Anybody gained their appetite back from getting the right dosage?

[Ocean_19]

So recently this summer, my appetite decreased and I felt unwell and now that I’m taking the right dosage of levothyroxine, I’m hoping to get my appetite back. Has this happened to any of y’all?

[MyOrangeDog]

I felt really unwell about 18 months ago and had absolutely no appetite. I’m slim anyway so losing just a bit of weight I looked awful. It was very worrying because just the thought of food and sometimes even the smell made me feel nauseous. I was told I was borderline hypo. I had to plead for something, anything , and I was eventually given levothyroxine but I guess it took a couple of months before my appetite was anywhere near like it was so give it time. In the interim I found it easier to eat high fat calorific food line nuts as I got calories in me without too much effort. Most people with under active thyroid seem to gain weight, I think we are in the minority. Good luck and try not to be too anxious as it will just make it worse in my experience.

[marvalrus in reply to MyOrangeDog]

Have been having the same issue, I too am on the slim side and can't afford to be losing any more weight. At what point were you able to gain any back? I'm still trying to hold on what I have and gaining is a real problem. I'm still not right thyroid wise. I too get nauseous as site and smell of food. Some days are better. I also developed a newfound jitter/anxiety feeling like adrenaline but really not sure what it is, and wonder if it contributes to the weight loss. I did have Fractional Plasma Metanephrines tested and the Normetanephrine was elevated but not enough to be a concern. Not sure what ranges are good for if being over the top is no big deal. Do you get these jitters as well?

[MyOrangeDog in reply to marvalrus]

Yes! I also got the anxiety issues. I’ve always been a worrier but it went up to another level. I thought with that and the nausea, losing weight, feeling sick and lethargic plus other odd aches and pains is different parts of my body I was literally on the way out! I was given 50mg levo which made my heart race like hell snd was scary. I was under 60 years old so it should have been a good fuse to start in but it wasn’t . Ended up on 25mg every two days snd built up from there. However, please just hang in in there. It does take time; I would have the odd day where I’d actually feel slightly better. These days became mire frequent as time went in but I guess it was several months before I could honestly say I was more or less ok and began to actually want to eat instead of forcing myself. I chose high calorie stuff even if it was full of sugar snd fat; anything to keep what weight I had as it would hopefully only be a temporary thing. I never ate nuts much before but I ate them as they ate calorific, mackerel ( yuk) and meal replacement drinks. Then I made my own smoothies with a protein powder. A drink was slightly less revolting than good at the time. Good luck snd try not to worry.

[marvalrus in reply to MyOrangeDog]

Doing the same, making smoothies, using a hydrolyzed protein powder, Boost drinks (which taste really good but make me feel lethargic for some reason)so I drink at night. I'm mid 50s and yes, I have been feeling like I'm on my way out. I was holding steady at 50 levo, (used to take 75 but docs told me to drop it cuz my TSH was too low). After being on 50 I was feeling horrible, my head so messed up but had to keep taking so I could get a surgery. Later I upped it to 62.5 and felt better, but still not right. I got closer to 75 and felt better but still dealing with raging lightheadedness. My blood sugar is all over the place. Today I read that we need a good FT3 to activate our insulin receptors, that was interesting. blog.davincilabs.com/blog/w...

I was given 25 mcg but it made me feel very bad, mentally. I felt extremely out of sorts. I was better off on none. I put myself on 50 and have been working my way up to 75 for weeks. Getting more levo did help the appetite return a little, but I have other symptoms as well, and I'm to the point where I can't deal with it anymore.

All the ups and downs of Levo and what is apparently high cortisol on a saliva test, normal on blood test (mid range) and I'm sure it's the adrenals giving me the jittery anxious moments. I wake up with it and it's awful. This is a whole new symptom for me and I don't like it. I feel like and look like I'm hyperthyroid but I'm not at all. I really don't understand what's happened, but have concluded that thyroid problems can really mess you up.

I feel if I don't get out of this funk, it will def lead to the end of me somehow. My doctor left the practice I've been going to for about 4/5 years and the new person is a Nurse Practioner. She's good but it's just not the same. Now that I've run into a problem, she's not being too helpful. She's really into 'supplements' but I'm not on board with all that. My iron was 70 last lab and I asked how much should I supplement, she said none, she likes it around 70. What? 70 is not even half the range. So IDK, I feel I need to find someone to help me through this.

So helpful to see someone post about this particular subject of no appetite. It's not that common of a symptom but yes, I've seen a few other posts on here about it, so it does exist. I feel like the levo is contributing to my fast metabolism and maybe I really need to let it go to get some weight back on. My GP said if I don't start gaining he wants me to get a tube in my stomach. I'm holding steady where I'm at, I just can't gain.

[SlowDragon Administrator]

Looking at previous posts you are only on 50mcg and only just increased to this very recently

It takes 6-8 weeks minimum to get use to each dose increase

Bloods should be retested then. Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Likely to need further increases over coming months

How much do you weigh in kilo

[Bookworm63]

I certainly think for some thyroid sufferers that it does affect appetite. I've just had a similar experience to you. My appetite went completely! Started off with severe nausea which after three weeks I put down to lactose in thyroid tablet. Nausea disappeared as soon as I stopped medication but appetite didn't properly come back until new tablets (Aristo) were established. I didn't realise how much low thyroid could affect my digestion until recent events. I think I'm undermedicated and am going to try and get an increase after next blood test. I used to think it was IBS that made my stomach so sensitive but recently I found I get bloated if I try to do too much activity after eating especially lunchtime. I'm increasingly of the opinion that my body wants to rest after food to digest. It can't do exercise and digest at the same time. It's one or the other. I hope your appetite does return soon, I found it really distressing not being able to eat much and not knowing what to eat. The sad fact was it made me think about food all the time as I knew I had to eat something.

[gabkad]

The same thing happened to me during the summer of 1996. I was only on 100 mcgthyroxine and had gone through a few weeks of super stress. I lost over 15kg in only

two months. My doctor was getting me in every week to weigh me because the weight was coming off so fast.

I think my adrenals were probably pumping out adrenaline which will ramp up the sympathetic nervous system. A person can't digest food when in fight/flight mode and appetite disappears.

The adrenals compensate as much as they can for low thyroid.

It's probably not too common since most people seem to gain weight when hypo.

[marvalrus in reply to gabkad]

Exactly what seems to be happening to me right now. I'm considering just dropping the levo since it must be only adding to high rate of metabolism. I had a recent cortisol saliva and it showed high normal morning and every point after that high as well. Blood labs are normal mid-range. So I really don't know what to make of it. But the weight loss is concerning and really scaring me.

[gabkad in reply to marvalrus]

It could get worse if you stop the thyroxine. You probably need a dose increase otherwise your adrenals will burn out. Mine did. My cortisol went so low it wasjust above an Addison's diagnosis. And low cortisol is even worse than low

thyroid. Both together is evil. Been there.

[marvalrus in reply to gabkad]

Yes, I've wondered, because I've already done this a couple times, taken off Levo by two different endos and appetite tanked. That's why I held steady on 50, now up to 62.5, and 70 for the past week. But my metabolism is in high gear. I was shocked to see the saliva test showed high cortisol. I mean it is counter to what I've been in the past. I've now done a new test, ZRT, and will have to wait a couple weeks most, for the result. Sigh......yes, I do know the low cortisol/low thyroid combination, and agree it is hell, or evil, whatever you want to call it. I have one adrenal gland, the other was removed from an adenoma. So I was put on Cortef and was never able to taper. Until now. It seems as if my adrenal gland woke up and it's going haywire. IDK, though. Will have to wait for my ZRT result. Getting a blood lab tomorrow. I seriously believe it is the hypothyroid state that contributes to loss of appetite, though. I mean if I have high cortisol, I should be gaining weight not losing.

[gabkad in reply to marvalrus]

What is ZRT? You probably also are pumping adrenaline which reduces appetite.Nobody wants to eat when their adrenaline is high.

[marvalrus in reply to gabkad]

Oh wow, really? Yes, def have some adrenaline going on. Didn't realize it subdues appetite. ZRT is a saliva testing lab in the US. Thank you for this info. The NP says she too (like the two other endos) wants to take me off levo and help out the adrenal first then go back. Sounds good, because Levo gives me awful symptoms in my head, but it's hard to think to go off and build back up. It's been a real tough time for me these past 5 or 6 months. have never had such a time. I wish there was a way for me to try T3 because I know it's a missing link, but it's hard for me to take. Heart races.

[gabkad in reply to marvalrus]

I've heard of some doing that, treating the adrenals first. But I don't know. I'm on prednisone and tapering off slowly.

[Galaxy2674]

I've never had any appetite problems but as you need to take on a empty stomach I find the earlier in the morning you take it the better

[earthmutha]

Hi Im just waiting for a call from my GP about my dosage of thyroxine. I’ve had a reduced appetite for months and had requested an increase but as usual I’ve had to wait till I’m so under medicated I feel really ill. They never take my word regarding how I feel.

At least now I have the blood results to prove it. Im naturally slim and have lost around a stone which I can’t afford to lose.

[marvalrus in reply to earthmutha]

Docs just don't care how you feel. Amazing, yet they're doctors and are supposed to help us feel well. My appetite was very poor on 50. I upped to 62.5 and it did get better. Yes, I think if you're ready for an increase, you should get it. What dose are you taking now? I was always on 75, but they dropped me back to 50 becasue my TSH was .025. After that all my problems began and I can't get back on track.

[earthmutha in reply to marvalrus]

I’m taking Levothyroxine 75mcg at the moment. Was previously on 100 had been for years after my PThyroidectomy in 1996. I’m 52 now and went down to 75mcg a few years ago I thought this reduction was odd as I felt fine at the time. My GP said I was absorbing the thyroxine better and needed to reduce to 75. So I’m waiting for a call tomorrow morning hopefully to increase the thyroxine. I really hope I feel better soon.

Good luck with your meds etc marvalrus!

[marvalrus in reply to earthmutha]

It's a shame these docs don't ask "How are you feeling?" before they go adjusting medication based on what they "think" of labs rather than staying the course if you feel fine. This is such a typical story we hear about all the time. I hope you can get your increase, if not, you may want to find a new doctor. It's not always easy but if this one hard to budge, you may have to.

[Hidden]

I'm still low in T3 and been on levo for 13 months.

I still have a low appetite, mostly I just eat because I know I should not because I'm hungry.

Today, for example, I had a pack of hula hoops for lunch and a McDonald's meal for dinner. That's it. And I could've gone without either of them. 🤷🏻‍♀️

My weight has been 62kg since I was 16; nothing ever changes it (apart from pregnancy!).

I worry because I know I need calories for conversion so I quite often eat a lump of cheese when I go into the fridge.

Hopefully it will come back and I'll enjoy food again.