Hospital

[Avaanais]

Could anyone let me no what will happen when I go for my first appointment at the hospital

[Judithdalston]

I would have thought that would vary from one clinic to another; also whether NHS or private. I was never offered an NHS endo appointment ( neither for Hashimoto's nor hypothyroidism, nor insulin dependent-diabetes). A private endo did a brief physical examination for thyroid problems: no blood tests, and communicated minimally, then wrote a letter to Gp ignoring what I had said! You might be lucky and find someone who does everything from bloods to ultrasound, good physical examination and listen to your symptoms etc.

[Avaanais in reply to Judithdalston]

I am nhs + my doctor made the hospital appointment the day he diagnosed me so I go on the 9th

[Quasarlis]

If your going to see a so called ‘Endocrinologist’ expect to have your symptoms ignored, lied to about T3 and basically told your making it all up. If you have say a BH blood analysis with you that shows you have elevated T4 levels AS WELL AS elevated TSH levels, elevated RT3 levels and off the chart Hashimotos antibodies etc like I did expect that to be totally ignored and have the results twisted and lied about and the ridiculously sub-standard by comparison NHS blood test results used instead and have said to you when you ask about the differences (In my opinion ‘doctored’ results) ‘Some assays are diffetent’. You would be better off going in there and saying ‘Let’s not waste each other’s time, I’ll just knock your teeth out of your face and put you on your back now for lieing etc as I can’t be bothered to listen to your coward ‘All I care about is my obscene NHS salary so don’t want to rub them up the wrong way by prescribing T3 that will actually make you better, so I’m going to lie about it all garble .. How does that sound to you so called Dr?’

Your better off telling your GP etc that you have no interest in their corrupt opinion, get your blood tests done every 6 months by the NHS, get your prescription charge exemption card, get your Levo and chuck it in the bin as that’s all it’s good for. Get a thyroid + 12 test done, source your own T3 and just use the NHS tests to monitor your T3 levels. Come on here and ask our advice and we will help you. That’s what I did and I have had FAR FAR more sound advice, dietary help, T3 dosage advice, blood test evaluations etc in here than I have EVER had in 25 years off our corrupt and lieing NHS concerning our condition ... That’s what you should do in my opinion.

[Valarian in reply to Quasarlis]

I realise many hypos have a different experience Quasarlis, but Avaanais is hyper, and as such , will be under specialist care rather than that of her GP. The first few months of hyper can be very frightening, especially as it often comes on very suddenly, and the above post is unhelpful !

Given that she is already hyperthyroid, if Avaanis were to source her own T3 as you suggest and begin taking it (hopefully someone would pick up on this before things got that far), she could make herself very ill indeed.

Most people here are hypo - but where it isn't clear from the post whether someone is hypo or hyper, it's really important to check before offering advice.

[Avaanais in reply to Valarian]

I am hyper

[Quasarlis in reply to Avaanais]

I do apologise Avaanis! And your right Valarian, I should have checked, I didn’t and I wrongly presumed Avaanis was hypo as my comments suggest, my mistake, my apologies and do forgive me. 👊🏻👊🏻

[Valarian in reply to Quasarlis]

No problem Quasarlis - I understand why people make the assumption, but it can be confusing for newbies !

[Quasarlis in reply to Valarian]

Yes it can .. All noted!👊🏻👊🏻

[Quasarlis in reply to Avaanais]

Just smack him in the face anyway for us Hypos would ya!! Haha!!! 👊🏻👊🏻

[Valarian]

EDITED - POWER SUPPLY RAN OUT !

As you are hyper, they will often begin by weighing you at the beginning of every appointment.

The endo will have your latest blood results. If you haven’t had FT3 or antibodies tested previously, they will normally order those. Depending on what they think is causing you to be hyper, they may order additional tests, and they will probably feel your thyroid to see whether it is swollen or has nodules (not normally anything to worry about).

They will ask you how you feel, and it’s important you tell them about any symptoms, so maybe think about making a list beforehand - thyroid issues can play merry hell with the memory.

If they suspect Graves' Disease (the cause for most cases of hyperthyroidism in the UK) they should ask you about any changes you’ve noticed to your vision, and if they don’t, you must tell them anyway, as this could be a sign of Thyroid Eye Disease which needs to be properly monitored, and treated if necessary. The type of things to watch out for are a feeling of pressure in the eyes, blurred vision or changes colour vision. Again, this is something they should ask about every time.

They will then explain your treatment - what dose of Carbimazole you will be on, and for how long (in the case of Graves’, usually twelve to eighteen months), and explain a rare but potentially dangerous side effect which causes the white cell count to be suppressed - basically, if you feel unwell and have a sore throat and mouth ulcers, you will need to get your blood tested ASAP. They may give you a card or paper to help you explain this to your GP or A&E, but although it’s important to be aware of the possibility, it really isn’t something to dwell on. The two basic treatment options are 'titration', where the dose of carbimazole is reduced as thyroid levels come down, or "block and replace" where carbimazole is kept high, and replacement thyroid hormone (levothyroxine) introduced as your natural thyroid levels come within range. There doesn't appear to be any difference in outcome, and each clinic has their preference.

They will explain alternative options which may be considered if the Carbimazole doesn’t work. These will include removal of the thyroid by surgery (thyroidectomy) or Radioactive Iodine treatment - for now, these are long-term considerations to research when you feel up to it (or read about people's experiences here), but not to dwell on.

Its important to ask them to explain anything you don't understand, and to feel free to ask questions. I've found that endos may not explain things much at the outset, but if you ask questions and show you are interested, they have always been happy to respond.

They will explain when your next appointment will be, and whether you need tests in the meantime (which can usually be carried out at your local GP surgery). Usually, while your thyroid levels are over range, you will have FT3, FT4 and TSH tested every four to six weeks. Endo appointments may be every six to eight weeks, so sometimes you may need a test in between. You will typically also need a test a few days before every endo appointment.

Subsequent appointments will be similar to the first, except that the endo will have a graph showing how your thyroid levels have changed with the treatment - again an opportunity to ask questions, and they've always been happy to turn the screen so that I can see the graph.

This is likely to be a long haul Avaanis, but there are plenty of us here to support you. Just make sure that if you post, you put something in the title to indicate you are hyper, as fellow-hypers are more likely to pick up on that.

Good luck !

[Judithdalston in reply to Valarian]

Hope all hyperthyroid patients are treated this well...also makes one wonder if hypers get better experience than hypos- interesting!

[Valarian in reply to Judithdalston]

Treatment and tests seems to be similar for hypers, the level to which the endos respond to queries etc can be variable. For us, the crunch point seems to come if the antithyroid treatment doesn't work - whether the endos are willing to discuss options, or just mark people down as 'refusing treatment' if they don't want RAI. I haven't reached that stage yet.

I think the two main differences are that a) each instance of hyperthyroidism is not a lifelong condition, although some of us end up being treated several times for recurrence, so there is an expectation on both sides that our condition will improve, and b) hypers are usually automatically referred and treated by specialists pretty much from the outset - our GPs don't really get involved. Hypos are normally treated in primary care, and may only get referred to a specialist after they've pushed very hard, by a GP who may not agree with the patient's assessment. That pretty much puts them on the back foot with the endo before they've started !

However, I know that I'm lucky in that I'm being treated at a big teaching hospital where there are endo consultants who are involved and interested in thyroid research.

[Judithdalston in reply to Valarian]

It's good to know some areas do it better- I live in an English region where tho a so- called University Hospital Trust there aren't any endocrinologists- nearest two hours away! So treatment is very limited!