Change in dosage to weight loss: Just a question... - Thyroid UK

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Change in dosage to weight loss

sbadd profile image
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Just a question has anyone had to alter thyroid meds due to weight loss?

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sbadd
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20 Replies
jamesal0 profile image
jamesal0

Yes on NDT with a good TSH I have to reduce NDT or add Testosterone to stop my self loosing weight. On Levo I just slowly put on weight no matter what I do.

sbadd profile image
sbadd in reply tojamesal0

Just wondered as ive lost around 8 kilos and still on 75mcg but experiencing heavy legs, fatigue and generally feeling unwell my thyroid t4 keeps coming back within range but have just got doct to do a full thyroid panel as i wonder if i need more or less atm?

SlowDragon profile image
SlowDragonAdministrator in reply tosbadd

75mcg is a low dose

Just testing TSH and FT4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Is this how you do your tests?

Ask GP to test vitamins and antibodies if these have not been done yet

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

NICE guidelines

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

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine and FT4 near top of range

(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...

sbadd profile image
sbadd in reply toSlowDragon

Yes just had doct retest full thyroid panel (awaiting results ) also my active b12 and folate as keep getting tested for total b12 which is high due to injections in jan, recent vitamin d was in 80's, my last thyroid test was 1.75 and hadn't taken meds that morning but month prior was 3.34???

SlowDragon profile image
SlowDragonAdministrator in reply tosbadd

Do you have autoimmune thyroid disease also called Hashimoto's diagnosed by high TPO or high TG thyroid antibodies?

Levels go up and down with Hashimoto's

Ferritin levels?

sbadd profile image
sbadd in reply toSlowDragon

Yes high antibodies ferreton within range , serum iron low 8.6

SlowDragon profile image
SlowDragonAdministrator in reply tosbadd

So your high antibodies confirm you have Hashimoto's

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Obviously weightloss is strongly linked to coeliac, less so with gluten intolerance

Assuming coeliac test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Other gut issues due to being hypothyroid

healthunlocked.com/thyroidu...

Thyroid hormones need good ferritin levels

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

FERRITIN and hypothyroid

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

jamesal0 profile image
jamesal0 in reply tosbadd

Sorry I didn't read your original post correctly. I thought you were on Thyroid (NDT) . I've never heard of anyone loosing weight on Thyroxine/Levothyroxine

sbadd profile image
sbadd in reply tojamesal0

No ive lost weight through trying plus a heap of stress since injections of b12 which i suffered bad side effects for months so around 8 kilo

sandy471 profile image
sandy471 in reply tojamesal0

I am on 150mg levo and have started a low carb diet and am losing weight very gradually despite the fact I cannot walk well thanks to arthritic knee and both achilles tendinitis. So no fast walking or running for me! I've lost 4 lb in two weeks. Better to have steady loss than an enormous weekly loss I think. I do have treats from time to time though! :-)

Barbara1 profile image
Barbara1

Hi. Yes I lost four stone last year and my thyroid readings were coming back higher then they should. I got my medication reduced from 150mg to 125mg. Obviously. With less body weight I needed less Levo to do the job!! No problems so far.

sbadd profile image
sbadd in reply toBarbara1

This is what im thinking

mistydog profile image
mistydog in reply tosbadd

But you're already on a low dose, sbadd

It may be you need to increase your intake a little now, but also be aware of the feedback loop. I would say don't do anything without posting your figures here (with ranges). SlowDragon has posted great info already.

sbadd profile image
sbadd in reply tomistydog

Thankyou yes awaiting results

Chippysue profile image
Chippysue

I would say no in some cases as a member of our group lost 8.5 stone and remained on the same dose of levo and t3.

Do remember not to take your thyroid medication before your blood test.

Sadly doctors are told to just go by the tsh which is not going to get you well.

sandy471 profile image
sandy471 in reply toChippysue

My TSH was 2.6 and when I told my GP that I'd been feeling fatigued etc again he said that his TSH could be the same. He upped my dose of levo from 125 to 150 and I do feel a lot better.

peaches48 profile image
peaches48

I went on a new eating regime 2 years ago and over 10 months managed to lose 2 stone (Whoopee!). Not so, said the doctor. Your FT4 is at 28, far too high, you're going to have a stroke. Reduce it now to 100 from 125mcg or else I shall mark your medical record that you went against your Dr's advice... WHAT!

So, I reduced it under that threat; started to feel really awful; hair fell out in clumps, terrible brain fog reappeared, lethagy, pain in my legs and body, and absolutely no energy whatsoever. So, I increased the dosage to 112.5, just so I didn't feel like death. Some of the symptoms reduced but my weight started creaping back. Now, a year later, I've put back all that I lost and I feel really tee'd off. The doctor had absolutely no interest in my achievement of losing weight (which helps against heart attack), and to top it all, I found an article from a doctor on Thyroid.uk that said some patients do better when their FT4 is around 28. I almost screamed in frustration. Now, I'm still tryuing to lose this weight but with a lower dose, it seems nigh on impossible.

I wonder sometimes, if doctors are even interested in making us feel better :(

SlowDragon profile image
SlowDragonAdministrator in reply topeaches48

peaches48

You need to get FULL Thyroid and vitamin testing

Likely now under medicated

Just testing TSH and FT4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if under treated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Is this how you do your tests?

Ask GP to test vitamins (and antibodies if never been tested)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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

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

Just seen in another reply you are coeliac. So it's highly likely you need either high dose Levothyroxine or addition of small dose of T3

When gluten intolerant or coeliac conversion is poor

Vitamins are difficult to maintain

See you take vitamin D. Do you also supplement magnesium? Magnesium frequently too low when hypothyroid, especially if gluten free

Roughly where in the UK are you?

Ask Dionne for list of recommended thyroid specialists who will prescribe T3

peaches48 profile image
peaches48 in reply toSlowDragon

Wow, what a comprehensive reply.

Yes, I am coeliac, as well as Underactive Thyroid, I also take Vit D 10,000 twice a week & also have B12 injections every 3 months.

Getting the doctor to do all those tests is going to be a struggle, I can barely get them to do the basics but I will suggest it to them. Their response is going to a classic I suspect but here's hoping :)

On my last blood test, my TSH was 0.002, which I was told was too low but FT3 was mid range and as I said the FT4 was 28 (as suggested by Dr. Toft as being ok - yes I read that article - what an eye opener).

No, I don't take magnesium, so will look into that :)

For my blood test, I have never fasted, as I normally take my meds at night before I go to bed (around midnight), and my blood is normally not taken until 11am the next morning. I'm not sure I can wait that long before taking my next dose, as I normally start to feel really bad, if I wait too long. But if you think this is the way to go, then yes, I will do it.

I've made a note of all the tests you suggest I have done, so thank you for your help. I'll let you know what response I get from the Dr's... :)

SlowDragon profile image
SlowDragonAdministrator in reply topeaches48

Being coeliac (or gluten intolerant) you are likely to need small dose of T3 in addition to Levothyroxine

blood tests ....you want 24 hour gap prior to testing (not 36 hours)

When taking Levothyroxine at bedtime adjust timing as follows

Assuming test 9am Monday morning

Saturday evening dose delay until Sunday am. Sunday evening dose delay until immediately after 9am blood test

Vast majority of patients have to get full testing privately. Many of us only made progress getting full testing

Food intolerances are very common

thyroidpharmacist.com/artic...

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