I ended up in hospital for tests after a racing heartbeat that wouldn’t slow, agitation, heat intolerance and general feeling of not feeling right. Bloods showed raised levels, didn’t specify at that point. Have asthma so didn’t give me beta blockers. Started on 10mg of Cabrimazole once in the morning. It has been 3 weeks since I started the meds. Have returned to primary teaching and find it tiring talking. Is it normal to have gods and bad days while on medication? I am getting a scan with uptake in just over a week, followed by bloods a couple of days later, followed by phone call with blood results. Then, will see the Endo doctor the following week. Sleep is not great as have hot flushes. Long, rambling post, but this is all so new and obviously worried.
Newly diagnosed as Hyperthyroid: I ended up in... - Thyroid UK
Newly diagnosed as Hyperthyroid
Welcome to the forum
We recommend always getting copies of your blood test results after each test
Important to see exactly what has been tested
Autoimmune HYPERTHYROID is called Graves’ disease.
To confirm Graves’ disease they should have tested TSI or Trab antibodies
Also actual thyroid levels
TSH, Ft4 and Ft3
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3
Also good idea to have TPO and TG thyroid antibodies tested for autoimmune HYPOTHYROID, also called Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms, before becoming increasingly hypothyroid
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum with either Hashimoto’s or Graves’ disease. Very common with either to develop low vitamin levels. Improving low vitamin levels can significantly improve symptoms
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Thank you so much for your reply. Heart rate had improved, but today it is higher -perhaps over did it this week at work. My brother is hypo, but presented as hyper when first symptoms showed. Runs in the family. Also have added annoyance of menopause 🤨
we see a small, but steady stream of Hashimoto’s patients present with hyperthyroid type results and symptoms initially …..but it’s not true hyperthyroid ….and Carbimazole not correct treatment for Hashimoto’s
If medics see low TSH, and high Ft4 they assume its hyperthyroid …..but they should confirm by testing correct thyroid antibodies. TSI or Trab antibodies
Check what’s been tested already
Request they test TSI or Trab antibodies if not been done
Plus TPO and TG antibodies for Hashimoto’s…..and vitamin D, folate, ferritin and B12
Thank you again. I will keep this post and will use when on the phone for blood results and later with Endo doctor to remind myself what to ask.
How transient is transient? 🙂
Some people can have high levels several months….or levels can swing up and down very rapidly ….
Personally…..I lost a lot of weight and just felt “well” for about a year before seeing GP ….by then I had started to gain weight…and was (fortunate) GP tested thyroid levels and antibodies …..he thought I was hyper …..but by then I was hypo (hashimoto’s)
Brace yourself for another long rambling post 😉
Have your doctors said whether or not you have Graves disease which is an overactive thyroid with antibodies?
When I was first diagnosed back in November 2012. I hadn’t been feeling good for a long time- in fact I saw a GP in the September and she said she thought ‘I was needing my holiday’. I was absolutely seething about that because I knew I felt really ill, I came out of the consultat8n almost cry8ng with rage and said ti my husband ‘that woman thinks I’m a nutter!’
I got to the south of France in our camper - me chewing Dr Bach’s Rescue Remedy gummies all the way to try and stay calm. I was a nervous, jumpy wreck.
Eventually a few weeks after I got home I nearly killed a friend and I in my car one night and I went back t see the doctor because I felt so bad. Fortunately the doctor I saw then recognised the problem, she ordered blood tests and the next day I got in and found a message on my phone telling me she had left a prescription for carbimazole at reception, to start that, she had booked with me to see a consultant and would I book for more bloods in four weeks time.
Like you I have asthma and couldn’t be given steroids so it was carbimazole alone for me. I started on 20mcg carbimazole and had another blood test after 4 weeks which I did. Unfortunately nothing had changed very much so my consultant who I hadn’t seen at this point wrote to me and told me to get more carb from my GP and double the amount.
It took three months before I finally saw my consultant. By that time I had gone from being off the scale hyper to being severely hypo! A real roller coaster ride for my body as I was later told.
I was utterly exhausted most of that time and didn’t really feel good until I started on the block and replace treatment that my hospital uses to treat Graves’ disease. Once that got underway I felt a lot better although every time I needed an increase in levothyroxine I felt a bit hyper again. Eventually after I had been treated for a year I stopped everything - I went from taking 40 mcg carbimazole and 100 mcg levo a day to taking nothing at all.
It felt a bit odd really - I think it takes your body a while to get used to being ‘normal’ again. I suspect I had been ill for a long time before I finally cracked and got a decent GP who realised I wasn’t just a malingering middle aged woman. I was in my sixties back then.
I was told right from the start that should I relapse that ‘ it was radio active iodine for me - and I replied every time that no it wasn’t! ‘
I’m still in remission but in the period between then and now I have developed inflammatory arthritis and osteoporosis. Be aware - no one bothers to tell you that an overactive thyroid can lead to osteoporosis so keep an eye on your bones - eat things that are good for bone building, avoid things that are not and do lots of weight bearing exercises to help your bones. If you look on the Royal Osteoporosis Society website you’ll find out all you need to know.
I had retired from teaching but was invigilating for senior school exams and I had to stop for a while because I felt I was unreliable and didn’t want to drop out at the last minute - I felt really upset at having to do that but I just had no energy at all at that point. Thankfully I got back to work again for the summer exams and have been fine ever since. I’d say don’t try to work through it, if you reach a point where you feel you can’t do it - take time off.
So yes, it is normal to have good and bad days - I’d say ‘fairly ok days and absolutely awful days’ is more appropriate. I was also pretty emotional and dare I say it a bit - well a lot - irrational too but that was the Graves.
My first post here was to ask if I’d ever feel normal again - to be honest I thought I was losing my mind! - and yes, by the time my treatment was over and my thyroid was back to normal I did feel normal - well as normal as I’ll ever be - again.
Don’t push yourself too hard - you might not look it on the outside but you’re really quite ill. I lost so much weight that on the outside I looked amazing - inside I was a total mess.
Good luck with it all. You will get back to your old self even if you can’t see it right now.
Aw, thank you for that very comprehensive reply. In hindsight I think it has been working on me for a while - sore joints, hot flushes, particularly at night, slightly dry eyes at time, able to function well with less sleep, which of course are menopause and thyroid symptoms. Haven’t been told cause yet as am getting a scan and further bloods. Will then see the Endo doctor. Thought I was okay last week at school, but by end of Friday was so tired talking. Will see what happens next week and go from there. Start of a new term is always tiring, but today I feel rubbish. Heart rate increased today. Hope it will lower over the weekend. Just hate this. Want to know NOW what’s causing it 🤣 thank you again
Hi Minky70,Please be aware this is like a marathon: it will take quite some time to recover, to recalibrate and feel well again. I got hyper 10 years ago (FT4 > 100!) with all the symptoms. I was a total wreck. Carbimazole helped me recover very well, but it took a long time. After a year on medication I was in remission and now, 9 years later, I still am (I have Graves). However, it took my heart 3 years to stabilise again - and I was only 35 when diagnosed.
What I would like to tell you is to take it easy and be gentle with yourself. Your body is under great stress and working hard. Don't work too much, every activity is exhausting right now. Try to be patient and rest when necessary.
Take care!
Thank you for that. I am trying to teach my class calmly 🥴 easier said than done. Have also developed a cold which I can’t take cold remedies for - a pain when you have asthma. Things I took for granted - using decongestants, normal tea and coffee, sushi …. The list goes on. It’s lovely to hear from others who have gone through this. Thank you again for your reassuring words.
You mention sushi... I would like to add that I did not follow any special diet. I know several people here have benefitted from giving up gluten, but for me that was never an issue. I asked my endo about it and he said I could eat and drink anything I wanted (well, coffee and alcohol were a big no-no when my heart was not okay as they would trigger palpitations!). He only advised me to avoid stress. I love bread so I never contemplated eating gluten-free. So find out what works for you. And if the cause turns out to be Graves' disease, remember there are people like me out there, who have been in remission for many years! 
All the best!
Fruitandnutcase, I am so glad to see someone else using the word “unreliable” to describe themselves. Such is the honour of OUR attitude we find we cannot put others in a situation that requires that reliability. We know we are unreliable. Even if we have some good days, we just never know when it will switch. This really means employment and this affects our income, pension, QOL etc.
I almost mirrored your hyper journey - I went through almost the same as you, except I was 34 when mine started. The GP ordering bloods, results coming back off the scale, & being referred to an Endo in 6 weeks time That evening, the GP just happened to mention my results to a colleague at a local hospital- & the next thing I know is said GP on the phone telling me to collect a script ASAP!The Graves - & that GP who just shrugged when I went to her in a haunted / nervous state desperate for an answer as to why I woke up with butterflies in my tummy every day, racing heart, sweating, tremor & weight loss - caused me to virtually 'lose' 6 years of my & my familieis lives, due to very severe anxiety & panic attacks. When she did that I was desolate, thinking that no one could do anything for me.
I ended up having a subtotal thyroidectomy before I felt 'safe'. An utterly awful time for all of us.
I'm fine now, obviously hypo - I have been on 75mcg Levo for almost 30 years with no changes
- your story bought it all back!
Yours too. I remember I used to waken up with the feeling of a pulse in my stomach. It felt really strange. My husband could feel my racing heart just by putting his hand on my abdomen. Years before that I had seen a doctor thinking my thyroid was under active and I remember her saying she was surprised by the results because although I had hypo symptoms I was ‘borderline overactive’.
Unfortunately those were the days when I trusted my doctor and of course back then I wouldn’t have dreamed of asking to see a copy of my results let alone to have questioned them.
It was odd because I always felt I had some sort of autoimmune condition - I just never thought of it being Graves’ disease.
Glad you’re doing ok on your 75 mcg levo - sounds like you are pretty stable 😊
Important to see exactly what your FT4 & FT3 levels are as 10mg is a low starting dose.
With Graves levels can often rise 3x the normal range so a starting dose of 40mg usually split into 2 or 3 doses is what might be given.
So a lower dose might mean your FT4 & FT3 is not very high over range.
At diagnosis my FT4 was a little above range my FT3 higher nearing double. This is was initially treated with 10mg x 2 a day. I was retest 2 months later and levels were low side.
My levels had risen very slowly over years and when that happens symptoms can go unnoticed (you compensate & adjust) but when level fluctuate suddenly, which can happen with autoimmune conditions, I think symptoms can be much more severe & this is in keeping with what you describe.
Its now important to discover if & which autoimmune you have as 1 causes transient hyper and the other prolonged.
I had a thyroid scan with uptake to confirm strong suspicion of hyper functioning nodule. I’d had a previous ultrasound showing nodule (but ultrasound can’t confirm function) & I was negative for antibodies.
Was the purpose of uptake scan explained as usually blood tests & thyroid antibody tests are 1st stage of investigation.
I’ll describe my scan experience so you have a idea what you might expect.
Hospitals can complete the scan different - in my case I had small injection into my vein. (no worse than a blood test). I have terrible veins so it took a few attempts.
Then I had to wait 30 minutes. Some hospital give a drink and wait time different eg 3 hours, or return the subsequent day.
The scan I had was open but the overhead screen bit was pulled very close to my face.
I had stickers placed near my collar bone, this helps mark the area they are scanning.
What I remember most is how the table was too narrow for my arms so held them in front on me but they asked me to take them down so the scanner screen could come very close.
All straightforward with no issues. The radiation level in very low but you usually have to minimise close contact for 24 hours afterwards.
You should have appointment letter advising how the procedure will be done and you if you need to alter any medication you are taking.
My hospital said all women under 50 must sign a form confirming they are not pregnant..( I see in your profile you are older but I’ll mention it here in case any one else reading needs to know.). You may be asked to take off any jewellery off.
I took a big bottle of water with me they advise you to drink plenty after the scan.
Are your dry eyes a new issue? Any other issues with eye? Such as Sensitive to light, pain around eye, change in appearance of eyes? Discuss with doctor / endo if you were to have any eye issues.
Thyroid Eye Disease can occur with thyroid issues - most (but not all) cases being associated with hyper Graves. Serious complications are very rare but early treatment can relieve symptoms.
Doctors can be dismissive of mild eye issue but any concerns should be seen by ophthalmology TED specialist.
Thank you for your very informative reply. The doctor in hospital said one of the levels was slightly raised - said nothing further as I went in on same day I saw doctor and had anECG which showed obvious heart rate issues. They were doing basic checks and I think only tested thyroid levels as I told them there was a family history. They started me on carbimazole within a few days, I think probably because I can’t take beta blockers and needed to do something. So, I think scan is to rule out or in cause and when I go for bloods a couple of days later I’m going to as for them to check everything! Not sure if they will though. 🤷🏻♀️I’ll have a phone appointment after bloods where I suspect they will discuss dosage going forward. I now have a huge list of questions for the Endo doctor! Thank you again for your reply 😊 I have light sensitivity when driving at night and car headlights for a couple of years now. Dry eyes come and go but not a big issue.
Hello Minky and welcome to the forum ;
Just to add you can ease your eyes with drops, lotions, potions, and or sprays and gels just make sure which ever preparation you use it states that it is Preservative Free and that includes anything that maybe prescribed.
It's early days, rest up and just go one step at a time - the next step is getting a diagnosis and the medical proof on which your treatment plan is based.
This will include the antibody found over range and positive - detailed as either / or :
TPO :TgAB: TSI : or a TR ab antibody with details of reading and range,
It should also detail your blood test levels as diagnosis detailing your TSH, T3 and T4 readings and ranges.
Thank you. I will see how next week goes at work.
I have Sjogrens which is dry eyes and mouth and common with thyroid problems. I am hypo. Originally I felt dreadful and went to drs because of losing 2stone, he thought I was exaggerating the palpitations so sent me to hospital to prove I had nothing wrong . Long story short t4 was 94 so way too high sent me home withpropranolol and to wait for appt with endo. I had thyrotoxicosis twice so decision was made to remove thyroid. This was in 2018 and I’m still trying to get dosage right with t3. It takes a while and feeling better than I did. Hope you get it sorted soon.
Thank you. It seems it really is a finely tuned balancing act. Hope your dosage is sorted too. 🙂
What symptoms did you presented with thyrotoxicosis?
Weight loss, palpitations fever, dizzy fatigue, generally unwell.
So sorry to hear your diagnosis. Yes it’s a bit of a long slow process with good and bad days. Make sure colleagues and friends are on board with what you’re feeling, and allow yourself to rest if you can when needed. Learn as much as you can about the disease and strange symptoms - hyper and hypo which some get...hot flushes, sometimes short tempered, fatigue. At other. times when I was hyper it was like I could take on the world!! Be good to yourself, try not to get frustrated ... patience is the most important lesson. Best wishes.
Thank you. 🥰
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