I had my endocrinology appointment on Thursday

[saltylu]

I haven't posted until now as I have had pretty severe tonsillitis so I have been trying to rest as much as possible and sleep.

It has also given me some time to digest it.

I didn't see the Consultant as he was not at the hospital that day however, I saw his senior registrar who was a lovely guy. I was there for 45 minutes - 1 hour and he listened to all of my concerns, took a list of all of my symptoms and did a short examination. He has said at the moment he cannot prescribe me anything as he needs to be able to prove the problem is with my thyroid (my mum has recently been diagnosed with MS and I am a carrier of the faulty gene) as the local care group wouldn't let him prescribe it until he can prove it. He didn't try and fob me off and he explained his reasoning really well. He was genuinely concerned at the amount of symptoms I am having considering my age (31) and he said someone my age just shouldn't be having them.

I had a TFT while I was there, he has also requested I have an adrenal function test to rule out Addison's as the symptoms are very similar. He said he is reluctant to do an MRI until after that test as a lot of people have tumours on their pituitary without knowing it and he doesn't want me to be worried when it might not be the thing causing the problem.

I have to go back in 3 months after my adrenal function test and hopefully I'll see the consultant then.

Am I allowed to request the TFT results from the hospital or is that something I'm just going to have to wait to find out?

[Aurealis]

I don’t know if the hospital would give them to you. It might be easier to do some privately yourself. monitormyhealth.org.uk/thyr...

Three months is a long time to wait if you’re not feeling well. Life is precious x

[saltylu in reply to Aurealis]

I've done a few private blood tests and can't afford to at the moment, but I think the 3 month wait is purely because it'll take time to get the ACTH test booked and my hospital is really overrun at the moment.

[shaws]

I am glad the doctor sounded sympathetic but I am assuming your blood test may not have been at the earliest? and fasting?

I think, if you can afford it, to get a private blood test and I'll give you a link just in case you decide to do one. If you do, make sure you are well hydrated, fast (you can drink water) and if you were taking levothyroxine, you'd allow a gap of 24 hours between last dose and test and take it afterwards.

A Full Thyroid Function Test consists of:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

thyroiduk.org/tuk/testing/p...

These are finger pin-prick tests but they can make arrangements if you want someone to draw blood. Make sure arms/hands are warm on the a.m.

thyroiduk.org/tuk/testing/p...

Post your results with the ranges and members will respond.

[saltylu in reply to shaws]

I've done quite a few private blood tests over the last few months and I can't afford to do anymore. It was at 9.45 at the end of my appointment, I wasn't going to eat beforehand in case but I had to eat to take my antibiotics unfortunately.

I might do another private test in January to see where things are and maybe get an idea of if things have gotten worse.

[shaws in reply to saltylu]

I completely understand about 'having' to have private tests (which we really shouldn't have to do)..

I have looked at a past post and I would think if you had a Free T4 that has dropped to 9.9pmol/L and the lab they use has the range 9-19 shows you are at the very bottom of the range. As T4 is an inactive hormone and has to convert to T3 (active) goodness knows what your FT3 is and I should think it is also at the bottom of not below which would give you symptoms.

This is a list of symptoms and 'once upon a time' doctors knew all of the symptoms and we were diagnosed upon them alone and given a trial of levothyroxine or NDT.

thyroiduk.org/tuk/testing/i...

I must also state I'm not medically qualified but had to diagnose myself when TSH and by that time I had a TSH of 100.

thyroiduk.org/tuk/about_the...

[Sem74]

Hi

If you don't mind me asking ,wha t were your symptoms and why did they suspect addison ?

[saltylu in reply to Sem74]

Not at all.

I'm really fatigued all the time, go through weak spells where I struggle to even get out of bed, my depression/anxiety is kicking up even with medication, I drink 3 - 4 litres of water a day and I'm still thirsty, always need a wee, I get hypoglycaemia attacks, low blood pressure, nausea and I have an extensive family history of all kinds of autoimmune diseases. My mum has two, possibly three.

If you have Addisons you're also likely to have hypothyroidism as well.

[RockyPath]

I live in the US (poor me 😢) and it’s legally recognized that all test results, clinical notes, and any other kinds of medical records are the property of the patient, not the doctor or the place creating the records.

Although there may be some foot dragging, they are prohibited from restricting access to complete copies of one’s records upon request.

The law is known as HIPPA.

[saltylu in reply to RockyPath]

I emailed my local hospital records disclosure team and I am able to write to them to request all of my records, including any radiology images on a disc!