Mounjaro for weight gain after thyroidectomy - Thyroid UK

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Mounjaro for weight gain after thyroidectomy

Rfranzoni profile image
32 Replies

Hello!

I am 4 months post op from a TT. I have definitely put on weight, about 25 pounds. MY endocrinologist told me to be mindful and watch my diet and exercise. I think it is a little more complicated than this when it comes to thyroid imbalance. My GP disagrees with my endo, saying that a little bit of help is needed when it comes to weight gain associated with thyroid imbalance.

My question is: for people who have experienced weight gain after a TT, did you find that your weight started to return to normal after your thyroid levels returned to normal? OR did you hang onto the weight? I am a very active person. I am mindful of what I eat, and I exercise 5-6x per week, so I think my endo is being a little bit insensitive with how he approached the weight gain. He said some weight gain is common, but not alot, which I disagree with as I know many women who have gained 40+ pounds after a thyroidectomy. I asked my GP about mounjaro and she thinks it could be really helpful to kick start some weight loss after this.

I am just very interested to see what other people have experienced in terms of weight gain after TT and if they have take mounjaro specifically and what their results were with it.

Thanks!

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Rfranzoni
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32 Replies
Rfranzoni profile image
Rfranzoni

Also, just to add my TSH was 18 back in the beginning of September. It was 7.4 when I got my blood tested in October, and in two weeks I will be getting it tested again.

My thoughts:

Mounjaro is a diabetes 2 drug also causes weight loss. A new drug with the same active substance in higher doses was just approved in the US under the name Zepbound . It´s the same system you see with Victoza vs Saxenda and Ozempic vs Wegovy: one is for diabetes 2, the other for weight loss but they contain the same active substance, only at different doses.

There are several reasons they work for weight loss. (1) they slow down the emptying of your stomach, making you feel full longer, (2) they reduce blood sugar by increasing insulin production (which is supposed to reduce cravings) and (3) they lower leptin resistance which is said to be common in obese people (as leptin is made by fat cells). High levels of leptin can make weight loss very difficult.

The problem if you are hypothyroid is that it tends to cause weight gain due to lower basic metabolism and, if your metabolism is low, going on a restrictive diet will lower your metabolism even further. It´s a vicious circle. Also, if your metabolism is low, you are not likely to lose weight anyway because you do not burn calories as effectively as metabolically healthy people do.

I have looked into these drugs. I have been a member of a US forum where they are discussed. Some members are hypothyroid and have not had the same success as others, especially on Synthroid (levothyroxine).

My own experience is that, in order to lose weight, thyroid hormones need to be optimised. What "optimised" means is individual, but T3 is the active hormone and you need enough T3 to be able to lose weight. With low T3 levels, you are not likely to lose weight even if you use Mounjaro or a similar drug. These drugs do not affect your metabolism, they simply facilitate weight loss by allowing you to cut calories without feeling hungry. Again, the problem may not be that you are overweight because you overeat, but because you are hypothyroid. If you retain fluid, as most hypos do, you will not lose weight on Mounjaro.

Another problem with these drugs is that people tend to regain the weight lost once they go off them. Some doctors now recommend taking them long-term, even permanently, but switch to a lower dose for maintenance after weight loss. The problem is these drugs are very expensive, and whether or not they are covered by health insurance varies from country to country. In some countries, you need a BMI over 30 or 27 if you have side effects such as high blood pressure, in all countries I know of the diabetes 2 drugs are covered but not the weight loss drugs (and, in some countries, pharmacies require your doctor to certify you have diabetes 2 to buy the covered drugs (Victoza, Ozempic, Mounjaro). This is because non-diabetics have used them for weight loss, and this has lead to a worldwide shortage forcing patients with diabetes 2 to switch to other drugs. The weight loss drugs are more expensive as they contain a higher dose of the active substance. To give you an example: where I live, a one month´s supply of Saxenda costs €500 and a one month´s supply of Wegovy €700. When I say "a month´s supply", I refer to the final dose that you reach after several weeks of titrating.

Another problem discussed on the weight loss forum is that some users experience that, after prolonged use (a year or so), the drug seems to lose its effect and the cravings return with a vengeance.

The producers of these drugs also stress that you will need to be on a diet, exercise, and take responsibility for your weight loss; the drugs will only make it easier. If your metabolism is not working properly, for instance if you are undermedicated, you are not likely to lose weight even if you follow all their advice.

Your TSH should be 1 or lower on levothyroxine only. You are still serioulsy undermedicated so hypothyroid, and you are not likely to lose weight on any drug until that changes.

As for normal thyroid hormone levels after a TT, they do not look the same as in healthy people. If on levo only, you will likely need higher levels of FT4 to have enough T3. But, if you no longer have a thyroid, you are also likely to need to supplement T3 as your own thyroid gland makes some T3. Losing out on that T3 will affect your metabolism negatively and make weight loss more difficult. If your T4 to T3 conversion does not work properly on top of it, it´s a lose-lose situation.

I´m sorry to say that your endo does not seem very knowledgeable about thyroid matters. If she was, she would know that "watching your diet and exercise" will not help if you have thyroid hormone deficiency.

Rfranzoni profile image
Rfranzoni in reply to

Thank you for your response. My T3 and T4 levels are luckily normal, so the only thing that is not is my TSH level. However, I have been on 137mcg of Unithroid for the past few weeks, and in two weeks, I will test my blood again and see where my levels are. My main concern right now is just getting back to a healthy weight. I have spoken to people who took Mounjaro after weight gain from a TT and have had great success. However, I will probably be looking at other endo's for knowledge on this topic specifically since mine did not really help much in that department.

Brightness14 profile image
Brightness14 in reply to Rfranzoni

The only time I ever put on weight was after my TT when I was put onto Levo and I gained about 10 lbs in a few weeks. As soon as I started NDT and my FT3 was higher the weight dropped right off again. This was 8 years ago and I have never put on weight since and have never been on any type of diet either. Low FT3 causes weight gain.

Rfranzoni profile image
Rfranzoni in reply to Brightness14

Thanks! What is NDT? (sorry I am really still learning alot of terms)

Brightness14 profile image
Brightness14 in reply to Rfranzoni

Natural desiccated thyroid. It's from the Pig thyroid gland and contains T4, T3 plus other things. Some patients do very well on it.

greygoose profile image
greygoose

The trouble with doctors (well, one of them, anyway) is that they automatically assume that weight-gain is fat due to over-eating/lack of exercise. But, when you're hypo this is often not the case. The weight-gain is more likely to be water-retention, and no amount of dieting nor exercise will get rid of that.

It's not just people who have had their thyroid removed that suffer from weight-gain. It's the majority of hypos whatever the cause of their hypothyroidism. And a lot of doctors have this weird idea that being hypo only means as small gain in weight - one endo quoted me 4 kilos! And, as you say, that's just not true. You can put on a hell of a lot more than that - and do it whilst battling with complete lack of appetite, hardly eating at all.

You would thing that lack of appetite would help you lose that weight, but no, not at all. In fact, it can make things worse because you need quite a lot of calories to convert T4 to T3, so if you don't get them, conversion suffers, FT3 levels drop, you become more hypo and put on even more weight! But that is something that doctors just cannot get their tiny heads around. They are so rigid in their out-look, I'm afraid, and start quoting 'calories is vs calories out' at you. Which, in the real world, is not how it works at all. :(

in reply to greygoose

I had a doctor once told me weight loss should not be an issue because "I still had a thyroid". Well, it turned out to be atrophied, so not a big help anyway. But this doctor seemed to think that still having a thyroid will make weight loss easier, no matter how little it is working...I will never understand the logic of some doctors.:-(

greygoose profile image
greygoose in reply to

That's because they don't have any logic. They just say the first thing that comes into their head. :D He said that to you, but he could say the exact opposite to someone else, depending on what suits his purpose.

Rfranzoni profile image
Rfranzoni

Thanks for the response. It is definitely very frustrating! My GP is on my side and disagrees with my endo. She fully understands that when you have imbalanced thyroid hormones, weight loss is much more complex than just diet and exercise.

I am a little confused at the T3 and T4 aspect of it all as I am not really familiar with it. My T3 and T4 levels were perfectly normal on my blood work. The only thing abnormal was my TSH, which has been high. However, the last time I got blood work, I was at a subclinical level of hypothyroidism. I read levels 1-4 is normal, but someone on here said it should be 1? I guess I am still figuring all of this out.

in reply to Rfranzoni

Sorry, but you do mean by "normal"? Just anywhere in range? There is normal, and there is optimal, and they are not the same.

I agree with everything greygoose says about ignorant doctors and the difficulties losing weight caused by low metabolism and fluid retention.

Just remember, even if you do manage to lose weight on Mounjaro, you are likely to come off it one day, and then you will need to deal with weight management with hypothyroidism.

I wish you every luck, and if you do decide to try Mounjaro, it would be interesting to hear about your experience.

Rfranzoni profile image
Rfranzoni in reply to

Yes, my goal here is obviously to lose the weight I have gained but also for my thyroid levels to return to optimal ranges. My endo has not really educated me on where these numbers need to be and what they all mean so that is why it's been really confusing for me. MY main question was do people see a return to healthy weight their levels have evened out?

in reply to Rfranzoni

My own experience after living with hypothyroidism for 25 years is that it is more difficult than before you lost your thyroid. Not impossible, but difficult. Many people need to add T3 or take NDT to get symptom-free as T3 is the active thyroid hormone. And, once again in my experience, the weight does not just magically come off once on thyroid hormone replacement. If on levo only, you need to be careful not to affect T4 to T3 conversion. So, you need a sufficient amount of calories, meaning Weight Watchers may not be right for you. You may have to take it more slowly.

I´ve done a lot of reading since my diagnosis. I don´t believe everything I read, but I have tried out some theories and found them to be true in my case. For instance, that rigorous exercise does not make me lose weight (it did before I had a thyroid problem). It increases cortisol and too much cortisol can mess with T4 to T3 conversion, which is why I say that traditional weight loss advice that works for euthyroid people may not work for hypos. Also, I believe that a hypothyroid body (and by that, I mean a body with low T3 levels at cellular level) will hold on to its fat stores to ensure survival; that is how the human body was genetically designed.

greygoose profile image
greygoose in reply to Rfranzoni

If your TSH was high, then your FT4/3 were probably too low for you. Perhaps at the bottom of the range? Perhaps high FT4 and low FT3 because you're a poor converter? TSH is not a very good indicator of thyroid status.

Yes, a 'normal' (euthyroid) TSH is around 1. 2 shows that your thyroid is struggling. And at 3 you are technically hypo. A TSH of 4 is in no way 'normal', no matter what doctors think.

However, hypos often need their TSH lower than euthyroid levels because they need their thyroid hormone higher (TSH is a pituitary hormone).

A euthyroid FT4 would be around mid-range, with the FT3 slightly lower than that. Hypos often need both of them to be around 75% through their ranges, or even higher, which will inevitably push the TSH much lower.

userotc profile image
userotc

You've had good replies so far but I don't think you've been alerted to the serious side effects of the drug your GP sadly unsurprisingly suggests, see link below.

But your responses indicate you realise that the medics are generally offering poor advice...endos offering weight-loss advice takes the biscuit for me (no pun intended).

If, after optimising thyroid, you need to lose weight, see a qualified Nutritional Therapist specialising in it...not an untrained endo or other medic!. I can send you NT options now or when you reach that point eg save my details for now.

healthline.com/health/drugs...

in reply to userotc

Isn´t there a risk an NT will focus on calorie restriction and low fat diets?

userotc profile image
userotc in reply to

Not an NT that understands how SUSTAINABLE weight loss really works.

From the list I have, you can select based on key factors you want. I suggest testimonials that indicate weight was not only lost but sustained. Whilst calorie restriction could achieve that in theory, in practice its very difficult as Weight Watchers demonstrates!

Rfranzoni profile image
Rfranzoni in reply to userotc

Thank you! I appreciate it. I live in the states so one of my options was going to maybe find a nutritionist who is very skilled and trained in thyroid imbalances and weight gain in relation to that.

userotc profile image
userotc in reply to Rfranzoni

See options below. If difficult to select option(s) using factors including the reference to thyroid/weight loss, Id suggest contacting the NT(s) before proceeding. Good luck if/when you contact them but feel free to private message me later eg if you address thyroid first (which NT may suggest). I may have other options then too.

theanp.co.uk/member-directory/

in reply to userotc

I don´t think you know anything about thyroid disease. There is nothing in your profile that indicates you have it. So why are you really here giving "expert advice"?

userotc profile image
userotc in reply to

Whilst I really dont need to answer your nasty comments, I joined the thyroid section of HU in a search for help for the illness outlined in my profile and my thyroid results have been below normal.

And if you find any comments from me where I offer "expert advice" on thyroid, do let me know because I avoid that despite learning quite a bit over the years on here and elsewhere. And I stress that Ive been on here 7 years longer than you (!)

I wont answer any further comments from you.

in reply to userotc

You just did offer advice on how to lose weight with hypothyroidism without resorting to weight loss drugs, or rather said you can recommend specialists with such knowledge. You also said that nutrition is key to weight loss even with hypothyroidism, and asked the OP to PM you for further options. Looking at your previous posts, I see you are all over the place, asking questions about a lot of conditions, some of which have remained unanswered (probably because people have no knowledge in those areas). Not like most people here who have thyroid disorders and focus on that.

I doubt the number of years someone has been a member has anything to do with their actual knowledge and experience. This is not a school where you graduate. You also have no knowledge of my previous knowledge and experience.

RedApple profile image
RedAppleAdministrator in reply to

TiredThyroid50, 'I don´t think you know anything about thyroid disease. There is nothing in your profile that indicates you have it.'

It is not compulsory to actually have a thyroid condition in order to be a member of this forum. We sometimes see people who are searching for answers to their own, or a family member's health issues, and along the way, they educate themselves about possible alternative approaches to deal with symptoms that may or may not be caused by thyroid disorder. They then share what they have learned with others.

in reply to RedApple

Yes, I know that, but there is no indication of that in this case. My comments concerned statements about weight loss in hypothyrodism that are not supported by most hypothyroid people´s experiences. I also questioned the advice to consult a nutritionist, given that many of them are inclined to tell us we need to eat less and exercise more, and/or take high doses of iodine to support our thyroid glands. Been there, done that. The replies to follow-up questions are rather vague, instead of sharing the knowledge this person has possibly gained (and that could potentially be helpful to others).

Batty1 profile image
Batty1

Your Endo is a putz just like all Endos and the weight gain for a lot of us after thyroidectomy is real and should be taken serious by the Endocrinologist but as your finding out they don’t give a rats A$$ about you once your bloodwork is deemed “normal” …. Im not familiar with the drug your talking about but personally that could actually backfire on you simply because it’s a bandaid to a problem and once you stop what backlashes could you suffer with “more” weight gain or something else.

Rfranzoni profile image
Rfranzoni

Yes, definitely. I didn't feel that he was really taking what is clearly a side effect of my thyroidectomy seriously. It was more of a "so what did you do to gain all of this weight" mentality, which as we all know, is clearly not the problem when you are dealing with thyroid imbalances or thyroid removal. What confused me was when he said that people who remove their thyroids can gain some weight but not alot, when I have spoken to 10+ women who have gained 40+ after this kind of surgery.

in reply to Rfranzoni

That´s a common misconception among doctors; that hypothyroidism only causes modest weight gain (5-10 lbs at most).

userotc profile image
userotc

A good Nutritional Therapist ought to propose a protocol based on the individual patient - such a personalised approach is a key differentiator to standard medical practice. This should apply to patients with thyroid disease (as well as not) but should also apply to several other personalised criteria.

I do know that satiation can be addressed without focusing on low carb and/or IF and both my parents have benefitted from that (but both euthyroid).

in reply to userotc

Yes, you´ve said that now at least twice. How about actually sharing the information on the forum?

RedApple profile image
RedAppleAdministrator in reply to

As userotc has said, 'based on the individual patient', what 'actual information' is it you want him to share on the forum?

in reply to RedApple

As I´ve already said, to tell people how to lose weight with hypothyroidism, without having to use low carb diets or IF, and without hunger, and without the side effects of prescription drugs. That sounds like an impossible equation for many thyroid patients. This member claims to have all the answers, but won´t give any details.

I am leaving this forum now as I think there are a few strange people here who create a hostile discussion climate. I have seen some older posts here where members are viciously attacked, yet no administrator comes to their rescue. It´s interesting to see how much support this member gets without even being attacked, just challenged.

RedApple profile image
RedAppleAdministrator in reply to

TiredThyroid50 'I have seen some older posts here where members are viciously attacked, yet no administrator comes to their rescue. '

This is a very busy forum, and it's more than likely that many comments go by unnoticed by the admins.

There is a REPORT button at the bottom of every post and relpy. If you see something concerning, please just hit that button. This will alet the admin team who can then deal with anything they consider is untoward.

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