Mounjaro and levothyroxine

[stealthsquirrelnutkin]

Has anyone else lost more than 12 stone and then realised they need to lower their dose of levothyroxine?

I've been on 300 mcg of levothyroxine since Hashimoto's thyroiditis converted my thyroid gland to connective tissue in the early 1980s.

It took a while (and paying to see an endocrine specialist privately) to get that optimal dose. Every now and again a new GP reviews my prescriptions, overrules my decades of experience and lowers the dose. Causing me to gradually revert to frozen zombiehood until the follow up blood tests show that I was right all along, and the 300 mcg dose gets reinstated.

Over the years it must have happened 4 or 5 times, and it is so unnecessary and infuriating. So last year, when yet another new GP informed me that 300 mcgs was a very high dose, and he intended lowering it, but not to worry because a follow up blood test would monitor the change, I indulged myself in what turned out to be an unexpectedly enjoyable, cantankerous old lady melt down.

I told him that despite being powerless in the situation I was not going to accept having my decades of experience living with the condition ignored and overruled. If he insisted on depriving me of the correct dose and causing unnecessary suffering to an old lady who was already struggling with chronic pain and disability then I was going to want a lot more than the usual sheepish apology when the follow up tests proved that I had been right all along, and he had allowed his innate misogyny and ageism to cloud his judgement. He was taken aback, and then obviously decided it wasn't worth the hassle and said that since I felt so strongly about it he would continue the 300mcg prescription for another year.

For decades while I've taken 300 mcg my blood tests have always been within normal range. TSH around 2 (normal range is 0.27 to 4.2) and free T4 between 15 and 20 (normal range of 11 to 25).

So why did my latest blood test just come back showing that I'm over medicated? For the first time ever TSH is 0.2 and free T4 is 31.6.

Duh! Because I've lost 81 kg since the previous test done at the end of lockdown, and obese people need more levothyroxine, something I was aware of, but somehow the relevance slipped my mind, until I saw the test results.

I think the GP I traumatised last year has moved on to pastures new, so I'll be discussing reducing my thyroxine dose with someone new, who (hopefully) won't have time to read the notes from last year.

Meanwhile I thought I'd start a thread to remind everyone on thyroid hormone replacement tablets who has recently lost, or intends losing a shit ton of weight, that it might be a good idea to get your thyroid levels checked and reduce the dose accordingly.

A side effect of too high a dose of levothyroxine is constant hunger, so I'm really hoping that once I get the new lower dose sorted I'll start experiencing the "I couldn't possibly finish that" sensation that everyone else on Mounjaro seems to feel. I'm on the maximum dose of 15mg and I still clean my plate and could easily eat as much again, if I wasn't inputting every morsel into myfitnesspal and struggling to remain within an ever decreasing daily calorie limit.

I have 12 kg left to go before reaching the holy grail of normal BMI so I'm hoping for a boost to carry me down the final furlong.

I take NDT natural thyroid replacement meds and I can totally empathise with your experience!

I’m considering mounjaro, hence reading threads on here about people’s experiences with it so thanks for the heads up and congratulations on getting so far, especially given the excessive hunger from being over medicated. Its such a fine balancing act!

Nothing helpful to add but you sound utterly hilarious. Good on you for fighting for your health.

I lowered the dose by one third, down from 3 to 2 x 100mcg/day.

Delighted to be able to report that I am now also enjoying that amazing feeling of being full, of being able to reduce portion sizes without difficulty, and even of having to remind myself to eat at mealtimes, that so many other people describe as a side effect of Mounjaro. Hurrah!

The 11.2 kgs standing between me and the upper normal BMI range are doomed. In fact I may decide to keep going down to just below BMI 23, after reading an article in the Telegraph that said having a BMI of below 23 significantly reduced the chances of developing dementia.

Three years ago, when my BMI was 59.5 the idea that I could reverse the situation and lose the 99 kg required to reach a BMI of 22.7 would have been laughable. The laughter would have been very bitter. Yet here I am, pretty sure it's possible, and that I might manage it over the next couple of years.

Best of all is the knowledge that the NHS will keep me on 5mg of Mounjaro for diabetes, so I don't have to worry about what to do when I reach my target weight. The many other times when I have lost several stone by dieting have always been accompanied by a tooth gritting determination that this time will be different, and this time I'll manage to keep the weight off. Turns out that thanks for Mounjaro my teeth are safe, no special reserves of determination required, all it takes is the correct medication needed to keep my metabolic shenanigans under control.

How can they keep you on this injection for diabetes for life/long term when you've lost so much weight and have possibly reversed the diabetes.

Sorry I just really struggle with it.

As a private prescription prescription patient who is on pathway to remission of type 2 in the next 4 months, (no 12 stone loss for me but 4 stone over 3 years in which time the thyroxine has needed to go both up and down) I totally hear you about the levothyroxine but I found the GP/surgery apart from forgetting to do an annual review of under active thyroid in these times, possibly doesn't have to keep a watch if as me, paying private? I've been taken off Metformin and have to buy the weight loss injections under weight loss as to all intense purposes I'm moving away from being a diabetic.

Very grey areas.

Perhaps it is because I am seen by a diabetes specialist at the local hospital diabetes centre rather than the GP, so they are well informed about how GLP-1 drugs work, and why they are a long term solution to a chronic incurable illness?
If my diabetes medicine was stopped the insulin resistance and other underlying conditions would flare up again, my blood glucose would raise to dangerous levels and I would gain weight.

Keeping me on Mounjaro is similar to keeping me on Atorvastatin long after my cholesterol levels have normalised. It saves the NHS money because it prevents them having to fork out other much more expensive treatments like recovery from heart attack and stroke, or foot amputations.

I’ve just lost 10 stone on it and have my annual blood test booked in next week, will be interesting to see if I need to drop my dose too. I’ve about 7kg to go before I’ve ‘finished’ - now just need something for flappy skin !

I've only dropped a stone but my tsh and t4 were respectively very low and high before I lost weight so I'm asking to have be bloods