Hello everyone, i was diagnosed with grave disease 1 month ago. Though my progress is doing good after taking 40, 30 and now 20mg carbimazole as my initial t3 @ 31 t4 @ 42 have dropped to t3 @ 6 t4 @11. TSH is still @ <0.01
The biggest problem i am facing at this moment is that i cannot sleep. I have been prescribed with 10mg Stillnox (Zolpidem) for sleeping aid for more than a month but i think it is getting less effective as my sleeping hours has dropped from 6 hrs to 4hrs.
Whenever i try to take a nap or sleeping at night without Stillnox i will toss around for 2 hrs and still cannot sleep. I have been prescribed with 120mg Propanalol for panic and anxiety but i have stopped for almost 2 weeks since i read on internet that it will makes you insomia but the sleeping condition never improved.
I would truly appreciate if anyone could advise me on this. Because of this my anxiety has creep in again... Would seeing a psychiatrist help at this moment?
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The symptoms that took me to the doctor were dry gritty eyes, exhaustion and insomnia :
I had a blood test, thinking I was anemic and had a diagnosis of Graves Disease within days.
i was put on Carbimazole, sorry, can't remember the dose, this eased my symptoms within around 2 weeks and I continued to work.
Insomnia is a known symptom of Graves :
If you can do without the beta blocker Propranolol good, as I read it's hard to come off notwithstanding the information you found.
Symptoms of Graves can effect every aspect of your body with both physical, mental, psychological, emotional and spiritual implications - but I wouldn't recommended further mediations from another medical specialist unless their knowledge of Graves supersedes everything I've read about this poorly understood and badly treated auto immune disease.
Do you have any blood test results from when first diagnosed that show that the relevant antibodies for a diagnosis of Graves Disease have been analysed and are positive and over range ?
These will look like a TSI ( worded as a thyroid stimulating ) antibody and or a TR ab ( worded as a thyroid receptor blocking ) antibody :
The AT drug, Carbimazole, is blocking your T3 and T4 from rising any further and now it appears since being on this drug your T3 and T4 are now back in range again with your T4 coning in under range : though I've second guessed the ranges - can you please confirm my guesses of T3 being 3.1-6.8 and T4 being 12-22 ?
If my guess is right, you are now heading into hypothyroidism which is equally disabling :
Hyperthyroidism and hypothyroidism are the extreme ends of the same T3 stick - too much T3 and you are with overactive symptoms whilst too low a level of T3 and you are with underactive symptoms - nobody wants to be at either end of this stick as both ends are equally disabling, and personally I think hypothyroidism more challenging than hyperthyroidism.
I think you may need a dose reduction in the Carbimazole - is your doctor monitoring you on behalf of an endocrinologist ?
If you go into Thyroid uk , who are the charity who support this amazing forum you can see a list of all hypothyroid and hyperthyroid symptoms it does get confusing as some symptoms cross over and you will also read bout hyperthyroidism and Graves so to get a better understanding of what you are dealing with.
Basically your immune system response has been triggered and attacked your thyroid causing your levels of T3 and T4 to exceed the range and it is said that Graves can be life threatening if not treated, so you are put on AT drugs to block your thyroid hormones rising any further and hopefully given time, your Graves antibody levels reduce, your immune system response calms down, and you feel the relief of symptoms.
Your thyroid is the victim in all this and not the cause -
The cause is your immune system attacking your thyroid :
The AT drug puts you into a holding pattern, a bit like being on automatic pilot, playing for time, waiting for your body and immune system response to calm down.
Graces is said to be stress and anxiety driven - ????
The most well rounded information I found was from Elaine Moore who has this disease, and who now has her own support Graves Foundation website and has researched in depth, the auto immune component of this disease for which current mainstream medical have no answers.
There are more holistic, alternative options to treating Graves though I only found all this out long after my diagnosis of Graves and treatment with RAI thyroid ablation back in 2005.
Hi, thank you so much on your reply and information. It is written on my thyroid report that the normal range for t3 @ 2.62 - 5.70 and t4 @ 9.0 - 19.0
I don't have the thyroid antibody report but was planning to do it on Friday hopefully.
Yes, my endocrinologist advised me to reduce Carbimazole dosage to 20mg and i have been doing my own thyroid profile to monitor my t3 and t4 so it would not free fall to hypothyroidism.
My biggest problem is the insomia as before being diagnosed on Grave Disease, i could sleep normally but now even with sleeping pills, my sleeping time is getting lesser. I am hoping on seeing a psychiatrist to get more opinion as i have the feeling i am going towards depression.
Anyone here has a similiar situation or been through same situation? I would like to listen more on it ~
Depression is well documented as a symptom of hypothyroidism.
Thanks for the ranges :
So it " looks like " you are coming into land - the pilot, the endo, will start taking back the controls from George, and hopefully you have a soft landing with not too many bumps.
hi, thank you so much on your sharing. I have been diagnosed with Grave Disease on Apr 2021 and my symptoms are since Feb 2021
I have been battling with insomia since then, have you been prescribed with any sleeping pills?
I managed to stop the Propanalol for almost 2 weeks as me myself think it is causing alot side effect to me. Doctor told me to wean it off but i just stop it, so far so good except for the sleeping part...
Yeah, me too, the lack of sleep are starting to make me slip towards depression. Therefore i am taking the necessary steps.
But please do not take this as a discouragement on your conditions rather we are sharing so that we will know somehow sooner or later we can get out of this mess ~
I am currently taking Stillnox (Zolpidem) 10mg but for me it is getting ineffective. This sleeping pill is hypnotic in a sense when I take it, I will have the feeling like being drunk and sleep. But it won't last long in my opinion so the max i slept before is 6 hours. If i slept lesser, it will affects my emotions until it totally wear off in the evening.
Not sure what have triggered my grave disease, maybe this pandemic plus i lost my job that contribute to the stress... Hopefully everything will back to normal soon ~
Stress and anxiety can partly account for the insomnia.
It must be terribly distressing having lost your job, along with all the other pandemic stresses and any other stressors you might have.
Seeing a psychiatrist might help. Just be sure to see someone u think is competent and trustworthy, because you don't want to be seeing someone who only wants to medicate you, then you might end up with a whole different set of problems when you become addicted to antidepressants etc.
Insomnia is problematic for me on and off. I find if I relax and rest more and stress less, I usually manage to eventually get out of the insomnia cycle. Ps, cutting out caffeine definitely helps.
Hello I have graves disease and before I was diagnosed and in the early stages of treatment I suffered terrible insomnia.My T4 levels at this stage were around 57 around 3x higher than they should be.I was on proprananol in the early stages but was told to wean myself off it as the carbimazole kicked in.My main symptoms were a racing mind, restlessness and shuffling about like I couldn't get comfy.The sheets weren't right or my pyjamas were bunching up plus I was red hot.Sometimes I even layed on my hands to stop the shuffling. If I did get to sleep I'd wake up and not know what to do with myself,having to get up and sit on the side of the bed for a while.Most of this has resolved now my levels are under control but I still have days when I'm more anxious or fidgety than others.I think it's just part and parcel of Graves.I didn't take sleeping tablets or anything.I do take 20mg amitriptyline at night for migraine prevention which can cause drowsiness but even that wasn't helping at the time.Maybe it will settle down for you when your levels have been stable a bit longer.Hopefully my reply has helped a little.Best wishes to you.PS I was diagnosed with graves in August 2018 and started carbimazole the end of September 2018.My levels took a good couple of months to come down to a decent level .I was on the titration method firstly but yo-yoed up and down too much I am now on my second try of block and replace.
You might like to read around Graves on Elaine Moore's website :
Until your immune system response to whatever " triggered " your Graves calms down, you too are in this sort of holding pattern, referred to above.
Do you get your antibodies tested, as if these are still high and raging, there is little point trying for remission.
Recent posts on here are suggesting that this first phase of this disease can be around 4 plus years so the 15-18 month " window " allocated for O/P treatment for Graves hardly sufficient.
It takes as long as it takes, and I just hope you don't feel pressurised into more drastic, invasive treatments that may just compound your health issues further.
Hello, thank you for your reply.I did mention testing my antibodies to my end o before coming off block and replace but he said it didn't matter.I now know otherwise.I'll make sure I'm firmer if he suggests it again. I may have to resort to private testing if it's not too expensive.I do feel stuck in an anxiety cycle.I believe my graves was triggered when my son was diagnosed with hodgkins lymphoma in 2014 and then the year of treatment, waiting for 5 years clear , his subsequent anxiety and depression and him being diagnosed with ulcerative colitis,being asked to withdraw from university due to his ill health and subsequent appeal which is still on going due to the last year of covid( he's had to shield for the whole time)I don't see remission for me until he's back at university (God willing)and the whole mess is sorted out.I can't cope with stress at all myself now and so it's just a vicious circle isn't it. I've understood so much more being on this forum , it really is fantastic.Best wishes to you.
Yes, my Graves was triggered by being verbally abused and physically threatened by a man i employed as my assistant manger .
I was diagnosed Graves about 4 months later in 2003 - sadly there was little information around and being dyslexic my thoughts weren't about picking up a medical book to read and understand and i simply trusted what i was told,
I've only put myself back together again, like Humpty Dumpty, since finding Elaine Moore, her website and Thyroid uk .
I found no help nor understanding after RAI treatment and considered a conundrum by the NHS - and then housebound, with no resolve to my continued ill health read of all my symptoms in Elaine's first book as symptoms associated with Graves after RAI treatment.
So sorry about your situation, and yes, we need to support each other as it helps in our understanding of where we are in all this.
Yes, i do understand the feeling as of now i am still feeling the anxiety and restlessness. Especially when i woke up today at 3.30am. With the unsettling quietness as i do not want to wake my wife, the feeling of being more worst because i been sleeping for 4 hours only for four straight days.
Best wishes to both of us on fighting this disease.
Yes everything is worse in the quiet of the night.Something you may not know is that while carbimazole can slow down the production of thyroid hormone it can do nothing about the excess that is already in your body.This will gradually reduce in time.This is why it can take a while to feel the effects of the carbimazole.One thing I've learned is that with Graves you have to be patient unfortunately and nothing happens overnight.Hope this helps.
Hi. I know only a little about sleeping tablets. Generally speaking they help u for a few weeks and then your body gets use to them and they don’t work so well that’s why You normally get a short prescription of them. I have suffered with insomnia for the last 4-5 months due to a concussion. What they recommended was a bath or shower 90 minutes before bed. Reading or meditation 60 minutes before bed. No tv. No devices. Yes a psychologist can help. You will work on issues that are unresolved and that can leave u not sleeping as well. I am no expert. Take what u think is relevant and ignore the rest. Also, keep a sleep diary. No napping in the day. Always going to bed at the same time. Rise at the same time. If u can’t sleep within 30 minutes get up and do housework until u get tired. Sorry it’s a rough ride for u. Thinking of u NIKEGIRL
Just to update, i been speaking with my endocrinologist and been recommended to change my antithyroid and sleeping medication. We will do an online consultation before being prescribe with any medications.
Today i only slept 3 hours and been tossing around for 3 hours. I know it is better to wake up than tossing but i really don't have the mood for anything else. Beside my wife is sleeping so i would not want to wake her up ~
If i do change medications, i will post here if it is working or not, hopefully it will help everyone here struggling with this disease ~
I struggled with insomnia earlier in my Graves’ Disease journey. I was prescribed 40mg Propranolol 3 times daily when I was first diagnosed and it didn’t make the insomnia worse. However, I did have other side effects like nightmares, muscle cramps and it made the suicidal thoughts I was already having worse.
That said, it was very effective at relieving the tremors, heart palpitations, nervousness and anxiety. After about two weeks was when it started to make the suicidal thoughts worse and that’s when I asked my doctor to taper me off because by that time, it had done its job anyway.
I had no issues coming off Propranolol because it was done gradually. That’s the biggest thing with Propranolol - you have to be tapered off it and it should never be stopped abruptly. If it’s done gradually, you’re far less likely to have any issues.
Further down the line, I used a supplement called GABA and that really helped with the anxiety - I still use it from time to time now. For sleep issues, CBD oil has been a game changer but honestly, as you’re so newly diagnosed, I think you could give the carbimazole time. The anxiety and insomnia will likely improve as your thyroid function improves.
As far as seeing a psychiatrist, I saw one because Graves’ had affected my mental health so badly. I was constantly angry, irritable, had suicidal thoughts and would cry all the time - I was miserable. I feared I would remain in that state forever. However, although seeing a psychiatrist was helpful because it unearthed emotional issues that needed to be resolved for me to be truly healthy and balanced (especially in light of the connection between Graves’ Disease and stress), looking back, it wasn’t essential. In fact, taking up gardening was probably more therapeutic for me than anything else.
The psychiatrist did diagnose me with clinical depression but I’m fine now without taking any antidepressants. Although I’d had periods when I’d felt depressed prior to being diagnosed with Graves’ Disease, I believe that Graves’ Disease was a major contributor to the clinical depression diagnosis and that without Graves’, I’d never have hit such a low.
So would I recommend seeing a psychiatrist? I believe in managing Graves’ Disease on multiple fronts so if you feel you need see one, you could give it a try. However, it’s important to work with a psychiatrist who understands deeply that Graves’ Disease can mimic mental illness in people who don’t have any true psychological issues. Otherwise, a less experienced psychiatrist may try to pressure you into taking antidepressants that you may not need.
hello, thank you so much on your sharing and information. You are correct, Propanalol should not be abruptly stopped. I do apologize as this might affect others decision-making in reading my post. I stop it after my endocrinologist advised me to start wean it off and also i did make sure that my heart rate stabilised with smart watch before making that decision.
That said Propanalol did help me alot on stabilizing heart rate, but after 2 weeks when my condition gets better, i felt it is lowering my heart rate too much, muscle weakness especially on the thigh, feeling that my chest tightening, nightmares (it is like watching 2 - 3 horror movies at night) and insomia (which i was wrong anyway). Therefore i just decided to stop it as soon as possible.
I will definitely be asking more on the GABA supplement with my endocrinologist but i don't think the CBD oil would be legal in my country since it is made of cannabis extract ? Please correct me if i am mistaken.
One of the reason on wanting to see a psychiatrist is that i want an assessment if my insomia is due to phycological problem rather than physical. Do they do such assessment on patients? I never see a psychiatrist before therefore any information on them would be great. Also i will definitely take note on the antidepressants medicine.
Yes, I forgot to mention that - Propranolol was very effective at lowering my heart rate too. I feel you on the horror movie nightmares - they were terrible. I actually got prescribed GABA from a functional medicine doctor that I worked with alongside seeing the endocrinologist. If your endocrinologist is open minded about supplements and takes a more integrative approach then they may be familiar with GABA. Otherwise, it wouldn’t surprise me if they’re dismissive but it worked for me and it didn’t react negatively with Carbimazole.
So there are actually two types of Cannabis plants: Hemp and marijuana. Hemp contains far lower amounts of THC than marijuana - THC is what causes the high. In many countries, even where marijuana is illegal, hemp is legal. So CBD oil that’s derived from Hemp may well be legal in your country but you’ll have to double-check. Perhaps, an easy way to find out is if you can buy it over the counter in pharmacies in your country. If it is legal in your country, then look out for CBD oil that is derived from Hemp and contains no more than 0.03% THC.
The only other thing I would say is that because THC accumulates in fat cells, I’ve heard of people who claim they were using CBD oil testing positive for THC during drug tests and then getting fired from their jobs. So even if it’s legal in your country, maybe check with your job first and explain to them that it’s for medicinal purposes. The good thing with CBD oil, at least in my experience, is that once it starts to work for you, you wouldn’t necessarily need to use it on an ongoing basis. I used it daily for two weeks and now I only use it once or twice a week if at all.
Yeah, underlying psychological issues like clinical depression can also cause insomnia. And yes, any good psychiatrist will give you a very comprehensive evaluation to complete before making a diagnosis. However, it’s been my experience that the very nature of their training means that many psychiatrists are quick to prescribe antidepressants and other drugs. That said, they can’t force you to take any medication you don’t want and you could always insist on Cognitive Behavioral Therapy (CBT). I think CBT was quite helpful for me.
The one thing I would ask you though is whether you had insomnia before Graves’ Disease? If the insomnia started about the same time then it could well be a symptom of Graves’ Disease that will resolve as you get better.
hi, i apologize on the late reply and thank you so much on your information ~
Previously i am a late sleeper but i have no problem in sleeping without pills. Even when i was diagnosed and admitted to hospital i still can sleep normally. But once i were discharged, i have a few nights of nighmares and then i start taking sleeping pills and started to have problem on the sleeping...
Truly hope that this is all due just due to Grave Disease
Like you mentioned earlier, Propranolol can cause sleep issues in some people and maybe that could have triggered the insomnia you’re experiencing . The leaflet from the brand I used to take says that “difficulty in sleeping” is a minor side effect that could arise from taking Propranolol.
I remember that even after I stopped taking Propranolol, it took some time for some of the side effects to go away completely. That could also be the case with the insomnia you’re experiencing. I think NIKEGIRL has offered some really good tips that may be helpful.
Because you’re so newly diagnosed, I’d say to give it time. In the meantime, you could try some of the milder remedies/ recommendations that have been suggested on this platform - Chamomile tea is another one that works for some people.
Ultimately, if you feel you need to see a psychiatrist, talking to someone could help as long as you don’t rush into antidepressants unless they’re absolutely necessary. Another note on antidepressants is that SSRIs can cause insomnia as well.
Sometimes, with Graves’, the waiting game is the hardest part but eventually, once you get the right dose of Carbimazole, you do start to get better. People on this platform told me that when I was newly diagnosed and some days, it was hard to believe them. However, I did start to feel better eventually.
Keep us posted on how things go with changing your medication. Please feel free to reach out anytime. Sending you lots of love and light because dealing with Graves’ Disease is one heck of journey.
"However, it’s important to work with a psychiatrist who understands deeply that Graves’ Disease can mimic mental illness in people who don’t have any true psychological issues. Otherwise, a less experienced psychiatrist may try to pressure you into taking antidepressants that you may not need."
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