Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

I am trialling Mounjaro since around 6 or 7 weeks. BMI now 19.5. since beginning lost around 2-3 kg (the LDA weight gain). Will update in a few weeks.
 
Jaybee00 said:
Why are you taking it if your BMI is 19???
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I try it for ME. It is supposed to lower inflammation and is being studied for condition like ours. I experiment a lot, yes - my condition is dire and I need anything which could make me even 10% better. I am not sensitive to medication - never have side effects, but also rarely effects.

Of course I take it low dose (am titrating up to 2.5 mg from 1 mg)
 
Article in Psychology Today:

When their appetite is severely suppressed, people tend to eat whatever sounds tolerable rather than what's nutritionally optimal. This can lead to inadequate protein and micronutrient intake.

Malnutrition Is Common​

A study examining over 460,000 patients who were prescribed GLP-1 agonists found that 22% developed nutritional deficiencies within 12 months of starting treatment. Vitamin D deficiency was the most common, affecting 13% of patients within one year. But the deficiencies went far beyond a single vitamin—vitamin A, vitamin C, B vitamins, calcium, and zinc levels were also reduced.


Physical symptoms of these nutritional deficiencies can include hair loss, fatigue, muscle weakness, and slow wound healing. As a psychiatrist, I recognize that these same deficiencies can also cause psychiatric symptoms like depression, anxiety, and cognitive impairment. All of these problems can originate from insufficient vitamins and minerals.
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22% of 460,000 patients prescribed GLP-1 drugs developing nutritional deficiencies? That sounds unlikely to me. Unless maybe doctors are taking the risk of nutritional deficiencies when taking these drugs seriously and are testing and finding issues like Vitamin D deficiency that were there before the drug was started.

But, I can see nutritional deficiencies being something people with ME/CFS on these drugs need to watch out for. It's hard to prepare a balanced nutritious meal when you don't have energy, even more so if you live on your own and don't have a good income, as is the case for so many of us. If people aren't getting outside in the sun much, then the nutritional sources of Vitamin D become important.

And the symptoms of nutritional deficiencies sound to overlap with some ME/CFS symptoms, so it could be hard to identify early signs of deficiencies. I heard a dietician on the radio talking about this and recommending that people losing weight should take a multivitamin as an insurance against inadequate intake.
 
Sid said:
That's amazing, congrats! The % loss is exactly what you'd expect based on the average outcome in clinical trials of tirz.
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Thank you @Sid.
I am pretty pleased especially because of having lipoedema. That hasn't moved at all and seems more obvious because of the loss of the adipose fat. One odd thing is that I actually reached this weight a couple of months ago then the loss stopped dead; there has been no more loss even though I have not changed the dosage of tirz. I'm not sure if something metabolic happened around then or if subconsciously, I stopped working on the diet part of the process and have been less rigorous in my eating.
 
Hutan said:
22% of 460,000 patients prescribed GLP-1 drugs developing nutritional deficiencies? That sounds unlikely to me. Unless maybe doctors are taking the risk of nutritional deficiencies when taking these drugs seriously and are testing and finding issues like Vitamin D deficiency that were there before the drug was started.
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The abstract says "This was an observational, retrospective analysis of de-identified patient-level claims data from 461,382 adults newly prescribed GLP-1RAs between 7/2017 and 12/2021 with no prior diagnoses of nutritional deficiencies." To me, this implies that they didn't have pre and post tests measuring levels of these nutrients. A doctor is much more likely to test you for deficiencies after major weight loss. Low vitamin D levels, for example, are very common in the general population.

Every few months, some low-quality scaremongering study about GLP-1s comes out that then gets spread on social media gleefully by the moralising brigade. Some people REALLY hate seeing people have success with these drugs, I've noticed.
 
Binkie4 said:
Thank you @Sid.
I am pretty pleased especially because of having lipoedema. That hasn't moved at all and seems more obvious because of the loss of the adipose fat. One odd thing is that I actually reached this weight a couple of months ago then the loss stopped dead; there has been no more loss even though I have not changed the dosage of tirz. I'm not sure if something metabolic happened around then or if subconsciously, I stopped working on the diet part of the process and have been less rigorous in my eating.
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Are you tracking your calories by any chance? At the risk of stating the obvious, at the end of the day, one has to be in a calorie deficit to lose weight. For sedentary women with ME/CFS like us, maintenance calories can be surprisingly low, and those TDEE calculators online give an unrealistic picture of how much you need to be eating to lose weight under these circumstances. Also, as your body shrinks, it requires less calories to maintain. On top of that, there is also a metabolic adaptation (adaptive thermogenesis) that takes place as you lose weight (especially major weight loss like your 21% of starting weight) which is the body's attempt to regain the lost weight. Tirzepatide doesn't reverse this in humans (only rodents). So, all these factors conspire to stall our progress.
 
Sid said:
Are you tracking your calories by any chance? At the risk of stating the obvious, at the end of the day, one has to be in a calorie deficit to lose weight. For sedentary women with ME/CFS like us, maintenance calories can be surprisingly low, and those TDEE calculators online give an unrealistic picture of how much you need to be eating to lose weight under these circumstances. Also, as your body shrinks, it requires less calories to maintain. On top of that, there is also a metabolic adaptation (adaptive thermogenesis) that takes place as you lose weight (especially major weight loss like your 21% of starting weight) which is the body's attempt to regain the lost weight. Tirzepatide doesn't reverse this in humans (only rodents). So, all these factors conspire to stall our progress.
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I am always aware of my calorie intake, weigh daily and if I have a bad day calorie wise ( like yesterday- Mr B's birthday) know that I will have to lose the pound or two gain ( I had 2 roast potatoes, a little cheese sauce on cauliflower and one slice of cake that I wouldn't normally eat) quickly by very careful eating. It was relatively easy until I reached this around 21% loss. Now, this week, it will be extremely difficult.

I need to say that I don't enjoy food planning or reading about food intake so could improve my knowledge base.
I am inclining to the view that this stall has some sort of metabolic input aided by my easing off my strictness in food input in very small ways that are almost unrecognisable but which impact on it all.
I will be moving to wegovy soon, as an NHS patient, and hope to lose some more although the lymphology Consultant estimated it might only be 2-3 kg. I hope it will be more. I am worried about the transfer but cannot afford to keep paying for mounjaro.

The lipolymphedema really bothers me now and I have wondered if it's worsening. My measurements do show a small loss but not every area is measured. I cannot face surgery at age 79 so need to put up with it. There is no NHS surgery for this condition but many women are paying tens of thousands of pounds and travelling into Europe for several surgeries to deal with it. It can regrow because lipoedema is an ongoing ( probably) genetic condition.

Thank you for your input about calories which hopefully will motivate me to be even more careful with food intake.
 
I can kind of understand nutritional issues having been in a wegovy Facebook group for a while. A good percentage of people get to be over 30 bmi due to eating very high proportion of fast food and convenience ultra processed food and have low understanding or interest of what a healthy diet is so they are on an almost vertical learning curve. Then they can continue to look for low calorie ultra processed options like packet noodles and shakes.

I’m moderate severity ME in a rather different position to that because I have always eaten a good varied diet and enjoy salad fruit and soup, nowadays im not too bad at controlling what I eat but always tended towards large portions. I do best on weight loss using batch cooked home made soup and chilli/curry/casserole portioned up into the fridge and freezer.
I have had a plateau due to losing a good percentage and am now concentrating on reducing portions down another step to make progress. I don’t count anything just go by size of portion.
 
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