After being diagnosed with Thyrotoxicosis and medicated with Carbimazole and Propranolol, they finally did the Thyroid Antibodies test.
They said I have hyperthyroidism, likely caused by Graves disease. I have symptoms of Thyroid Eye Disease.
My results came back in range!
So, do I not have Graves disease after all?!
After feeling like I was finally getting a handle on things, I'm now utterly lost again. What now?
ETA - sorry, this post was written in annoyance. The result is for Thyroid Receptor Ab. My other results still show hyperthyroidism (severe before medication), issues with liver function (apparently due to unmanaged Thyrotoxicosis), and elevated red blood cell count (still not entirely sure but apparently related). Eye symptoms have not been diagnosed, just fit with TED - they may be unrelated.
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Opposite
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Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
TRab
TSH receptor antibodies
TSI
Thyroid-Stimulating Immunoglobulin
TPO & TG antibodies may be Graves or Hashimotos.
TPOab
Thyroid Peroxidase antibodies
TGab
Thyroglobulin antibodies
Which tests have you had?
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 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.
I have hyperthyroidism but obviously don't have Graves.
It might be coincidence I am suffering with my eyes. My mum also has watery eyes, so perhaps it's genetic. Mine are just so incredibly sensitive - I often do wear sunglasses indoors. Eye drops have never helped but I can't say I have ever checked for preservatives so I'll get some that are preservative free. I'll also try the selenium just in case.
Hi. You may well have thyroid Eye Disease, and be Euthyroid like me. I doubt the eye problem is a coincidence. I had gritty watery eyes for a few months, then one eye started bulging above, and I now have slight proctosis, and double vision when I am tired, this is after 10 months. I am now on IV Methylprednisolone once weekly for 12 weeks, and Mycophenolate for 6 months. Do keep a close eye on your eyes changing because if it is Thyroid Eye Disease then early treatment is vital.
Nothing has been said yet, this was just uploaded to the patient portal. I will see what the endocrinologist says.
I did, thank you. I was then utterly convinced I had Graves and TED and ready to seek treatment. This result has completely thrown me. As I said above, perhaps it isn't TED at all and just coincidence I suffer with my eyes.
No, not on these tests. The results are being uploaded sporadically but I think this is the last one I was waiting on. The endo did say he was testing for Graves specifically, so this makes sense.
I am moving to PTU but I still have hyperthyroidism so I won't be coming off it. I was severely hyper and believe I have been for around 5 years. I'm also on Propranolol. It just seems Graves is not the cause.
My mum won't see Doctors. She believes in 'natural medicine', so she has no diagnosis or medication for anything. I don't believe she has any other thyroid symptoms. She has always had digestive issues. Her eyes get puffy and are watery, but I don't believe they are sore like mine.
Graves is considered life threatening if not medicated with an AT drug and doubt Graves has been ' going on ' for the past 5 years un-medicated as the T3 and T4 keep rising higher and higher causing a thyroid storm and hospitalisation.
However with Hashimoto's the high T3/T4 levels are transient and rise and fall as your thyroid is systematically attacked by this AI disease - and this sounds more like Hashimoto's and thyroid eye disease.
From memory - I don't think you have ever had a TSH, Free T3 and Free T4 run at the same time ?
and can you just confirm from your initial first blood test results and see if there is any mention there of TPO or TgAb - antibody readings please.
I had TSH and T4 done at the same time but as far as I can determine from the results, I've never had T3 tested.
I haven't had any other antibodies testing - just this one.
This was one of the things the endocrinologist apologised for when he arranged for me to be tested for Graves. He was pretty certain that's what it was, so I assume now that's ruled out he will order the other tests. My next appointment isn't for a month though.
5 years ago, I suddenly gained 4 stone, developed anxiety and palpitations, and started suffering hair loss. I thought I was having a mental breakdown. Now that the symptoms are all beginning to resolve themselves from antithyroid meds, I'm quite sure this is when it all started.
I'm happy to wait and see what he says, so long as everything keeps improving. I will push for the other tests at my next appointment.
Eta - thank you. I hadn't paid much attention to Hashimotos because I'm overactive but I'll do some reading.
Yes, insomnia, depression and anxiety. I started Citalopram and zopiclone, and changed my job and lifestyle. All this time, I thought it was mental health causing physical symptoms. Then Covid hit and because of other medical history I was isolated. The past 5 years have all kind of blurred into a bit of a bad dream.
I'm just going through all the advice I've been given and wanted to confirm, I did check these results. They were very slightly Hyper and no antibody testing was done.
I'm kicking myself now for my complete lack of control but I have never questioned my medical care until recently. I am slowly getting to the bottom of it all now though.
Please stop being so hard on yourself - you are only human - and like all of us - trusted the medical professionals - we have all been there and why we are here now - giving back and helping others - as without this forum we would all be with much worse health than we currently maintain.
Yes, thank you - I'm slowly working my way through the things I need but I am relying on the NHS to provide - I can't provide results I don't have.
I've had TSH, TS4, Thyroid Receptor Antibodies, and a range of tests I'm trying to work out the relevance of.
This step was testing for Graves. I'm trying to ascertain if having Thyroid Receptor Antibodies in normal range rules that out. I'm assuming it does. My thyroid results are all improving, as are my symptoms - my remaining concern was my eyes... which it seems may be unrelated.
Sorry to hear all of the trouble you’re having. I am also hyperthyroid and awaiting a diagnosis. Just gone through an array of tests, including the one you have posted.
It looks like you have a below range TRAb. From what I have read online, this is one of the diagnostics for Graves’.
Do you have an appointment with a consultant lined up?
I’m in the limbo land between GP and consultant. It’s a killer.
My appointment is on 21st March, which will make it almost 5 months between testing in Thyrotoxicosis and seeing an Endocrinologist. After years of advocating for them, I am increasingly losing faith in the NHS.
This is the Graves diagnostic test and it appears I am in range, so do not have Graves disease.
My original bloods:
Serum free T4 37.3 (11.1-22.0) above
Serum TSH <0.01 (0.27-4.2) below
They are not testing T3.
The past few months have been a rollercoaster but thankfully, the medications do appear to be working.
My last set of bloods showed my thyroid levels almost back in range and my symptoms are vastly improved - other than my eyes and hair loss.
The optician has written to my Doctor to refer me to Moorfields Eye Hospital for Thyroid Eye Disease.
The hair loss I'm working on, with caffeine shampoo, flaxseed oil supplements, and a silk bonnet to sleep in!
My concern now is that when I do finally see the Endo, they'll have no interest in the cause because my symptoms and bloods are improving.
I intend to get private bloods done after my appointment, if they do not send me for T3, and Hashimotos antibody testing.
It's all been very frustrating but I do feel much better.
How has your journey been so far?
hey Opposite,
Thank you for sharing your journey, it sound’s totally frustrating.
My symptoms started when I gave birth (it was traumatic as i suffered a severe hemorrhage) and I was sweating at night, soft nails, irritable, anxious (so severe had panic attacks all the time) and hair loss. I lost the baby weight in a few months and then some.
I put all this down to being a new mum. It wasn’t until this January, (2 years on) I had enough of people telling me to relax and calm down and commenting on my low weight that I thought I would go to the docs. That, and my heart rate being too high (resting 85 which should be mid 60s). My eyes have terrible bags if I eat things like soy. Hand shakes that are very irritating.
The GP listened to me and gave me full bloods. All came back ok (still waiting on Celiac) apart from thyroid, which read similar to yours!
T4 38
TSH 0.001
TPOAb 138!!! (Range 0-34)
TRAb 3 (range -3.3) so mine is known as “equivocal” meaning can’t be sure either way
As the days go on I am suspecting to get a graves diagnosis. Will find out in April.
Carbimazole is feeling nice after nearly a week. Heart rate dropping a little so hopefully will continue on this path.
I’ve got a bunch of supplements too. I am really hoping I kick this things a$$ into remission.
I'm sorry for all you've been through, alongside being a new mum. That must be so hard. Well done for getting is sorted.
I know the high antibodies result is scary but honestly, I envy you. That should give you a definitive diagnosis and hopefully a very clear treatment plan. I do hope that happens for you soon.
I'm glad to hear the carbimazole is working for you too. I switched to the the other one (pythol... something - PTU) for a week and my symptoms came right back so carbimazole is definitely my drug of choice right now!
My symptoms are very much like yours, except I gained over 4 stone. I think that's why my symptoms were ignored for so long- because it's not 'typical' of Hyperthyroidism. I have spoken to the Endo on the phone a couple of times, and he reassured me both weight loss and gain are common due to changes in appetite and metabolism. Thankfully, I am losing weight now medicated.
What supplements are you taking?
I already take Iron and Magnesium for aneamia and RLS.
Since this diagnosis, and with advice from here and my optician, I have started L-Taurine, Vit D, and Selenium.
It's hard to know what helps because things are changing week by week at the moment.
But again, I do feel better. If Carbimazole is working for you then hopefully you have the same few weeks ahead of everything steadily improving.
That’s great about the weight loss. I can understand how frustrating it must be to have “non standard” symptoms.
Mine are also a little strange, from what I’ve read. TPOAb signals auto immune issues but typically Hashimoto’s thyroiditis (can be Graves too). I know my TRAb is borderline but I’m hoping it’s not Graves, even though it blatantly is.
I am taking selenium and Vit D - no medical professional had advised me to, this is what I have researched. What is L-Taurine for?
I am hoping you find answers soon.
I am tempted to go private and get TSI and T3 done…
The autoimmune result really disappointed me, which is crazy, I know - but I was so relieved to finally have a diagnosis and an answer to all my problems - then it came back negative for Graves!
My hope is that it is Hashimotos or inflammation, though I don't know what could have caused the latter. Otherwise it looks like the cause would be a (benign) tumour and that's a scary word.
I wouldn't like to guess at what yours is because I (obviously!) don't know enough but it looks like it's pretty clearly autoimmune. That's an answer at least, and you can begin working on getting better, knowing whats wrong 😊
The L-Taurine was recommended by someone on here for helping with energy levels. Again, it's hard to know what to attribute to what, but as I feel a lot better over the past few weeks, I'll keep taking it unless someone tells me to stop.
I'm going to see what the NHS can do for me and then fill the gaps with private testing. I'd like to get all my vitamins and minerals checked but it adds up, so I'll start with the basics.
Blue Horizon do a 15% discount on your first order, and Medichecks have a 10% discount with code 'THYROIDUK' (I think - it is posted in the forum regularly if that doesn't work).
Perhaps wait and see what the Endo offers first, too. Seems silly to pay if we don't have to.
it is a scary world. I know of two people who had benign tumors and they both had a partial thyroidectomy. They are both doing really well and absolutely fine. I know everyone is different but there is light at the end of the tunnel!
Im looking into holistic therapy today…
Apparently quitting lactose and gluten are golden tickets…
I just received a TPOab result of 246! Looks like we're on the same journey here.
Really annoyed that I seem to be the only person getting fat from these results 😂 but I'm relieved this should hopefully result in a (non-tumour) diagnosis!
Still no idea if this means Graves or Hashimotos though.
Yes, I keep seeing Gluten / Dairy free diets recommended. I'm staying in denial on that as long as I can, as I feel miserable enough with all this! And I really do love bread. And chocolate. This might explain the weight gain... (!)
Please do let me know if you go ahead with a new diet and see any improvement though. Hope you find something that helps soon!
Thank you. Maybe you do! It seems to be the most common reason for TPOab to be high, though I'm still struggling to fully understand.
I'm a little stunned, and annoyed at not being a 'typical' Hashimotos case, which makes it hard to find advice online. Literally everything is about treating Hypo, and I'm Hyper. But that said, I'm very glad it's unlikely to be a tumour.
I called the Endo and they confirmed it's 'most likely' Hashis and to continue on my current treatment for Hyperthyroidism for now. I think they just want me to stop calling until my appointment though, I'm getting annoying! A definitive answer would obviously be much better.
Yes, heart palpitations were one of my first symptoms, along with thinning hair, heat intolerance, and then weight gain. I'm almost certain I have thyroid eye disease too and the optician has referred me to Moorfields Eye Hospital but I can't remember when they started getting so bad.
Have you had cholesterol checked? If not, please do. I did a lot of reading for my Fiancé, who has 'raised' but not yet high. It's dangerous stuff!
and you have a fiancé, we have so much in common!
Well done for getting to the bottom of it, the wait is quite literally maddening.
I would be relieved too, with your news. I hope the trek to Moorfields eye clinic is successful and you get a satisfactory result 🤞
Yes, being a rare case is more difficult to research but it seems like it’s most likely to go hypo? Maybe it’ll balance out in due course and you’ll get some time on an even keel! The good news is Hashi is much easier to treat. Gluten is the enemy though 😭
And thank you. I'm really looking forward to some help with my eyes.
I completely understand the NHS is underfunded and doctors are doing their best but honestly, my treatment through this has been absolutely dire. I'm tempted to complain to the medical ombudsman if things don't improve.
I got an email today summarising blood results from October. I've had three more sets taken since then, and still haven't actually seen an Endo. They've only spoken to me because I keep calling them. The TPOab result just appeared randomly on the portal and I didn't even know it had been done!
I sincerely hope your care is better than mine has been so far.
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