UP AND COMING ENDO APPT

[NIKEGIRL]

Hi

I would appreciate any advice or facts to get a prescription of T4. Graves patient. I have been told unofficially by the hospital Endo over the phone I am T3 dominant. I was also told that on 30 Sept I will not be starting block and replace but rather there is another plan for me plus on top of that plan we r to discuss thyroid surgery.

I would like to start replace with T4. This is the first time EVER!!!!! T3 has made it into range.

14 September blood test at 8am fasting

TSH <0.001

T4 8.0 range 10-24 (-25% in range)

T3 3.5 range 2.0-6.0 (35% in range)

Taking 125mg PTU a day

Just to add. Diagnosed as peri menopausal and started taking MHT. Low dose estrogen and progesterone.

Thanks always to all u great people NIKEGIRL ✔️

[PurpleNails Administrator]

That has dropped quite low into range quickly after stubbornly being above range for some time.

MHT ? is that menopausal hormone therapy - being the estrogen & progesterone, or Is MHT a separate medication.

Is replacement still a possibility or have the doctors flatly refused? The “other plan” almost sounds ominous, why are they being cryptic? Be prepared for them to try & persuade you to have surgery / RAI, despite your previous wishes otherwise.

By the 30th you will no doubt need replacement or a reduction of PTU. are you expecting another blood test before the appointment?

[NIKEGIRL in reply to PurpleNails]

Hi. Yes levels have come away down as wanted by Endo dept. I will do another blood test on 26 Sept for appt on 30th. I started yesterday a contraceptive pill on a low dose of estrogen and progesterone as I am in peri menopause. I don’t know what we will talk about at the 30th sept appt.

[hiok]

Hi Nikegirl,Your levels are very low, maybe you are over medicated? I am sorry I can’t help you much as I don’t know enough, but your levels seem super low. Why are you on PTU instead of Carbimazole? Have you been taken t3 and PTU??? I hope it all gets sorted on your next appointment, if your levels get back to normal with less medication why wd they suggest surgery or RAI?? Best of luck!!

[PurpleNails Administrator in reply to hiok]

Nikegirl has history of high FT3 even when FT4 is low or even below range. So she has had difficulty balancing right level , with doctors focusing on lowering levels but & stopping levels going too low.

Carbimazole is the first line option, but PTU is used if side affects make carbimazole are untolerable, which was what NG experienced ( also in the case of pregnancy, not the reason for NG)

There are 2 regimens for antithyroid, adjusting medication (titration) or Block & replace (B&R) where higher doses are takes to completely block the thyroid but a replacement hormone is given. This is used for those that fluctuate of have difficulty controlling levels.

Where NIkegirl is located B&R it’s not a recognised regimen.

It’s standard that antithyroid medication is given for around 18 months, the aim being the condition goes into remission. Once past this stage, definitive treatments are offered. Doctors imply there isn’t a option but the patient ultimately decide on their treatment. I’m currently stable on carbimazole nearly 2 years, I’ve not agreed to RAI. Im now monitored by GP. I don’t have Graves I have a hyper nodule.

[hiok in reply to PurpleNails]

Hi PurpleNails, thank you for all the information, I’m sorry to hear NG is struggling so much. I feel I understand it so much better now. I also have a nodule on the left of my thyroid, I had a biopsy, (horrible experience) and it came back negative for cancer, so at least that was good news. It’s the first time I hear about Hyper nodule, so I will also try to do some research. I think you guys k ow way more that doctors and some endos! Thank you so much

[NIKEGIRL in reply to hiok]

Hi. Thanks for your help.

[nellie237]

Hi Nikegirl,

I had time, so.....I went searching. Didn't find much I'm afraid. NICE Evidence Review 2019 basically says that most of the studies are low grade (or maybe medium grade) and it is up to the Clinician to make the best determination based on experience.

I've linked the Evidence Review below, because they reference all the studies (from around the world, although they may be behind pay-walls), and there may be some info you can pull out to help you. This opens as a pdf. If you can't open it where you are, let me know if you want me to download and send it to you.

nice.org.uk/guidance/ng145/...

I've also linked Management Guidelines American Thyroid Assoc.,/Assoc of Clinical Endocrinologists. I didn't read any of this one

endocrinepractice.org/artic...

Take care

[NIKEGIRL in reply to nellie237]

Thank you for being so kind and finding some documents. I will endeavour to read them. I’ve got 2 weeks. Thank you nellie237