Cuppa anybody? :)

Hey lovelies,

Been struggling , been up and down, in bed right now writing it. It's so easy to advise others, not easy to do it yourself.

I was just advising someone to lower Levo to get t3 up. And then a lightbulb switched on above my frizzy head I was wondering why I feel overdosed (and underdosed at the same time) and I get it now! Maybe this will help somebody...

I'm overdosed/drugged up on t4/t3 combi 137/7.5 (quite low TSH, less conversion), I'm overdosed on 125/10 (less drugged up, more conversion), and now a little bit on 125/7.5 (more conversion, palps, anxiety). less t3 I take, more t4 goes up, tsh goes up, better conversion. This happens 2 days after lowering t3 on the dot.

Ultra fine line. Less is sometimes more. Now I know 100% I need to reduce Levo again to make more space for t3. For once, the doctor was right lol 😀 big hugs, and aren't we all so unique with thyroid dosing!

[greygoose]

Did you read the reply I gave to LisaG28?

I'm not entirely sure your theory holds water. Although, I confess I am having a bit of trouble following your reasoning. And, I think it would only hold true to a certain extent. A higher TSH does not guarantee better conversion.

There can be lots of reasons why you have hypo and hyper symptoms at the same time - one of them being that a lot of symptoms can be both hypo and hyper. And another reason is that the exogenous hormone you take is not distributed evenly, so some cells have too much whilst others not enough. And yet others may have none (receptors still shut down). And, it's the hormone that gets into the cells - or doesn't get in - that causes symptoms. It doesn't do anything in the blood.

[Hidden in reply to greygoose]

I did see it

This is just a theory, but I agree of an uneven distribution too, it definitely happens, experienced it myself

It doesn't guarantee a better conversion, no, vitamins all come to play and other factors, but it's worth giving it a shot. We can't measure what is in cells unfortunately.

Trial and error!

Personally I never get palpitations when I'm underdosed, even when my both ft3 ft4 were non existent. However, a slight overdose and I'm on - anxious, shaking and hugging the toilet

[Hidden in reply to greygoose]

Maybe since t3 decreases t4, when I decrease t3, my t4 goes up and gets converted? That would make sense. Even if there is no evidence on conversion vs TSH impact.

[Lalatoot in reply to Hidden]

This hypo levo and t3 juggling act is a nightmare. Sort of like having 2 5000 piece jigsaws mixed up in the same box and no pictures to help you rebuild them!!!! Keep going you'll get there.

[Hidden in reply to Lalatoot]

This is the best analogy!!! And you feel like you're doing it blindfolded too! Thank you, and you too, we need to get there!!! 💪

[greygoose in reply to Hidden]

But, does your TSH rise when you reduce your T3? For some people, any amount of T3 will suppress the TSH, so they'd have to stop T3 altogether. Which would put them back into the position they were before they started it. It a higher TSH meant that they converted T4 better, they wouldn't have had to start T3 in the first place.

[Hidden in reply to greygoose]

It rises a bit, but it's still super low. There is definitely some relationship with t4, I feel Levo is making me unable to raise t3 adequately

[greygoose in reply to Hidden]

Because you have poor conversion. But, that's hardly the fault of the levo, the problem lies within you.

[AnneEvo in reply to Hidden]

As you say we're all individual. If you tweak your dose to where YOU feel better that's a good thing. Maybe only you've been on what you feel is the correct dose for a longer period will you really be able to tell. Good luck 🙂

[Boohbette17]

Just sending a hi & hug cupofcha 🌸😃 I've accidentally have missed Levo doses & notice a change for the positive before the bad. I cant say its something one should do however. That said I get your thought process.

[Hidden in reply to Boohbette17]

Yeah, I tried few different things, like missing a dose or two, but it's not working. I think I might be going through a flare. I have decreased my Levo from 137 to 125 about 4 weeks ago now, but my levels are not low, so must be a flare or a bit too much hormone x or I increased t3 too fast (I think now I can only take 2.5 mcg increase a month, can't do 10 or 20 like some other people)

[Boohbette17 in reply to Hidden]

makes sense . hope we find our sweet spot range 🙏💞

[FarmerDJ]

You reminded me of how much I miss my morning cuppa... 20 more minutes to go 🤦‍♀️

[Hidden in reply to FarmerDJ]

Haha yay! Hope you had a lot of cuppas since you posted it

[FarmerDJ in reply to Hidden]

Plenty more but I do miss waking up and having that first one, peeves me no end having to wait an hour 😂

[Hidden in reply to FarmerDJ]

Hahahah okay, well, I have this with coffee some days, I am genuinely becoming a nicer human after my cuppa

[Ruthi]

Let's not forget that hormone replacement is a poor second best for the self produced hormone we are unable to make for ourselves!

And I suspect that there are all sorts of systems interacting to make you feel better or worse, and adrenal activity springs to mind first.

Furthermore the changes you feel after 48 hours are real, and significant, but the real test is what has changed after a couple of months. We all need to experiment to find our sweet spot, or sweetest possible, but only long term evaluation will tell you where that is!

[Hidden in reply to Ruthi]

True. And I'm not patient lol I would like to get pregnant, I'm 35 don't know how long I will need to wait!

[vocalEK]

When my doctor expressed concern over how low my TSH had become, I reduce my Cytomel dose. After the next test, my T3 had dropped from 4.2 to 2.6 (2.0 - 4.4 pg/mL), T4 had gone from 1.6 to 1.5 (0.60 - 1.70 ng/mL), and TSH had gone up -- from 0.01 to 0.02 (0.300 - 4.200 uIU/mL)

My doctor recommended stopping the cytomel "due to higher risk of cardiac arrhythmias". Then, if my TSH normalized, she would consider lowering my T4. Huh? Just watch how fast that cart drags the horse across the finish line. (NOT!)

This was my response to her:

"Let's look at how treating the T3 deficiency has affected my health.

Compare my most recent lipid panel (7/19/19) to the previous one of 3/13/18. My HDL is up by 8 points to 65 mg/dL and my triglycerides, at 90 mg/dL, are at the lowest they have ever been. My latest in-office BP measure was 112/73. My weight has dropped to less than 180 lbs for the first time in 10 years. I must credit these health improvements to the fact that I began taking Cytomel.

I don't wish to reverse these, and I also don't want to go back to being chronically constipated. I can assure you that my risks of cardiac problems are quite low. I have attached the results of an online calculator for CVD risk. Notice that the only factor about which I can do something is weight. I have good reason to believe that discontinuing Cytomel would block -- or possibly reverse -- my weight loss efforts.

I suggest we try lowering T4 to 150 mcg and stay at current dose of 17.5 mcg of Cytomel. My goal would be for my FT3 level to grow to at least 75% through the range (3.8 pg/mL). Perhaps this combination of doses will increase TSH without reducing or reversing my health improvements."

She agreed. Wish me luck.

[Coachgeorge in reply to vocalEK]

Just happened upon this while waiting on my husband. I’m another week away from my next draw. The past couple of days my heart rate is up and I’m very jittery. I’m trying to get this t3/T4 right and it’s awful. Cupofcha I feel for you. One minute it feels like I’m speeding my brains out and the next I’m exhausted to the point where I can barely speak. Wish I had an answer. Very discouraged for seven months. All my best

[Greekchick in reply to Coachgeorge]

Have they given you a beta blocker or something for anxiety to help out with your symptoms? It would really help you to withstand the bumps in the road. And a short term use of an anti-anxiety drug will not hurt you provided you don't have any medical reasons not to use one. You might want to ask so you are not suffering so much. Part of your exhaustion, I expect, is also due to the anxiety you feel - it is draining. And the palpitations can be dealt with with a low dose beta blocker (as long as you don't have asthma or airway disease). All the best.

[vocalEK in reply to Coachgeorge]

Hang in there. It is a balancing act, often complicated by the fact that both under-treatment and over-treatment can cause palpitations. Greekchick has some recommendations worth thinking about.

[Coachgeorge in reply to vocalEK]

Thanks vocalEK. I do take a small dose of Ativan to help with anxiety. This just doesn’t feel like anxiety. I really believe I’m getting too much of something and not enough of another. Just don’t know what is what. I’m hoping my blood draw points me in some direction. I’m back in bed with a heating pad, jitters, and very weak. Ugh!!

[Greekchick in reply to Coachgeorge]

But that’s the point, Coach. Whether from under or over medication, the drugs help to manage the symptoms. Ativan is very short acting and can actually cause more anxiety in some people. You might want to ask your doc for a longer acting anxiolytic like clonazepam- it might work better for you.

[Coachgeorge in reply to Greekchick]

Ativan has always helped my anxiety. My current symptoms seem more related to thyroid issues. It’s a totally different feeling than anxiety. I may have my blood drawn in the morning and see my doctor the first of the week rather than waiting until the end of the week.

[Greekchick in reply to Coachgeorge]

That sounds good. And that may help relieve some of your worries too. A few days earlier won’t make any difference to the results. Good luck!

[Coachgeorge in reply to Greekchick]

Thanks for encouraging me. I’ve been hesitant to go tomorrow. I needed a push!!! So many folks are able to adjust their meds based on how they feel. I can’t do that because I don’t know what to adjust. Hoping I’ll get enough information from the results, combined with everyone’s help do that I can have some kind of life.

[Boohbette17 in reply to Coachgeorge]

look into bis glycinate magnesium - why this form? the way its absorbed into the body is like an amino acid- not dependent on stomach acid. Magnesium plays a HUGE roll in many body functions & most of us are low . Best!!🌺🤗

[Angelic69 in reply to Coachgeorge]

I've had this too, I think that perhaps when we are experiencing a slump our T3 is not used up. Then when it reaches optimal level then we feel alive and spend all that we saved during the rest period in one crazy but normal to none thyroid patients day of activity. Unfortunately to be followed by a slump again but with the focus being on the one or two if we lucky optimal days per week.

Wish everyday was optimal.

[Coachgeorge in reply to Angelic69]

I’m overwhelmed by all of it. Thank you

[Greekchick in reply to vocalEK]

Hi vocal: So glad your doc agreed! At least she works with you as does mine, so we are lucky in that regard. Hope you feel better soon.

[Ruthi in reply to vocalEK]

VocalEK, your TSH wont rise significantly. Mine is zero I was stupid enough to allow a GP to persuade to try and see what would happen on T4 only. I really don't know why, it hadn't worked before. Anyway, after 8 weeks on levo my FT4 looked lovely. But TSH was still zero, and FT3 was about half the bottom of the range.

We agreed then that I needed my NDT!

[vocalEK in reply to Ruthi]

That's good. You got your doctor to agree with you. From what I've read in here, that's rather rare.

[vocalEK in reply to Ruthi]

You are correct, TSH is slow to react to dosage changes. I plan to wait 2 months before I retest.

[Ruthi in reply to vocalEK]

Er, no. TSH is suppressed by any medication containing T3, often permanently and becomes meaningless. Only FT3 is a meaningful measure of thyroid status. There is no way back from treatment with NDT or liothyronine.

[Hidden in reply to Ruthi]

Totally true. My tsh never recovered, that's after big doses of NDT for years

[Hidden]

I think I'm going through a flare. I have reduced my dose from 125 t4 + 7.5/10 t3 to 125 t4 + 5 t3. Will wait for some days to see if this does anything, don't want to do anything too dramatic right now. Worst case scenario - back to Levo, but hopefully not. When I take 2.5 mcg of t3 my levels go dramatically up! So I need to add 2.5 every month, not every 2 weeks like my doc told me. That's my gut feeling

[Lalatoot]

Low and slow. Trial and error. Patience. Better days will come. Endo said to me that she reckons I need a trial of 6months to a year of levo and t3 as it may take my body that long to adjust as it has struggled for so long. Hang in there. You are surrounded by others here who care.

[Hidden in reply to Lalatoot]

Thank you ❤️❤️❤️ I need turtle slow 😂 I will see what my endo says on Monday, normally skipping dose or two helps and I'm back, but not this time, so either my cells are overwhelmed with the amount of hormone, or I have a flare, which right now doesn't make that much difference I guess, same symptoms

[Hidden]

Hey all, it seems what has worked a bit already is reducing Levo, today I skipped the dose the second time and my heart seems much better. I had a call with my Scottish endo (she is really good), she told me it's definitely too much, reduce Levo by 25 down and add 5 t3. I might do it slowly, like 112.5 and add 2.5 t3, hold and then again down to 100 and add 5t3, which would bring me to 100 Levo and 10 t3. Slowly, slowly. Much prefer to be undermedicated that overmedicated! Fingers crossed this will work. Nite everybody !!!

[Greekchick]

Good luck! 🤗

[Hidden in reply to Greekchick]

Thank you 🤗

[Greekchick]

Always rooting for you that you hit your sweet spot soon! 🤞

[Hidden in reply to Greekchick]

Aw thank you Greekchick, me too. I think going to 100 t4 and 10 t3 is the right approach! My pulse is finally normal, and I slept for 12 hours, was so exhausted. How are you doing with your med changes now?