Stopping T3 Cynomel - how long before suppresse... - Thyroid UK

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Stopping T3 Cynomel - how long before suppressed TSH likely to increase?

RoadTrippin profile image
5 Replies

Hello

I've managed to avoid a medication review with my GP for a couple of years, as I worry they'd want to reduce my Levotyroxine due to suppressed TSH! I now have to have a telephone appointment! GPs are aware I take Liothyronine (half Cynomel tablet) as well as 100mcg Levo (same dose for about 8-9 years) and even agreed to test FT3 levels this year and last.

I've decided to stop T3 and intend doing a Medichecks test to see where I am on just 100mc Levo, but obviously want to do this for minimal time possible to see results as I know my energy levels will plummet. Has anyone done this and seen TSH levels climb after stopping T3? If so how long do I need to leave after stopping T3 before testing? I know T3 half life is about 2 1/2 days, but unsure how long TSH takes to react to changes of hormones

I know I have ammunition if my GP freaks out at my suppressed TSH and tries saying I'm over medicated, as I'm not, with levels around mid range, and my resting heart rate has always stayed low, averaging 55bpm and bone density test done privately before starting HRT was commented on as being "fantastic, never going to be a concern" latest NHS results:

TSH 0.01 (0.35- 4.94) FT4 12.4 ( 9.01 - 19.05) FT3 4.9 (2.63 - 5.70)

Would I be better off with more Levo and less T3? I get fatigued later in the day but then many people do with Hypothyroidism. I have Hashimoto's; both antibodies raised, and have followed GF and supplement advice on here for last 2 years.

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5 Replies

It's impossible to say if you need more T3 or T4 or both. Your FT4 levels are lower than your FT3 levels but that is not uncommon when on T3. Having said that, it looks like there is room to raise both your free Ts until you rid yourself of all symptoms. However, I'd not raise both at the same time or you'd not know which one was working if you suddenly felt better. I'd be tempted to try to add a little T3 first (since it's the active hormone) and see how you feel. If you feel slightly hyper, you could always cut back on it and add a little T4 instead.

It's all about trial and error.

But, as I said, since you take both T3 and T4, don't freak about about having low FT4 levels as T3 can lower T4. I'm on NDT, my FT4 levels are at the very bottom of range, and I don't have a single hypo symptom.

Re your TSH...it depends. In some cases, it never normalises after being suppressed for years. I have had a suppressed (<0.01) TSH for 15 years. Last year I went off NDT and back on T4 to try to normalise it ahead of a doctor's visit. After eight weeks on T4 only, my TSH remained as low as ever. That's when I did some research and found out that a TSH that has been suppressed for a long period of time may never normalise even if treatment is stopped. It has to do with the HPA axis becoming deregulated, apparently.

I know what you mean about wanting to "please" doctors by having an in-range TSH that they will approve of (even if you're still symptomatic...!)

Nanaedake profile image
Nanaedake

My TSH rose within a few weeks when reducing levothyroxine. I have never taken T3 so can only comment based on levothyroxine. My TSH had been suppressed for quite a few years so it could just be an individual thing. Probably if you stop taking T3 your TSH will begin to slowly rise but would probably take 6 to 8 weeks to show the full impact. Its difficult to say what the daily or weekly incremental rise will be although there might be some reaearch if you hunt for it.

greygoose profile image
greygoose

Impossible to say. Probably different for everyone, but for myself, when I came of all thyroid hormone, within 3/4 months, my TSH was over 30. And it had been suppressed for several years - can't remember how many exactly, but something like 8 years. Yet, you see people on here with TSH suppress for much less time that doesn't rise at all. I always say, the TSH is totally unpredictable.

Oh, and the half-life of T3 is about 24 hours. :)

blondpalomino profile image
blondpalomino

Hi,

I was on T4/T3 combination for 20 years, TSH suppressed, usually measured 0.004.I came off T3 at the request of my Doctor (due to the cost of T3) to see if I would be o.k. on T4 alone.Needless to say I wasn't as I have no thyroid,and had to go back on the T3 after 3 months,but it made no difference to the TSH level at all during that time.

jgelliss profile image
jgelliss in reply toblondpalomino

It takes months for the TSH to respond and to come back up after lowering thyroid meds .

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