I was diagnosed with Graves’ Disease at the end of July after struggling with a host of symptoms including depression, irritability, mood swings and rage. My doctor started me off on 40mg of Propranolol and 20mg of Carbimazole, both taken three times daily. After several weeks of tapering off, I stopped taking Propranolol on Wednesday, as per my doctor’s advice. I’m now down to 15mg Carbimazole twice daily and my last Thyroid Function Test showed some improvement (my T4 was back within the normal range although T3 was still elevated and TSH too low to be detected). I’m also feeling generally better and my eyes are less bulgy. Yet I still experience Thyroid Rage and feel depressed from time to time. I don’t understand why because I’m extremely diligent with my medication. Some mornings, I wake up angry for no apparent reason and I snap at the slightest provocation. I saw a psychiatrist who wanted to prescribe a course of SSRI antidepressants but I’ve been hesitant because I think that the Graves’ is to blame as opposed to depression. Has anyone else had a similar experience? I would like to get back to my old self and some days, it feels like I’m unable to cope with life in a reasonable manner.
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Graves is an autoimmune disease and there is probably a genetic predisposition, maybe someone a generation away from you with a thyroid disease and it can be triggered by a sudden shock to the system, like a car accident or unexpected death of a loved one.
Do you have a blood test showing a positive, over range for either the TSI ( in laymans terms stimulating ) or TR ab ( in laymans terms blocking ) antibodies and the very first blood test result at diagnosis ?
The thyroid is the victim in all this and not the cause - as the case is your immune system attacking your body.
If you can find the trigger as to why your thyroid has been attacked, your half way to solving why this has happened and you might find that by making some life style and diet changes this calms down your whole immune system.
Apart from testing the antibodies to confirm and have the medical evidence the NHS do not know how to control the antibodies so tend to ignore these levels after diagnosis but this area is vital to your understandingof what's going on.
This area is very much up to you, and you might like read around Graves Disease on the Elaine Moore Graves Disease Foundation website.
Everything you mentioned can be associated and Graves rage is a " thing " !!!
The thyroid is amajor gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating sustem and your metabolism.
The anti thyroid drugs block your own thyroid production and overtime you levels of T3 and T4 will come come back down into range and you will start to feel more comfortable.
This is when your AT drugs maybe reduced down soas not to let you go further down the range and then end up with hypothyroid symptoms.
It is high T3 that causes symptoms of hyperthyroidism and low T3 that causes the opposite, hypothyroidism, and the two ends of the same T3 stick, one as extreme as to the other.
My initially symptoms were only insomnia, dry gritty eyes and exhastion but read of others, like yourself needing beta blockers to calm the heart thumps and pounding, and also feelings of nervousness, anxiousness, sweating, eating for England though loosing weight, as your metabolism has gone a bit haywire, and the list of symptoms goes on.
Graves ravages the body and it will be important to keep your core strength strong and solid to help you ride out this phase of the disease and would suggest you ask for your ferritin, folate, B12 and vitamin D to be tested and post the results and ranges back on here so we can see what needs supplementing.
This also aplies to the thyroid blood test results, so if you have any blood test to share start a new post with the T3 and T4 numbers and ranges and what level of AT drug you are currently on so people better able than me can talk you through everything.
You might well be told you are in range but it is where you are in the range that gives you your wellness, and this applies to everything - being in a range, and being otimal in the ranges are two very different things.
The NHS generally give round a 15 month window for treatment with AT drugs with a view that if you can't " find remission " you need the drastic action of thyroid removal, either surgically or through RAI thyroid ablation.
Since you already have eye issues you must not have RAI because this can exacerbate your eyes, and would suggest you ask to be seen by a Graves Thyroid Eye Disease specialist and I understand TED clinics are around the country, but if not Moorfields Eye Hospital in Central London is world reknowned.
I have Graves and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism. I now self medicate with full spectrum thyroid hormones as the NHS routinely only prescribe one treatment option T4 - Levothyroxine.
A fully functioning working thyroid would be supporting you on a daily basis with thyroid hormones : T1. T2, T3, T4 and calcitonin and for those people whose actual gland is disabled, damaged or simply not there any longer, if T4 doesn't return their good health there are other other countries offer thyroid hormone replacements options.
Knowing what I do now, I would try and stay on the AT medications, as loosing a major gland to an autoimmune disease doesn't really make any sense, especially if well on the AT drug as it is the least invasive treatment and means you can keep your options open, and change your mind at a later date should you so wish.
Thank you for taking the time to give me such a detailed response. I’ve spoken to my parents about the genetic predisposition but they can’t seem to remember anyone who’s had it besides me. Perhaps, it’s always been there but there hasn’t been an environmental trigger before now (nature vs nurture). I suspect that my triggers were chronic stress - school, work (especially the job search), poor sleep habits) and gut issues which I’ve been dealing with for several years.
Yes, I have blood tests showing high levels of TSI and TSHR antibodies; my doctor says that these results confirm that I have Graves’ Disease. I’ve made several diet and lifestyle changes in an attempt to calm my immune system and I’ve experienced similar frustrations with my endocrinologist. She’s unwilling to address my immune system in any way (be that through diet and lifestyle changes) and her focus has been on getting my TSH, T3 and T4 levels back to “normal”.
I’ve been reading Sarah Ballantyne’s book on autoimmunity (although the name would imply otherwise!), “The Paleo Approach”, and I think that’s helped me a great deal. Thank you for sharing about Elaine Moore’s website, I’ll check it out. Thank you also for affirming that Thyroid Rage is a thing! It’s a great source of encouragement to be heard and understood. This is another area where I don’t think my doctor is too comfortable - the direct effects of Graves’ Disease on mental health. I hope as you say that after some time on the anti-thyroid medication, I will start to feel more comfortable. I had my eyes checked by a non-specialist optometrist and everything came out fine there besides some dryness and the slight exophthalmos. However, it’s probably wise to see a TED specialist.
I had all the symptoms you mentioned above and more; it was terrible. Initially, I thought my symptoms were due to clinical depression and everything going on with COVID-19 getting to me. The good thing is that I’ve already experienced a great reduction in many of my symptoms while on AT medication but the dreaded Thyroid Rage still rears its ugly head. I’ll create a new post and share my thyroid test results as you’ve advised. I also have tests for folate, ferritin, B12, vitamin D and some other vitamins and minerals.
Thank you for sharing your personal experience with RAI. My doctor has discussed the possibility of RAI or a thyroidectomy but I hope I never have to go down either of those routes - especially as I already have TED. My endocrinologist says that it’s not safe to stay on AT medication long-term (beyond 2 years). In addition to taking my medication religiously, I hope the lifestyle and dietary changes I’ve made will increase my chances of remission. I try to be positive whenever I can. It’s not always easy but I try.
Since you already have signs of eye issues and TED - RAI must not even be considered as a treatment option :
I read there are TED clinics throughout the country - please get a referral as you need additional support and likely a better understanding of the implications of Graves and thyroid levels.
There is a TED charity - who offer support and should be able to advise of your nearest specialist unit - believe these outposts are spin offs of Moorfields Hospital - London.
Thank you pennyannie !I’ll look up the charity. Last week, I attended an interesting webinar on TED with a board certified optometrist. She has an interesting approach to RAI in patients with TED.
She gives them a course of steroids one week before RAI and for two weeks afterwards. In over 20 years, she said she’s never had anyone’s TED get worse. I still would rather not do RAI (and fingers crossed, I’m doing well enough that I wouldn’t need to) but I thought it was an innovative approach.
If push comes to shove a thyroidectomy is much " cleaner ' and more precise with the diseased gland and all it's contents removed from the body.
RAI is a toxic substance that slowly burns out the gland in situ, with the Graves antibodies and the RAI which all stay festering in your body.
Does the thyroid gland breakdown and what happens to it, and it's contents ?
RAI induced primary hypothyroidism is more difficult to treat:
RAI is known to be absorbed to a lesser extent, by other glands and organ within the body, including breast tissue, the genitals, pancreas and gastric and oral mucosa.
RAI can cause salivary and tear duct damage :
RAI can cause an increased risk of developing fibromyalgia type symptoms :
Studies show an increase in cancers, especially of the thyroid gland and small bowel :
I don't know what constitutes a treatment option being safe and successful or even if the long term consequences of the treatment are even considered.
In my opinion, from what I've read it seems in many cases the treatment for Graves is a bit like taking a hammer to crack a nut.
I have suffered much fall out from RAI treatment, some years after ingestion, and have been very ill dealing with my whole body drying up, and after 2 years going around various hospital departments with no medical professional able to give me a definitive answer as to what was wrong with me.
Housebound I then thought maybe that Graves I had RAI for 12 years ago had come back, and read Graves isn't cured by the treatment and all of my symptoms were described in Elaine's Moore first book as being associated with RAI treatment but, yet again, dismissed by my doctor as a conundrum.
I could go on but shall not - and just ask - why would anyone knowing the above think this is acceptable when the issue is an auto immune disease and there is an option to stay on the anti thyroid drugs for as long as it takes.
These are just a few pointers - please do your research:
More papers seem to be coming available and I've not found one recommending RAI.
Sorry I don't understand how to do links and my cut and paste requires scissors and glue.
Thank you for sharing this and for sharing your story too. I haven’t read Elaine Moore’s book yet but I will do some more research. Just like you, I struggle to understand why doctors seem to ignore the autoimmune component of Graves’ Disease and they only address the thyroid when in many ways, the thyroid is a victim of the autoimmune attack. That’s why I really appreciate the functional medicine approach to treating Graves’ Disease - things are looked at holistically. One endocrinologist told me that because my goitre was so small, no surgeon would touch it because it would be too risky. But honestly, I’m doing so well using a combination of functional and conventional medicine that fingers crossed, I hope and pray I wouldn’t need anything as drastic as RAI or thyroidectomy🤞
My Endo is tapering me off Carbimazole (currently on 50mg a week) but based on what I’ve learnt from this group, I’ll push to stay on it (even if it’s just a very low dose) until my antibodies fall significantly as that will give me the greatest chance of long-term remission.
Elaine Moore has written several books and also now runs a very comprehensive website with a world wide following for all Graves sufferers, their families and loved ones.
There are various well researched sections including more holistic and alternative options to treating Graves Disease from other countries in the World where respect of the thyroid is paramount to achieving good health and wellbeing.
I’m familiar with Elaine Moore’s website and have read some of the articles she has there - very useful indeed.
However, I’m not quite sure I know how to use her forum correctly. I posted a question on there a couple of weeks ago and still haven’t gotten a response.
Oh ! I've only ever contacted her direct - as I only learnt about everything 12 years too late for me and being of an age, sat surrounded with books I could highlight to try and make sense of and found her first book very challenging on many levels but then I'm dyslexic.
Did you go through a process of having to join the forum - I'm sorry, I really can't remember - will think on !!!
I never used to have a bad temper but now I can lose it at the drop of a hat. I made my next door neighbour cry when I saw she had instructed a man to cut my trees without my permission and even threatened the tree man with a lawsuit! What I did was give him adverse publicity because he killed my clematis which had been growing for many years and it didn't flower this year because of him cutting it right back. Even today I had to walk away from someone in M & S who was dithering in front of me. My husband has to tiptoe around me most days because I can lose my temper over the smallest of things. I wouldn't take anti-depressants if I was you but try some breathing exercises when you feel like you might be getting annoyed or stressed by something. I also have a colouring book which I love and this helps me feel calmer before I go to sleep every night. Just to add the coronavirus situation is adding to my stress and a lot of people without Graves' are feeling depressed so you are not alone.
Thank you for reassuring me and for sharing your story. My blood was boiling as I read about your trees and clematis. If I were in your position, that would really upset me - Graves’ Disease or not! The main difference is that I now find that I’m less self-controlled and measured in my reactions and it seems that these days, I’ll let just about anyone have it when I’m in one of my moods. I need to learn to walk away more when I see that a situation could be triggering, like you did with the dithery person.
I try to explain to my family that Thyroid Rage is its own real issue beyond the stress of learning to navigate my recent Graves’ Disease diagnosis. I’m not sure they get it so it’s comforting to be understood here. I think it’s the sort of thing that you have to experience to understand. My family bear the brunt of my rage too and I wish it weren’t so. I wish I could always treat them with the love I feel so deeply for them.
I’m seeing a different psychiatrist tomorrow. This time, for psychotherapy. I hope that helps so that I can avoid the antidepressants. I’m already dealing with some uncomfortable side effects from the Carbimazole (the Propranolol was even worse) as it is and I’m reluctant to expose myself to more medication. I try to do something relaxing everyday such as cooking, spending time outdoors or getting lost in a book. I’m not the best at breathing exercises but I could certainly give them another go. I’ve been putting off meditation for a while now too. The colouring book sounds great, I’ll have to give that a try. Thank you for reminding me that I’m not alone. I certainly feel less alone with all the support I’ve received here.
You have made feel like I am not being so unreasonable because the same neighbours have been complaining yet again about our fence being the wrong colour. I feel like saying just paint it the colour you want instead of moaning to us! The wife is a picture of misery everytime I see her and is always moaning about something. It isn't anything to do with the coronavirus btw but probably because they are both retired and spend most days nitpicking about everything. I have told my husband if we end up like those 2 I'm off! lol
You are certainly not alone. With neighbours like that, you’re doing a far better job than I would. Lol, you wouldn’t end up like them! Especially with all the fantastic relaxation techniques you’ve shared with me. Take excellent care of yourself and have the most beautiful day xxx
Today they have been in the garden moaning about everything again. I just put my earphones in and ignored them .... some people are just miserable and I don't understand why because they both have good health and a lovely home but just enjoy complaining about stuff 🙄
Some people get a kick out of aggravating others, good decision to ignore them if you ask me. They will get the message eventually; I’ve been walking away more myself. Once I anticipate that a situation is going to stress me out unduly, I’m out - for the sake of protecting my sanity. I wouldn’t even entertain relatively minor bickering.
It's pretty common. My saving grace, when my thyroid levels were at their worst, was that while my brain seemed (to me !) to be working faster than everyone else's , making them appear like idiots for not seeing the world as I did, my mouth was completely unable to keep up with the speed of my own thoughts, so fear of talking gibberish often kept me silent.
Be kind to yourself, and (as a fellow Graves' sufferer, (I do realise this will be difficult !) be patient. It's barely two months since you were diagnosed, it's still early days., and your FT3 is still above range. Carbimazole works by inhibiting production of new hormone, but it can't destroy the existing stores in your body, and these can take six to eight weeks to work through. It often takes this long for symptoms to begin to noticeably improve, and it's likely to be another couple of months before you really feel like your normal self.
Stress really doesn't help with Graves'. It's worth finding some things that will help you de-stress, and these should help with 'thyroid rage' too. Covid19 has given many of us an appreciation for the simpler things in life, and maybe some of these will help you through this period. For me, the anger and anxiety and mood swings improved as my thyroid levels came down. To be honest, when you are first diagnosed, the combination of symptoms most of us get with active Graves' can leave you wondering if your life will ever be the same again, so a bit of anger, anxiety and depression is quite natural, if difficult for friends and family. The good news is, most of us get through this and begin to feel so much better within a few months.
Hello Valarian, I didn’t realise that I hadn’t responded! Thank you for your lovely message and encouragement. There are so many days when it feels like I’ll never be my normal self again and my mouth is looser than ever 😩
I’m working on being more patient with myself every day and not letting the peaks and troughs I experience from one day to the next deter me. It’s good to learn that I just need to give myself time and hope for the very best. Most of all, I no longer feel alone about experiencing Thyroid Rage.
Hmmm, am I the only one that became incredibly exhaused due to being hyper/having Graves? I also get angry at the smallest things! But I am so so tired and actually gained weight because I was so desperate to not be tired that I started eating more and more!
I am a mature medical student (1 year away from becoming a registered medical doctor, already have my PhD) so the tiredness and the inability to focus meant my grades dropped significantly. I am also studying medicine in my 3rd language so that didn't help either (in Dutch). I feel super dumb all the time as all my energy has to be focussed on staying awake. For me corona came at the right time, I slept for 3 months (all the medical students were sent home in the Netherlands).
I am now continuing my masters of medicine (so seeing patients etc). I am struggling as I am still so tired. I am on 90mg of AT drugs. That seems to keep me in high normal levels (T 4 around 20.00, T 3 unfortunately still elevated at around 13.0 and obviously still repressed TSH).
My thyroid is being removed soon as I am also getting older and want to start a family. I am not allowed to become pregnant on 90mg AT :-(. It sucks!
Oh btw I have been on AT for 7 months. My thyroid function tests only became more normal once my dose reached the maximum at 90.00mg
First of all, kudos to you for all the hard work you’ve put into your studies. Studying medicine in your third language is hard core, not to mention the added burden of Graves’ Disease! What you’re doing is amazing so please don’t be hard on yourself about your grades dropping and don’t feel dumb ever - you are clearly very bright and driven.
I also suffered from extreme exhaustion and I couldn’t concentrate on anything meaningful. Things have improved since I started AT medication (I started at 60mg Carbimazole and 120mg Propranolol) but the most frustrating part is that things change from day-to-day. Some days, I’m full of energy and other days I can barely get off the couch.
It’s only been two months so I’ve been advised here to give myself more time. After tapering down from 60mg to 30mg to 20mg Carbimazole daily, the AT treatment has still managed to turn me from hyper to hypo in the space of two months! My doctor has told me to come off the medication completely and we’ll watch to see if my levels balance out naturally on their own.
Hypo and all, I’m still getting angry! I have the worst mood swings and I get irritated easily. From what I’ve learnt here, it’s something I’ll have to be patient with. Even when you achieve euthyroid status, it may take a while before you start to feel completely like yourself again - give yourself time 🤗
Appetite wise, I gradually became less hungry after about 4 weeks on AT medication. Now that I’m hypo, I have even less of an appetite but managed to gain 4kg in a week! As I have mild TED, I’m not very open to a thyroidectomy or RAI as they could worsen TED. Also, because Graves’ Disease is autoimmune and my thyroid is a victim rather than the cause. Instead, I’ve been focusing on supporting my treatment with dietary and lifestyle changes to see if I can calm my immune system down.
It seems to be working - and I wonder if that’s why the AT treatment sent me hypo so quickly - but it’s early days still. I do have a friend whose dad had a thyroidectomy years ago and has been doing just fine taking a pill a day to manage the resulting hypothyroidism. I’m not sure whether or not he has Graves’ though, could have been regular hyperthyroidism. Have you looked into the Elaine Moore Foundation? I learnt about it on here. It could be good to give some of her articles a read before going ahead with surgery. Take excellent care of yourself xxx
Yeah my AT is thiamazol which is the direct form of the drug whereas you’re on carbimazol which is a prodrug (so my max is 90mg and for your drug it’s 150mg). I am still not hypo although the extreme tiredness has stayed away for the whole of last week until yesterday! That was quite nice!
I think the little angry monster will subside at some point! The meds and our thyroids do mess with us quite a bit!
I hope your thyroid evens out soon! Good luck and take care!
Hi bellazzura, I know what you mean. I am not sure if it is entirely due to graves but I definitely started feeling much more lower than normal about 3 months into being diagnosed, but that is also because I had to wait 3 months before strating treatment, because of the covid related delays. I have therefore started seeing a therapist online at that time and it's helped me managed my mental state. The therapist confirmed that it is very possible to be psychologically affected by graves or other diseases that impact various hormone levels. Hope it helps, all the best!
Hello Dreea, thank you for your input! I’m sorry it took so long for you to start treatment. I’ve actually been doing much better since I came down to 10mg Carbimazole daily. Turns out, my body is quite sensitive to Carbimazole and I was over-medicated the whole time. My T3 and T4 are now within the normal range although judging by how I feel, I don’t think they’re optimal yet. I ended up seeing another psychiatrist earlier in my Graves’ Disease journey (different to the one who wanted to prescribe the SSRIs) because my endocrinologist was clueless and maintained that the psychological disturbances I was experiencing were totally unrelated to Graves’ Disease or to her management of the condition. Thankfully, the new psychiatrist disagreed with my endocrinologist. She said she actually orders thyroid function tests on her patients before prescribing antidepressants because thyroid hormone imbalances can totally mess up a person psychologically. I’m no longer seeing the clueless endocrinologist - good riddance to her gaslighting - and I’m so grateful for the support I received on this forum 🤗
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