Episode 3....: Update to my two previous posts as... - Thyroid UK

Thyroid UK

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Episode 3....

MiniMum97 profile image
8 Replies

Update to my two previous posts as promised...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Saw private endo today as recommended on here and by some PMs. Not sure about him actually but will see how it goes. I was feeling very tired and spaced out so concentration was not good and not sure I got everything across very well.

But anyway, he thinks it is Graves (see previous posts). Think his words were "I will be very surprised if it's not Graves". I think this is mainly based on the fact that my thyroid is not sore to touch (although my throat was sore last weekend and I forgot to mention it due to stupid not working properly brain) and because my thyroid results when diagnosed with hypothyroidism were not very out of range (only just out of range for TSH and T4) and I have three close relatives with Graves. He is sending me for a TSI antibodies test (Peroxidase is normal) and if this is normal, a scan to check for nodules.

We'll see if he is right! Will report back after blood test.

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MiniMum97 profile image
MiniMum97
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greygoose profile image
greygoose

But haven't you already been diagnosed as hypo? Sorry, haven't got the energy to read back tonight. But I thought you had, and you were already on thyroid hormone replacement. When were TPO antibodies tested? You can't rule out Hashi's without testing the Tg antibodies, because they could be high even though TPOab were low.

I think he's thinking it's Grave's because the TSH is suppressed! That's all they usually go on, but good he's testing the TSI.

OK, I see that when you were diagnosed, your TSH and FT4 were 'only just out of range' - I presume you mean high TSH and low FT4. But, if you have Grave's, they would not have looked like that. You are hypo when your TSH hits 3, and once you are hypo, you cannot then become hyper - not in the true sense of the word. He did understand that you'd been diagnosed hypo? Oh, well, we'll see what the TSI test says! :D

MiniMum97 profile image
MiniMum97 in reply to greygoose

Hi greygoose, sorry for late reply been feeling v poorly and just coping with work. Yes I was diagnosed as hypo last May after T4 had been teetering around bottom of range for a number of months and TSH slowly creeping up. In May T4 dropped to 10.something (12-22) and TSH 4.8ish from memory. So yes I think I was definitely hypo. Mt TSH was over 3 the firs test I had, but obviously that isn't good enough for a diagnosis in the UK!! I started having hypo symptoms a couple of years before that. I've had both types of Hashi's antibodies tested about 5 times and they've always been negative.

Apparently he says he seen Graves disease start like this before (ie bit hypo-looking and then go high). I don't know if that's right but I do know (from here (you mainly lol!) and my own research) that you can be hypo and have flares or hashitoxicosis. And that you can be negative for hashis antibodies and ultrasound shows hashis. I also know that in rare cases you can have both hashis and graves. I am inclined, like you are (and my GP also agreed with us) that it's probably a hashis flare or hashitoxicosis.

Either way, he's testing for Grave's antibodies. And he said if that is negative we will do an ultrasound. So whatever his opinion, he's doing all the right tests so hopefully, I will have it confirmed what is going on in a few weeks.

Thank you again for your reply. You've been so helpful. I will continue to keep you and the forum updated! :-)

greygoose profile image
greygoose in reply to MiniMum97

Well, as long as he's doing the right tests and not jumping to conclusions, that's ok. :)

MiniMum97 profile image
MiniMum97 in reply to greygoose

😊

Boohbette17 profile image
Boohbette17

Thanks for posting MimiMum97 , from what little I know about Graves, ( Im a Hashi girl) it seems it's harder to live with so hopefully its not Graves ... hugs🌸🤗

MiniMum97 profile image
MiniMum97 in reply to Boohbette17

Sorry for delayed reply, been v poorly. Yes I hope it's not Graves too for the same reason. I have two cousins with Graves and they have really struggled. One of them unexpectedly had a thyroid storm and nearly died! Thank you for the hugs, I really need them. Feel exhausted and struggling to concentrate this week, dragging myself through work as I've had too much time off sick already, and am worried about possible Graves. Feeling v low.

Boohbette17 profile image
Boohbette17 in reply to MiniMum97

No timetable needed for me dear! Im glad your family member did not die- goodness!🙏 If I may suggest, I know it sounds daunting but see if you can get lost in a fun /sweet movie like Music & Lyrics & get some well deserved spirit energy in😊🌺💝🌷🐣🐰🤗❤️🐥🌹💐😃

google.com/search?q=music+%...

Espisnowwoman profile image
Espisnowwoman

Chanced are he is right. You have family history and you have to be born with the gene. Trauma or stress sers it off. I have graves and iam the only one on both sides of my family who has it but their is thyroid in my family.

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