Oralistat and NDT: Hi, I currently take 2 grains... - Thyroid UK

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Oralistat and NDT

27 Replies

Hi, I currently take 2 grains of NDT and had been feeling fantastic for 9 months. Sadly I am overweight from some horrific medication and have very limited mobility so its acknowledged my my GP that I'm fighting an uphill battle - the horrific medication that saw me gain 3 stone in 9 weeks is for life. 2 weeks ago I was prescribed some oralistat which is the only 'slimming pill' on the market to take alongside weight watchers which is a painful half pound loss per week. It binds dietary fat which you pass out (gross). He mentioned it can leach you a little in terms of meds so to make sure my meds are taken well before or well after the orlistat. For the last week I have felt so rubbish, hypothyroid rubbish, achey and bone tired. I can seep all day and all night, or I could if my parents would leave me alone!

Has anyone had any experience of this drug while being medicated for hypothyroidism? I'm wondering if it's leaching out so much of it the I'm going under active and therefore don't know whether to up my NDT. Any ideas please? Xx

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27 Replies
Marz profile image
Marz

Sorry - do not have any experience of Orlistat. We do need good fats and there is much out there saying that it is not fat that makes you fat....but carbs and sugars. As we know most carbs turn into sugar. Our brains need fats as does the body for producing hormones....

If it binds to fat - what else is being bound and passing through ? Do you have any blood test results for B12 - Ferritin - VitD - Folate - Iron ? And any thyroid results ?

What was the horrific med you mention - is it a steroid ? Someone here will be along to help with more information. You are in the right place for reading and learning....

The book - The Two Day Diet - is very good. There is a website too. You just choose two days to be completely carb and sugar free - but you can eat good fats and lots of protein. It really has worked for me - and it not a life sentence. It differs from the 5:2 Diet in as much you can have around 1000 calories on the two days and not just 500 as in the 5:2. Just a 1000 of the right foods and that includes FATS ! I live in an Olive Grove - so love being even more generous with the oil on salad and veg :-)

Jazzw profile image
Jazzw

Like Marz, I think I'd like to know more about the horrible drug, but that's me being nosy. ;) But I can't help but think that Orlistat is an equally horrible drug given you already have considerable health problems. My understanding of what makes us fat was turned on its head a few years ago when I first did Atkins (low carb). At the time, I did the diet in desperation but after a week or two I began to wonder why no one had told me how and why it worked before. We need fat - Vits D, A and E are all fat soluble. Without fat, how can the body make use of them? And as you say, what else gets flushed out with the fat?

I'm a big believer in eating "real" foods, nothing processed. These days, I've moved away from Atkins a little as I think it overly demonises carbs, but I steer well away from processed carbs like bread and stick mainly to rice and potatoes as accompaniments to main meals. I think Orlistat is something doctors are inclined to throw at patients as a quick fix but it isn't the right answer, in my humble opinion.

in reply to Jazzw

The drug is quetiapine for bipolar - its main side effect is 'massive and rapid weight gain'. I don't have an appetite anymore, I can go days without eating but I think because it slows everything down, including your metabolism, sniffing food makes you gain. I'm being swapped to lithium next week but it's just bad plus my hair will likely fall out! Horrible :(

Marz profile image
Marz in reply to

aboutdepressionfacts.com/de...

b12deficiency.info/b12-and-...

hypothyroidmom.com/when-thy...

Please let me know when you have managed to read these links - and what you think.

This is why I asked in an earlier post about any results you may have for B12 - VitD - Ferritin - Iron - Folate. They need to be optimal for your NDT to work well and for your general wellbeing.

You do not have to take these drugs - if you can manage to restore good levels of the above mentioned vits and minerals you may begin to feel well/better.

I feel for you being in this very difficult situation - but am confident that you can be well. I have spent three years on this forum and have learnt so much from being pointed in the right direction for good information. But of course you have to read LOTS and then act. Many of us here have learnt to take control of our health - nobody cares more about YOU than YOU :-) In saying that we are all here to support you with information and ideas so keep posting and asking questions.

When you Ferritin levels are OPTIMAL - around 80/90 and all the other things - then you may be able to increase your NDT to give you more T3. T3 after all was used as an anti-depressant in the 50's....Maybe you need to add a little T3 to your NDT.

in reply to Marz

Thanks Marz, sadly it is true bipolar, it runs in the family and I've had it since I was 18. I take Spatone and a gentle iron supplement from health span as my stomach is in ribbons from all the drugs to keep my iron up, which can get low if I don't, I'm on prescription strength vitamin D which I've taken for years as I was deficient and diagnosed as fibromyalgia. B12 is fine, and I take an adrenal supplement, as well as all of Dr Ps thyroid supplements. Admittedly, I don't eat well but that's because I'm never hungry and wouldn't eat if something wasn't put infront of me by my parents. It's part of the not caring for myself aspect which is common with bipolar depression. But I had been feeling much better physically until the oralistat. I slept through Christmas a new year, never making it to the end of the meal. I am so tired. Maybe knocking that on the head and adding a little t3 in would help. The lithium I'm due to switch to can trigger hypothyroidism so is contraindicated with thyroxine and T3 so I'm probably going to have to up my dose ultimately. Despite self- treating, my GP does test my bloods regularly but the last test last week showed suppressed TSH, which doesn't worry me, T4 of 4 (12-22) again not to worrying because of the T3 in NDT. But my T3 was below midway in range when it's always been top range. Question is should I increase NDT or as you suggest Marz add in some T3 and see how that goes?

Really appreciate the effort you've gone to with the articles, and I no longer have fibromyalgia but the mental stuff I'm stuck with sadly xx

Clutter profile image
Clutter in reply to

DrivingBackwards, I took Lithium for 4/5 years many years ago and I didn't notice any hair loss and condition was good until I bleached, coloured, permed, used heated rollers, tongs and tons of styling products and spray...then condition was rubbish :)

Thyroid and liver were checked regularly and bloods were always 'normal'. Thyroid problems didn't surface for 30 years and may not have been related to Lithium.

in reply to Clutter

Thanks for this Clutter, my none pleasant GP is pretty furious my consultant has changed me over to lithium, I think he's trying to scare me out of it so he doesn't have to do the weekly monitoring. He was very sarcastic about how much involvement my consultant would have in all the testing. Maybe I shouldn't buy into his misery, I'm told it's a good drug and could be a game changer xx

Clutter profile image
Clutter in reply to

DrivingBackwards, Lithium was the only option back in the day. I'm fairly certain my blood tests were monthly when I was private. Less frequent, I think, via NHS, but I and dose were stable by then. Important not to take your Lithium until after the blood draw or your result will show toxic levels.

Your GP's misery shouldn't be your problem and he shouldn't be worrying you about frequency of testing and monitoring and the level of input from your consultant. If he has issues he should take it up with the consultant.

jezebel69 profile image
jezebel69

The Zoe Harcombe books are fantastic educational tools for not only losing weight but understanding exactly how our bodies work with nutrition. Despite being hypothyroid with continuing symptoms I could actually lose weight following her guidelines.

I was given orlistat a few years ago and after just tablet I was in agony with my stomach and my GP told me to stop them immediately. I was at the time on no other meds but have lots of problems since with irritable bowel and gastric reflux and I have several conditions including fibromyalgia and osteoarthritis. I take supplements of B12 and D3 as these seem to deplete quickly for me. I believe my weight gain to be down to undiagnosed and untreated hypothyroidism so I am about to start NDT. Gentle hugs Joolz.x

Jazzw profile image
Jazzw in reply to

Ditto that - the undiagnosed hypothyroidism thing. I've been on NDT for a few months now and this is the first Christmas ever where I haven't gained weight despite eating everything I fancied. :)

I read an interesting article yesterday from a doctor who conducted early tests of orlistat and other versions of the same stuff (includes Alli). He said that their tests showed that taking it made you more likely to get gall stones (and the test subjects were screened for gall bladder problems before the study).

proteinpower.com/drmike/low...

As well as making it hard to absorb fat-soluble nutrients

in reply to Angel_of_the_North

To be honest I eat very little fat in my diet anyway, well except for a Christmas Day when I didn't take the oralistat because I didn't want the side effects. I have a drop of skimmed milk in my morning cup of tea, rarely eat cheeses and then it's a low fat variety, and it never cook with oil etc, when my dad does he uses a little olive oil. It maybe why I've had zero side effects of the expected kind when taking it. My rheumatologist said I had to eat more fat for vitamin D to work, but it goes against my brainwashing of constant low fat diets to try and shift this weight. The 5:2 diet got a stone off then nothing after that, and that was when I stopped taking the quetiapine, but sadly I went a bit mad from stopping the drugs so it's just not an option. Thanks for the article, I always thought gallstones were caused by too much fat in the diet! Xx

Angel_of_the_North profile image
Angel_of_the_North in reply to

"I always thought gallstones were caused by too much fat in the diet!"

It seems not. Fat makes the gall bladder contract and eject bile so that it doesn't sit around and form stones. Probably needs to be the right sort of fat - I think MCTs (liek coconut oil) and SCTs (like butter) might be metabolised directly in the liver.

in reply to Angel_of_the_North

That's Rosemary Connelly who spread that fat causes gallstones!! 15 years ago me and my mum did her diet and she claims she was fat and got gallstones from eating fat so it was a completely fat free diet. No milk or cheese, no oil or dressings blah blah blah. It was all lies!! I'm shocked! X

Angel_of_the_North profile image
Angel_of_the_North in reply to

I think eating very little fat (80s style high carb diet) then eating some fat causes you to notice gall stones as the gall bladder can't function - if you eat no fat at all, ever, the gall bladder has nothing to so you wouldn't notice whether you had gall stones. Perhaps eating a lot of trans fats and heated veg oil (again a big thing the the 80s) also causes them.

I noticed how many more people are fat now we've been bombarded with high carb/low fat info than were fat back in the 50s, 60s and 70s. Looking at old photos, I can see that the kids in my school who were teased for being chubby would be considered normal weight now.

humanbean profile image
humanbean

Quoting from one of your posts further up :

"I'm on prescription strength vitamin D which I've taken for years as I was deficient and diagnosed as fibromyalgia"

Can I ask what strength the vitamin D actually is, please? I've seen lots of people referring to taking only 400 iU per day or twice a day, prescribed by their GP. I self-medicated with 1000 iU of vitamin D3 per day when my vitamin D was a bit low, and a few months later my levels had actually dropped. I need to take 3000 iU per day to raise my levels (it works slowly - but at least it works), and many people refer to taking between 5000 iU - 10,000 iU per day.

You need fat to be able to absorb fat-soluble vitamins like vitamins A, D, E and K.

en.wikipedia.org/wiki/Vitam...

in reply to humanbean

As predicted...400UN once a day. Rheumatologist said that would be all is need. I had loading injections first, then took this twice a day, arsey GP changed it to once a day x

humanbean profile image
humanbean in reply to

I would suggest asking for another vitamin D test, and if it isn't well up in the optimal range then start buying your own vitamin D3 supplements over-the-counter. The reference ranges for my last vitamin D test were :

<25 nmol/L : Severe Vitamin D deficiency

25 – 75 nmol/L : Borderline ranging to insufficiency

75 – 200 nmol/L : Optimally replete

>250 nmol/L : Possible toxicity, if sustained

I have no idea why the ranges have to be so "complicated" for vitamin D. Why not just say the range is 75 - 200 nmol/L and be done with it?

My last test gave me a level of 98 and I'm still working on getting it higher - I'd like it to be around 120 - 130. The lowest result I've ever had (that I know of) was just over 50. At that time I thought I was developing arthritis because muscles and joints hurt so much. I no longer think that and I credit the vitamin D with most of the improvement.

I just looked on Amazon and found a huge choice of vitamin D supplements available, of varying strengths and in varying quantities and it really isn't expensive.

in reply to humanbean

Thank you! I know when I was first tested I had a reading of 9 with similar reference ranges to those. I was given 2 loading injections and my level came up to 75 which they were happy with. The pain didn't improve til I took NDT as well. So this exhaustion could be vit D again (I never expose my skin to the sun as can burn through a closed window!!) I shall ask nice GP to run my levels again including b12 and folate, ferretin and vit D. Thanks for the advice x

Gillian-McDowall profile image
Gillian-McDowall in reply to humanbean

You just hit on something there, I was a tremendously fit, slim yogi. I then had a full hysto, blamed all my phisical probs on that aging my body. That was, until I was diagnosed with thyroid problems. Im on a 100 now and through this site, Ive started taking vit b12 & D. You mentioning feeling like you have arthritis, thats me. My body aches with every move, still go to the gym but as my weight creeps up I find it all exhausting. I will now read up much more on my VitD intake. My doc only checks T4. Thanks

faith63 profile image
faith63 in reply to Gillian-McDowall

Sounds like you are not properly medicated and very Hypothyroid. Being Hypo causes low d too. You should not be struggling and in pain like you are.

greygoose profile image
greygoose

Oh dear, DB, what can I say that the others haven't already said. It is scandalous that you are being given those awful drugs when all you probably need is a decent dose of thyroid hormones and FOOD!!!

Do you know that not eating can make you fat? Espcially when you're hypo. From what you've said, you are going to be suffering from numerous nutritional deficiencies - B vits, vit D, magnesium, iron, zinc... And that means that you are unable to use the thyroid hormone that you are taking. You become more hypo and you put on more weight! It's a viscious circle.

You also need fat - all fats except trans-fat. Your brain needs cholesterol, your heart needs it. And without fat and cholesterol you cannot make hormones. Eating fat does not make you fat - quite the contrary, those that eat the most fat, lose the most weight. Giving you a drug that robs you of your dietary fat is criminal!

And you need calories. Low calories mean you cannot use the thyroid hormone you are taking and therefore you become more hypo and put on more weight! Doesn't your doctor know anything???

Plsease, please start eating. They say you are what you eat, but you are also what you don't eat : hypo!

Hugs, Grey

faith63 profile image
faith63

If you are hypothyroid and not properly treated, you will not lose any weight. Weight Watchers and diet pills are a waste of time and $, when you are Hypothyroid.

faith63 profile image
faith63

I meant to add, that you are most likely holding lots of fluid...but much of it will not look like the usual edema.

in reply to faith63

What can I do about the fluid. I definitely retain as can put on or lose more than half a stone day to day

faith63 profile image
faith63 in reply to

Listen to Grey Goose..you are on too many drugs that you don't need, that slow your body down even further and have all kinds of nasty side effects and are addictive. You need proper amounts of t3, not t4 to get the fluid down. But, you may not be able to properly utilize thyroid hormone while on drugs that lower metabolism anyway.

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