Hyperthyroidism newbie help

[Lollipop20]

hello everybody, I have been having debilitating epigastric pain and on and off intermittent sickness and diarrhoea for 6 months, I’ve lost half a stone this month without trying (normal BMI) and also having problems with my vision (blurry, dry etc) so a new doctor referred me for blood tests which included my thyroid my results have come back and the doctor has said he is going to urgently refer me to a specialist and also test me for Graves’ disease as my cousin and Nan both have it. I wondered what people’s thoughts were on my results? He didn’t really say the severity of it just that he will give me an urgent referral and look out for symptoms of ‘thyroid storm’ I’m a bit shaken up really as I never thought my bad stomach etc would lead to this result
Please see below, they were happy with T4;

Serum TSH level:
0.11 mu/L
Normal range:
0.4 to 4.9

Serum free T3 level:
6.4 pmol/L
Normal range:
2.4 to 6.0

Serum free T4 level:
14.7 pmol/L
Normal range:
9.0 to 19.0

on the referral I’ve also noticed he put down my blood pressure from the last appointment which was 121/96 I don’t know if that has anything to do with it lol

thank you

Hi, I was diagnosed with Graves' disease in 2019. Had palpitations, resting heart rate of 150, lost a stone in 3 weeks, dizziness, dry eyes. It was the poorliest I have ever ever felt! I had an urgent endocrine referral , started on propanalol to slow my heart and then carbimazole for thyroid. No lie within 5-7 days I felt like a new woman!
was on the medication for 18 months then slowly weaned off it and have not had to take it since.
Mine was caused by post partum hormones, my T3 was normal but it's was T4 and my TSH that was in its boots! My TSH still sits at about 0.3 now so it's always teetering but they're happy they don't need to treat unless I'm symptomatic. Hope you get sorted soon!

Thank you! Yeah the symptoms are so debilitating sometimes, fingers crossed I’m seen soon and everything is confirmed and I get a plan together! Thank you for sharing it’s nice to hear you weren’t in treatment forever!

Hi @Lollipop20
how are you getting on now?
I am in the same boat with very similar results and symptoms to yours!
I tried Carbimazole after my GP prescribed it but it seemed to make me feel worse.
i managed to get a cancellation appointment with endo at the hospital and he’s given me PTU to try instead
I have felt absolutely awful 😢hoping for brighter days very soon
i hope you’re doing better?

@TheJoyousExpert sorry I’ve only just seen this, I’m still not great and having ups and downs and still not been seen by the endo. What were your results and what did the endo say about it? Have you got any follow up tests? Or did they give you anymore? Thank you cx

I had Graves disease in 2021

When taking carbimazole only, my levels quickly normalised and my GP took me off it...However it wasn't long before my tests went haywire again. After a few dreadful cycles of this I went to see a specialist and they put me on a "block and replace" regime

This is balanced doses of carbimazole and thyroxine so your levels are stable for 12+ months and hopefully the disease goes into remission

I think some people may be able to be treated with carbimazole only and it works but for me it was a rollercoaster

I felt pretty nasty until it was treated properly...huge appetite, weight loss, anxiety, tremor etc.

@Lululemonade11 thank you for your comment and sorry you went through that. Can I ask what tests did you have to confirm graves? I’m aware that my levels are not a miles away from normal range (although I feel terrible and even had some time off work because of it!) and did TPo test that came back normal and then did a thyroglobulin test which was well over range but unsure what any of this means lol. Thank you

@Lollipop20
Hi OP,
sorry you’ve been feeling unwell. I hope you are feeling a bit better?

my levels were:

FREE T4+FT3+TSH
Serum free T4 level 16.8 pmol/L [9.1 -
17.61
Serum TSH level < 0.01 mu/L [0.35 - 4.9];
Below low reference limit
Serum free triiodothyronine level 7.0 pmol/L [2.4 - 6.01; Above high reference limit

so again not wildly out of range but I must admit, I’ve felt dreadful.

the doctors kept telling me it’s not my thyroid making me feel bad because it’s only just out of range, but it is, I know it is.

it’s the TRab or the TSI antibodies to confirm graves I believe. I will be tested for this just before my next appointment at the end of April.

have you been given any medication? Have you had an appointment through?

I kept calling the endocrinology department to see if they had any cancellations and managed to get one.

have you been given beta blockers at least?

Also, please keep an eye on your mental health during this time - this is something I am really struggling with but I am hoping for better days very soon

@TheJoyousExpert thank you so much for this as I have just called them and they have got an appointment for me in 10 days time!! thank god as I have have been waiting since the start of February. Feel better already, yes my mental health has been really bad to be honest but I don’t know if that is the thyroid? I just don’t feel right and I haven’t since then birth of my daughter 3 years ago so I don’t know if I’ve been having these problems since then. Did you find the endo listened to you more than the doctors? I’ve just had another blood test today as I went private and found I’m vitamin d deficient and also my B12 came back low so GP wants to test them with a FBC again so hopefully by the time I get to the endo I will have up to date results as well. Thank you again

@Lollipop20
oh that’s great OP! So glad you managed to get an appointment!

I am sure the low vit D & b12 will perhaps be contributing to how you feel as well.
if you do feel any worse in the meantime, I’d go back to your GP as they can prescribe Carbimazole and beta blockers if needed.

i won’t lie, my mental health has been terrible & I feel pretty sure it’s because of the thyroid stuff….. the docs and endo weren’t convinced and my endo appointment was quite rushed tbh. But I was just glad to be there & get into the system & have an alternative medication given (I had a weird reaction to Carbimazole). I have my next appointment 26 April & should have results of TRab and ultrasound then hopefully.

have you looked at the healthunlocked (Thyroid UK) site?

i hope you start to feel better very soon @Lollipop20 & really glad you managed to get an appointment 😊

I had high TPO ab and a radioactive iodine uptake test to give a definite diagnosis

I found the specialist to be much more helpful and thorough than the doctors

Yes it definitely affects mental health. I was 100% certain I had some terrible incurable disease and was also apparently losing my vision! Demanded to go to optometrist during a major lockdown who said my eyes were fine😏