Low, now high? WT....?: Ok so I posted a few... - Thyroid UK

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Low, now high? WT....?

Murphysmum profile image
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Ok so I posted a few weeks ago about a sudden drop in my T3 level. I surmised this was caused by either a change in brand or me doing two fasting days, or maybe a combo of both.

Anyway, I took 5mcg more for about a week until I felt better, then dropped back to my normal 55mcg per day. I felt great and back to normal for about 3 days before feeling off again. All the hallmarks of low hormone for me: sudden panic attack feelings, waking at night, faint-ish, tired and sluggish. I also have heavy limbs which can be and over or under symptom for me but more recently has been if I’ve been under treated and my eyes get bad if I’m over so I was a bit confused.

So cue another blood test (which btw are taking ages, I can only assume covid testing is to blame) and lo and behold, I’m over! I mean, wtf?

Looking at my previous results my antibodies were off the scale high in august so could this be something to do with it? I’m unsure what they’ve been previously, the last check I had on them would be about two years ago when they were also high.

So, I’ll drop to 50mcg and see what happens but has anyone else found this? I kind of assumed (rightly or wrongly) that if anything I need to adjust upwards going forward, not down so this has kind of taken me by surprise.

As always I know you lot will keep me right! TIA

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Murphysmum
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greygoose profile image
greygoose

If your TPO or Tg antibodies are high, you have Hashi's. So, you could very well have had a Hashi's 'hyper' swing.

However, if it was a 'hyper' swing, one would expect the FT4 to be affected, too. But that's still quite low.

Of course, there's no real way of knowing when the attack on your thyroid happened. The levels could have been higher than that, and are coming down now. So, all you can do is wait and see. Maybe even stop the T3 for a couple of days, till you begin to feel hypo again. There are no rules, I'm afraid.

Or, of course, you could just have been over-medicated. It's all trial and error. :)

Murphysmum profile image
Murphysmum in reply togreygoose

Thanks gg.

I’ll drop down for a few days.. don’t want to stop completely as I’ve only done that once early on and I felt awful!

So, if it was a hyper swing, my own thyroid (what’s left of it and I suspect not much) would increase the T4? I still struggle to get my head around it all, despite years of reading!

On an aside actually now I’m on that thought, I assume my thyroid is doing virtually nothing as I only take T3 now and for my last few bloods there’s been virtually no T4? Is that right? 🤪

Sigh, I’ll just keep plodding along. Thought I had it sussed as I had about 6 months feeling well just there. At least I know it’s achievable!

greygoose profile image
greygoose in reply toMurphysmum

So, if it was a hyper swing, my own thyroid (what’s left of it and I suspect not much) would increase the T4?

Not exactly, no. What happens is that the dying cells dump their stock of hormone into the blood, causing the FT4/3 to test high. It's not the actual thyroid producing the hormone in real time, it's what's been produced in the past. One thing I don't know, and I've never seen it mentioned anywhere - and it sounds silly said out loud! - I don't know if all the cells have stocks of both T4 and T3, or if it's T4 in some, and T3 in others. So, I'm not really sure if we should expect both to rise after an attack, or if it's possible to have just one rise - if you see what I mean. :)

Murphysmum profile image
Murphysmum in reply togreygoose

Now you say it, I remember the “dumping” thing. Gosh, I’ve read so much learning about this illness that I can’t possibly retain it all!

I do know what you mean, and I can’t say I’ve ever come across any info to that effect either. Kind of make sense though.

So can I assume from my very low T4 readings that I’m making almost zero T4? Or am I not getting this at all? 😂 It’s getting late....

greygoose profile image
greygoose in reply toMurphysmum

Your thyroid probably isn't making anything at all. Taking thyroid hormone replacement shuts it down. Plus it's probably very damaged. Your FT4 is low because you're not taking any.

Yes, it is a lot to remember - especially in our befuffled state! Handy to take notes that are easy to refer to if we have questions. We cannot possibly remember everything! :)

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