Thyroid in UK

[HaleyBF]

Hi. Sorry but we are so lost with all this. We are Canadians. I'm in Canada, my girlfriend, Haley, is living alone in London. On Monday Haley had a wild heartbeat, went to A and E and had a lot of tests done and was given Carbimazole. Her mum had Graves. Today she went to her GP and back to A and E because she had a sore throat. The A and E were supposed to give results of her white count and liver but now they're saying she won't know til Monday. Is there a way to find out the results online from her initial tests at A and E when she was diagnosed with an overactive thyroid? She just wants those numbers. Also, one eye is quite is sore and she's scared it's bulging. Is there any treatment she can do on her own right now while she waits the 6 weeks to see an endo? Should she go somewhere about this eye problem? I'm so grateful to any of you for your wisdom. Already I've had such incredible help from people on here. It's all quite scary.

[Greekchick]

Hi Haley BF,

It’s me again - please go to emerg if eye is bulging - you may have to wait but they can probably tell you the blood results too. I’m hoping someone in UK on the forum who can help is still awake and sees your post - I don’t know how you register to get your test results in the UK.

One reason to go to hospital is to see if there is an endo on call - that way you can see someone more quickly than waiting 6 weeks. Also , is there a weekend emergency clinic in London? Maybe if you go online they list some private ones that are open on Saturday in the am.

I’m also wondering if you can get a private endo that you could see sooner than 6 weeks - there may be someone on the forum who knows someone in your area.

I wish I had a better suggestion for you - but given your circumstances for peace of mind I don’t think you have a choice but to go. Is her throat still sore? Does the eye just hurt or is it really popping out?

Let me know please and I will try to help.

[Greekchick]

[e-mail] - that’s Dianne at thyroid.org and she has a list of private endos that might see you sooner than 6 weeks

[Greekchick]

Moorefields eye hospital is open 24/7 and someone could see her about her eye - 162 City Road , Old Street , London - they may be less busy than the a & e - worth a try

[MaisieGray in reply to Greekchick]

I don't think Moorfields A&E is the right place for her to go. Their website says

"Our A&E department at City Road is not a "walk-in" clinic. If your eye problem is not an emergency you should see your optician or GP who will refer you to one of our specialist clinics if necessary."

I suggest phoning 111 and ask to speak to a Dr for advice about what, if anything she needs to do tonight.

[Greekchick in reply to MaisieGray]

Thank you so much MaisieGray for providing that info. I would not have known that.

[HaleyBF]

You are truly a saint. I sent the info to her

[Greekchick in reply to HaleyBF]

I’m so glad to help. Please keep us posted. I’m in Eastern Canada and will be awake for awhile.

[HaleyBF in reply to Greekchick]

Amazing I'm from Halifax. Thanks again, so much

[ling]

Sorry to hearhaley's had to go back to the A&E.

I cannot help with the test results question but regarding the eye problem, she should get an appointment to see an ophthalmologist and be evaluated for thyroid eye disease (TED).

She is obviously having a very bad attack of TED. Have a read here for more info of TED -

Thyroid Eye Disease: Its Causes and Diagnosis

reviewofophthalmology.com/a...

A few important things to note-

1) Make sure to get confirmation of Graves via TRAb or TSI antibodies testing.

2) There is no direct treatment of the TED, so managing the root cause ie. the Graves (if it is confirmed as Graves and not something else), will help improve the TED.

3) If it's Graves, then carbimazole will be the correct medication to be on. She has to take it consistently as prescribed. This will help bring the high thyroid hormone levels under control and by extension, alleviate the TED symptoms.

4) Haley is alone in London? I imagine this is a pretty traumatic experience for her with a pretty full blown hyper attack and having to deal with it all on her own.

Difficult as it is, please advise her to try and remain calm and to stress less. Being constantly stressed out and anxious, exacerbates the symptoms.

Best wishes to you both,

Ling

[ling]

PS. Relief might not be immediate; the carbimazole needs to be given time to work. It could take several weeks before symptoms improve.

[Greekchick in reply to ling]

And that you are awake at this hour and answering posts my dear - you are also a wonder and such great and concise advice too ❤️

[Greekchick in reply to ling]

Ling, is she better off staying at home and trying to calm down or going to see about eye at Moorfields or to a & e for meds to calm her down?

[ling in reply to Greekchick]

Of course if haley can get an eye appointment right away, it would be good getting it seen to. Otherwise, lots of rest and less physical activity would be best.

[Greekchick]

HaleyBF, ling has given you excellent advice for Haley. See if one of the MDs can give her a beta blocker or a sedative to calm her down when she goes to hospital or clinic . She needs a full prescription for that . It will help with palpitations and also relax her. ling is right - the stress will make her worse and her symptoms will get more pronounced.

[HaleyBF]

Thank you both, so much. Tears in my eyes here. You give me hope for the world.

[Greekchick in reply to HaleyBF]

And you are a wonderful and caring friend - all the best to you both and now you made me cry too. Please keep us posted.

[LAHs]

Well done Greekchick, MaiseyG and Ling, HaleyBF you are a wonderful friend to the lady in London (your bff?). Please keep us posted as to how it all works out. At least she is in London, if this happened in America she would have to choose between getting well or going bankrupt. My thoughts are with your friend and hope by the time I wake up tomorrow she is well again.

[Greekchick in reply to LAHs]

Thank you LAHs, for your kind words - I so appreciate it.

[ling]

HaleyBF. One more point re follow up. Your earlier post mentioned haley's on 40mg carbimazole. Make sure she gets the necessary follow up blood tests in 3-6 weeks to check her FT3 FT4 TSH levels, and is reviewed by the doctor.

Best wishes.

[Valarian]

I didn't realise that Haley was on her own in London.

Given that she had a sore throat and is on carbimazole, if she feels the symptoms of agranulocytosis, especially if they have got worse, she should just head for the nearest A&E, never mind the potential waiting time.

nhs.uk/conditions/low-white...

In England, there are ways you can access test results online, but she would need to register for this at her GP surgery, so unlikely to be something she can do over the weekend.

It may be that the quickest way to get reassurance about her eye over the weekend is to see if she can get a walk-in appointment for an eye test at any high street optician (although agree, if it's really painful she should head for A&E). They won't be specialists in TED, but if there is anything very seriously wrong they should spot it. If she tells them she has Graves', they will be on the lookout for related changes.

The problem is, the symptoms of Graves' can be very scary. Hayley quite probably has a thumping heart rate, she may be feeling breathless, she may experience tremor in her hands or muscle weakness....it is truly horrible until they get it under control. Her GP may be able to prescribe beta blockers to bring some of these under control while she is waiting for the carbimazole to kick in fully. (Carbimazole reduces production of new thyroid hormone, but can't destroy hormones already in the system - it may take eight weeks or even longer before she really begins to feel much better).

Another symptom is anxiety, and although all of us who've experienced full-on Graves will tell you that stress seems to make the other symptoms worse, we all know just how hard it is not to feel stressed by the symptoms !

[HaleyBF]

Thanks so much. I've passed all this info onto her. She is really scared so this is reassuring. Really don't know what I'd do without this.

[Greekchick]

Hi HaleyBF,

Any updates? How is Haley? Just checking in. All the best 🤗

[Buddy195 Administrator]

Hi Hayley BF,

You and Hayley are both in my thoughts. Just checking she is taking selenium supplements? Endo and ophthalmologist both recommended I take 200mg selenium per day for TED. Dark glasses, eye drops (no preservatives) and a diuretic (to ease swelling) have all helped me manage symptoms.

Hope Hayley is seen soon re eyes to reassure her.

[HaleyBF]

Thank you all for being so caring to total strangers. I can't emphasize enough how remarkable this is. As always, I suppose, there are silver linings, my new nickname for all of you.

Haley has been back to A and E and then on to Moorfields. They have booked her an appointment with a specialist in a few weeks. They said there is no damage to the eye but that one is a bit bigger than the other. They seemed to reassure her that most of it was exacerbated by her spiked anxiety and continuing headaches. She will take a paracetamol for the latter after she goes to Planet Organic to get eyedrops and selenium, and for the former I'm really hoping she will fall in love with podcasts and radio and get off her feet for a few weeks. She has beta-blockers and they are keeping her heart chill.

She wanted me to explain that being on these websites makes her a bit too anxious (I'm happy to post and report) but that she sends heartfelt thanks to you all for your conscientious support.

[Greekchick]

Hi HaleyBF,

For all of us who suffer from Graves, I promise you we understand! It can be incredibly stressful to do an internet search and post on a forum, and certainly not in the middle of a hyper episode. You are very lucky to have each other.

So glad she was seen at Moorfields and will be followed up there. I spent some time on exchange in London when I was in grad school and needed to go there for an eye emergency. They were amazing back then. Also - so good she has a beta blocker Rx - she will feel better. If she does not, tell her to ask her docs for a sedative. It won’t hurt her in the short term and if she can rest and relax, so much the better.

Please tell her REST AND QUIET, yes in capital letters, is the treatment for Graves along with what she had been given. She must rest - it really isn’t optional - if she wants to get better from this hyper episode. She should stay away from caffeinated drinks and spicy foods as well. Ling gave her some excellent advice about her eye care as well.

My warmest wishes to you both - and hope she feels better soon. I must sound very annoying at this point because I keep asking, but please keep us posted. You are both in my thoughts. 🤗❤️