New diagnosis : Hello everyone, I’ve just been... - Thyroid UK

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New diagnosis

cavapoo_lover profile image
8 Replies

Hello everyone,

I’ve just been diagnosed in the past few days - they’re finding out the cause through scans and more blood tests coming up! As it was Christmas Day I really pushed to go home and I yesterday. The nurses said to go back if I had any concerns about my health and I am still having fever like symptoms (boiling hot to freezing cold), feeling dizzy and faint and in general rubbish even after taking meds frequently. Do I need to go back? I have no idea what symptoms are considered ‘bad’ or ‘severe’ in hyperthyroidism. Any help would be much appreciated as I have no idea how to manage my condition with my return to college pr love of sport’

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8 Replies
Fruitandnutcase profile image
Fruitandnutcase

Sounds like you are still not very well. It might be an idea to phone the ward and speak to whoever let you go home. Considering I was on my knees by the time I finally got myself to the doctor I know from experience that I am certainly not someone who can give advice on what symptoms are bad or severe.

As for sport - I had Graves’ disease in 2012/13 (I was about 65- so much older than you) and it was exhausting. I had always been a great walker - long distance trails etc, plus I used to go to the gym several times a week and do Pilates.

I had to stop the walking completely for a long time, I kept up the gym but I went more for company than serious exercise, that and to prove that Graves was not going to rob me of all the things I enjoyed doing and my Pilates teacher is a physiotherapist and she adapted our exercises so that I was able to keep going to class.

I eventually realised I felt like walking again and was able to get back to doing that but I have since fractured my sacrum so I need to take regular breaks when I’m walking.

I also stopped working as an exams invigilator over the Christmas period because I felt unreliable and that worried me a lot but once I was sorted out ( I started on block and replace after three months on carbimazole only) I was able to get back to invigilating by Easter.

I think the secret is probably pacing yourself, relaxing and not being too impatient, although that is difficult because of the nature of your condition.

asiatic profile image
asiatic

With the proviso of not knowing the cause of your hyper and also that symptoms can be different in everyone, I wanted to share my experience after 8years being treated for Graves. For me the best indication of how Graves is affecting me is to measure my resting pulse which is normally in the 60's. Alarm bells ring when it drops down into the 50's as this means I am hypo. If it starts to climb into the 70's and above it indicates I am hyper and I need to adjust my meds. Hope you get a diagnosis and your hyper brought under control soon.

DippyDame profile image
DippyDame in reply to asiatic

I'd suggest you go straight back to the hospital and ask for further help. Without seeing your lab results it's difficult to comment with any detail or accuracy

This may help meantime...

List of hyper symptoms

thyroiduk.org/signs-and-sym...

General info

thyroiduk.org/if-you-are-hy...

I agree with asiatic . Thyroid hormone, particularly T3, is essential to almost every cell in the body and resting heart rate is an important indicator of cellular response.

Unlike asiatic I'm hypothyroid, but I monitor my RHR almost daily...and even throughout the day... using my FitBit. My normal RHR is around 65bpm.

We're all here to help, come back with any questions you may have

With correct treatment you should be able return to normal activities

Take care.

cavapoo_lover profile image
cavapoo_lover in reply to DippyDame

Thank you so much for the reply, it’s nice to hear from other people with experience in thyroid issues. I’ve had multiple blood tests and my T3 and T4 are incredibly high will my TSH is 0.005 when it should be over 1 - so it seems like my thyroid is a complete mess at the moment!! I guess as it’s a bank holiday everything has been slow but I am yet to get appointments for a CT scan for a pituitary tumour and a neck ultrasound. But hopefully soon it is all sorted out I’ll keep you all updated 😀

pennyannie profile image
pennyannie

Hello Cavapoo_lover and welcome to the forum :

Have you been sent home with any medication - Carbimazole maybe or Propylthiouracil - PTU - and if so what dose have you been told to take ?

This medication is an Anti Thyroid drug and generally prescribed when a person displays hyperthyroid type symptoms -

and has over range T3 and T4 blood test results -

and antibodies written as either a TR ab - a thyroid receptor blocking or a TSI - a thyroid stimulating over range and positive blood test reading.

Slowly you should feel better as the AT medication semi-blocks your T3 and T4 levels rising high and higher - and slowly your T3 and T4 should fall back down into the ranges.

Are you living with someone there to look after you ?

You may well feel totally exhausted - and unable to sleep - hot and bothered - eating for England though loosing weight and with a fast bowel - as your brain and body are running too fast and you feel you can't keep up with anything.

Does any of this resonate - what symptoms do you have and have any symptoms been alleviated - maybe you need to go back to the hospital and your medication needs to be adjusted.

cavapoo_lover profile image
cavapoo_lover in reply to pennyannie

I have felt totally wiped out at the moment, I’m in college at the moment living with my family and I’ve been so stressed over mocks next week I haven’t had the energy to revise for. My main symptoms are feeling faint or completely passing out and feeling incredibly sick at the same time, awful heat regulation and a pounding heart rate of 145 wand blood pressure of 67 when I stand up which is pretty bad for an active 18 year old! But yes all of those symptoms you’ve listed seem similar to what I’m experiencing

I am on Propylthiouracil and propanolol for my heart rate (although risky with my low blood pressure)

Thanks for the reply!!

pennyannie profile image
pennyannie in reply to cavapoo_lover

Well - I think you may need to postpone these exams as stress and anxiety are triggers for Graves Disease which sounds like the hospital think you have.

Are your eyes sore, dry, pouring with tears and or hurting - whatever Over the Counter or prescription medications you have for these symptoms - please make sure all are Preservative Free.

How long have you been on the PTU and beta blocker ?

When are you due back to the hospital - were blood tests run and are you just waiting on the results ?

You are wiped out - nervous, anxious, wired and tired and totally exhausted - so rest and try and relax - the AT drug takes a little time to work but you should feel some improvement in symptoms within a week or two.

If in any doubt about anything suggest you go back to the hospital where all your results will be readily available - especially during this Christmas New Year period where people are working on reduced staff numbers.

I have Graves Disease and the most well rounded of all the research I did for myself is that of Elaine Moore - elaine-moore.com

I'm not suggesting you start reading up as you are in no fit state to understand anything very much at the moment - and you will be in information overload -

So, when you feel a bit better, and you have some blood test results and ranges to share with us - we can help guide you through the next phase of this - so keep us in the loop and talk yo us as things develop and the blood tests and diagnosis are confirmed. if you have Graves Disease or not :

pennyannie profile image
pennyannie in reply to cavapoo_lover

We try to answer you as fully as possible within the first 24 hours of posting a question as this forum gets very busy -

Make sure you always reply to someone as they get notified to come back to you and when with new information you want to share this with all forum members so you need to start a new post/question so everybody can read everything being written on new posts.

If you start reading around this forum and get lost - don't worry - just press your Profile icon - which on my laptop is top tight and on my phone bottom left - and this takes you back to everything you have written and all your replies.

If - for instance - you want to read about me - or any forum member - just press their Profile button which is the icon sitting alongside their name in any reply they have made.

Hope that makes some sense :

If not - ask away !

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