Newly diagnosed, completely confused!

[Daniigordon]

Hi everyone,

I've been recently diagnosed with an overactive thyroid, but don't know much about it, and can't get a follow up appointment for a few weeks. I did see my GP this morning, but didn't ask too many questions as he was annoyed at the hospital pushing me back to him, so anxiety kicked in and I just took my prescription and left. I've read a few posts, and you all seem really knowledgeable, so i thought this would be a good place to ask some questions in the mean time.

Ive been sent my test results and they are TSH <0.05, free T4 >50, free T3 22.7.

My first question really, is what does that actually mean?! 😂

Im also concerned as I had Radiotherapy for toncil cancer about two months ago. It was initially thought that it was the reason, but my GP told me that it would cause an underactive, not overactive thyroid, and no-one seems to know what caused it. I don't get a follow up MRI for over a week, so now I'm anxious that it may have spread to my thyroid. I will of course be asking my contacts at the hospital as soon as possible, but wanted to check if anyone has experienced anything similar, and maybe had some advice.

Finally, my gp, macmillan nurse, and ENT consultant are all arguing about the name. My gp insists hyperthyroidism is just for underactive, but they say otherwise, which one is correct? 😁

Thankyou for any help you may be able to offer!

Danii xx

[SeasideSusie Remembering]

Your GP is wrong. HypOthyroidism is underactive. HypERthyroidism is overactive. If he is getting something so fundamental so wrong then beware, he is not the best one to be guiding you with your overactive thyroid!

thyroiduk.org/tuk/about_the...

As I am hypOthyroid I'm not able to offer any advice, sorry.

[jimh111]

These results TSH <0.05, free T4 >50, free T3 22.7 indicate an overactive thyroid - HYPERthyroidism. HYPOthyroidism is underactive, you do not have this. The thyroid produces T4 (thyroxine, a storage hormone) and a little T3 (the active hormone). T4 is converted to T3 in the body. TSH stimulates the thyroid to produce T3 and T4. As free T3 and free T4 rise the TSH falls so as to stop stimulating the thyroid.

I don't know anything about toncil cancer. Thyroid cancer does produce abnormal thyroid levels but would need a separate investigation by an endocrinologist. Thyroid cancer is the least threatening cancer and is treated by removing the thyroid. I'm guessing (nothing more than a guess) that the tonsil problem could upset your thyroid. Regardless, you should be under the control of an endocrinologist for your hyperthyroidism, NICE guidelines state so.

Are you receiving treatment for your hyperthyroidism? With these levels of free T3 and free T4 you will experience sweating, rapid heartbeat and anxiety. If you are not being medicated for your hyperthyroidism go and see your GP and ask them for an urgent referral to an endocrinologist. The hospital should have done this but if they haven't done so get the GP to do it. They can give the hospital a kicking on your behalf if they wish to. You need coordinated care for your tonsils and your thyroid. Get a relative / friend to advocate for you if you can, you will not be in a good state to stand up for yourself.

[Clutter]

Welcome to the forum, Daniigordon.

You are overactive (hyperthyroid). Underactive is hypothyroid.

Your GP is correct that radiotherapy for head and neck will sometimes cause hypothyroidism. I've never heard that it can cause hyperthyroidism so it may be coincidental.

Euthyroid (normal) TSH is usually 0.2 - 2.0. Euthyroid T4 is usually <24 and euthyroid T3 <7.0. So, you can see your TSH 0.05 is suppressed, and T4 and T3 are too high. Carbimazole will stop your thyroid producing T4 and T3 and your current high levels will drop. TSH should rise when T4 and T3 drop but it may take months for TSH to recover and it sometimes doesn't recover.

You will need blood tests at 4-6 week intervals to check the Carbimazole dose is right. Once it kicks in dose may need titration to balance your thyroid levels. If dose is insufficient your T4 and T3 will rise. If you are overmedicated they will drop too low and you will become hypothyroid (insufficient T4 and T3).

An adverse effect of Carbimazole can be low white blood cell count which fights infection. You should have been advised to stop taking Carbimazole if you get an infection, sore throat or rash and to contact your GP immediately or go to A&E.

Most hyperthyroid patients can expect to wean off Carbimazole after 12-18 months and attempt remission. If you have Graves antibodies remission is likely to be permanent in less than 50% of cases.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Daniigordon]

Thankyou all for your help!

I think from the sound of it my GP probably mistook what I said, his bedside manner sometimes lacks, but he is usually very good

Im already experiencing lots of symptoms, so he did prescribe carbimazole, glad to know it's the right thin

Ill have my partner with me next time we see my consultant, and he's much better than I am, so will make sure I get the refferal and ask the right questions.

Thankyou all for your help, it has helped me understand a bit better, and atleast now I will know the right kind of questiond to ask

[helvella]

You might find this paper heavy, but it does identify transient hyperthyroidism after a specific type of neck radiotherapy. (No idea whether the same as you had or entirely different, afraid I do not know.)

Transient Hyperthyroidism After Head and Neck IMRT: Radiation-induced Thyrotoxicosis

James Ahlquist1, Ravi Kumar Menon1 and Krishnaswamy Madhavan1

1 Southend Hospital, Westcliff on Sea, United Kingdom

press.endocrine.org/doi/abs...

At least it shows one possibility - but don't take it more than it is. The paper does include this sentence: Thyrotoxicosis due to radiation-induced thyroiditis is not widely recognised.