colour but not sure if makes too much difference had to have change of prescription about 4 times in last couple of years, no idea if to do with thyroid or just getting old. My eyes water a lot in the wind. Thanks for sharing re your fine needle experience, I will be glad to get over and done with
Brightness was my issue too. I was kinda conned into my first pair of prescription glasses. Thinking it was the answer I got prescribed 0.5 lenses and anti glare coatings... made no odds
I’ve had creams to apply 4x a day, I’ve had creams to apply in the evenings. Honestly the only thing which has helped has been getting my tsh and t4 sorted. I used to get 3 days worth of eye ache and feel blinded after car head lights shone in my eyes. Now the pain is mild and only in winter months. I still use eye gel from time to time. My eyes watered too especially when they were playing up and I just didn’t get it when I was told I had dry eyes but it was something to do with the rate it evaporated. Have a look at the nhs website for dry eyes - it explains it better than I ever can!
Will be interesting to see how you get on at opthomology. I do hope you find your fix.
It is most important that you get an antibody blood test to confirm you do have over range TSI ( may read as a stimulating ) and or TR ab ( may read as a blocking ) antibodies :
Graves Ophthalmology and Thyroid Eye Disease run their own independent courses whether or not you have Graves Disease.
Do you have any blood tests you need explaining to you ?
Have you been put on any medication ?
I have Graves Disease but had RAI thyroid ablation in 2005 and now manage lingering Graves, TED- caused by the RAI, and hypothyroidism.
If you go onto the Thyroid UK website you can read up more on all things thyroid.
There is also the Elaine Moore Graves Diseases Foundation website run by Elaine who has Graves and went through RAI but finding no help nor understanding with her continued ill heath started researching Graves at the turn of this century. She has now had several books published and her website also offers an open forum for all Graves sufferers world wide to openly ask questions of the community.
Yes to the antibodies. Hoping my letter for eyes comes through soon, take away bit of the worry to at least get them checked out
I’m good with my blood tests thanks, I’d posted before when didn’t have proper diagnosis and got lots of help.
I’m on medication, propranolol and Carbimazole and on other meds for anxiety doing pretty good with that hat wish there was a tablet to control temperature 😄
Will have a look at website you suggest. Lots to take in and understand. Thanks again for your reply, stay safe and well x
Looking back at your previous post it was suggested that you had Hashimotos AI Disease and not Graves :
Graves is different antibodies to Hashimoto's as that's the definitive difference as at the beginning both these AI diseases present in the same way : BUT are treated differently.
Please check back for over range and positive Graves antibodies usually presented as a TSI ( might read thyroid stimulating ) or TR ab ( might read thyroid receptor blocking ) :
Veejay17 . iv'e just noticed this, and don't know if you are aware or not as i haven't had chance to read your history ... but the antibodies you mention above.....Thyroglobulin antibodies, (TGab ) 2329 [>115]
and Thyroid Peroxidase antibodies (TPOab) 275 [>34],
are NOT the antibodies which confirm Graves Disease (although some people with Graves do have them)
The antibodies which confirm Graves Disease as the cause for hyperthyroid are called TRab ~ Thyroid stimulating hormone Receptor antibodies
Or sometimes they are called TSI .
Do you have any other antibody results apart from the ones you mention above ?
This is important , .. if you do not have raised TRab /TSI you may not have Graves disease, and should not be treated for it unless it is confirmed.
The treatment for Graves is VERY different from the treatment for Hashimoto's even though they can initially present with similar symptoms.
See pennyannies reply above.
Apologies if you already know all this. just checking
So sorry you are having to deal with this it will be an ultrasound first and if the dr believes the nodules or nodules are suspicious the dr will do a needle biopsy nothing to worry about though we are heard for you this place helps I was diagnosed in June of 2020 with hashimoto thyroiditis and I have been going down hill too I have pain in my eyes I have had a sore throat for 3 months I have been to multiple ENT specialists have had ct scan and ultrasound and they have found nothing pain in my ear and neck now it’s ridiculous this disease is a learning process for sure
Sorry to hear you are struggling as well. Did you get biopsy done on same day of ultrasound or go back for the biopsy? When I got diagnosed with thyroiditis back in 2019 it was pretty awful so I get you. Were you put on Levo to sort your levels out? Has your vit d been checked? I was vit d deficient levels were very low and this can cause joint issues. I had pain with turning my neck to the left but this has now gone. I also did bit of physio with writing my name in the sky so something worked there, might be worth a go for you. I hope you get some answers and get the help you need. I struggle with chronic pain but did a pain management course and was best thing I ever did. Maybe something you could look into it doesn’t take the pain away but I’ve learnt to pace myself etc
I had the ultrasound and they said that they think it’s a nodule but not sure they want to check it in 3 months and of course that makes me want to do it now to be sure yeah I was put on Levo to level out and they do blood work and my vitamin D level is really low I put myself on vitamin D dr said nothing about it The throat and neck pain will go away for a couple days and then come back it’s crazy yeah I am going to go see a pain management dr thank you for your help I feel like I have gotten more help here than the drs
Whether you have Hashimoto's Thyroiditis or Graves' Disease it suggests you have an autoimmune disease of some kind.
Problems with your eyes, particularly severe dryness, could be caused by Hashi's or Graves, but another possibility is that you might have developed Sjogren's Syndrome which is also an autoimmune condition.
Once someone has one autoimmune disease they are more likely than the healthy population to get another one.
The treatment for Sjogren's doesn't involve removing someone's thyroid. (I don't actually know what the treatment is for it.)
I'm mentioning Sjogren's just to point out that there are several possibilities for at least one of your symptoms.
The reason we get twitchy about someone saying they have Graves's without having had the appropriate antibodies tested is that there have been instances of people turning up on the forum saying they were diagnosed with Graves' Disease and they had RAI or thyroidectomy. Later checking of their blood test results shows that it is unlikely that they had Graves' in the first place but instead had Hashimoto's Thyroiditis.
Even if someone does have confirmed Graves' Disease, some sufferers manage to put their disease into remission by taking anti-thyroid drugs (ATD) for a year or two (or three or four years or more - some people cope well on long-term ATD, some people don't), and they keep their thyroids. Life without a thyroid is not fun for many Graves' sufferers, and nobody should get their thyroid destroyed or removed without trying all other possibilities first.
Hashi's often first shows up as transient hyperthyroidism. Damage to the thyroid gland from Hashi's eventually causes hypOthyroidism, removing any need for RAI or thyroidectomy or ATD.
The other thing is that people with Graves's Disease (i.e. true hyperthyroidism) tend to have much higher levels of Free T4 and Free T3 than someone with the transient hypERthyroidism caused by Hashi's.
If you get RAI or thyroidectomy and you know that it was your only choice then you will feel better (emotionally) than if your thyroid was destroyed or removed for the wrong reasons.
I will be sure to follow up with the consultant on everything that is being mentioned by others and your good self. Will take a look at Shogrens, heard of it but never read up on it. Thank you 🙏
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