Levothyroxine and Orlistat: I was diagnosed with... - Thyroid UK

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Levothyroxine and Orlistat

NeensB profile image
16 Replies

I was diagnosed with an underactive thyroid last year - had gained weight and a private test finally showed the reason why - and have been on 50mcg ever since.

My thyroglobulin antibodies are increasing with each blood test.

Despite dieting and attending the gym regularly, I cannot shift the weight. I had Orlistat mentioned to me and want to see if my Dr. can prescribe this to help.

Has anyone taken this alongside Levo and had good results?

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NeensB
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16 Replies
kazb1966 profile image
kazb1966

Hi I’ve really struggled with my weight since having RAI for over active thyroid. I’ve gained over 3 stone and I gained this within about 8 months. I’ve tried Orlistat prescribed by my Doctor but has not helped at all despite being on the loo constantly. Shifting the weight feels virtually impossible since be becoming under active. I hope it works for you.

SlowDragon profile image
SlowDragonAdministrator in reply to kazb1966

Hi kazb1966

Are you on enough Levothyroxine? What are you latest results for TSH, FT4 and most importantly FT3

Also presumably you had Graves. Even after RAI you may find it beneficial to be strictly gluten free.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Also can request list of recommended thyroid specialists some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI.

rcpe.ac.uk/sites/default/fi...

Clear legal outline that it's still possible to be prescribed T3 on NHS

healthunlocked.com/thyroidu...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

kazb1966 profile image
kazb1966 in reply to SlowDragon

Hi Slow Dragon

Thank you for your message. Shortly before the RAI the Dr said it was Graves but the Dr who did my biopsies said Hashimotos. The first Endo I was under denied I had either. Once my thyroid started to go under he really wasn’t bothered about seeing me anymore even though I told him things were so bad I wanted to drive my car into a wall. Life was awful. My GP has been fabulous, holding his hands up to not fully understanding it all but so very sympathetic. He suggested re-referring me and after a 6 month wait finally got to see a new endo on 1st March.

On the 15th Sept 2017 I increased to 100mg Levo got bloods done on 5th then on Jan this year increased to to 125mg.

Jan results

TSH 1.62 (0.35-5)

FT3 3.1 (2.9-4.9)

FT4 14.3 (9-22)

March results

TSH 0.13 (0.35-5)

FT3 2.6 (2.3-5.1) New reference range by lab

FT4 16.6 (9-22)

If you can shed any light on these results I would be very grateful. If you think I should start new post please let me know

I’m on Vit D as a maintenance dose as advised by GP. I also supplement with B12, Magnesium, Zinc and Selinium (the last 3 I started to supplement after reading on this site would be beneficial My Endo agreed

He also referred me for a DEXA bone scan as Levo apparently can cause bone density loss. I’m post menopausal too.

Vit D 55 (50-200)

Ferritin 20 (10-200)

B12 353 (200-910)

Folate 6.9 (3-20)

Thank you

Karen

SlowDragon profile image
SlowDragonAdministrator in reply to kazb1966

Good levels of vitamin D, folate, ferritin and B12 are essential. Very often too low. Important to test regularly, privately if GP refuses. Plus test FT3

SlowDragon profile image
SlowDragonAdministrator

50mcg is only a starter dose. Bloods should be retested after 6-8 weeks and dose increased in 25mcg steps until TSH is around one (or just under) and FT4 towards top of range and FT3 at least half way in range

First thing is, do you have any actual blood test results? if not will need to get hold of copies

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

scoobydoo87 profile image
scoobydoo87

Hi ,I was prescribed Orlistat 2 years ago , I did lose weight but it was still difficult, I was eating very little . When I came off it , I gradually put the weight back on and more.

I’m currently trying to lose weight again without help , it’s virtually impossible.

I’m hoping that it may start to come off , my Levothyroxine been upped to 100 mg , tests showed I wasn’t on enough .

Wish you luck .

shaws profile image
shawsAdministrator

Welcome to our forum NeensB.

I am sorry that you have gained weight but it is probably due to you being on a starting dose of levothyroxine i.e. 50mcg.

Unexplained weight gain is a clinical symptom of hypothyroidism, which - it doesn't matter how much you exercise or diet - our metabolism is too low until we reach a dose of thyroid hormones (levothyroxine or others) which raises our metabolism and then weight can be reduced - sometimes without diet and sometimes with.

Why would a doctor prescribe another product for the symptom rather than increase levothyroxine? Unfortunately that is what they usually do.

Our body runs on a thyroid hormone called T3 (liothyronine) which is the Active Thyroid Hormone needed in our millions of T3 receptor cells.

Levothyroxine is inactive and has to convert to T3 and it is this hormone which is the active one and our brain and heart need the most.

If you've not had a recent blood test, I'd advise you to request a Full Thyroid Function Test (GP or lab may not as they seem to have been directed to take TSH and T4 alone).

Tests should be at the earliest possible, fasting (you can drink water) and allow a 24 hours gap between last dose and test and take afterwards.

Ask for a Full Thyroid Function Test, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. GP or lab may not do all of these but we have two private labs who do home pin-prick tests.

GP should test B12, Vit D, iron, ferritin and folate. Everything has to be at an optimum level.

Always get copies of blood test results with the ranges for your own records and you can put them on a new post for comments.

The aim is a TSH of 1 or lower with both FT4 and FT3 near the upper part of the range.

This is a list of clinical symptoms and one of the commonest question on the forum is weight gained. Doctors blame the patient and not the low dose of levo or even adding some T3 to T4.

kazb1966

thyroiduk.org.uk/tuk/about_...

When on an optimum dose we should have no clinical symptoms.

guavas profile image
guavas

Hi, Orlistat will do nothing if you eat more than you burn, calculate your calories and decrese from it 300 - 500 calorie , like if your are need 2500 cal per day you need to decrease it by 300 - 500 , you will need 2000 cal or 2200 cal per day, you can read how to calculate your calorie , make sure to check FT3 and make sure you don't have adrenal problem , i'm losing fat easy but i have High Cortisol so i gain some fats and water , but isn't impossible to have a good shape , when you FT3 Optimal also vitamins and minerals optimal and calculate calories and macros you will lose fat faster than normal people , simply because normal people thyroid from time to time will adapt and decrease T3 level and will need to rest days from dieting , also you have to do that because not only thyroid hormone control metabolism , but anyway you will lose fat faster just make sure that you are in right path and don't have adrenal or diabetes problem....

shaws profile image
shawsAdministrator

Two past posts which might interest you:-

healthunlocked.com/thyroidu...

stopthethyroidmadness.com/h...

kazb1966 scoobydoo87 guavas

guavas profile image
guavas

AH , i forget GOOD NEWS! , you are not gaining weight (fat) as you think you are just gaining water and your body store it you will think gaining fat but it's just water it's called (Water Retention) , once you are on optimal dosage you will lose it if you don't have another problem

As the above answers imply, you need to make sure your thyroid is adequately treated and your cortisol levels are normal (not too high). High cortisol can affect your thyroid, and both can impact on your ability to lose weight.

Any attempt to dramatically reduce fat intake will not improve your metabolism. Fat consumption between 18 and 40% has little affect on fat in the body and diets high in fat are not the primary cause of excess fat in the body. The body will first of all use carbohydrates as a source of energy, when that it is depleted it will use fat. If you have a high carb intake that will be used first as it is easier and quicker to metabolise as opposed to fat.

Good fats play an important role in your body, especially cholesterol. Cholesterol is used by the adrenals to make cortisol, aldosterone, DHEA, estrogens and in Vitamin D synthesis. Saturated fat is actually one of the main components on the brain.

I wouldn't take orlistat - it will impair your absorption of vit A, D and E and can make you leak from the back end. You might be able to lower antibodies by going gluten-free (and possibly dairy-free) and taking a small dose of organic selenium (not synthetic). Too much gym time will use up your T3 and keep the weight on if you are not optimally medicated. Some people find a ketogenic diet useful.

greygoose profile image
greygoose

Low-calorie diets and over-exercising are not going to make you lose weight when you're hypo - and probably not anyway - but will probably make you put more on because they will affect your conversion of T4 to T3. You need calories to convert! And it's low T3 that causes symptoms like weight gain, which probably isn't fat, anyway.

If you have high antibodies, then you have Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis. You will probably benefit from a 100% gluten-free diet when you have Hashi's, which does makes some people lose weight. But, you still need optimal T3, and you won't have that on 50 mcg levo. Your dose should have been increase six weeks after starting it. And, if you doctor hasn't done that, then he is being negligent. Get retested as soon as you possibly can. :)

NeensB profile image
NeensB in reply to greygoose

They did increase to 75mcg but then tests showed that I was slightly over medicated. My TSH dropped down to 0.03 so they dropped the Levo back down.

On my last test, my thyroglobulin was 366 and the range is 0.0 - 115. That test was down in March. The test before that, the thyroglobulin was 129 on the same range scale.

greygoose profile image
greygoose in reply to NeensB

So, your doctor is dosing by the TSH? That's a very good way to keep the patient sick! The TSH is irrelevant once you are on thyroid hormone replacement, unless it goes high, it doesn't matter how low it goes. And a suppressed TSH does not automatically mean that you are over-medicated. Actually, when you have Hashi's - and you do have Hashi's, your antibodies say so - then you need your TSH suppressed.

So, did he retest six weeks after reducing the dose? If not, he should have. You ought to get retested as soon as possible. And tell your doctor that you need the FT4 tested, because the TSH on its own tells you nothing much.

NeensB profile image
NeensB

Here's the full report from my last test done 1st March.

I haven't had anything tested since.

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE *0.03 mIU/L 0.27 - 4.20

FREE THYROXINE 18.5 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 104.0 nmol/L 59.00 - 154.00

FREE T3 6.21 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY *366.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES 33.1 IU/mL 0.00 - 34.00

Hope that helps somewhat...

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