hyperthyroidism

[SmileySunshine]

hello everyone.

advice please!

I have a complicated medical history. my main conditions to date are Takayasus Arteritis (autoimmune vasculitis condition), pulmonary Embolisms, and open heart surgery with mechanical valve fitted. I take many medications to keep this all in check!

In July this year, my blood tests showed hyperthyroidism and the GP wanted to treat straight away.

Serum TSH level < 0.01 (still the same)

Free T4 level 23.6 ( now is 17.2)

Free T3 level 7.9 ( now 6.2)

I held off and they have repeated the tests monthly. I’m negative for antibodies.

I was referred to endocrinology and was going in November, but they have brought it forward and I’m going today!

Help! - any questions you would ask, and am I wrong holding off treatment to see if things settle down?

Symptoms are tricky as I struggle with my other conditions so there is overlap ( as well as being in the menopause!)

Thanks for reading 😊

[PurpleNails Administrator]

welcome to form

Which antibodies have been tested, there are many types for thyroid antibodies.

Always add lab ranges, they vary between labs.

What time were tests? Levels fluctuate throughout day.

[SmileySunshine in reply to PurpleNails]

thank you so much for replying.

Good question! I’m not sure I will ask today. I think they thought it was Graves’ disease as I have an autoimmune condition already and my daughter has it.

The blood tests have always been first thing in the morning, before food and other meds. I’ll add the ranges I hadn’t realised.

Thank you

[greygoose]

Hi SmileySunshine, welcome to the forum.

No, you're not wrong to hold of treatment, you were very wise, because doctors are far to ready to jump to a 'diagnosis' of hyper based just on a low TSH. Your TSH is low, but what time of day were the tests? And your FT3/4 levels could be high, but not high enough to warrant treatment for hyper, I shouldn't think. But impossible to say anything for certain without the ranges.

So, you should insist on antibody testing:

TRAB and TSI for Graves'

TPO and Tg antibodies for Autoimmune Thyroiditis - aka Hashi's

As you already have an autoimmune disease it wouldn't be surprising if you now have another.

Problem is, the NHS are a bit mean about testing antibodies and will only test TPOab for Hashi's, when it could very well be the TgAB that is high - that was my case. You need both of them done. So, continue to refuse treatment until they are done.

[SmileySunshine in reply to greygoose]

Thank you. I’ve learnt so much already!

I will add the ranges, I’m sure they thought it was Graves due to my other autoimmune condition as you say. My daughter also has Graves ( only diagnosed a week before my first raised level!)

Thanks for the reassurance.

[greygoose in reply to SmileySunshine]

Yes, I understand the connection, but Hashi's is also autoimmune, and swings between hypo and low 'hyper', but they always forget about that. Most important to test for it so that you don't get the wrong treatment.

[SmileySunshine in reply to greygoose]

I checked today and they had tested for both so both ruled out for now.

They are going to do a diagnostic test to see if it’s nodules and also the autoimmune would show up. We agreed to hold of medication as my numbers are not too high.

[greygoose in reply to SmileySunshine]

Good. That sounds like a better plan than rushing into medication that you might not need.

[SlowDragon Administrator]

Also get vitamin D, folate, B12 and ferritin levels tested

Mildly raised thyroid levels suggests more likely autoimmune hypothyroid - Hashimoto’s.

Hashimoto’s frequently starts with transient hyperthyroid results before becoming increasingly hypothyroid

Or it could be linked to your other medications

[SmileySunshine in reply to SlowDragon]

Thank you. I will ask for those to be checked.

I will ask them which antibody test they did too.

[Billycasper]

Is Amiodarone included in your heart medication by any chance. I know it can affect the thyroid because of its high iodine content.

[SmileySunshine in reply to Billycasper]

I was on it 18 months ago , but I had a reaction to it so came off.

I will ask about all my medication as I am on a lot. Thank you

[SlowDragon Administrator in reply to SmileySunshine]

Then Amiodarone can cause thyroid upset for months after stopping it

healthunlocked.com/search/p...

Request ultrasound scan of thyroid

[SmileySunshine in reply to SmileySunshine]

This was one of the question I was asked this morning by the consultant. I was only on it two weeks so it was ruled out.

[SmileySunshine]

my ranges are:

TSH - 0.30 - 4.20 and mine is <0.01

free T3 - 3-5.4 and mine is 6.2

Free T4 - 9-19 and mine was 23.6, but has come down to 17.2

I’ve just checked and my TSH receptor antibody was tested and also my thyroid peroxidase antibody both were negative.

Thanks everyone. I’m going into my appointment with questions and more knowledge thanks to your replies ☺️

[PurpleNails Administrator in reply to SmileySunshine]

I have continuous hyper without positive autoimmune. It’s due to an autonomously functioning nodule. It’s a single 5cm nodule, but sometimes they occur in multiples throughout thyroid.

The nodule was detected by ultrasound but to determine function you need a thyroid uptake scan.

Fluctuations are less common with nodules as there isn’t the autoimmune aspect, so seeing a drop in levels would be more unusual.

[SmileySunshine in reply to PurpleNails]

Thank you. That’s interesting. I will ask about that too.

[SmileySunshine in reply to PurpleNails]

The consultant suspects nodules so has requested the uptake scan. We are holding off medication for now. Do you mind me asking what medication are you on and is it for life?

[PurpleNails Administrator in reply to SmileySunshine]

I’m on carbimazole indefinitely. I also still take propranolol. Propranolol often prescribed along side carbimazole temporarily to help with palpitations symptoms. I didn’t have severe symptoms but was put on high dose propanolol then specialist stopped abruptly, which made me very ill with migraines, so I’m on long term low dose propranolol for migraines prevention.

Drs were keen to treat with radioactive iodine early on & discharged me back to GP for monitoring when I didn’t go ahead.

Like many I’ve found doctors are willing to over do carbimazole in order for TSH to rise into range at expenses of FT4 & FT3.

[PurpleNails Administrator]

Some info about antibodies.

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

TSI (Thyroid-Stimulating Immunoglobulin)

TPO & TG are positive with BOTH hyper & hypo autoimmune.

TRab & TSI are accepted as positive for Graves.

So as you can see there’s an overlap with antibodies & Drs rarely test them all.

[SmileySunshine in reply to PurpleNails]

Oh wow. Yes I hadn’t realised at all. Thank you so much for sharing.