Tirednesd

[Apodemus]

I have Graves with mild TED, on :5mg Carbmizole and T4 and T4 back into normal range with TSH catching up slowly. I find tired especially in the afternoons. Is it low TSH, or Carbmizole ormy body recovering?

[PurpleNails Administrator]

5mg carbimazole is really low anti thyroid dose.

How much replacement do you take?

Do you have any results?

TSH, FT4 & FT3 with lab ranges.

Which antibodies have been tested?

Thyroid issues both hyper & hypo causes fatigue. This can linger as you recover. So blood test might appear normal / in range but you still need further time to recover.

Thyroid also impacts nutrients which contribute to symptoms. Important to test folate,ferritin, B12 & vitamin D. Optimal levels are the aim. Anywhere in range is acceptable to dr.

[Apodemus in reply to PurpleNails]

Anti TPO antibody and anti-thyroglobulin antibody levels are normal as measured by Randox Health.

Clinic/Practice Visit on 13/03/2024

Component

Date

Value

Ref Range

Status

•

Thyroid Stimulating Hormone

13/03/2024

0.01 (L)

0.27 - 4.2 mIU/L

Final

•

Free Thyroxine (T4)

13/03/2024

15.1

12 - 22 pmol/L

Final

•

Free Tri-Iodothyronine (T3)

13/03/2024

6.1

3.1 - 6.8 pmol/L

Final

•

Anti-Thyroid Peroxidase Antibody

13/03/2024

<9

0 - 33 IU/mL

Final

I get the vitamin issue and will do a private test. I naively thought if levels were in range I would be 'normal' but clearly as TED still with me I am stupid ☺️

[PurpleNails Administrator in reply to Apodemus]

Your FT3 is high in range & this will cause TSH to drop & suppress. Test TG, TSI & TRab to rule out other autoimmune.

Are these results AFTER you began treatment? As your FT4 & FT3 are not over range. Carbimazole lowers FT4 & FT3. Lowering in range levels to force TSH to rise is not alway of benefit. Especially if the underlying cause is not investigated. You may have a healthy thyroid but pituitary signal issue for example, although this is rare. (& you expect to see low FT4 & ft3 levels)

I presented with suppressed TSH & disproportionately high above range FT3. My hyper is not autoimmune but from a hot or toxic solitary nodule.

& I also have signs of TED as revealed by orbital MRI but specialist did not divulge as doesn’t believe in TED and negative Graves antibodies. MRI was to confirm no issue. At the follow-up telephone appointment she told me everything fine, you need no treatment, I’m discharging you, goodbye. I thought this odd so obtained report which said stated image showed chronic inactive TED.

Doctors may be assuming you have Graves because of your eye symptoms.

[Apodemus in reply to PurpleNails]

My TSH antibodies have been tested but don't have the results. I've been on carbimazole for about 8 wks reduced form 10mg. I'm ok just tied. I see the opthalmologist next week but already had CT scan that showed mild active thyroiditis. Yes endo thought Graves due to eyes.Sorry to hear your journey....it's not straight forward is it!

[pennyannie]

Hello Apodemus :

Can you please post your original TSH, T3 and T4 readings and ranges at diagnosis and which antibodies were found positive and over range in your bloods and proof of which Auto Immune disease you are dealing with.

There are 2 AI diseases that tend to only get diagnosed when the thyroid and or eyes are involved and they are Graves and Hashimoto's - and they both start off the same way - so it's important to know which one you are dealing with as the treatment is not the same and why you must know which antibody was found positive and over range in your initial blood test.

The antibodies can look like - TPO - TgAB - TRab - TSI - or maybe reading as TSH Thyroid Receptor with a and number result ?

Carbimazole is an Anti Thyroid drug which semi-blocks your new daily thyroid hormone production and slowly your over range T3 and T4 will fall back down into range -

and all the AT drug does - is try to offset the worst of the symptoms being tolerated while we wait for your immune system to calm down again and hopefully your thyroid reset itself without the need for drugs and a bit like a plane put in a holding position in the air, while waiting for its appropriate landing slot time.

The AT drug should be titrated down as your T3 and T4 fall back into range as too low a level of T3 will result in your feeling the equally disabling symptoms of hypothyroidism which may well be a reason for your afternoon tiredness as blood tests tend to run a few weeks behind symptoms.

When metabolism runs too fast as in ' hyper ' type symptoms or too slow as in ' hypo ' symptoms the body struggles to extract key nutrients through food and non optimal levels of core strength - ferritin. folate, B12 and vitamin D can compound your ill health further than necessary - so please arrange for these to be run and we can advise where these need to be as some NHS ranges are too wide to even be sensible.

[Apodemus in reply to pennyannie]

Thank you I only know my T4 was 29.4 when I was first diagnosed. Getting blood results via the reception isn't great They referred my results to endo who prescribed Carbmizole. I saw him last week and I know he sent off for TRab.

[pennyannie in reply to Apodemus]

OK then - maybe register for on-line access to your medical records held at the surgery then you can see at your leisure everything that is going on and we can explain anything that you don't understand.

[Apodemus in reply to pennyannie]

I've tried but not sure you can do that in Northern Ireland but the endocrinologists results come through mycharts.

[Buddy195 Administrator]

I also have signs of TED as revealed by orbital MRI but specialist did not divulge as doesn’t believe in TED and negative Graves antibodies.

Your specialist is wrong. Whilst most people with TED do have Graves, some (like myself) have it with Hashimotos & there are cases of people without a thyroid condition (ie euthyroid) having TED. I was diagnosed by a TED specialist ophthalmologist. TEDct are a very supportive/ informative organisation & helped me find a specialist in my area.

[Apodemus in reply to Buddy195]

Thanks Buddy195. I don't think he's wrong from all the articles I've read. I see a specialist ophthalmologists this week so we will see! I emailed my endo and he will have my TRab results this week and will share them with me.