Here we go again

[Inafunk63]

So here we go on this damned roller coaster again...about two months ago I was started back on ptu (75mg) due to elevated t4 and suppressed tsh. Levels came down really quickly because after 3.5 weeks had my bloods done and t4 had decreased to 16.8 (range 12-22) TSH was still below 1 but can’t remember the exactly number. PTU was reduced to 50mg (half a tablet twice a day) and had levels checked early again this month because I could feel I was going down. My body felt heavy, like full of lead most days, I’d get up and get moving in the morning and feel like I’d need to go back to bed an hour later and I’ve gained weight. I’ve also had this awful dizziness and feeling off balance and bright lights make me feel weird...like surreal. T4 is 12 (12-22) TSH is 3.64 (0.27-4.2). Can’t believe this is happening yet again. The shit part is, when I was HYPER I never really felt poorly. I would get a little light headed if I I overexerted myself, my heart rate was a little faster and I was always warmer than everyone else but apart from that I’ve always felt ok as HYPER. I’m traveling with my kids to spend Christmas and my 30th with my dad who has health issues and mentally I just feel like I can’t go through this HYPO crap again. The hypo ordeal that made me believe I was crazy, just over one year ago has riddled me with anxiety and panic attacks and now it’s happening all over again and I just don’t have it in me to deal with it. It took me the good part of a year to trust my mind and my body again, ive gone back to college and had started feeling like myself again and now I feel like I’m gonna be thrown back to square one...Now I feel like a b***h for moaning about it cuz there’s people that are far worse off. 😩

[McPammy]

I can completely emphasise with you. Can you possibly increase your T4 meds slightly to take you out of hypothyroidism symptoms. I believe anything with a TSH 2.5 is hypo that what my Endo told me. I try to keep a TSH of 1.0. Do you have enough T4 medication to take extra. It’s about how you feel as much as the figures.

I’m really sorry you feel so bad. I know those symptoms all too well. Recently I went over medicated. I get confused and can’t walk properly. So I reduced my T3 ever so slightly but then I nose dived into what feels like being in quicksand. Not that I ever have. Or like trying to drive your car with the handbrake fully on. Difficult to describe to people who’ve not experienced it like most Endocrinologists.

I do hope you can increase your T4 to help the situation.

[Inafunk63 in reply to McPammy]

Thanks for your reply. I’m usually HYPER (graves antibodies) so I’m on thyroid blocking hormone instead of thyroid replacement hormone. Hence the problem. Essentially now I’m overmedicated on thyroid blocking hormone, which is what happened the last time.

[Inafunk63 in reply to McPammy]

I can personally relate to what you’re saying about the symptoms as well. It’s really hard to describe to someone that’s never experienced it. Feels like the floor is coming up to meet your face sort of thing, or like the pull of gravity is too much for your body to withstand and you’re just going to slump into a puddle. It’s awful 😣

[McPammy in reply to Inafunk63]

Exactly those things. They’re the sort of things I say. My partner doesn’t always get it. It’s like suddenly my body has become far too heavy to carry myself. In the past I’ve slid down walls or gone head first on the floor. It’s so dramatic. When it first happened I couldn’t understand why I wasn’t fainting I was collapsing but could speak ok and my mind was ok. A couple of times I was slurring my words though like I was about to have a stroke or having one. Double vision too.

What on Earth causes these dramatic symptoms do you know. I know it’s thyroid related but I dint know why the internal brakes slam on so hard so suddenly. Do you??

I’ve Hashimotos. Maybe yours is too much blocking of the thyroid hormones. It just gets too low and sort of runs out of petrol so to speak. Me.. It happens if I get very slightly over medicated or under medicated. So I’m on a tight rope with my meds I feel. I have a T4 to T3 conversion issue DIO2 gene positive.

[Raventhorpe]

It's a fine balancing act to get medication at the right level has endo reduced your meds since your last blood test as you've definitely gone hypo again. I had this I was on and off carbimazole for 12 twelve years but still felt better than now being hypo after RAI treatment, I have found being hypo much worse than being hyper but both are awful to deal with, do hope you can get it sorted before Christmas as nothing worse than trying to deal with Christmas and all that entails when you feel so crappy.

Sending you a big hug from someone who knows how you feel.

[Inafunk63 in reply to Raventhorpe]

Oh God love you. Sending you hugs back. Thank you for your lovely reply. Last year when I went severely hypo due to overmedication it was the most awful experience of my life. My endo has always encouraged me to go ahead with surgery or RAI but after that HYPO experience, I’d choose HYPER any day ☹️ I haven’t even heard from my endo or my gp in regards to my bloods. They don’t give a damn. I rang up to get my results and only because I’m fairly informed I knew what the results meant. I’ve gone ahead and cut my dose down to 25mg PTU(1/4 tablet twice a day, PTU only comes in 50mg). but if I was clueless about all of this, I’d be in serious trouble wouldn’t I!! It’s just ridiculous.

[Fruitandnutcase]

I can imagine how you feel. I was hyper with Graves and at the start of my block and replace treatment I was accidentally allowed to become hypo.

I can only say hyper wasn’t fun but being hypo was pretty awful too. My short experience of being hypo is what made me decide there is no way I’d want to have RAI or a TT unless as an absolute last resort.

I feel (and this is purely my own opinion) that it’s an easy way out for some doctors. Your thyroid is killed off and you are packed off to the mercy of your own GP who may or may not have a good understanding of thyroid management, who may or may not give you the correct amount of levo or whatever drugs you need to keep you feeling well and now with the problems around T3 it doesn’t even bear thinking about.

You’re not a b***h and yes there are probably others who you think are worse off than you but you’re feeling pretty awful so don’t let that bother you.

Hopefully you will be able to get back on an even keel soon (((big hugs to you)))