I’m feeling all over the place, I had my test results back today that I have Graves, I just feel so upset. I had an endo appointment a couple of weeks ago & he put me on 10mg carbimazole, I took it for a week, after about 5 days I felt awful, sweats, chills, i basically didn’t sleep for 3 nights. My tongue was so sore & I had a really dry mouth. I called the GP they said stop taking & go in for blood tests, the blood tests come back ok. Today the GP rang the on call endo & they said to try my on Propyithiouracil instead, I am absolutely petrified of taking these after reading the side effects. I’ve now got myself in a state about TED, my eyes have been feeling gritty for a few months, I’ve had puffy eyes for years but they are a lot worse now, now I have been diagnosed with Graves does anyone one know if they will the check for TED?
I hoping once I have got my head around all of this I will feel more positive about everything.
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Mah43
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Sorry to hear you're so upset. I gather you weren't expecting that diagnosis, is that correct?
I'm not an expert on hyperthyroidism, I am hypo, thyroid killed off by Autoimmune Thyroiditis, but, first things first: do you have a copy of the results that came back today? If not, ask the doctor's receptionist for a print-out. It is your legal right to have one, and you need to know exactly what was tested and exactly what the results were. I know you won't understand them if this is your first time, but post the results and ranges on here and people will explain them to you. It is very important that you keep your own records including all your blood test results.
Thank you to be honest I don’t know what I was expecting, I think I was hoping this was all a blip & everything would come back normal. I have had symptoms on & off for such a long time, it was only when I had my bloods back in Oct that they showed up a change. I will request the blood results & post them.
If you tell your doctor about your eye issues they should refer you to an eye specialist (ophthalmologist). The thyroid issue is treated by endocrinologist & the eye issue by a separate specialist.
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. Bear in mind selenium rich food can take you over the maximum requirement.
*Preservative* free eye drops & wipes. Rotating different brands seem to help. You could try, liquid versions for daytime & gel versions at nighttime.
I’ve recently been using ocufresh carbomer lubricating eye gel it a light gel so best of both worlds.
For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks). Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones. Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow, & this protects eye and helps retains the water.
If swollen, inflamed & more painful, I switch to cold compresses. Use which ever gives most comfort.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched.
Serious complications with vision or changes to eye appearance are very, very rare. Don’t Google and panic over worst case scenarios, they are always the most severe examples.
It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. I put in an album on phone & “hide behind a cute kitty picture” (buddy195 tip 👍)
Many report TED triggered or worsened when thyroid levels are low / high or fluctuating. So getting stable control of levels a priority.
PTU is a much older drug & tends to be used as second choice as the dose level is greater. EG 10mg carbimazole will be changed to 100mg PTU & it may mean you’ll need to take more pills.
Very important to get a hold of blood tests & checking your own progress & that all the right tests have been carried out. We can explain further once you have them.
Thank you I will call the doctors & ask for the results. I did tell them about my eyes being gritty & sore but they never mentioned being referred, I will call them & ask for a referral too. I had dermal fillers around my eyes to disguise the bags a couple of years ago, (they did a great job at doing that) I had the fillers dissolved two weeks ago, what I am left with has made me see how bad my eyes look. Thank you for the advice on the eye gel I will have a look & give it a try. Hopefully once my levels get more normal I will start to feel like myself again.
I think it’s just all a bit overwhelming & a lot to take in. You are definitely right about not googling, I think that I have seen & read about the most severe cases & have let my mind work overtime.
Hi Mah,I'm sorry this has been such a terrible experience and especially the carbimazole causing such side effects.
Lots of people take Propyithiouracil without issues though. It's even what they recommend in pregnancy.
I would highly recommend looking at Elaine Moore's Graves and hyperthyroidism website. It's very informative and research backed.
You'll find articles about all sorts including Propyithiouracil and TED. One this to note is that while diagnosed TED can be scary it doesn't go like that for everyone and research seems to indicate that something like 90% of graves patients will have some eye symptoms with most of them going nowhere near full TED.
When I have Graves flares my eyes get sore n gritty. A good eye drop and eye exercises can help a lot.
I hope you slept through though your brain is probably running at 100 mph :
I was diagnosed Graves back in 2004 after going to the doctor with insomnia - though with hindsight and distance realise I was undiagnosed hypothyroid since a child.
Graves is said to be life threatening if not medicated and the medication is the Anti Thyroid drug - so please switch to Propylthiouracil - PTU - it is an ' older ' drug but just as effective though your dose will probably be increased.
Please also use Preservative Free eye drops and ointments for your eyes, even those prescribed by the NHS.
I understand the TED clinics are mostly attached to the large teaching hospitals - and where you may well find both - a specialist eye consultant and endocrinologist with an interest in Graves - working together to advise on your best treatment option. tedct.org.uk
Graves is an auto immune disease for which there is no cure and all the AT drug does is semi block your new daily thyroid hormone production and slowly your over range T3 and T4 results will fall back down into the ranges with, hopefully, your symptoms relieved.
All the AT drug does is ' buy you time ' while we wait for your immune system response to calm down and your thyroid recover and reset itself. and rather like an aeroplane being put into a holding position while waiting for a landing slot.
There is likely a genetic predisposition for Graves with there possibly being a relative a generation away from you with a thyroid health condition - and can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one, or may seem to appear totally 'out of the blue'.
Quite why your immune system has turned and started attacking your body rather than defending it is of course the 64 million $ question and you may or may not find answers within yourself - though common triggers do appear to be stress and anxiety.
Please ask for a copy of your blood tests results and ranges - and arrange for online access to your medical records held at the surgery as then it's easier to track, in your own time, what is going on - rather than keep asking the overwork staff for copies etc.
Ideally we need to see a TSH, T3 and T4 blood test result and range and a further test for the antibodies found positive and over range in your blood at diagnosis - probably looking like - TPO : TgAB : TRab : TSI ; or maybe written as a TSH - Receptor Blocking or Stimulating antibody and number.
I found the Elaine Moore website and her very first book most informative though have to confess I didn't start my research into this poorly understood and badly treated AI disease until around 2015 when very unwell and post RAI thyroid ablation for Graves in 2005 and hypothyroid.
Sorry to hear you are Hyperthyroid and have problems with your eyes, but welcome here. I was in the same boat as you about 20 years ago. If I remember correctly, any decent optician should be able to diagnose TED so you could just go there and get an eye test and they should be able to refer you to a TED specialist if req
Hi Mah43 I just wanted to say hi. I can’t comment on your eye issues other than suggest you ask for a referral to a TED eye specialist, but just wanted to say I understand how you must be feeling. I had Graves after my first child and couldn’t tolerate carbimazole 30 years ago and had surgery in the end. It was a scary and worrying time but i’ve learnt that for me, doing my own research and keeping copies of all my tests, has been invaluable. It will get better, but doesn’t feel that way at the time.
I had Graves’ disease in 2012. I’ve been in remission since then. To be honest it was a massive relief to be told that I actually had something wrong because I had felt unwell for a very long time and was constantly being told I was ‘fine’. I was even told three months before diagnosis that I was ‘needing my holiday’.
I think basically you feel pretty awful in lots of ways with Graves, I was also over stressed and pretty grouchy and volatile. Looking back I’d say I was a bit of a drama queen but I think that was because I was ill. Two months after I was diagnosed my husband suggested we organise a Christmas party for our neighbours because the person who always did it was busy. I’m almost ashamed to admit it but I went totally berserk about how little he understood about how ill I was feeling! To say I totally lost it would be an understatement. It wasn’t me though, it was the Graves 😉
You are actually really quite ill with Graves although I looked better than ever because I had lost masses of weight. I found that part of the problem, some people thought there was nothing wrong with me because I looked ok.
I was very lucky that I had no real problems with carbimazole- only problem I had with carb was at the beginning when I got the odd sore throat/ swollen glands - first time I had it I panicked and had blood tests but they were ok.
Next time I saw a doctor and we decided on a ‘wait and see’ response which was fine by me and everything was fine.
I was being treated with block and replace which meant taking carb for three months then when I finally saw my endo, levothyroxine was added in gradually.
My treatment took a year - exactky. Exactly how long the first endo I saw said it would take. It wasn’t until I was well established on the block and replace routine that my body settled down and I really felt better, it knew whenever I was needing an increase in levo. I was always being told that should I relapse I could have radioactive iodine treatment - I always told them that no way was I having that so don’t be bullied or pushed into anything like that.
I also had eye issues, my eye muscles were pretty weak and I used to get double vision - mainly when I was reading or watching TV - when the credits rolled I would see two images one above the other, also, if I read for too long when I looked up I couldn’t see until my eyes got used to not reading which was really annoying because I read a lot.
I had the advantage though (or maybe it wasn’t) in that my husband was an optometrist and he kept telling me I didn’t have TED - I also had an unlimited supply of preservative free eye drops, eye bags and other goodies plus advice on what to do with my poor eyes - but Id say I didn’t get much sympathy.
What I did do later on was to go totally gluten free, I used to do home fingerprick blood tests and I noticed that my thyroid antibodies started to fall, once I saw that I kept going with being gluten free and the antibodies carried on falling. Some people say they would have fallen anyway but I think being GF helped.
I didn’t get tested to see if I was coeliac before going GF though so if you want to know do that first. Being GF also improved my IBS so there is no way I would go back to eating gluten. Basically I eat lots of good quality food, fish,chicken, I don’t eat any junk food or drink Diet Coke etc. fortunately McDonald's don’t do any gluten free food - or not much otherwise I would have had a dilemma as I used to enjoy a McDonalds every now and again.
I found that I needed a lot of rest - I was in my mid sixties - much older than you when I developed Graves and I was lucky that I was semi retired and my family had left home but I found the tiredness really challenging.
I found that I became really selfish and only did things I wanted to do. I didn’t do things I felt I *ought* to be doing. I really resented that Graves had robbed me of some of the things I enjoyed doing.
I used to do a lot of long distance coastal walks and I just didn’t have the energy. (They were followed by a McDonalds on the way home) I went to a gym at that time too but I went to a GP referral class and the people were lovely so I carried on going but turned everything right down, I did Pilates too but my teacher is a physiotherapist and she was able to adapt everything to suit me, again it was a nice group of people and being able to do the things I liked kept me feeling human.
You will get back to normal. My first question on here was ‘Will I ever feel normal again?’ And yes I do, or as normal as I’ll ever be.
Someone said take photographs of your eyes. I kept a daily diary in a notebook of how I felt, just a line or two but it was good because I could see how I was improving and I could relate it to the increases I was having in levothyroxine, it also meant when I saw my endo and they asked how I was I could tell them rather than just saying ‘fine’. I used to jot down any questions I had and I also kept notes on any interesting points I came across while reading about Graves - in my case it was lots of examples of people who continued taking carbimazole rather than having their thyroid obliterated. I also thought that when you produce a notebook like that it makes your doctors take note!
So good luck, keep looking on here and read as much as you can about your condition, ask questions on here and of your doctors, be an active partner in your treatment don’t just let it be done to you.
Thank you for so much information I’m just all over the place at the minute. I’m relieved I finally know what it is that’s wrong with me, I have at points wandered if I was imagining feeling like this. I’ve had so many things that never really made sense, I thought it might be early menopause, I had a coil for many years so put a lot down to that too. I’ve had I terrible insomnia, sweats, diarrhoea, fast heartbeat, rashes , knee & hip pain, my moods have been terrible & I’m emotional a lot (I’m not even an emotional person really). I’ve not had these symptoms all of the time they have come & gone, sometimes I feel awful other times I feel pretty good, the only thing that has really been a constant is a fast heartbeat, a lot of the time all of this was put down to stress. My weight is the lowest it’s ever been as an adult, I’ve always been on the small side so I really couldn’t afford to lose the weight.
I know I need to try and pull myself together, I think if I can get an eye referral that will help with my mental health as that is my main worry at the moment.
I had started to think I was mentally ill I felt so awful and definitely not myself. There’s something about being hyper that totally alters your moods. My pounding heart used to wake me up at night, I was so tired and yet I could barely sleep. I was definitely not myself - but I got back to normal and I’m sure you will too.
Fingers crossed that you get your eyes sorted out quickly so that you have one thing less to worry about , I’m not sure it’s a case of ‘pulling yourself together’ - you are how you are because you are ill once things kick in you’ll feel a lot better ((( big hugs)))
Sorry to hear that you got all those side effects from taking carbimazole, am on carbimazole 30mg/day and the only side effects I got is itching but it's working well generally. When I first started it I had dry mouth and sweats but only lasted for about a week but the itching is still there and I take something along with carbimazole to help with the itching. Am sure your doctor will recommend something else that will work for you, good luck.
I have called the doctor this morning & starting the Carbimazole again today, I think I just need to try & see if I can get used to it, they stopped me taking it when I had the sweats & dry mouth, I think as the bloods was ok my best option is to try this again, it reassures me that you had similar symptoms but are now ok on it. I just want to feel normal again.
I was diagnosed with Graves at 35, my FT4 was >100 and I was experiencing a complete meltdown, mentally and physically (sweating, trembling, diarrhea, super high heart rate, severe muscle pains, sobbing, hallucinations, I couldn't eat or walk or talk anymore). It was really hard. But I responded well to the carbimazole (I was itching like crazy at the start and my hair was falling out, but that stopped after 10 days or so) and after exactly one year the treatment was stopped and I've been in remission ever since That was almost 11 years ago! So there is hope.
I'm writing this to tell you to take it easy! You're very ill at the moment and you need to be gentle with yourself. Rest as much as you can, your body has been in overdrive for quite some time and it's exhausted. Don't work, don't do household chores, rest, read, watch tv, sleep... take a bath... you need to recover. Be aware it will take some time. It took me several months before I could function properly again.
Things will get better, just be patient and don't be too hard on yourself! Explain to people you're ill and need some help with things. Don't drink alcohol or coffee, those will push up your heart rate. Take some selenium, vitamin B12 and vitamin D.
Thank you for this it really gives me hope. I’m back on the Carbimazole, today is my third day back on it, I’m just going to try & push through the 10 days & hope the sweats & sleepless nights settle.
I pretty much have all of the symptoms you described having, I just feel totally drained. Yesterday I had results back from the fit test my GP requested to be done, she said it was just a precaution as my diarrhoea has been so bad & the lack of appetite & weight loss, sadly it came back positive so they are referring me for a colonoscopy, I’m so scared & worried about everything it’s taking a real toll on my mental health.
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