Hello,
I have recently been diagnosed with thyrotoxicosis.
Referred to Endocrinologist awaiting appointment and ultra sound. I do have an enlarged thyroid along with drifficulty swallowing.
My GP has prescribed me Carbimazole 60mg and Propranolol 120mg.
My blood were as follows;
TSH - <0.01 mu/L
Free T4 - >100 pmol/L
Free T3 - 47.5 pmol/L
My question is, do I have Graves' disease (I have had it noted by two doctors an eye problem beging with p) or is it just classed as hyperthyroidism?
Hi , I have Graves disease but no expert! I know you have to have a blood test to test for certain antibodies to find out if you have Graves.If I remember correctly what our clutter told me its TSI antibodies.From what you are saying about your eyes it sounds like Graves.The vast majority of hyperthyroidism is caused by Graves so it is very likely. You must feel dreadful with those blood results. Have you started on medication? X
Hello p1pp1ns.
Yes I have felt awful for about 2 years progressively getting worse, tremors, weight loss, depression, reduced menstrual cycle.
But in all honestly I never considered a thyroid problem, even though my nan was on thyroxine for an underactive thyroid.
I have been taking the meds for two weeks with no problems and feeling a bit more normal.
How are you now? Are you all under control/normal levels? Have you managed to cope with, living with Graves' disease?
I had a full blood screen, there is something on my results:
Thyroid peroxidase antibod lev 284ku/L (normal range 0.00-34.00ku/L) is this it or a more thorough test?
X
Hi there
In real haste, will write more tomorrow but good you have been referred to an endo as your levels are through the roof, you poor thing.
OK so antibodies. Graves is diagnosed with positive TSH Receptor antibodies, or TRab for short. These bind to the TSH receptor hence the suppressed TSH, and they prevent your 'thermostat' telling the boiler that is your thyroid to stop pumping out hormones. So it's like the feedback loop between your thermostat and your boiler don't work. TRab are sometimes also called TSI (thyroid stimulating immunoglobins) but for now if you just think of them as TSH receptor antibodies that'll keep it simple!
60% of Graves patients ALSO have elevated TPO antibodies, which you do (it's hard for a GP to get a TRab test, so he's only checked TPO I'm guessing) but most often elevated TPO are associated with Hashimotos. However, you'd just be diagnosed with Graves if you have both TRab and TPO. As you have eye issues, I'd say it's definitely graves. Have your eyes moved forwards, have you got a staring look - the word the doc used was probably proptosis? This is part of the description of exopthalmus, or the bulging eyes associated with Graves.
In either case the fact that you have high levels of thyroid autoantibodies tells us it's autoimmune disease, and the eyes are a dead giveaway for Graves. You can't have thyroid eye disease without TRab antibodies.
It gets tricky when you are also positive for TgAb (thyroglobulin autoantibodies) as then you'd have all three - TRAB, TPO and TgAb - this introduces the nasty little critter known as Hashitoxicosis, which is Graves and Hashis together and it's harder to control, it's hypO and hyPER at the same time. I had this and it's not funny. It gets even trickier as doctors presume that as you have the eye involvement then it has to be graves, and they don't necessarily do the full screen - which also happened to me, my TgAb were not checked until way down the line, much misery later. The name Hashitoxcosis is more commonly used in the States to describe Hashis and Graves in parallel but is gaining traction here, my endo professor in London - when I finally found him - used this term, as did the whole endo team there.
For now the main thing is to rest, to get your levels down, and to EDUCATE yourself. It's a long and bumpy road to getting well, not helped by a medical profession intent on ignoring and dismissing thyroid patients as a bunch of hysterical moaning minnies. YOU need to be driving the bus.
But write this on a post-it and stick it on the fridge - "I am hyperthyroid, my body, my brain, my metabolism, my feelings, my thoughts are on 'fast forward' and I am prone to making rash decisions that feel very, very real at the time - I must SLOW DOWN' - Graves disease in full swing can break up marriages, get us sacked from jobs and hurtle us into serious medical decisions without thinking through the consequences as everything is heightened, going like the clappers, and thyrotoxicity makes us irritable, emotional and very quick to (over) react. This is part of your illness and NOT YOU. I had a doctor also get me to write on a post it and stick on my mirror 'The problem is the problem and not me!'.
Many endocrinologists like quick and permanent solutions, they think they've got Graves all figured out - maybe they do, some do, but that is not my experience - I have a good endo now but had a heck of a time getting there. As you have eye disease you CANNOT have RAI so they will offer surgery. Surgery is very much a last, last, last resort. Provided your levels come down to a safe zone and you feel OK, you have time to think things through, get yourself up to speed and decide what is best for you. Your doctor works FOR YOU, and he does things FOR YOU and not TO YOU. It's your body, you decide what happens to it.
See here: elaine-moore.com/Articles/G...
You MUST be referred to a specialist eye hospital like Moorfields, and you MUST NOT be allowed to go HYPO as that will make your eyes worse.
Sorry I'm being so direct, it's late and I'm tired but wanted to reply. There are plenty of things you can do yourself to help yourself whilst you get it all figured out, plenty of rest, cutting out gluten and wheat, taking up anything that calms you down like yoga, meditation etc would help. Supplements are important but that can be dealt with over the coming weeks and months.
I might as well be honest, it's a long tough road, and Graves is a very serious illness. The problem is your IMMUNE SYSTEM and the victim is your thyroid. Calming down the immune system is what will ultimately help you - even if your thyroid is surgically removed (like mine was, wouldn't recommend it! 
) then you'd still have Graves disease, just no thyroid. Doctors don't explain this very well, well most of them don't.
Hope that helps rather than alarms, it can be a lot to take in!
Luv
Rebecca
x
I have just read your comment Rebecca which was very helpful.
When I was diagnosed over 10 years ago my TSH was 180+ whilst my T3 was 1.00 and my T4 was 72.20) I was told I am overactive but was given Euthyrox which is the equivalent of Levothyroxine.
My most recent lab results were TSH 4.86, FT4 19.4, no T3 was checked unfortunately, TPO antibodies 600. My doctor told me that this suggested an autoimmunie disorder and I had Graves disease. My question is can I be underactive (hight TSH) and have Graves disease in the same time?
I have been taking 100mg levothyroxine in the last 6 weeks which was raised from 75mg.
I am due for another blood test on Thursday.
Many thanks,
Hetty
Hiya Hetty
wow that's an interesting set of numbers! You can have Graves disease and hashitmotos at the same time, it's called Hashitoxicosis, however, Graves is diagnosed by the presence of TRab antiboides, or TSH Receptor antibodies, and these bind to the TSH receptor and cause TSH suppression. You don't have a low TSH so I'd say you have Hashimotos, which is characterised by swinging levels of hormones. That low T3 must be making you feel dreadful!
It's beyond my knowledge but you can have BLOCKING Graves antibodies - I think these are called TBI - Thyroid Blocking Immunoglobins, but I'm afraid I don't understand it enough.
You might find this helpful - Colin Dayan's paper in the Lancet on how to interpret thyroid results: geocities.ws/mim_subspec/La...
You need to be referred to a competent endocrinologist but I'd say you don't have graves but you do have hashimotos (you have high TPO antibodies which are usually present in Hashis). You'd also want a pituitary problem ruled out.
Many people who end up with Graves or Hashitoxicosis (in the mainly American understanding of that term to mean Graves AND hashis in parallel) start off with hyPO and end up with hyPER later. This is definintely my story, looking back I clearly had the ups and downs of hashis before I went to develop graves and hashitoxicosis.
Hope that helps,
Bec
x
Hiya that T3 result is over 10 years old 
the last FT3 I had done was 2 years ago and it was 3.39. Is that any better?
I felt awaful (tired, brainfog, not able to focus on things) a couple months ago then GP did a test and raised Levo to 100mg. I now feel a lot better but planning on having a baby soon so wanted to sort these numbers out before we start trying.
GP doesn't want to refer me to an endo so not sure what to do 
thanks for the reply though x
Hey there
I'd print off that Lancet article and take it to the doctor and insist you are referred. No a T3 of 3 point something is crap, you are HYPO. Your TSH is up, and your T3 is down, but it'll swing around as you have hashis, I'm sure. But your original set of results are very odd, with the high TSH and the high T4 but the none existent T3, I've not seen that before.
Also the high T4 but the low T3 you have NOW means you are NOT converting the levo, so you are sort of T4 toxic but still hypO - levothyroxine is a pro-hormone (it does have some uses in the body in and of itself, so I'm not a fan of T3 only protocol, partic for women) and your body needs to convert it to the life giving T3, your results say that your body is not doing that. I'm also a member of TPA and they have this nifty little document written by doctor peatfield, if you want to get pregnant you need to ensure that all of these are sorted out tpauk.com/main/why-thyroid-...
You need your iron levels, B12, folate, vitamin D testing asap, and it wouldn't hurt to test your sex hormones as they can really go up the creek if your thyroid is not sorted. Taking one teaspoon of apple cider vinegar in a big glass of water with your meds in the morning, on an empty stomach an hour before food will help. Levothyroxine needs enough acid to detach a molecule to make it bioindentical - so taking any antacids or proton pump inhibitors (like Opramazole) would be interfering with absorption. Low thyroid is associated with lots of problems in getting or staying pregnant.
Stop the Thyroid Madness website might also help you, if you google it.
Bec
x
I had iron, B12, folate, ferritin tested last time and everything was fine according to GP.
I take my meds before I go to bed (I find it easier to remember as I take my pill then too) 
but never heard about the apple cider vinegar thing.
I will have another blood test on Thursday so will see GP again next week. Will post the results then and decide whether I should see an endo or just do a private blood testing for (TSH, FT4 & FT3).
I have printed off the stuff you suggested so will read them through later Thanks again for your help.
Hetty x
You're welcome, definitely get copies of all your results including B12, folate etc, as 'normal' by stingy NHS standards and 'optimal' from a thyroid perspective are not the same thing ... Good luck xx
Hi rebecca,
Thank you so much for responding and sharing some valuable information. I hope to know more once I see the endo, whenever that may be.
So just because my TPO antibodies were raised, this does not necessarily mean I could have graves and Hashimoto's. I will push for all three to be tested.
With regards to my eyes they are enlarged, dry and protrude slightly, but my GP (she has been very supportive) and occupational health Doctor didn't mention seeing a ophthalmologist, just for me to attend a thyroid clinic. I did notice however that the hospital I have been referred to has a thyroid eye clinic as well.
The post-it ideas: I love it and will do it This situation could be explaining why i have suffered with unexplainable emotional problems, and depression for far
too long. Along with all the physical problems.
Thanks again Rebecca much appreciated i will consider all options and educate myself as much as possible.
Sarah x
Hi there
I wrote you a long reply on the day you responded but it has somehow vanished. Sorry about that. You are very welcome.
And yes, exactly right, Graves disease is diagnosed by the presence of TRab antibodies (which you almost certainly have because you have eye involvement) but 60% of straight Graves disease patients also have elevated TPO. This in itself does NOT mean you also have Hashis.
It only gets complicated if you ALSO have TgAb as well ... well not that Graves isn't complicated on its own but you know what I mean. Then, with all three, you'd have Graves and Hashis, in the States and more frequently here these days this is called Hashitoxicosis and it means you have hyPER and hypO at the same time and you can have T3 spikes that don't show up on blood tests, unless they catch it on an upswing. It's more complicated to control.
You do need to be seen by a TED specialist for your eyes and in the meantime the WORST thing for your eyes (apart from smoking) is if your levels are allowed to fall too far because they keep you on too high a dose of carbimazole for too long. Your GP needs to be titrating your dose by your FREE T3 levels and absolutely NOT your TSH (TRab suppress the TSH, so you can be HYPO and still have a suppressed TSH as the feedback loop is broken because of the autoimmunity).
In your shoes I'd also be discussing 'block and replace' with your doctor, there is more information here: tiredthyroid.com/graves.html
Best of luck
Rebecca
x
Thank you Rebecca, appreciate your help. It's lookibg like I won't be seeing an endo until after my holiday. Thankfully I gave up smoking in February.
Thanks for the link, no doubt I will post again after seeing endo.
Sarah x
Sorry just noticed you have started meds!
Sip79, You have positive thyroid peroxidase antibodies for autoimune thyroid disease (Hashimoto's). You also need TSH Receptor antibodies (TRab) tested for autoimmune hyperthyroidism (Graves) but having thyroid eye disease (TED) makes it very likely you do have Graves too. There's information on antibodies and hyperthyroidism in the links below:
Hi, there knew Clutter would know! I didnt get my Graves antibody blood test done until I saw the Endo so may be same for you. I was diagnosed last November but had symptoms for about 9 months before which I thought was menopause! I finished my meds treatment last day in August and had my first blood test since stopoing meds a couple of weeks ago.All was in range my TSH had gone up to 1.4.It was same as yours before treatmemt although my T4 never got as high as yours.
I felt awful before treatment same symptoms as you and couldnt sleep , always felt boiling hot etc, I started to feel better oretty quickly with meds.My eyes are luckily only mildly affected so just need to use artificial tears .Always try and get print outs of blood results and post on here gor people to comment on.
I have coped quite well with Graves I suppose my maim worry is will I stay in range now off meds, Endo said they need to be normal for a year before classes as in remission. From what I can gather once you have Graves you have it for life but its not always active,
I would read up on all the old Graves posts , learn al, you can.Beware of RAI treatment if you have eye problems as it usually makes eyes much worse.Many people feel pushed into it butvthere is usually no reason why you cant stay on meds.I notice however you have a large goiter causing swallowing difficulties so maybe in such cases it isa ddifferent case .
All in all I thinkmthe dreadful anxiety before diagnosis was one of thecworst bitscfor me to cope with.
You need to take care of yourself, bit of tlc, take it easy your system has been and still going through a traumatic time.Good luck .....kim x
Thank you so much for your comments and I'm glad you are off meds, hope it stays positive. I suppose I'll know more when I see endo. i can relate to the anexity and hot flashes and thought I may have been pre-menpausal. it's all a bit new to me, never heard of graves or Hashimoto's. Surely you can't have both?
Also I got my dose wrong, carb is 30mg a day.
Sarah.
Yes it is possible to have the antibodies for both at the same time . Hopefully a member called girl scout will see this as she has both.I started on 20mg of carb which I stayed on until I saw the Endo.I then changed from carb to block and replace therapy, This is where yountake (in my case anyway) 40mg of carb to completely stop thyroid production and levothyroxine as you have to have thyroid hormone.Some Endos prefer carb only some block and replace. We have members on both regimes.If you do just carb the doc will lower the amount of carb you need asyour thyroid production starts to drop.
I know its confusing and a bit scarey at first , I still after a year only know the basics but if I am unsure I ask on here.Do the same someone usually can explain.I had never heard of Graves either! Have you got a date for Endo appointment? ?.kim x
No, not got my endo appointment yet. GP has put it through as urgent with a view to me being see before I go away on hols 10th nov. It is all so confusing, you read all this stuff and it doesn't make any sense. It's good to talk to people who are/were going through the same. So glad I found this forum. Would be interesting in talking to Girl Scout, hopefully they will see this.
Thanks
Sarah x
Hey there, I posted further up the thread. It definitely sounds like Graves. They'd need to do more tests to check if it's Hashis alongside it - that's called Hashitoxicosis, but you'd need to be positive for all three antibodies : TRab, TPO (you can get elevated TPO in Graves as well as Hashis, so that's not unusual) but the clincher would be elevated TgAb also. A good endo will test all of this.
If you are not seen by an endo for a while, your GP needs to be blood testing you every couple of weeks just to check you don't overshoot, most of us respond very fast to carbimazole and betablockers, hypO is no fun either.
Anyway, hope my reply further up helps
xx
I have Graves', no thyroid now but have the eye disease beginning with P, proptosis or thyroid eye disease often shortened to TED. Around 50% of people with Graves' have some eye discomfort but only 3% have noticeable or sight issues.
Your eyes need to be treated by an eye specialist, opthalmologist this is important. Not an endo, GP or high street optician. Most people have some mild symptoms. Smoking has an adverse effect. Your eyes should be treated as a separate disease. You should seek a referral as soon as possible.
Yes shambles, proptosis that's it. I am going to push to see and opthamalist and was hoping to go to a thyroid clinic as I believe they cover all aspects.
Thanks for your reply.
You need an eye hospital with a specialist TED clinic, Moorfields is good, well the best in Europe! They look after me. Very, very important to get eyes checked asap. Your GP could get that referral moving ... a thyroid clinic will not look after your eyes, that needs an eye hospital. xx
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