Mild or Severe?

[Clara18]

Hi,

I have Graves Disease and my overactive thyroid has returned...my tsh is 0.01 and t4 is 3.5.

Just wondering if that's mild or severe? Really not sure.

Thanks

[Buddy195 Administrator]

Hi Clara18,

Welcome to the forum! We are here to help and support.

Can you post the ranges after your results (in brackets) as these vary between laboratories. Did you have FT3 tested?

When were you diagnosed? Did you have antibodies tested to confirm Graves?

What medication/ dosage are you currently taking? How are you feeling? Are you experiencing any symptoms?

[Clara18 in reply to Buddy195]

Hi,

I have attached pic of the blood test and ranges.

First is TSH, then Free T4 and last is Total T3.

I mixed up T4 and T3 earlier

I get rapid heart rate but that's really all. I have 30mg carbimazole but really don't want to take them as they made me feel awful last time and I have wedding coming up. Was wondering if I could delay a while. Can't get an appointment with Dr to ask this🙈

Thanks

[Buddy195 Administrator in reply to Buddy195]

I can’t see a photo, but you can maybe type the results in a reply on your post. When were you diagnosed? Have you had antibodies tested to confirm Graves? (I’m just checking because In my case symptoms, including TED, pointed to Graves BUT antibodies encouraged by this forum confirmed Hashimotos!)

[Clara18 in reply to Buddy195]

Yeah, it's Graves and I have a few other autoimmune conditions

TSH lower range is 0.4 and mine is less than 0.01 which seems bad and T3 is 2.5 in upper range and mine is 3.5 so not so bad?

T4 is normal.

Thanks very much 😊

[Buddy195 Administrator in reply to Clara18]

Can you supply the ranges Clara18 (in brackets after level) as these vary between laboratories.

[Clara18 in reply to Buddy195]

Yeah:

TSH <o.o1 (0.35-5)

Free T4 18 (9-21)

Total T3 3.5 (0.9-2.5)

My blood report says it looks consistent with T3 toxicosis but I don't know what that is.

Cheers

[Buddy195 Administrator in reply to Clara18]

If you can afford to test privately, I would get your FT3 tested. Then you will have a fuller picture of your thyroid health.

[SlowDragon Administrator]

Please also add any vitamin and thyroid antibodies test results

Always test thyroid levels early morning

[PurpleNails Administrator]

You need FT4 & FT3 tested & If they are high over range you are “over active”

Most feel hyperthyroid when FT3 is high & hypo when it’s low.

Not everyone is so affected by FT4, but some are.

It’s not unusual for Graves levels to 3x or more over the normal range & this would be classed as “severe”.

I have hyper for another reason the FT3 wasn’t quite double when diagnosed & levels had been rising slowly over years. I did have some symptoms but nothing I would complain as severe. So mine was a elevation and mild by comparison. Still not ideal, especially as prolonged.

Any level of FT4 or FT3 over range requires treatment. TSH can be low / undetectable for many reasons. Drs focus on TSH but it’s the thyroid hormone which are relevant with treatment.

Have you been given carbimazole to bring down levels?

[Clara18 in reply to PurpleNails]

I will attach pic of my levels : tsh, t4, t3

Yeah, given 20mg of carbimazole but if love to delay taking them as wedding soon and they made me feel awful last time 🙈

[PurpleNails Administrator in reply to Clara18]

Don’t see pic? Often easier to write in results. & be sure to include lab reference range. Ranges vary between labs.

[Clara18 in reply to PurpleNails]

So high range for T3 is 2.5 and nine is 3.5 so I'm guessing that's fairly mild.

TSH looks worse as it's less than 0.01 and low part of that range is 0.4 🙈

[Clara18 in reply to Clara18]

And T4 in normal range x

[PurpleNails Administrator in reply to Clara18]

Is that a free ft3. For 2.5 to be high end of range is an unusual low range. We often see (3.1 - 6.1) for example & we do need an actual range to interpret accurately.

Suspect you have had total T3 tested which has typical reference range of (0.9 - 2.5) nmol for example.

Total T3 doesn’t give you the information you need. You need the free unbound levels which are available for the body to use.

Just because high Total TT4 & TT3 are it doesn’t confirm FT4 & FT3 are high. Although it would be likely.

If we have the exact range we can calculate where you are in range

For example TT3 3.5 nmol/l (Range 0.9 - 2.5) 162.50% You can see it is at 60% above range it would be an significant elevation. If FT3 was equally above range many would view as a mild(er) hyper not severe. Your FT3 may be less in comparison or greater. You need the right test to know.

if FT4 is in range and -IF- FT3 were only a little above range you likely would need a starting carbimazole dose grater than 15mg to get it under control. Have doctors suggest higher?

Any elevation if predicted to be continuous should be treated & should not be left. It could get worse if levels increased.

Of course this is all guesswork because you don’t have all the information you need & I’ve applied typical ranges & you need precise ranges. Im just showing how the results would be interpreted & used.

TSH is not a thyroid hormone. It’s a pituitary hormone, it signals the thyroid to produce new hormone. So as thyroid levels rise TSH drops in response (to tell thyroid lower production) but it’s not reliable as it can take a long time to respond again.

[Clara18 in reply to PurpleNails]

Ranges as follows:

TSH 0.35-5 mine is less than 0.01

Free T4 9-21 mine is 18

Total T3 0.9-2.5 mine is 3.5

I wasn't given free T3 and doc says I can't get another test for 8 weeks

Yeah, 20mg of carbimazole. It makes me feel quite sick 🤢 but it'll get better I guess.

Is yours in remission? Mine was for a while but came back x

[PurpleNails Administrator in reply to Clara18]

I still take low dose carbimazole, as my hyper is from a nodule it’s does not remit. Doctors prefer I undergo RAI but I’m not keen and the plan for now is long term carbimazole

With Graves, being autoimmune, the aim if for remission, but there is always the potential for remission / relapse. Doctors often say if not under control after 18 the thyroid should be surgically removed or destroyed with radioactive iodine. This removes the potential of being hyper. Doctors view hypothyroid easily treatable.

How long were you previously taking carbimazole? The longer you stay on carbimazole the better the chance of remission long term.

Doctors tend to rush this process and stop medication early. How long had you stopped carbimazole?

[Clara18 in reply to PurpleNails]

Do you find you have any side effects from long term use? Did you go hypo?

[PurpleNails Administrator in reply to Clara18]

I haven’t have side affects. I’ve always been on a low dose.

The carbimazole is adjusted to keep you in range. I was borderline hypo for a short while but then the carbimazole was adjusted and it allowed levels to rise.

My TSH has stayed most undetectable. Which can occurs in some after prolonged hyper, which is what happened to me.

Carbimazole works by reducing production. This is done by affecting the way the body can use iodine. So it affect is alway temporary.

Stop the carbimazole the hyper would return.

[SlowDragon Administrator]

Please add actual results and ranges like this

Different Labs have different ranges

TSH 0.01 (0.2-4.6)

Ft4 14 (12-22)

Ft3 2.5 ( 3.1-6.8)

[pennyannie]

Hello Clara and welcome to the forum :

Graves is an auto immune disease and will wax and wane throughout your life.

It tends to be a stress and anxiety driven AI disease for which there is no cure.

Everyones journey with Graves is different and why it's poorly understood and badly treated by the medical profession.

There are forum members who have been on the Anti Thyroid medication for very many years and when their immune system ' plays up ' and has been triggered, just resume taking the AT drug for a while, to get them ' over ' the ' blip ' .

If Carbimazole doesn't suit you, there is an alternative Propylthiouracil - PTU - for short:

The most current research is suggesting the longer one stays on the AT drug, the more chance there is of finding remission :

pubmed.ncbi.nlm.nih.gov/338...

[Clara18 in reply to pennyannie]

Thanks very much for your reply 🙂

Glad to know can stay on them if need be

[pennyannie in reply to Clara18]

Hopefully yes, print off that link I sent you just in case you get told differently .