L-thyroxine

[HypoMorgan]

I hate being on l-thyroxine, is anyone with an under active thyroid on a different medication? How do you feel? I’m always feeling heavy tired, I can’t sleep on a night, and I’m not loosing weight. I used to be so lean and since having a baby, I’ve gain 3 stone and eating better isn’t shifting the weight. I just want to loose weight and have energy to do so

[SlowDragon Administrator]

Welcome to the forum.

How much Levothyroxine are you currently taking?

Is the Levothyroxine always the same brand?

Many people find different brands are not interchangeable

Can you add your most recent blood test results and ranges and members can advise on next steps to improve symptoms

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. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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 Primary 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_...

[HypoMorgan in reply to SlowDragon]

My doctors have refused 3 times now when I asked to be transferred to a thyroid specialist. I am getting my blood results back Tuesday. So will get results wrote down. They said I have an under active thyroid due to anti bodies but have not once mentioned Hashimoto. Each prescription has different branded l-thyroxine. Currently on 75mg 25mg is different packaging to the 50mg tablets. I take before bed about 2/3 hours after I eaten . X

[Flipper22 in reply to HypoMorgan]

I've been taking my Levo between 10pm-12 every night for about a year (as suggested by my GP). I feel much better not having to set the alarm then having to wait an hour gasping for a cuppa. Seem to sleep much better too.

[SlowDragon Administrator]

Insomnia is often low vitamin D, and/or high FT4 and/or low FT3

[HypoMorgan in reply to SlowDragon]

I’m taking Vit d supplement which I take with my sertraline in the morning so to not affect my thyroid medication . I’m also taking a thyroid complex with I take with my thyroid medication in the evening.

[HypoMorgan in reply to HypoMorgan]

Vitamin D3 4000IU

[SlowDragon Administrator in reply to HypoMorgan]

How low was vitamin D?

how long have you been on 4000iu vitamin D?

Has level been retested?

[SlowDragon Administrator in reply to HypoMorgan]

In the UK high thyroid antibodies are usually called autoimmune thyroid disease, but its called Hashimoto's in rest of world

What exactly is this thyroid complex?

Many/most Thyroid complex contain iodine or kelp. Both iodine and kelp are NOT recommended for anyone with Hashimoto's

drknews.com/iodine-and-hash...

Also .....Never ever take any other medication or supplements at same time as Levothyroxine

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking,

but it may be more convenient and possibly more effective taken at bedtime.

Did you notice improvements taking at bedtime??

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

You need B12, folate and ferritin tested

75mcg is not a very big dose, how long have you been on 75mcg?

Come back with new post once you get results and ranges from tests next week

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

As you take Levothyroxine at bedtime you need to adjust timings day before. If doing test 9am on Monday morning......for example. Then Saturday evening dose Levothyroxine delay until Sunday morning. (Take sertraline at least an hour after) Then Sunday evening dose Levothyroxine delay until immediately after blood test on Monday morning. Monday evening, take Levothyroxine as per normal

[HypoMorgan in reply to SlowDragon]

She up me to 75mg about 4months a go. If I get sent to a specialist eventually will they test for B12 etc?

[SlowDragon Administrator in reply to HypoMorgan]

Have you had thyroid bloods retested since dose was increased to 75mcg? Bloods should be retested 6-8 weeks after each dose increase

Some endocrinologist do test vitamins, but many don't

Ask GP to test folate, ferritin and B12. They should test these annually when hypothyroid

But NHS care and testing is very hit or miss.....Thousands forced to test privately to make progress

BTA saying you should get referral if not fully recovered

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

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...

NHS guidelines..... including 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.

[HypoMorgan]

I had my bloods done Tuesday, booked in to speak to doctor and get the results this coming Tuesday.

There just so much to do and not do, stuff to take and not take and it’s just so overwhelming.

I want to be put on WP Thyroid, but the only one the doctors know is l-thyroxine. Well mine anyway.

I will post a new status on Tuesday with the results of my blood test and other test they were doing. Iron I think.

[HypoMorgan]

Natural dessi after thyroid????

[RedApple Administrator in reply to HypoMorgan]

HypoMorgan, That is supposed to say Natural Desiccated Thyroid. Often abbreviated to NDT. You mentioned in another comment that "I want to be put on WP Thyroid," WP Thyroid is one brand of NDT, there are others.

[HypoMorgan in reply to RedApple]

Yes I want to go on NDT but not sure where to start. Apparently doctors can prescribe it but they don’t x

[HypoMorgan]

Yeah I get that. I know they do what they have to, but I will speak to my doctor about it x

[Merlio18]

Hi can you give me more info on the cosh have u any links to official documents ? As I am writing to the CCG and need to back my case of how I have been mistreated so iad like to read about this cosh protocol before I send my report to the CCG ?

[Helcatamy]

Bless you I felt awful on levo - ended up buying T3 and after adding a bit in gradually I’ve now stopped levo and take T3 only. Feel like I have my life back! Constant monitoring but it’s so much better for me. On levo I literally wanted to die, gained weight through nothing and didn’t recognise myself anymore; T3 just gives me the kick to get through the days fine and while I get a bit of symptoms like dry skin it’s nothing like before - best of luck to you and I’m sure someone will be along with ideas specific as what works for one doesn’t work for all. I took a gamble with T3 because I couldn’t live like it anymore but it can be dangerous.

[HypoMorgan in reply to Helcatamy]

I’ve got some T3. Did stop my Levothyroxine and took 25mg T3 a day but didn’t feel it worked. To be fair I didn’t give it long as when I told the doctor that I stop the Levothyroxine, she said she couldn’t condone it. Very dangerous. And T3 would ruin my kidneys. So she scared me into going back on the the crappy Levothyroxine

[Helcatamy in reply to HypoMorgan]

I read about the risks and monitor it with temp and blood pressure and really how I feel as I can tell when I have too much. Took a week feeling tired when I stopped levo before I felt better...won’t ever take levo again

[SlowDragon Administrator in reply to HypoMorgan]

Nether T3 or Levothyroxine will work if vitamins are low

You have autoimmune thyroid disease diagnosed by high thyroid antibodies

Low vitamin levels are extremely likely

75mcg is still a low dose of Levothyroxine. Bloods need retesting 6-8 weeks after each dose increase in Levothyroxine

Most patients eventually need somewhere between 100mcg and 200mcg.

Vitamins need to be at good levels too

Many of us with Hashimoto's need to be strictly gluten free

[kissemiss in reply to Helcatamy]

Hi there t3 has not given me dry skin. Which kind of t3 are you using?

[McMurtagh]

I felt like you until I saw a specialist.

Now I take T3 (only) and that works for me.

Don’t give up hope - it’s possible to feel

well again 👍

[Gabriela71]

Little confused... are you on l- thyrosine

or levothyroxine ?

[HypoMorgan in reply to Gabriela71]

Levothyroxine, 75mg a day 🙁

[radd in reply to Gabriela71]

Gabriela71,

L-thyrosine ? ? ... OP only mentions L-thyroxine (but wishes to start NDT).

.

[helvella Administrator in reply to Gabriela71]

L-thyroxine is just another way of referring to levothyroxine - common in German and some other countries.

[Gabriela71 in reply to helvella]

Well I got confused because it is an amino acid with the same name.

[helvella Administrator in reply to Gabriela71]

Funnily enough, the amino acid tyrosine is used to make MIT and DIT in the thyroid.

MIT and DIT are themselves combined in the thyroid to produce (mostly) levothyroxine (T4) and triodo-thyronine (T3).

biosciencenotes.com/synthes...

But the name tyrosine comes from Greek tyros (τυρός) meaning cheese. While thyroxine comes from Greek thyreoiedes (θυρεοειδής) meaning shield-shaped. Resulting in two fairly similar words in English, with of which are very important to thyroid medicine, which are entirely unrelated.

[Cica77]

When taking Teva, I felt worse than before I took anything. Even slight dose increases (and definitely brand changes) properly mess me up. Stick to one brand at a time and find the one that works. Multivitamins and vit d also helped me. Luckily, GP tested vits etc in same blood test that identified the hypo.

[helvella Administrator]

tpauk.com

It needs the colon before the "//" not after.

[Sweet-enough]

Hi. I had hypothyroidism and had most of my gland removed when I was 16. I self medicated, meaning I would adjust my medication if I felt sluggish and was gaining weight. This has meant that 30 years later I have had serious arythmia/palpitations and osteoporosis as Levothyroxine can leach calcium from bones.

If you feel that your medication is not working for you, speak to your doctor and research alternatives but I don’t believe there are currently any better options available . Please don’t increase your daily dosage.

[HypoMorgan in reply to Sweet-enough]

I don’t want to increase it, I don’t want to be on it at all

[SlowDragon Administrator in reply to HypoMorgan]

It's not a medication, it's a replacement hormone, because your own thyroid isn't making enough

Like a diabetic needs insulin, a thyroid patient needs Thyroid hormones

It's a slow process getting dose increased to correct levels

Most patients need at least 100mcg

[Loralei55]

I stopped eating gluten and dairy... dropped 10 pounds!

[Gabriela71]

I had the same problem for a while.

Cleaned my diet, eliminated all the inflammatory foods possible.

What did it for me was a detox.

People that have thyroid disorders, in particular Hashimoto's have an impaired detox system.

I wouldn't encourage you to grab a random detox, because it can make matters worse.

I did it through a functional medical doctor. But they gave me only six days.

The program ended a couple of months ago. and now I'm looking into doing a real detox. I'm not going to go back to the same doctor because she's so expensive, cant afford it.

So I've been doing lots of research and I came across a couple of options.

Dr. Nuzum detox protocol

Microbe formulas

Well of life I think is called another one.

Personally I'm going to go with dr. NUZUM because is more reasonable price, and you can contact him with questions on his Facebook page.

It was crazy, I wouldn't loose an ounce and after doing this short detox, I finally started loosing weight.

But first I would make sure that you are on the right dose of Levo. That can be an issue as well.

Also a good probiotic and digestive enzymes would help balance your system. Also metylated B12 and selenium are very important for the good function of the thyroid.

I hope this helps a little and not confuse you.

[WeeMj]

I'm also on levothyroxine and it does nothing for me so I'm waiting on a prescription for t3 which I will take along with t4 which is levothyroxine... if all fails I'm going to source NDT which is natural thyroid meds made from pigs thyroid and through research it's looking pretty good at helping with regulation and getting rid of symptoms... only thing is I will have to pay for NDT as NHS don't believe in the use if it.

[AFCUK67]

Hi I'm the same as you. Ive put on 4 stone and tired during day and I can't sleep, when I do it's a couple of hours then I'm awake again. I've been on Levothyoxine 7 years on 200mcg but don't feel any better on them just more tired and fat. Luckily I'm 6ft 4" so don't looks as bad. If there is something else they can give me and would help me lose weight would be nice.