Grave's disease

[deathnotquitewarmedup]

I have been referred to an endocrinologist to investigate possible Grave's disease due to high TPO antibodies and persistent subclinical hyperthyroid (TSH undetectable but T3/T4 currently normal) after a bout of suspected post partum thyroiditis. It has come as a bit of a shock as I just assumed it was simply a post partum problem and that issues would resolve after a few months.

I just wondered if anyone had been through similar and has any advice about what might happen next, or can tell me if it's likely to be Grave's disease or could it be Hashimotos even though my TSH is 0?

Thank you!

Bump x

Hi @deathnotquitewarmedup I have Graves' disease diagnosed after I found out I have overactive thyroid. My tsh was very low. I believe it was diagnosed via an antibody blood test. It doesn't really cause me any issues, I just have regular blood tests to make sure my thyroid levels are ok, it's gone overactive a few times since I was first diagnosed about 4 years ago but mainly stayed ok and I'm able to stay off meds once it's levelled out again x

Thank you @Bellesjp that's really reassuring! I didn't realise you could have Graves' disease with not too many issues. I was overactive a few months ago and then underactive but it has been more stable for the last few months (although my TSH has been undetectable since about September!) so fingers crossed even if it is graves it won't cause me too many problems!
Thanks for taking the time to respond :)

No problem :) from my understanding, Graves' disease can just be the cause of overactive thyroid so that's what you have to keep under control, mine did go under active a few months after starting meds but that soon went back to normal after adjusting medication. I now haven't been on any meds for over a year.

I was diagnosed with hashimitos not long after birth. I had very high TPO antibodies. I don't know anything about Graves, but your TSH can swing low with Hashimito's as there is an attack on the thyroid and hormones cause the TSH to drop, but these are temporary and gradually TSH will raise and the thyroid will become underactive.
I definitely think pregnancy either triggered or exacerbated mine!

they may put you on meds for a year, either block and replace or just carbimizole. Then after a year withdraw the meds and see if your thyroid settles on its own.

its great your t4 and t3 are in the normal range

Thank you for taking the time to respond @ivykaty44. Would they be likely to put me on meds even though my T3/T4 are normal? I am a little bit worried about how long it might take to either resolve or stabilise as I might want to consider another baby at some stage and my gp has said that I should 100% not get pregnant until it is sorted. From what I've read, Graves' disease seems to be one of those ones where it can either be really straight forward or an absolute nightmare so I'm hoping they'll maybe discover that it isn't that

@GentlyGentlyOhDear interesting you say that, someone else mentioned to me before about hashimotos causing TSH to drop. I have already had one cycle of subclinical hyperthyroid> hyperthyroid > suden dramatic switch to very hypothyroid (hence the username!!) and then back to hyperthyroid when I took thyroxine, and then stuck on subclinical hyperthyroid now even though I haven't been taking anything for 3 months. Any idea how long your TSH would stay at 0 during a hashimotos attack? I could just ask all of these questions to the endocrinologist of course 😂 but who knows when that appointment will be!
Mine has 100% been triggered by pregnancy I think (in my completely unmedical opinion)

Name change fail, I don't know why I bother

@deathnotquitewarmedup I have Graves (confirmed by antibody tests) which I’m also pretty sure was triggered by pregnancy. It wasn’t picked up until dd2 was 2 so I was told it wasn’t but in hindsight I think my symptoms had been going on a while before diagnosis. My TSH was 0.01 when I was diagnosed, I had lost weight, was hot all the time, couldn’t sleep, anxious and my heart rate was very high. I was put on a drug called PTU because I was TTC at the time. Carbimazole which is the most widely prescribed drug isn’t suitable during the early stages of pregnancy. I was also told that it was likely that I wouldn’t be able to get pregnant until I was stable but I did. They don’t like you doing it because it’s more complicated and requires more monitoring but time wasn’t on my side! My thyroid actually sorted itself out for a while when i was pregnant and my antibody levels reduced but I had to be put back on a low level of medication after birth. I now have blood tests every 4-6 months which is not enough but I can just call the hospital and request extra tests if I feel that my symptoms are returning or if I feel that I am over medicated at any point.
One thing I found was that my gp had very limited understanding of Graves. I was referred to an endocrinologist but even in pre covid times that took months so I went private for an initial appointment. It was really helpful as I could ask the questions I needed to. He was also able to write to my gp to request all the blood tests I needed to get an accurate diagnosis (graves or hashis have different antibodies I think). It was a useful starting point as I already had this information when I finally did see an nhs endocrinologist.
I hope that all helps. Please do pm me if you want to.

After post partum thyroiditis, it's entirely possible that your TSH will-take some time to return to its usual level and should not be used as a diagnostic.

To confirm Graves, you would need positive TSI or TRAB antibodies. TPO antibodies suggest Hashis. There is significant risk of incorrect diagnosis of Graves due to lack of knowledge among doctors.

Lots of advice on the Thyroid UK forum. They will help you steer your way through this.

Thank you @ACatCalledLola and @DeedIDo that's really useful. I've been lucky my main doc has been really proactive and decided to do all of the blood tests that he thought the endocrinologist would probably want whilst I'm waiting for my referral to come through. My TSH has been undetectable for about 4 months now and I am about 1.5 yrs post partum. I have positive TPO antibodies but also positive TRAB. Do you know if the positive TRAB is definitely Graves, or could that be caused by something else? I was really hoping/convinced that it was post partum and going to totally resolve so I am a bit thrown and reading online about Graves seems quite overwhelming!

I had Graves disease at 23.
Had my thyroid completely removed.
On 150mg of thyroxine daily and never had any problems since.

@deathnotquitewarmedup I’ve just had a look and I have positive TSH receptor antibodies (TRAB) and thyroid peroxidase antibodies (TPO) antibodies and I have Graves so it sounds like you do too. That’s obviously assuming that my diagnosis is correct but since diagnosis I’ve always been overactive with low TSH except for a brief period when I was over medicated.
I know that Graves can appear postpartum and can resolve itself. I think it normally has resolved by a year or 18 months if it’s going to so you may have graves which was triggered by pregnancy. I wouldn’t give up hope of it resolving though as hormones can be crazy for ages, particularly if you’re breastfeeding. I’m assuming my graves resulted from pregnancy as there is no family history which is unusual.
I was diagnosed a couple of years ago and was and still am at times completely overwhelmed, particularly because it was a complete shock. My way of coping is to find out as much as I can about it. From what I understand, most people need treatment for a year to 18 months and then go into remission. This remission can last for life, years or months. In my case it was months but pregnancy complicated it so I have hope that I will go into remission again. At the moment I am on a very low dose of medication. My weight is stable and I don’t have any symptoms so I don’t notice anything other than taking a tablet every day. Of course things can change and I am constantly on the lookout for symptoms but at the moment things are ok.

@ParkheadParadise why did they decide to remove your thyroid if you don't mind me asking? It sounds like you have had a straightforward time of it since though which is great!
@ACatCalledLola yes defo sounds similar. In hindsight I shouldn't be too shocked as there is a variety of autoimmune disease in my family, including thyroid issues (although hashis rather than graves) but they seemed very sure it was "just" postpartum thyroiditis so I didn't even consider Graves. Hopefully it will go into remission before too long, and also hopefully my appointment with the endocrinologist will come through sooner rather than later so I can get some more info.

Thank you all for sharing your stories, it's really helpful!

@deathnotquitewarmedup
I developed a goiter an enlarged thyroid gland that has grown big enough to appear as a visible bulge on your neck. One that's specifically caused by Graves' disease.

I was diagnosed with Graves aged 24. Was on Carbimozole for a few years then had radioactive iodine treatment. Had my children, during which time my thyroid levels were monitored. After second baby was put on a low dose of Levothyroxine that I still take today (I’m 50 now). It has caused me absolutely no problems since I was diagnosed and started treatment.

I was diagnosed with Graves' disease a few years ago.. no idea what the trigger was but started to get worried after extreme and rapid weight loss and having balance issues. Unfortunately carbimazole never solved the problem and this summer my thyroid was completely removed. Now on levothyroxine and doing absolutely fine 👍

@ParkheadParadise thank you!
@SophieKat1982 @5thHelena those are both fairly reassuring stories, thank you! Funnily enough it's not the thought of having to be on treatment forever or even possibly having surgery etc that scares me, it's the thought of it being as difficult to manage as it has been over the past year. I have felt unwell for the best part of 8 months so I am just hoping to get it sorted and not have to be back and forth getting blood tests and on and off medication every other month!

Hi,

I was diagnosed with an overactive thyroid due to Graves Disease back in 2015, I was 30. I had rapid weight loss and suffered terrible heart palpitations. Carbimazole didn't work for me unfortunately and I was wanting to start a family. In Jan 2019 I had my thyroid completely removed. The idea of RAI scared me and I wanted a permanent solution. I'm forever thankful for my choice as they found a cancerous tumour within my thyroid. 9 months post surgery I achieved normal-ish levels and got pregnant. I was monitored closely and everything went well. My little boy is now nearly 19 months old and my levels have been stable for about a year now.

It can be overwhelming at times but you will be fine! If you have any questions then feel free to ask me, I know so much about Graves Disease x

That's really interesting @StrangerThings85 thanks! I've just been reading up about the RAI and the fertility aspect does worry me a bit as well as the whole radioactiveness. Were they able to give you any indication of why the carbimazole didn't work? I am so glad the surgery worked out and they got the tumour out, that sounds really scary. Had they done any ultrasounds or did it just not show up?

Thank you for letting me know your story, it's so useful to hear all of the different real life stories rather than just the medical jargon!

@deathnotquitewarmedup they didn't do any ultrasounds or scans, just a physical feel of my thyroid which was only slightly enlarged. You could only see it if I pointed it out and even then it wasn't obvious really. My thyroid felt smooth to the doctor's so there was no cause for concern.

I tried coming off carbimazole but to be honest I think we tried too soon. The Graves came raging back. I can't remember when I tried coming off the meds but it was probably within the first 1-2 years and then I went on block and replace but I was told I couldn't be on that forever with me being young as it can lead to osteoporosis (carbimazole side effect...yay). RAI just never felt right to me and I knew I wanted to try for a baby and that would have pushed it further back. A permanent, albeit daunting, solution was complete removal and I've never regretted it 3 years later. There are days I'm super tired and I often wonder if it's due to that but I try not to overthink it and feel lucky I'm where I am at today x

I have Graves' disease but a rare type with blocking and stimulating antibodies so I have periods of under and then over activity. Tbh the under activity is much worse ime.

I am seeing a fab private endo who has just put me into a T4/T3 combo as am underactive at mo and I had stopped converting T4 to T3 after having covid.

TRAB strongly indicates Graves Disease. It tends to run in families, I have two cousins and an aunt with it. TPO can be raised in Graves or in Hashis.

Things to watch for with Graves, thyroid eye disease. Much more likely if you smoke or are around secondhand smoke. Also RAI can bring on TED or make it worse if you have it already.

Stress can obviously trigger a flare.

Neither RAI or thyroidectomy cure Graves, just the symptoms. The Graves antibodies are still active and can still cause TED. Both are highly likely to cause permanent hypothyroidism for which you will need lifelong medication. That would be fine but there is a whole world of controversy around hypothyroidism medication and sadly many many people are under or incorrectly treated. I've had to battle for 6 years plus go private to get adequate treatment as an example. You can read many more on the Thyroid U.K. forum on Health Unlocked that, as per the PP, I would strongly recommend you join. So RAI or a thyroidectomy is not a decision to be taken lightly.

There is various research going on currently to find a cure for Graves. One, project Daviad, was looking very promising pre covid with positive results at first human trials (it's a vaccine, but one you have after you have the disease). I haven't seen much update on it though sadly and it's likely impacted by covid and possibly Brexit (it was an EU project). However there is potentially stuff in the pipeline but how far off is any ones guess.

Don't be pushed into RAI or thyroidectomy if it's not what you want. It's pretty permanent if it doesn't work out (some people do have v positive experiences of both to give some balance). Some people remain on carbimazole etc long term so that is an option if that's what you prefer. Carbimazole does however come with its own risks.

I'd also have a look at Elaine Moores Graves' disease website.

Long term risks of an untested overactive thyroid are osteoporosis and heart problems so not something to be messed with. Suppressed TSH on its own should not cause such issues (ie without raised T3/T4) but this is another highly controversial issue that you may wish to do some reading up on. Different bodies and different endos have different on this and their us conflicting evidence (however a large number of thyroid studies are very poorly designed).

Sorry bit of a dump of info but hopefully helpful. If I think of anything else I'll pop back on. 😊

Carbimazole does not cause osteoporosis. Having too high T4/T3 will cause osteoporosis over time however so if carbi is not working you are highly likely to develop osteoporosis. And as stated previously there is mixed opinion on whether a suppressed TSH on its own causes osteoporosis/heart problems, and sometimes reduced thyroid hormone does not result in an increased TSH.

However if your TSH stops responding that's unlikely to be fixed by RAI or thyroidectomy either.

There is also evidence that hypothyroidism can also cause issues with bone density over time.

Really what everyone needs is a beautifully balanced thyroid function!

bnf.nice.org.uk/drug/carbimazole.html

@TooManyPJs thank you, so much info to read up on! It's all so overwhelming as there just seems to be so many possibilities and different decisions to be made. I agree re the underactive thyroid- I went from hyperactive to hypoactive (TSH went from 0-50 in 4 weeks) last year and honestly felt like I was going to die when it was underactive, hence my username 😂

I will apparently get my appointment with the endocrinologist within a month so hopefully they will have more info. Pretty sure based on how I am currently feeling that my T3&4 are still within range. Luckily I seem to be able to read my own symptoms quite well as I have been able to phone the gp anytime it has felt out of whack and say I need blood tests and I haven't been wrong yet! Do you know are they likely to prescribe medication even if my T3&4 aren't high?