New here, just looking for advice about how long in general it takes to get an appointment for a thyroid scan? GP did urgent referral yesterday.
I’m sure it’s different depending on where you are just wondering if anyone has gone through similar and can give advice. GP has said he won’t prescribe anything until the results of the scan come back. Had bloods today, am hoping I can get some beta blockers for the symptoms once they come back (7 days) as I’m barely functioning at the moment.
No one in my family has ever had thyroid problems so I’ve got no one to talk to about this. I’ve googled lots but can’t seem to find a timeline for diagnosis. It’s come on over Christmas but symptoms are really awful, can barely walk up the stairs as heart rate so high, got kids and a job, can’t sleep, lost about 5kgs in the last three weeks (was slim already).
Thanks for any replies.
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RufusB
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A few years ago I had a thyroid scan referral and it took 2 months.
Last year I was referred for another neck scan, initial request was declined I had to attend an additional consult so nearer 5 months in the end.
There used to be a 16 week aim, but every hospital is different and wait list are especially long currently.
Have you already had a blood test showing hyperthyroid levels. If so you should get a hold of the results and see what they are. A printed copy with ranges or see if practice offers access to digital record.
Having overactive thyroid wouldn’t always require a scan but you would need to see a endocrinologist specialist.
Your GP can liaise with hospital specialist and obtain guidance on what level of medication to start. Referrals can take months and if your levels are high you shouldn’t be left untreated.
The blood test results guides what level of treatment requirement. A scan looks at health and size of thyroid. An ultrasound scan can’t determine the thyroid function. There are other specialist scan which do measure function called an uptake scan but even those aren’t relevant to treating high (or low) levels.
First step obtain actual result see what has & hasn’t been tested.
GP can start treatment as soon as they have blood test results
Please add most recent thyroid and vitamin results and ranges when you get them
Essential to test thyroid antibodies
There are different antibodies for different autoimmune thyroid disease
Autoimmune HYPOTHYROID also called Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid. Testing TPO and TG thyroid antibodies
Autoimmune HYPERTHYROID also called Graves’ disease is genuine hyperthyroid and you need TSI or Trab antibodies tested
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common with both Hashimoto’s and Graves’ disease
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you, will post blood results when they come back. Nurse thought 3-4 days so hopefully won’t be long.
Been for an ECG this afternoon which was normal apart from fast heart rate. GP said to go straight to A&E if I get any chest pains or palpitations. Said I have palpitations all the time (obvious pounding heart beat) but he said he meant fluttering?
He was talking about me going for a chest X-ray and said the scan is to diagnose cause as thyroid is quite swollen, more so on one side than the other.
Got pins and needles in my face now which I’ve had with migraine in the past but feels different.
You need to find out the cause of being hyperthyroid, but at the very least they may offer you beta blockers which will help with the heart-related symptoms.
Other options will depend on your thyroid levels and the cause of the elevated thyroid levels. If they are very elevated, you may be offered ant-thyroid medication (usually carbimazole) straightaway.
Do you know what tests they did ? Ideally, they will have tested thyroid levels (TSH, FT3 and FT4) and the antibodies indicative of Graves’ disease (TRAb or TSI), but in many health trusts, FT3 and TRAb/TSI can only be ordered by an endocrinologist, so you may need to wait for referral (hyperthyroid conditions are normally referred to a specialist).
Graves’ disease is an autoimmune condition, which is the most common cause of being hyperthyroid. They often test another antibody, TPO, alongside TRAb/TSI . These are a more general indicator of autoimmune disease - if TRAb are negative and TSO positive, you may have another autoimmune condition called Hashimoto’s disease. This is primarily a hypOthyroid condition, which has hyperthyroid phases. This will usually resolve itself, although beta blockers may help with symptoms
If TRAb and TSO are both negative, you may be offered a thyroid scan. You may have a nodule which requires treatment, again this will depend on the cause and impact , and could range from simply monitoring the situation to anti thyroid treatment to surgery or radioactive iodine treatment.
Thank you that's really helpful. Not sure what blood tests were done, GP did say he was referring me straight to endocrinology as well as an urgent scan. Hopefully bloods will be back next week and I can go from there.
Have a scan date, 16th Jan , only saw GP on 5th so pretty quick, less than 2 weeks.
Hi RufusB I’m sorry you’ve had this and are feeling unwell.
I had over range bloods and symptoms of ‘hyperactive’ thyroid- not true hyper as I’m underactive, but bloods unusually over range and had the full range of symptoms etc
Anyway, that started in the beginning of November 2021 spoke to GP about symptoms and blood results so she referred for scan and urgent Endo.
I was scanned 22nd Dec to rule out cancer in thyroid. (It confirmed chronic thyroiditis and I have Hashimoto’s- an autoimmune thyroiditis so this is a flair, hence high levels. I was not necessarily over medicated but reduced dose anyway as I felt so bad)
Just got my Endo appt for start of Feb which under the current circumstances I think is good. I’m frustrated as very sick with it all and would like help NOW as I’m exhausted with it, but either way it’s 4 weeks to wait and I’ve battled through 9 so far. I’d hoped ‘urgent’ would be January, as did my GP, but looking at the news, I had to have a word with myself as many people out there with critical illnesses not getting seen.
My guess is your scan could be quick as mine was considering a lump/ swelling.
Your GP will probably give you beta blockers. I was prescribed and used as needed for the bad episodes. Struggled to take all the time but they did calm the system a lot.
I’ll keep my fingers crossed for you it comes quickly 🤞🦋
Thank you, hope you get some help soon with your symptoms, glad to hear cancer was ruled out at least. I've never felt so ill in my life as I have with this. Hopefully my scan will be quick as well. I'm also hoping to get some propranolol when bloods come back as I've had it before for migraine and only stopped taking it as my heart rate went too low. I'm thinking it would help now as my heart rate is so high, about 115 resting, 185 walking, but up and down constantly. Fingers crossed we both got some help and start to improve soon.
Hi RufusB Thank you I’m hoping same for you. 🙏 I was relieved re no cancer and was very grateful for that.
I fully sympathize as I have never felt so poorly for a sustained period. And if you have children at home and the worry re work makes things much harder. (I’ve been signed off by my GP now so I’m going to just focus on getting better and have to stop stressing about work as it wasn’t helping).
As you say, the bloods don’t take long on NHS via GP so beta blockers will be soon.
Be interested to see your bloods posted Rufus when you get them.
‘I've never felt so ill in my life as I have with this’ is how many of us who have had very overactive thyroids have felt (eg with Graves’ disease, FT3 and FT4 may be more than double the reference range). If your thyroid levels are this high, you may well be prescribed antithyroids. Under these circumstances, you are likely to have a lot of thyroid hormone stored in your body. Antithyroids inhibit production of new thyroid hormone, but they can’t do anything about existing thyroid levels, so those need to work through the system which can take as long as eight weeks. During this period, propranolol should help. The good news is, although it takes time, and you may even feel a bit worse in the short time, within a couple of months you should feel a lot better.
Got an appointment for the scan, Sunday 16th, only saw GP on the 5th so that’s pretty quick! Still waiting for bloods to come back but only did them on the 6th.
hello there, I have graves disease (diagnosed 2018).I went to my GP in June of 2018 suffering some of the same symptoms as you, sweating, fast heart rate, internal shaking, couldn't sleep, muscle weakness, lost weight but ravenously hungry, mind racing all the time.I left going for quite a while as I thought it was the menopause.He took bloods and when they came back he said I was hyperthyroid with T4 levels amongst the highest he'd seen.He referred me to an endocrinologist at the hospital and prescribed proprananol daily to help with symptoms.The wait for the endo at that time was 3 months.The endo took more bloods, including antibody tests which diagnosed graves disease.He then started me on carbimazole which I am still on.I was also referred to an opthamologist as my eyes were puffy, bloodshot and dry.I have also been diagnosed with graves eye disease. I don't have any visible lump on my neck and I can only remember it being physically examined once on my first appointment.I have never been referred for a scan.I have however noticed a change recently with a cough, a full feeling and a feeling of glue in my throat.I have an appointment to see an ENT consultant this month to discuss a thyroidectomy so whether he suggests a scan I don't know.Hope this helps and good luck.
I get a feeling of something in my throat but I do also have swelling. So far undiagnosed but I have high TSH, other results were normal. Was your TSH high?
hello there, my TSH has mostly been low or very low.I am now waiting for a date for a thyroidectomy.
Just read your profile A virus in October triggered this for me 🤔
I know I have Hashimoto’s, but the virus triggered a heightened autoimmune response in my thyroid (shown on scan) and the symptoms you describe. Chronic thyroiditis.
Aside from Covid ( I tested negative at the time as well, but I do wonder!) hospital doc said there were some other very nasty coronaviruses circulating that were making people quite poorly.
Yes, GP said lots of weird stuff going around, have the thyroid scan on Sunday so not long to wait
That’s great news Re scan 🤞rapid results and feedback so great news. And yes Re viruses everything has had chance to mutate and our immune systems haven’t been tested as much as of lockdowns I’m sure this is it. Not a doctor though 😂 Update after your scan and I hope you get some answers 🦋
Had phone call from GP today saying bloods were back and showing very overactive thyroid as well as poor liver function and low Vit D. I’m going to see if I can get a copy tomorrow. It sounds like they just did a thyroid function test but not the individual T3/T4 ones. She thinks it’s possibly acute thyroiditis but won’t known until scan (I have now developed a painful jaw and ear which are symptoms).
She said she’d already tried to call the consultant as was concerned about results, wanted to speak to him about whether I should have more tests, what he thought was the best treatment plan and actually whether I should go straight to the hospital and see him today as an emergency as she was worried about thyroid storm. She’d only managed to speak to his secretary. So she got me in a bit of a panic. She said she’d try again and phone me back.
Anyway she called back and said she’d tried him again but still hadn’t spoken to him but hopefully he’ll get back to her asap and she’ll call me straight away with the plan. She’s prescribed propranolol (so happy I have something) and I have to keep an eye on my blood pressure and go straight to A&E if it’s high or low or if any of my symptoms get worse or I’m confused or drowsy. Told her I’m drowsy all the time so she said ‘more drowsy’. I am so tired, I’ve stopped work as I feel too ill and my hands shake too much to be able to do anything. Am having 3hr naps in between not being able to eat hardly anything.
Fingers crossed hear back soon and scan is Sunday so not long to wait,
Propranolol will help with symptoms. How much are you prescribed? It’s likely you need carbimazole which will lower the level of new hormone the thyroid can make.
A GP usually needs the guidance of a specialist to commence carbimazole as it’s needs to be balanced by how high the FT4 & FT3 levels are & the liver may need to be tested further first.
It’s pretty poor if the GP can’t liaise straight away, I hope they get back to you ASAP tomorrow.
The “even more tired” comment isn’t very helpful, their way or saying worse in any way.
Do you have are way to monitor temperate, blood pressure & pulse? Of in doubt go to A&E.
Last point. Propranolol is likely a temporary medication, as once your levels are stable you won’t need it to relieve symptoms. *Do not stop it abruptly*. I was instructed to stop 40mg x3 daily dose and wasn’t advised to reduce dose slowly. Made me quite Ill with migraines. Others have said they have stopped without a problem but it’s something to be aware of.
I’m glad your doctor is being so vigilant Rufus! I’m sorry you’re feeling so poorly but it’s good you have stopped work as first steps to getting better. I have chronic thyroiditis at the moment so sympathise- horrid symptoms. The scan will
Confirm this as it did on mine so it’s only a few days to wait. It sounds like you’ll be fast tracked to the consultant I’ll keep
My fingers crossed for you.
Can you access blood results on line via patient access or your surgery website?
Hi, thanks for your reply, our surgery only have prescribed medication on the online access, it’s really rubbish. They still post letters with blood results if non urgent!! They so behind with technology. They still have a closed door policy so can’t gain access without an appointment so going to ask next time I’m in for more bloods.
Reading symptoms I do think it’s subacute thyroiditis as have ear and jaw pain and I had a virus about 3-4 weeks before it started, but I think GP said maybe not as thyroid is swollen but not painful. Hopefully get a diagnosis soon 🤞🏻
Thanks for replies. Didn’t hear anything back from GP last week so finally managed to speak to her today. She did speak to the consultant and he didn’t want me to start on the carbimazole yet so that’s why I’m still waiting for medication as he’s unsure if I have thyroiditis or Graves’ disease. She requested an urgent appointment when she spoke to him last Wednesday and he said yes he wanted to see me within 10 days so I should have had appointment this week but apparently there’s no appointments on my record yet so GP is phoning consultant again today to get emergency appt. hopefully this week or early next week.
She said she has another patient with exact same symptoms who consultant said GP could start on the carbimazole and he has an appt on 26th despite GP requesting a few days later than me so she’s a bit annoyed and I’m a bit jealous.
I have new symptoms so spoke to her about those; constant sickness which she’s prescribing me anti-sickness tablets and something for stomach as even if a manage to eat and keep food down get terrible stomach ache and feel bloated for hours after. Also can’t open my mouth more than a few centimetres, think it’s because my jaw and ear are painful on one side and now jaw seems to have seized up but she said that’s not typical of thyroid and not sure what’s going on there. I also have extremely itchy skin day and night which is stopping my sleeping and making me miserable, so she’s giving me strong anti histamines to see if they help.
She’s said what I really need is the carbimazole but until the consultant appointment I can’t have it and all of these other medications are temporary. I’m increasing the propranolol gradually, started on 10mg 3x per day, and increasing by 10mg every two days as long as heart rate and blood pressure don’t go too low, she’s said I can gradually go up to 80mg but am on 30mg at the moment and my heart rate is still fast but not as fast as it was but no improvement with tremors. She’s booked me for more thyroid blood tests and liver function next week. Not managed to get me blood results as surgery are a bit useless so when I go next week am going to ask for them printed while there.
Had scan Sunday morning, sonographer said she’s actually the radiologist so she’d write the report and it would be with GP by Friday, she said she’s not allowed to discuss with me directly the findings but as I’d had overactive thyroid confirmed by bloods she could confirm thyroid is showing typical presentation of overactive disease but couldn’t tell me cause, would have to speak to GP end of week.
So still waiting but hoping I get some treatment soon ..
And thanks so much for replies it really helps knowing others have been through similar and have eventually got some help x
An ultrasound looks at health & size of thyroid and detects any nodules but can’t determine the function throughout thyroid (not conclusively, only indicate)
You need thyroid antibody testing.
TPOab Thyroid Peroxidase
TGab Thyroglobulin antibodies
TSI Thyroid stimulating immunoglobulin
TRab TSH receptor antibodies
There’s an overlap with antibodies & you can be positive in all but TPO & TG have highest elevations with Autoimmune thyroiditis. Positive TSI & TRab is accepted evidence of Graves.
If negative for antibodies scans are done to look for nodules & a specialised uptake scan can be done - which does establish function in thyroid and highlight high uptake hot toxic areas.
If GP can’t request antibody testing there’s no reason the specialist can’t request and post you blood test form. You can then make your own arrangement to have blood draw. Most are able to attend GP practice who will send off tests. I’m very difficult to draw blood so book an appointment at local hospital.
I began carbimazole before cause was confirmed, many do as doctors are usually very keen to lower any sort of hyper and we hear of many examples of doctors treating “hyper” long term & with irreversible treatment like radioactive iodine or surgery without an attempt to check cause. So making you wait until reason is explained is not typical, your results might be explain why caution.
As for obtaining results. Telephone reception a few days in advance, say you are attending for appointment and want to collect printed copy at the time. Asking for them on the spot they may say they need to check first. They won’t have that excuse of you request early.
Thank you, good idea about results, will phone through before and collect when I’m in.
Saw a different GP last week who said the scan was to rule out cancer but this new GP keeps saying it was to determine cause. The one I spoke to today was really annoyed she’d not been allowed to prescribe carbimazole yet.
Thanks for all the blood test info I’m writing it all down and will ask what exactly I’m being tested for.
In my case the GP telephone the hospital and got guidance to start carbimazole & propranolol “on the spot”.
I had been hyper a long time by this stage and they had a strong suspicion toxic nodule, as I had a ultrasound scan & fine needle aspiration 7 months before. I was told all ok & pathology wise it was but blood test results hadn’t been processed. I even found out later I had hyper levels 4 years before.
I’m really particularly about checking results now. Your results might not be typical eg very low TSH & very high FT4 & FT3 it could be confusing them?
That is rubbish. But I believe not all practices on line are equal. Plus I know it’s money but there’s always medichecks as you could get full thyroid panel plus antibodies which could show Hashimoto’s. I used them at Xmas and results in 3 days but I pay an extra 30 quid to get blood drawn at local private hospital as I’m too squeamish to do finger test 😂
It does sound very similar to my situation though with an infection kicking things off. It makes sense. But I know mine is autoimmune- scan showed scattered micro nodules and he confirmed chronic thyroiditis (I’m Hashi). Did your radiologist give you feedback on your scan there and then? I think I was lucky as was a consultant radiologist so probably didn’t need to clear it with anyone so told me there and then . I hope the doctor calls with results from this if not.
Re docs it’s a lottery isn’t it? Mine have been fab luckily- can’t prescribe anything to help till see Endo but they’ve called to check on me which meant a lot and said they’d contact following Endo on 7th to see outcomes.
Did you get beta blockers and are they helping? I tend to use mine only when I’m ‘buzzing’ with the tremors and internal shake feeling. But I believe sticking to the dosage probably keeps on top of them.
🦋 do hope you are ok and as off work it takes additional stress of ‘how the heck am I going to be/ feel tomorrow’ and worrying about having to make the call in. We need wellness to function and work. It really brings home how central the thyroid is to every level of our bodies and quality of life when things go wrong.
If it’s subacute not autoimmune I believe from reading that it maybe settles more quickly? I’ll keep my fingers crossed for you.
Whatever it is, I sympathise. It’s a thoroughly unpleasant condition.
The radiologist I saw did say my thyroid was presenting as typically overactive but then said the report would be with GP in 7 days and I’d need to speak to them going forward. The propranolol has reduced my heart rate but not made any difference to tremors and it’s the tremors stopping me working. I run a business and don’t qualify for sick pay which is rubbish, I do have insurance but need to find paperwork and see what’s covered.
I was really unwell when I woke up last Thursday so I’ve ended up bypassing the GP completely. Had very low blood pressure and very high heart rate so my husband drove me to A&E. I passed out on arrival which wasn’t fun but meant I got seen straight away! I had bloods taken so they’ve done the TS3/4 and antibodies as the GP had only done TSH and was waiting to see if other bloods would be done at the hospital (GP are rubbish, they’d waited 2 weeks after TSH came back very low). A&E doctor started me on carbimazole that day, they also got me an urgent endo appointment for the Monday morning.
Saw Endo and he’s said most likely I have Graves Disease rather than thyroiditis as TS3/4 very high, some of the highest he’s seen and I have no pain in thyroid. He couldn’t print results as no printer in room but he did say TS3 was 43. The antibodies haven’t come back yet. The scan showed one small nodule and very swollen thyroid but he’s not worried about that. I’m continuing with propranolol and carbimazole and having bloods redone in 7weeks going back to see him in 2m to see if levels have changed. He’s said carbimazole will gradually start making a difference but as TS3/4 so high it’ll take a while to notice.
Going for more liver tests in 6 weeks as had poor function (think 104 but don’t know what that means) and GP worried in case carbimazole affects it.
When I saw endo I asked about the eye disease part of Graves as I already have an eye condition that causes a lot of trouble so I have special contact lenses and eye drops that are prescribed by eye hospital and still my eye sight isn’t great. He checked eyes and I had no problems at that point so he said it was unlikely as I’m not a smoker, I think 10% chance. Last night and this morning eyes feel weird though, I hope it’s not that.
Sounds like a worrying time, I glad you got some help & monitoring in place.
There’s TSH or a FT4 & FT3 but no TS3
An FT3 of 43 is extremely high (example of range being 3.6 - 6) Graves is ver6 likely. TRab or TSI antibodies will confirm. Doctors do not always arrange the right antibody testing.
Specialist can be very poor at looking after those with eye issues.
British Thyroid foundation have created this early warning card -
I'm very glad you went to A& E. I Hope you start to feel a bit better soon, now you're taking carbimazole.
If it turns out to be true that your GP's initially only had a TSH result, and didn't follow up to get a fT4 and fT3 done .. then that is concerning... in fact, given your symptoms it was potentially dangerous.
If you've had an fT3 level of 43 for the last 3 weeks , then i imagine you were in danger of thyroid storm.
There is no reason whatsoever that any GP at your surgery could not have got an fT3/ and fT4 done for someone presenting with your symptoms and who they knew had a low TSH result.
What is a bit odd is that the lab should have done at least an fT4 when they saw the TSH was low.. it's called 'reflex' protocol >> If TSH is low >> fT4 is done >> if fT4 is High >> fT3 is done.
The other thing that is a bit odd is that you were told your initial bloods would take 7 days to come back (or have i got that bit wrong ? ) again, if this is true.... then there is something very poor about that ... there is no reason why they can't be back the next day at the latest if they are urgent... at my surgery ours are back the next day even if they are not urgent.
It sounds like one of your GP's was on the ball , and very annoyed at all the waiting around she had to do in your case, not being allowed to prescribe carbimazole ~ Perhaps your case , and the handling of it needs looking at by someone who has responsibility for blood testing protocols at your surgery and the local lab.
The idea that you were left wandering around for 3 weeks with an fT3 of 43 , that they hadn't even tested , while they were all waiting for a phone call from an endo .... is frankly scary.
Of course maybe i'm being too harsh on them ...... if you live up on top of the Pennines or in the Outer Hebrides .. maybe there's an excuse if they have to take the blood to the lab by Donkey Cart or Helicopter ?
Anyway . i really hope you feel a bit safer knowing that the carbimazole will be preventing any more T4/3 being made.... even though you do have to wait for what's already there to go down . Hope you feel better as soon as possible.
I had 1 today which is 5th April and was referred 11th March so about 3wks. I am still waiting for my consultant appointments with ENT and endocrinology though
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