I have been on 125 or 150 levothyroxine for 12 ... - Thyroid UK
I have been on 125 or 150 levothyroxine for 12 years. It's causing so much weight loss.want to stop taking it anyone else got this problem?
From the posts we receive, mostly it is about weight gain, either before being diagnosed or when on levothyroxine (patients' kept in range).
Do you have a print-out of your latest blood test results, with the ranges, and post them as it will help members to comment. Your surgery should give you a copy.
I too am Hypo but suffering with weightloss on 50mg leveothyroxine ,was skinny before levo..but i have sweats,fast heart rate,dizzy spells diarrhea, swelling in neck at times blood test in range from doc.just sent off for another private test 
You must get a copy of your blood test results (you are entitled and always get a copy for your own records). Being 'in range' could be the problem as you may need your dose increased. If your GP hasn't done a Vitamin B12, Vit D, iron, ferritin and folate ask for these to be done at your next blood test.
In Dr Skinner's book, he does say that some people do lose weight.
I wonder if you allergic to something in the levothyroxine. You should ask for a referral to an Endocrinologist. I had your first two complaints whilst on levo which are extremely unpleasant. The second two may be the cause your weight loss.
The following is a link but don't know if this suggestion works. Go to the question dated September 6, 2001:
web.archive.org/web/2010103...
Thanks Got doc on monday ..been on levo for 6plus yrs 75mg with no problems until 15months ago with these symtoms started ,last blood test showed i was overmedicated which i thought ...Plus on 10mg propranolol for fast heart rate ..
I am not on levo but there have been reports of many having undesirable effects on some levos recently. There may have been a slight change in yours which affected you . Did the GP not have your heart checked at hospital. Take your beta-blockers a good while away from levo.
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I've also experienced significant & unwanted weight loss on Levothyroxine. I gained 2½kg when I stopped taking it but am losing again now I've resumed taking T4.
I'm surgically hypothyroid so must take hormone replacement. I'm currently adding T3 to T4. If that doesn't resolve the weight loss & other Levo side effects I shall trial NDT.
Have you had a coeliac screen? If you're gluten sensitive you may not be absorbing nutrients. Otherwise, consider a reduction in dose & see if it has any effect and ask for a referral to a dietician.
Hi thanks so much for your reply! I have had the coeliac blood test but it was negative! However due to all the anaemia I have had the doc toldme to try a gf diet and I did feel so much better! That was 2 years ago and still gf. About a year ago I started with this weigh loss again and have refused to take what I should be on 150! Tsh is 12 and T 4 is 8 when taking 125 and feel so over medicated even though it's underactive still!!!! Is this how you feel? I think we are unusual and no doctor seems to know what to do?
Can you persuade your GP to trial T3 (Liothyronine) in combination with a lower dose of Levo. T3 suppresses TSH & FT4 but it is the active hormone which is converted in the liver from the pre-hormone T4.
Your TSH appears high & FT4 low, but its impossible to be certain without your results with lab ref ranges. If you have copies can you post them. If not recently tested ask for TSH, FT4 & FT3. ALWAYS request/insist on a printout of your results.
It may be worth requesting a referral to an endocrinologist too. Unfortunately s/he is likely to raise your Levo dose in order to suppress your TSH, making you feel even more overmedicated, but secondary hypothyroidism, caused by malfunctioning pituitary gland, really needs to be ruled out.
Failing all else, consider self medicating with T3 or NDT which can be sourced online. If you stop Levo altogether your TSH will rise & FT4 drop further and efforts will go into bringing them into range rather than dealing with the underlying problem.
Thank you again for your information. It is interesting that you gained a bit of weight when you were off levothyroxine! I will ask them to print off my results when I get it checked later this month. The gp mentioned liothyorine but when he spoke to the specialist he wasn't keen! He also wasn't keen to see me which I'm so angry about. I had to go private and he told me it could be cheap medication from India that we are all getting fobbed off with!!!!! As for the little food often I do this and like you it hasn't made any difference. It's like there are no calories in food even cakes etc and I was never like this before!!! at 50l it's very strange! No amount of exercise can produce this and that is what they are blaming as I am a fitness instructor! Thanks again
Lazy doctoring. If you were overweight you'd be told to get off your lardarse and exercise. They're so unwilling to consider that levothyroxine is NOT the wonder cure for all things hypothyroid.
Nevertheless, if over exercising was responsible for your weight loss, it doesn't explain away your high TSH and low FT4.
I really think your GP needs to refer you but not necessarily to the arsey specialist.
A lot of us have no alternative to source T3 and NDT online thanks to RCP & Society of Endocrinologists conviction that T4 monotherapy is sufficient.
Yes Tweed, I have also lost weight since starting Levo for Hypo a couple of months ago. I am only on a low dose (50mcg) but have lost a significant amount of weight which is not a good thing as I was already underweight to start with.
Best Wishes.
Have you had your TSH, FT4 & FT3 tested since starting Levo? If not, its time to book a test. If you have, and have a printout of the results &lab refs, you can post them if you want comments.
I was advised to eat small frequent meals to boost my weight. Can't say its made a noticeable difference 
I got my levels tested privately on 15th Dec 13. I did post the results and got some helpful feedback, and generally I think the results looked not too bad when I see others, however I am pretty poorly and struggling.
The doctors I have told about my trouble eating and losing weight have implied I am lying, saying my blood tests don't show I lack nutrition, despite often only managing some toast and cereal most days and having all sorts of abnormalities in my blood results. Every consultation is a confrontation due to what I perceive as being neglected and fobbed off.
Lets see what the New Year has in store, good luck with your weight too.
Regards.
At last I have found two of you now!!!!! I've been like this for a long time but in the last year it has got worse! Hope you are Ok and hopefully you will get more help from your doctor! Good luck
I am glad you posted this topic tweed, I have found it difficult to find others having a weight loss problem, most people seem to report weight gain. I am sure that my recent weight loss is in relation to taking Levo, however I have been underweight for a long time, and this ties in with how long I was told I have been Hypothyroid for. If I try and search for 'Hypo and weight loss' it only brings up people wanting to loose some weight, not people struggling to put it on. I did read somewhere that low body weight can be a symptom of being Hypo, but is much less common, usually a symptom of being Hyper.
All the best.
I lost a whole load of weight and the docs were looking into adrenal problems, the first test was borderline and the ACTH test was ok, and gradually the weight came back on, so am back to a comfy - ie not looking ill(!) - weight. Maybe ask for a blood test for your adrenals?
Good luck though whatever, this journey we are on certainly doesn't seem easy !
Get off the thyroxine. I was diagnosed with servere hypothyroidism and was on thyroxine for about a year. I've been off it for about a year and a half now and I'm only boarder line hypo. Get on the mushrooms instead of thyroxine. It kills your thyroid.
Hi josepie
No I'm still taking the levo still can't gain any weight but have other issues now as they found a shadow on my lung that has revealed inflammation which is now being at last looked into with ct scans. I have been ignored for so long that I'm sure the doctors thought I was making it all up as that is the response to thyroid patients then they actually miss something very serious. I'm still unsure whether the medication is causing this weight loss or the inflammation, as I have had no answers but I really wish you luck if you have swapped to natural thyroid and will be keen to hear how you get on as I may do the same when all this is diagnosed properly. Thanks for getting in touch and good luck x
