Any Graves advice please?

[liz1952]

I'm wiriting this for my daughter, Hyper as opposed to my Hypo. She was diagnosed just over a year ago and has been medicated since. Some sypmtoms have improved but equally she is still not 100%. She had an Endo appointment last week, but hadn't been given a blood test form, so attended without having had one, thinking that was better than cancelling. (3 children under 5 so like gets a little bonkers..)She says the Endo said she was fine, no need for meds any more and to return to her GP to check if she was Menopausal. She asked how he knew, without the blood results and he said as she wasn't shaking.......Any ideas please, or is it too soon to answer without her results?

[greygoose]

My first question would be: how did he know she had Grave's in the first place? Did he do the right tests? Did he test the Grave's antibodies, TRAB or TSI? Or did he just see a low TSH and jump to conclusions? The fact that she's not shaking now, doesn't automatically mean she's euthyroid (normal) - especially as she doesn't feel well - it could mean she's now hypo. She needs tests.

[liz1952 in reply to greygoose]

She had blood tests and was diagnosed a year ago, but I don't believe in such detail as you suggest. I too have had issues with the Endo dept there and am therefore not surprised but angry at this treatment.. she is having a blood test today and going to the GP later. Thank you for this reply greygoose, much appreciated.

[greygoose in reply to liz1952]

You're welcome.

[Hennerton]

I fear she has one of those arrogant Endos who thinks he is God. Frankly I am shocked, as Graves' is not a minor disease and he should be more cautious. Your daughter either needs to insist on a blood test or change who she sees.

[liz1952 in reply to Hennerton]

She is having a blood test today...I too have had issues with the Endo dept at our local hospital, so although not surprised...still shocked. Thank you for your response.

[Marz in reply to liz1952]

Hopefully her blood test will include the anti-bodies suggested by greygoose as it could be that she was wrongly diagnosed and possibly has Hashimotos which requires different antibody tests. This Endo sounds remiss - so could have made a mistake. It has happened before here on this forum - sadly ...

[SlowDragon Administrator]

We see many people with Hashimoto's where endo just assumes low TSH / high FT4/high FT3 is Graves

They need to run the correct antibodies testing

For full Thyroid evaluation your daughter needs TSH, FT4, FT3 plus TPO and TG thyroid antibodies for Hashimoto's and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

If TPO or TG antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though you can have slightly raised antibodies with Graves

Low vitamins are especially common with Hashimoto's and Graves

Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies and TSI or TRab antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

[liz1952 in reply to SlowDragon]

Thank you so much for such a detailed reply. I have used Blue Horizon as our health authority doesn't do detailed testing, just TSH - that's when Hashimoto's was diagnosed, so I guess it won't be a surprse for her.......

[SlowDragon Administrator in reply to liz1952]

So she already knows she has Hashimoto's?

You say in opening post she's hyper

Though this can be a Hashimoto's flare

[liz1952 in reply to SlowDragon]

No, as far as she's been told she hasd Graves, not Hashimoto's..

[SlowDragon Administrator in reply to liz1952]

Ok. Reply above says Hashimoto's diagnosed .....you meant Graves

[liz1952 in reply to SlowDragon]

No, I have Hashimotos, she has Graves, it was me having the blood test

[Kellygreen]

Sounds like a quack! You can’t say she is fine without doing blood work. She needs to find a new doctor. Graves’ disease just doesn’t go away. Please tell her to get a second opinion.

[liz1952]

She's back form docs who has put her back on meds......couldn't make this up could you???

[SlowDragon Administrator in reply to liz1952]

As you have Hashimoto's, it's perhaps more likely she does too

What has GP given her? More carbimazole?

Suggest you get thyroid, vitamins and antibodies tests asap

Is she on strictly gluten free diet?

This can help with Graves and Hashimoto's

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[liz1952 in reply to SlowDragon]

Wow....you all never cease to amaze me. Thank you so much x