My 17 year old daughter was suffering severe headache and bloodshot swollen eyes. She was sent straight to hospital by the gp where blood

tests showed an overactive thyroid. The consultant gave her ibuprofen and paracetomol to control the pain and said she would be referred to an endocrinologist. After 10 days of waiting i am going to the gp with her. Her eyes are severely swollen and bloodshot and she has a goiter. Should I be pushing for an appointment. I am really worried as they are controlling the pain but not treating the illness. We have not been told the test results.

15 Replies

  • Welcome to the forum, Kittymum.

    It can take a few weeks to get an endo appointment so your GP ought to start your daughter on Carbimazole to treat the overactive thyroid and this will hopefully reduce the swelling of her eyes. She should have a follow up thyroid test 4 weeks after starting Carbimazole to monitor her levels and adjust the dose if necessary. Ask your GP for a copy of the hospital thyroid results and subsequent test results with the lab ref ranges and post them for comment/advice.

  • Thank you for your fast response. Hopefully I will get to see the gp on Wednesday and will let you know if he has the results.

  • Kittymum, s/he should have but repeat tests can be done, analysed and reported within hours if necessary. Let us know how your daughter gets on at the GP on Wed.

  • I saw my GP on a Wednesday, blood tests on Thursday and got a phone message to say I was very hyperactive, she had left a prescription at the desk for me (Carbimazole), had made an appointment to see an endocrinologist and would I make an appointment to have more bloods done after four weeks - so the results ought to be there very quickly.

    She should be started on Carbimazole and if she has palpitations she ought to be given something (beta blockers if she is not asthmatic but there are other things ) to calm them down.

    You can wait quite a while before you get to see an endo. After I had been on the Carbimazole for four weeks I got a letter from my endo telling me to increase the amount if Carbimazole I was taking.

    She is probably feels awful and should try to get and much rest as she can.

  • Hi sorry your daughter is having problems as a parent it is always worrying when it is your child no matter how old they are.I also have overactive thyroid. The usual is your GP starts you on treatment whilst waiting for hospital appointment as this can takes a few months depending on whete you live.The usual first treatment is a medication called carbimazole, you take this tablet every day to slow your thyroid production down.Your GP or endo will do tests to see what is causing the overactive thyroid. The most common reason is Graves disease and this also affects the eyes so this is very likely the cause.Her blood tests will show if she has antibodies for Graves.You need to see your GP as soon as possible to get her started on carbimazole so she can start to feel better, Good luck let us know how you go on

  • Should also have said, get some eye drops I like HycoSan but you will have to go to an optician for them, Gel Tears are also good but not sure they are additive free, you can get minims of Visco Tears that are, additive free drops are best and use them regularly throughout the day, not just once other twice and keep using them even when her eyes feel a bit better.

    She can also squeeze a face cloth out in as hot as she can bear water and hold that over her eyes, then repeat as it cools, that feels really good.

  • Dont mess around waiting for GP or Endo go to A &E

    Thyroid Eye Disease is serious and needs prompt treatment

  • It was A and E who did the blood tests and sent us away with paracetomol and ibuprofen. She didn't see our gp as it was the weekend, it was the gp at the walk-in centre who sent us to hospital.

  • I would go to GP in morning if no appointment tell them it is an emergency, you cant mess around with this x

  • If her eyes are really bad she needs steroids and she should be given carbimazole immediately by the GP

  • This is quite shocking to hear. It is an utter disgrace bordering on negligence that A&E discharged her with painkillers and sent you away to wait for an appointment. Hyperthyroidism and coexisting thyroid eye disease can be serious and should be treated very promptly. You are right - they are treating the symptoms and not the cause.

    I was hyperthyroid and due to misdiagnoses landed up in hospital with a thyroid storm. Admittedly I'd been ill for a long time so with the neglect it was inevitable.

    To be honest, I wouldn't wait until Wednesday to see the GP - they are not specialist enough to treat hyperthyroidism either. I would ask for an appointment first thing tomorrow. Some people have said you can wait weeks and months for an endo appointment - unless things have changed, hyperthyroidism and TED should be treated as an emergency and usually is. You can wait weeks for HYPOthyroidism but not hyper.

    Good luck and don't be afraid to fight her corner - be determined with them.

  • Oh I meant to say - it would be really helpful if you could get copies of her test results (with the reference ranges). This will give you a starting reference point to work from so you can see how the medication (once she gets treatment) is working for her. Please don't be afraid if you get some resistance to the concept of you asking - everyone is legally entitled to copies of their results - from hospitals and GPs. My experience is that If you are politely insistent and stand your ground they will give them to you.

  • I'd make a complaint to hospital about treatment you were given. I'd get a GP appointment asap and go with your daughter with a notebook and take notes, ask questions, make sure he/she sees you write their response down.... it really helps, it's not threatening it's about taking your daughter's future health extremely seriously. This is an excellent supportive site. When I was diagnosed found it helped to give up wheat.... if she smokes (a lot of teens do) then she really needs support to give up, it's very detrimental to hypers. For stress, acupuncture and massage really worked wonders.... read as much as you can about it, in books so you can get up to speed with the why's and what can be dones.... best ...

  • We have an appointment at 9:45. I'm hoping the test results from the hospital are there so we aren't starting from scratch waiting for blood tests. Thank you for your support, at least i know i'm not being a paranoid mum.

  • Well, sent straight to the hospital yesterday and prescribed carbimazole, naproxen and propanolol as still suffering severe eye and head pain.

    Today had an MRI scan and saw the opthalmologist (3 of them). Had a retinal photograph taken and booked in for a Fluoroscein angiography tomorrow. The blood vessels at the back of her eyes are bleeding into her eyes causing pressure on her retina's, they could only describe it as being similar to macular degeneration but she is too young for it to be age related, hence all the interest. We are now waiting for a diagnosis (may have to use the macular board for help with this one).

    They think the overactive thyroid may have exacerbated a non-connected problem. Still waiting for an ultrasound on the thyroid but think the eye problem may be more serious. The consultants so far have been fantastic since the farce with the weekend staff. Hopefully we will get both problems on the right track.

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