Anyone tried Orlistat & found it's not working? - Thyroid UK

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Anyone tried Orlistat & found it's not working?

Rufty10 profile image
26 Replies

Hello, after finding I had various health conditions that were undiagnosed for years (Hashimotos, B12, vit D, etc.) I have the extra few stone weight gain to add to the fun.

As with many of you I have tried all sorts to shift the weight with no effect. Doing an hours high intensity exercise a day, & eat very little because I am never hungry. Evening meals are cooked from scratch so I know what goes into them. The GP prescribed Orlistat about 2 months ago. I've upped the exercise and also cut out carbs. So imagine when I check today and found I am still putting on weight.

I take my levothryoxine about 5am. Vit D & folic acid & other supplements about 9am. Exercise during the morning. Celery, cucumber, tomatoes, a bit of humus & yoghurt with orlistat about 1-2pm. Other supplements about 5. Nuts & orlistat about 6.30. Tea & orlistat about 8.30. Generally drink tea all day and sugar free pop or diet tonic in the evenings.

Levo, supplements & orlistat have to been taken hours apart, hence the timings.

What else can I do because I cannot carry on putting on weight!

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Rufty10
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26 Replies
Jazzw profile image
Jazzw

Yikes. Don’t take the Orlistat. There’s zero point in taking it (I could just end the sentence there...) especially if your diet isn’t bad in the first place. And your diet sounds fine. What an idiot of a doctor you seem to have...

What were your most recent thyroid blood test results? Last time you posted them you were undermedicated.

What dosage are you on now?

Rufty10 profile image
Rufty10 in reply to Jazzw

Hello, I was on 150 which is low for my weight. But based on the results in Sept the GP said I was over medicated & they have dropped it to 125. TSH was 0.03 (range 0.35-5.5), T4=17 (range 7-17) & T3=5.4 (range not known). My antibodies were low, but rising; 39 a year ago, 57 in Jan, but they wont test again. I thought my results looked fine?

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Please add ranges on these results

Rufty10 profile image
Rufty10 in reply to SlowDragon

Ranges added, thanks.

Jazzw profile image
Jazzw in reply to Rufty10

We need lab red ranges to be sure but if that FT3 result is using one of the more standard ranges you almost certainly weren’t overmedicated on 150mcg a day.

SeasideSusie profile image
SeasideSusieRemembering

Rufty10

What dose of Levo do you take?

What are your current results for TSH, FT4 and FT3?

Low FT3 makes weight loss difficult.

Hard exercise depletes T3.

SlowDragon profile image
SlowDragonAdministrator

Sounds like you are under medicated

As you have Hashimoto’s are you on strictly gluten free diet

2 years ago you were only on 75mcg levothyroxine

Presumably you have had increase(s) in dose levothyroxine since then

Do you always get same brand of levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to regularly test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Exactly What vitamin supplements are you currently taking, when were vitamin levels last tested

Please add actual results and ranges

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Rufty10 profile image
Rufty10 in reply to SlowDragon

Thank you for taking the time to reply. Yes I went up to 150 but was reduced to 125 at the same time I started the Orlistat. Latest results are above. My B12 and vit D was through the floor 2 years ago too. GP refused treatment but I paid to see and endo who said I needed treatment. I have B12 injections weekly & take 10,000IU vit D a day at the moment (with all co-factors).

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Important to regularly retest vitamin D, folate and ferritin

Vitamin D may be too high on 10,000iu per day

Nhs postal kit here

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk

Or here

vitamindtest.org.uk

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Taking too much vitamin D is not a good ideachriskresser.com/vitamin-d-...

With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Rufty10 profile image
Rufty10 in reply to SlowDragon

My vit D was up to 112 after a year. In the summer I go down to 5000iu a day but at the moment I am barely going out. I also take boron, K2, folic acid, magnesium, zinc, selenium, Choline & Inositol, vitamin E, vitamin C, Lactobacillus Gasseri Athletes Probiotic , Omega 3 Fish Oil, OMEGA 3+6+9 Flaxseed Oil, currently on multi B vitamin (principally B6) holiday. I do take the magnesium in the evening away from everything else.

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Remember to stop taking vitamin B complex a Week before ALL BLOOD TESTS as biotin can falsely affect test results

Recommend you get vitamins tested annually

Ideally vitamin D twice yearly

Rufty10 profile image
Rufty10 in reply to SlowDragon

Thanks again. GP wont test vitamins again. Was lucky to get D done twice. Although they want to retest B12 which specifically shouldn't be retested. They have no idea about vitamins.

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Vast majority of members test privately......

Rufty10 profile image
Rufty10 in reply to SlowDragon

GP wont accept anything external to their system.

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

But by testing you can self supplement to maintain OPTIMAL vitamin levels

NHS only tests and treats deficiencies

Optimal vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better (NHS only prescribes if under 50nmol)

Serum B12 at least over 500

NHS rarely treats unless under 180

Folate at least half way through range

NHS only treats if under range

Ferritin at least half way through range

Improving by eating iron rich diet

If Thyroid levels are out of range you can INSIST on NHS testing and/or referral to a recommended thyroid specialist endocrinologist

Or see one privately

About 20% of people on levothyroxine also need small doses of T3 prescribed alongside levothyroxine

Gluten free diet is no wheat, barley or rye

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Come back with new post once you get vitamin results

Presumably you are on strictly gluten free diet

Have you tried lactose free as well?

Rufty10 profile image
Rufty10 in reply to SlowDragon

With all the supplements I am taking my vitamins will be ok. I've cut out all obvious gluten. I need milk for my tea though, I've not much else left to cut out so I am puzzled as to how I've put on nearly half a stone on the Orlistat when I'm eating even less.

SlowDragon profile image
SlowDragonAdministrator in reply to Rufty10

Orlistat may be badly affecting how you absorb thyroid hormones and/or vitamin supplements

Gluten free diet does have to be absolutely strictly gluten free, not one speck

With that type of diet, all the orlistat is going to do is stop you from absorbing fat soluble vitamins (eg vit D) - usually it gives you dirty underwear, too. High intensity exercise will deplete your T3 unless you are optimally medicated (TSH under 1, FT4 and FT3 about two thirds of the way up the range). Dump the diet drinks - studies have shown that they make people gain weight as your body doesn't know they have no sugar and still makes an insulin response, and they have no nutritional value. Nuts, legumes (in hummus) and many types of tomato still have high carbs, so do many low fat dairy products. To cut carbs you need plenty of fat, moderate protein and no orlistat or you'll be really ill.

Rufty10 profile image
Rufty10 in reply to Angel_of_the_North

Thanks for the advice. There is an article on diet drinks on the diabetes uk website: diabetes.co.uk/in-depth/stu.... Not sure what else I can cut out now. I do take the fat soluble vitamins as far away from the Orlistat as possible. Though I'm running out of tablet alarms. And yes, never venture far from the loo.

Angel_of_the_North profile image
Angel_of_the_North in reply to Rufty10

I wouldn't cut anything out except junk (diet drinks, for example). Drink water instead. I would do a proper keto diet with no orlistat or a "normal" diet. What you are eating now will make you feel appalling - you'll have to burn protein for energy and that means your muscles (including heart) and, unless your exercise is heavy weight lifting, you'll lose lots of muscle mass and therefore burn fewer calories at rest.Your brain won't have enough fuel and you'll feel tired and wiped out. It's not unlike the diets we did before body building shows back in the 80s and I know how bad they made you feel - and that was people with healthy thyroids and for a max of 6-10 weeks at a time. To lose fat, you need to et your thyroid hormones and vitamins optimal.

jjf255 profile image
jjf255

I totally agree with other comments that excessive exercise greatly depletes T3. Orlistat only removes 1/3 of the fat that you consume at the time of eating...IF you consume any fat. It does deplete any fat soluble vitamins and minerals also. It DOES NOT remove actual body fat! When I look at your comment, it looks like you're not eating anything containing much "fat" for the orlistat to eliminate. You actually could be eating too little if you are only eating what you included in your post. Your body may have gone into survival mode and when that happens you need less and less calories. There are some good books on eating smart for weight loss. You'd be surprised at the amount of food you need to eat. Sounds crazy I know, but you need to research it.

Rufty10 profile image
Rufty10 in reply to jjf255

Thank you. As I explained to the GP, I had already cut all obvious fat from my diet years ago. On the rare occasion I have toast or a sandwich I never butter the bread, I cut all traces of fat from meat and never use oil in cooking. I drink a lot of weak tea but use skimmed milk for that. I have little hope of getting the right dosage for my thyroid as the GPs are hell bent on reducing my dosage. They denied me B12 treatment for 5 years when I was very, very poorly. :(

jjf255 profile image
jjf255 in reply to Rufty10

Why are you cutting all fat from your diet? Your body NEEDS good types of fat to absorb a number of vitamins and minerals. Good fats are olive oil, avocados and their oil, coconut oil, nuts, salmon etc. You need good carbs...leafy greens and other green veggies. Reasonable amounts of protein are needed too. You need to get with a good dietician, to help set up a good way of eating. At the moment, between your extreme exercising and restrictive diet, you are starving your body.

Rufty10 profile image
Rufty10 in reply to jjf255

Cutting obvious fat out isn't cutting all fat out. But I am putting on 2-4 lbs a week. From under 11st to over 14.5 and rising which is also very dangerous. But I was doing that years before this sudden increase started so that's not the only factor.

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