which is it?

[fiftyone]

I asked a doctor recently whether I had Hashimotos (I've been treated with levo for underactive thyroid for 35 years). She didn't know, There was nothing on my records. Is it important that I, or the doctor, knows???

[Lalatoot]

The treatment for all hypothyroidism is the same. However if you have autoimmune thyroiditis which is the term the GP may understand rather than hashimotos then it is handy to know. This is because when the autoimmune system attacks the thyroid it can result in a temporary rise in ft4 levels. This is a result of the thyroid damage. This is sometimes referred to as a flare.Knowing this helps you understand why sometimes you feel overmedicated or why your blood hormone levels are not as usual.

[fiftyone in reply to Lalatoot]

thank you. interesting. my T4 is always way above the range

[waveylines in reply to fiftyone]

Thrn they should really reduce your current dose if it 'way over.'

[shaws Administrator in reply to fiftyone]

When having a blood testfor thyroid hormones , it is recommended we get the earliest, fasting (you can drink water) test and allow a gap of 24 hours between your last dose and test and take it after blood draw.

Hashimoto's is due to you having antibodies in your blood and the following is a link from TUK re hashi's.

thyroiduk.org/?s=hashimotos

[fiftyone in reply to fiftyone]

nope. very well on current dose

[greygoose]

If you've been hypo for 35 years, and taking levo without any hitches (unexplained sudden rises in FT4) then I think it's safe to say you don't have Hashi's. I think that would have been picked up on by now, if you did.

Your FT4 may always be over-range, but that doesn't automatically mean you're over-medicated or that you have Hashi's. If you feel well then that means that that is where you need your FT4 to be in order to get enough T3 to make you well. You are only over medicated if your FT3 is over-range.

If you had Hashi's, you would have Hashi's 'hyper' swings (also called 'flares', though god knows why!), when both FT4 and FT3 would be well over-range, and TSH suppressed. But, it would only be temporary. Your Frees would come down again and your TSH would rise. So, as I said, if you have regualr blood tests, pretty certain this would have been picked up on by now. Also, after 35 years, there wouldn't be much thyroid left, so it really wouldn't matter much if you had Hashi's or not.

[fiftyone in reply to greygoose]

thank you for that info. My T3 is always high but within range.

[greygoose in reply to fiftyone]

You're welcome.

[nellie237 in reply to greygoose]

I've often seen the mention of 'flares' and wondered what they were......so, thank you greygoose for explaining. I've had Hashi's since 2007, but I don't think I've ever had a flare. My FT4 results seem to remain pretty stable. I did have an odd high TSH of 6.33 in 2012 though.

[greygoose in reply to nellie237]

A Hashi's 'flare' would suppress your TSH, not make it rise.

[nellie237 in reply to greygoose]

That's what I was saying. .......I've had the opposite 😊

[greygoose in reply to nellie237]

OK, so doubtful you have Hashi's.

[nellie237 in reply to greygoose]

TPO 633 in 2007. I guess we are all different.😊

[greygoose in reply to nellie237]

Ahhhhhhh well, just shows how wrong I can be! lol Why didn't you say that in the first place?

[nellie237 in reply to greygoose]

"I've had Hashi's since 2007" 🤣🤣😅

[tattybogle in reply to greygoose]

me too , Autoimmune for many years but never been caught in the act of 'swinging'./flare.

There's a definite Autoimmune component to my hypo . TPOab were 2499 in 2003 at diagnosis, then <3000 when rechecked , and more recently they are still over range at 195.but i've never had an identifiable swing in levels since 2003.

fT4 did rise from 100% to 240% without reason (no dose change), but then stayed around that level for over a year , even going up when dose was lowered, then eventually lowering to 180% despite dose being increased again... so unexplained flare ,yes , but over a much longer time scale than you'd imagine a 'hyper' flare from autoimmune attack could be the cause for .

I do think i had a period of mild 'hyper' lasting several months , in the year after a birth , a couple of years before i was diagnosed hypo ... So that may have been a hyper flare that went unrecorded.

So i don't think everyone who is autoimmune hypo would necessarily have flares/swings they were aware of.

[greygoose in reply to tattybogle]

There is no set time for the duration of an attack, nor the resulting 'hyper' phase. I would imagine it's different for everyone.

[tattybogle in reply to greygoose]

True .. I don't know either .there's so much basic information Doctors just don't collect evidence of .. it's no wonder they do such a poor job of treating it properly. I wish i had enough spare money to do full bloods often enough to see what T4/3 /TSH are up to when I want to know, rather than when GP does , to see whether TPOab rise shortly after T4 has risen inexplicably , etc even to see whether any of my thyroid still exists ... that sort of thing .. it's not rocket science.. and we'd learn so much more like ... how long can hashi's flares last for...

[greygoose in reply to tattybogle]

Even with exstensive research, I'm convinced the answer would remain the same: it varies from person to person.

To know if your thyroid still exists, you'd have to either come off your hormone, or have an unltrasound. I don't think doing bloods will tell you that whilst you're still taking thyroid hormone replacement.

I was told that my thyroid was dead when I was 61. For reasons I won't go into here, when I was 68 I did just that. I didn't take any hormone (T3 only) for six months. If my thyroid had really been dead, I would have also died, but it stepped up to the mark and made enough T4 to keep me alive. But my TSH was 48! Much, much higher than when I was diagnosed, even. Quite what it's up to now, I have no idea, and frankly, I don't care very much.

[fiftyone]

My TSH has been suppressed for years. 0.005