thyroid tablets : I have been taking... - Thyroid UK

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thyroid tablets

Thelostboys profile image
86 Replies

I have been taking Levothyroxine for a year and have felt so poorly my Dr told me to stop taking them please does anyone know how long they stay in your body. I was told 6week because i am waiting to have another blood test done. Thank You.

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Thelostboys profile image
Thelostboys
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greygoose profile image
greygoose

Depends how much you were taking. But you can work it out:

The half-life of levo (T4) is more or less 7 days.

That means that if you took 50 mcg on 1st January, by the 8th Jan there would be more or less 25 mcg left. 7 days later there would be 12.5 mcg left. 7 days after that, 6.25 mcg... And so on, and so forth.

But what is your doctor planning to do after the blood test? Because if you are hypo, you cannot live without some form of thyroid hormone replacment.

Thelostboys profile image
Thelostboys in reply togreygoose

I need to see if my thyroid is still under active and start new medication.

greygoose profile image
greygoose in reply toThelostboys

Pretty certain it will still be under-active if it was before. Thyroids don't regenerate.

The symptoms were horrific anxiety depression tinnitus headache pins and needles itching all over my body.I had no appetite and lost one and a half stone and also i couldn’t sleep.

Those are hypo symptoms. Just seen your duplicate post and you were only taking 50 mcg for a year!!! That is a starter dose and should have been increased six weeks after starting it. Pretty certain that what you thought was being allergic to levo was actually under-medication symptoms. Your doctor obviously knows less than average about thyroid, so be very wary about what he decides to do next.

AtoZ24 profile image
AtoZ24 in reply togreygoose

I didn't know weight loss can be an indication of hypothyroidism-I read it was because the person was hyper.

SlowDragon profile image
SlowDragonAdministrator in reply toAtoZ24

Significant minority of hypothyroid patients loose weight when left on inadequate dose levothyroxine

Lack of appetite and/or poor gut function and poor nutrient absorption resulting in weight loss or difficulty maintaining weight

coeliac disease is possible too

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

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

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

TSH110 profile image
TSH110 in reply toAtoZ24

I was like a rake, so it can happen with hypothyroidism

greygoose profile image
greygoose in reply toAtoZ24

Yes, I'm sure you did, and that's just one of the problems we face. Have a look at what helvella has to say in this thread:

healthunlocked.com/thyroidu...

buddy99 profile image
buddy99 in reply toAtoZ24

My doctor held the same misconception. I can be hypothyroid and still quite slim. If a doctor has it in their mind that I should be fat, then I can not possibly be hypo. This doctor specifically put into the referral to the endo "This very slim patient....." to indicate that I'm not hypo, I assume. When I'm hypo I eat close to nothing because I have zero appetite and need to force myself to eat or go without food for weeks (no exaggeration!).

Thelostboys profile image
Thelostboys in reply tobuddy99

I did loose a stone and a half while i was taking them i had no appetite at all most days i had to force myself to eat two yogurts.

ICE187 profile image
ICE187 in reply toAtoZ24

I lost 55 pounds "3.929 stones" within 2 months when I was first diagnosed with hypothyroidism. My doctor thought I had cancer.

Gummybearx profile image
Gummybearx in reply togreygoose

I lost a stone and a half before being a diagnosed and definitely hypo/hashis

greygoose profile image
greygoose in reply toThelostboys

A word of warning:

6 weeks may be long enough to get all the levo out of your system, but may not be long enough for the TSH to rise to its full height. Because the TSH moves quite slowly. I don't suppose your GP knows that - he doesn't seem to know very much! - so if he only goes by the TSH, you might have a problem 'proving' you're still hypo.

Thelostboys profile image
Thelostboys in reply togreygoose

Thank you i will take a note of that

greygoose profile image
greygoose in reply toThelostboys

You're welcome.

Easylover profile image
Easylover in reply toThelostboys

Yes, please do...a doctor can do you in!

Regenallotment profile image
RegenallotmentAmbassador

What were the symptoms? and which make of Levo did you have? Sometimes people react to an ingredient in the tablets and they can all have different ingredients. Let us know and we can all help figure out what might work for you 🙏🌱

Thelostboys profile image
Thelostboys in reply toRegenallotment

The symptoms were horrific anxiety depression tinnitus headache pins and needles itching all over my body.I had no appetite and lost one and a half stone and also i couldn’t sleep.

RedApple profile image
RedAppleAdministrator in reply toThelostboys

This sounds as if you were given too high a dose. What dose are the tablets you've been taking, and what is the brand name on the box?

Thelostboys profile image
Thelostboys in reply toRedApple

I was starting on 50gram but lowered to 25 as i felt so ill but there was no difference

RedApple profile image
RedAppleAdministrator in reply toThelostboys

Do you know the details of your test results that made the doctor diagnose you with hypothyroidism?

We don't know what country you are in, if you are male or female, nor your age. If you can add some more information, it will help members to help you.

Thelostboys profile image
Thelostboys in reply toRedApple

I am on 50 mg i just had a blood test for everything my dr told me i had an under active thyroid and put me on this medication. I had a test 2 months later and it was fine i am female and i live in England.I came off them with the Drs orders because i felt very poorly on them.Thank You

SlowDragon profile image
SlowDragonAdministrator in reply toThelostboys

You are legally entitled to copies of your test results

symptoms were horrific anxiety depression tinnitus headache pins and needles itching all over my body.I had no appetite

These are all hypothyroid symptoms

Likely dose should have been INCREASED

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

TSH110 profile image
TSH110 in reply toThelostboys

Sounds similar to me. I had all those symptoms. I had atrophic autoimmune thyroiditis which is more unusual - there’s no goitre it starts out like hyperthyroidism but ends up as hypothyroidism . It can yoyo between the two. It’s truly horrible. 50mcg is not an adequate dose for recovery like others I think you are under medicated and still suffering symptoms.

You should ask reception at doctors for a copy of your blood results (its your legal right to be given them) and post them here. Their idea of normal can be complete nonsense.

Gummybearx profile image
Gummybearx in reply toTSH110

I wasn't diagnosed with the same but I do get both hyper and hypo symptoms. I am definitely hypo but took 2 years to get under control 20 plus years ago. I still get both sides of symptoms.

TSH110 profile image
TSH110 in reply toGummybearx

If you had no goitre (atrophic) perhaps it’s AAT. They tend to lump everything together as hashis or hypothyroidism but AAT is a different thyroid disorder it’s not graves and not Hashimotos it’s more like a hybrid of the two. It’s down to the type of antibodies involved. My endocrinologist knew his stuff and knew what I had.

I’ll post a blog about it below, so you can see if it fits, yours sounds so like my symptoms. You don’t mention any goitre either.

This is a very good blog it can be hard going at times but it’s he best one out there:

thyroidpatients.ca/2018/12/...

the medical profession tend to ignore the fact that most thyroid disorder is autoimmune they don’t even bother testing antibodies as routine which I find gobsmackingly negligent. It’s key in understanding which disorder you have and what problems you might have.

Gummybearx profile image
Gummybearx in reply toTSH110

I had no goitre and if I did have antibodies it never shows or was ever tested. I was told by my first endo years back that I was suffering with both sides of symptoms but never diagnosed even with my new endo,who specialised more in diabetes and not our field tho he did fight for me to get T3 as I do not convert T4. Thank you,that would be great

TSH110 profile image
TSH110 in reply toGummybearx

Yes I had exactly the same problems with conversion too. I’d say it’s AAT. I ended up taking NDT I felt so awful on Levothyroxine as my T3 was rock bottom basement. I feel so much better on NDT a different person, I felt like a shadow of a thing on Levo not even human. All we need is a bit of T3 to resolve matters. It’s hardly rocket science.

Have a read of this and see if it fits the bill: thyroidpatients.ca/2018/12/...

Oops I already posted it last time 🙄

Easylover profile image
Easylover in reply toTSH110

Excellent!

Thelostboys profile image
Thelostboys in reply toTSH110

Yes i did have a goitre a large one but thankfully it has gone now.

TSH110 profile image
TSH110 in reply toThelostboys

Glad to hear that, it rules out AAT too.

JaneChapple profile image
JaneChapple in reply toTSH110

I have AT too. It was Paul Robinson who mentioned it to me, so I got a private ultrasound scan which showed my thyroid severely atrophied with 1cm lobes. Surgery put the result in as normal!😩On looking through my medical records goitre was mentioned twice (but I was never told, nor was I aware of it). Now on T3nonly treatment. I have lost weight since being on levo but not sure if its the T3 (on 50mcg) - I do think I switch between hypo and hyper though. Here is Paul Robinson's blog which has the link to the Thyroid Patients Canada one:

paulrobinsonthyroid.com/cou...

Janexxx😊❤️

TSH110 profile image
TSH110 in reply toJaneChapple

So maybe you can have a goitre with it then. Thanks for the link - I’ll have a read.

TSH110 profile image
TSH110 in reply toGummybearx

I was hyper for decades and had the odd hypo blip but I just thought it was normal to have endless energy, hardly eat or sleep and feel a bit euphoric, I thought I was just a high energy creative type person. It slowly reversed until it was mainly hypo with short sudden bursts of hyper but my general symptoms were mixed a lot of hyper ones but I was always freezing cold. I had a lot of horrible symptoms. The depression was off the scale.

I had one last mega hyper burst and I entered eternal hypothyroidism cos my thyroid had atrophied to nothing and died. I only just got a diagnosis in the nick of time, I was very poorly indeed by then having hallucinations sudden mood swings, paranoia, the itching was so terrible I’d scratch till my shins bled and then some more . I started to feel like I was starving all the time and would eat and eat and eat but still feel utterly famished, god it was absolutely horrendous. I thought I was going to freeze to death, at least the levo saved my life but it took years to recover any quality of life.

Thelostboys profile image
Thelostboys in reply toTSH110

So glad you are better at least.

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

What were your thyroid and vitamin results BEFORE starting on levothyroxine

How much levothyroxine did you start on

Bloods should be retested 6-8 weeks after each increase in dose

Dose is increased slowly upwards in 25mcg steps

Being left on too low a dose will make you feel worse

Levothyroxine doesn’t “top up” your own thyroid output, it replaces it.

So it’s essential to be on high enough dose

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

SlowDragon profile image
SlowDragonAdministrator

Retest thyroid and vitamin levels 6-10 weeks after stopping levothyroxine

Very common to initially feel better stopping levothyroxine, but, assuming you are hypothyroid, then likely to feel worse the longer you are without levothyroxine and the lower vitamin levels will drop

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Thelostboys profile image
Thelostboys in reply toSlowDragon

I was on 50 mgs a day i am waiting for them to clear my system then i will start a course of different medication.Im not sure of the make i forgot to say i had terrible heart palpitations as well.

SlowDragon profile image
SlowDragonAdministrator in reply toThelostboys

50mcg is only the standard STARTER dose

Palpitations are common hypothyroid symptom

Medics often think palpitations only when hyperthyroid

What were thyroid results before stopping Levo

Bloods should have been retested 2-3 months after starting on 50mcg

ALWAYS test early morning, ideally before 9am, only drinking water between waking and test and important last dose levothyroxine 24 hours before test

Unless extremely petite, eventual daily dose almost always at least over 100mcg daily

Likely low vitamin levels having been left on inadequate dose levothyroxine

Request/politely insist GP test vitamin D, folate, B12 and ferritin

Optimal vitamin levels

Vitamin D at least over 80nmol

Serum B12 at least over 500

Folate towards top of range

Ferritin at least over 70

Thelostboys profile image
Thelostboys in reply toSlowDragon

Thank you i will do as you say.

TSH110 profile image
TSH110 in reply toThelostboys

Yes I had those too. Deeply unpleasant

Easylover profile image
Easylover in reply toThelostboys

From my own experience, IT IS A BAD IDEA TO STOP THYROID MEDICATION EVER. That would be the first sign that the person who is treating you has no idea of what is going on! Trust me, going off you medicine can take up to a year to rebalace. It sounds like you need T3 or NDT. Good luck n God Bless! TSH Is foooy

Thelostboys profile image
Thelostboys in reply toEasylover

Thank You i even know myself that you should wean yourself off the tables. You are so right my Dr hasn’t got a clue i think i know more about the situation than he does.What is T3 and TSH other people have mentioned this i don’t have a clue what it means.

Easylover profile image
Easylover in reply toThelostboys

Hi, don't wean yourself. Listen to GreyGoose if nothing else. I'm telling you, there is SO much good advice on this forum n most people who just chase their tail do not listen. Please don't stop your medication. You'll feel good for about 6 or 8 weeks and then you'll crash. I'm not kidding, it will take a year to get back to where you are. Get a different doctor. Post of where you live and who recommends who to treat you! TSH is a false reading. T3 is the hormon your body uses to function properly. Sych as your heart, your head/ brain, bowel movements, spit/saliva, body temperature, sleep, you name it, is controlled by T3 ..not T4. Your body has to convert T4 to T3. If your body can't convert it then you stay ill/hypothyroidism. The doctors are ignorant because they've been trained wrong. The pharmaceutical drug makers make billions of dollars off of T4. It's a hoax but the medics believe in a false antiquated shewed in model by these big companies. Keep studying n asking questions. You can get well. Believe the people who tell you that you need more not stop thyroid medication!!!!!! Stopthethyroidmadness.com is a place to start but I like this forum. I've gotten tons of gelp n knowledge here. Blessings, Easy

Thelostboys profile image
Thelostboys in reply toEasylover

I was so poorly taking levothyroxine i was on 50mg i stopped by my self and as you said i felt well for about a week but i came back with a bang. I started taking them again but after a few months i couldn’t cope the side effects were horrific I thought i was going crazy every day i was phoning the doctor crying.In the end after i had been on them about 10 months he just said stop taking them.To tell you the truth i think he was just fed up with me. It’s been 6 weeks since i had one so i am going for another blood test and pray he can find a alternative And like you i am so glad i have joined this group so much help.Thank You.

Easylover profile image
Easylover in reply toThelostboys

I am hoping things get better for you. A lot of people CAN NOT tolerate T4 aka levothyroxine. It actually makes them ill. Paul Robinson is on line. He couldn't take t4 either and almost died. There are people on this forum who cannot take T4/ levothyroxine. There are many books out there and a woman from Canada...Dr. Tania Smith? Anyway. Everyone's different and it's quite a journey. Please be careful of scam artist private message you about buying T3 from them. I didn't pay attention. We're supposed to ask an administrator whether they are legit or not.

Thelostboys profile image
Thelostboys in reply toEasylover

I never realised what i was letting myself in for i just thought i would take a tablet feel better and everything would be fine.But what a carry on it is isn’t it 🤣

Easylover profile image
Easylover in reply toThelostboys

I was thinking, the doctor should have tested your blood levels before he took you of your meds. Make sure he TESTS T3 and all the vitamins nineral levels SlowDragpn talked about I think he MUST CHECK T3 OR WHY EVEN GO TO THAT DOCTOR?

Easylover profile image
Easylover in reply toThelostboys

healthunlocked.com/thyroidu...

Anthea55 profile image
Anthea55

It's worth finding out what is in the levo you've been taking. The extra ingredients are called excipients. Your pills should come with a paper showing details.

Assuming that you are in the UK, you may find this post helpful. It shows the excipients in Levothyroxine by brand. For example if you are sensitive to milk products you won't want levo which contains lactose. Some people have problems with Teva and it's thought that this may be due to the Mannitol.

healthunlocked.com/thyroidu...

Thelostboys profile image
Thelostboys in reply toAnthea55

The brand is called acorn i really hope my doctor will be able to find a brand that i am alright with as i am so very tired all the time. I am going to make a appointment for a blood test as it will be seven weeks next week since i have had any .Thank You

Anthea55 profile image
Anthea55 in reply toThelostboys

I've not heard of that brand. Are you in the UK or where are you?

The person who knows most about this is helvella

helvella profile image
helvellaAdministrator in reply toThelostboys

So far as I know, there is no "Acorn" brand of levothyroxine - not in the UK, nor anywhere else.

It could be that my searching has failed and I have simply missed a brand that does exist. (Certainly possible, even likely, if it is an own-brand supplier outwith the UK). Or, possibly, the name has been mis-reported here.

Anthea55

RedApple profile image
RedAppleAdministrator in reply tohelvella

helvella I suspect that it's Accord, which was autocorrected to Acorn :)

helvella profile image
helvellaAdministrator in reply toRedApple

I suspect you are right! :-)

It is the most likely.

But there are South African and Vietnamese Acorn pharma companies - and, at time of reply, I wasn't sure where the original poster was located!

Thelostboys profile image
Thelostboys in reply toRedApple

So very sorry it is ACCORD i didn’t realise i had spelt it wrong.

SlowDragon profile image
SlowDragonAdministrator in reply toThelostboys

The brand is called acorn

You might mean brand is Accord?

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

janeroar profile image
janeroar

I doubt levo was making you ill. Its more likely because your ignorant doctor kept you on a starter dose for a year and took you off it instead of slowly increasing your dose. All those symptoms are suggestive of you being under medicated.

Post your blood results here and get the help you need. The more you can take charge of your own health and become informed about what’s happening in your body the better instead of hoping doctors will do the right thing.

Easylover profile image
Easylover in reply tojaneroar

Couldn't have been said better!!!!

Munting profile image
Munting

I have all the symptoms you have. They are truly awful, and I have been living like this for a long time. I take Levothyroxine oral solution (the tablets killed me because of what’s in them), and can tolerate most brands except for Mercury Pharma. Also, you will start to feel better when you get to a higher dose. I am currently taking 125 mcg daily. I also have to take a digestive enzyme called Creon, as I suffer with constipation and have an underperforming pancreas and therefore wasn’t digesting anything properly. I also have to take Rabeprazole (a stomach acid tablet) which helps the Creon work more effectively, but has affected my Levothyroxine absorption, even though I take it 4 hours after, so I’ve just had to up my Levothyroxine dose as I felt the worst than I have in a long time, and the 125 dose is early days for me, but I do feel a slight improvement 🤞. I also have to be very strict with what I eat - I have to eat the same thing every day because so many foods hurt me. I even have to be careful with creams, soaps, shampoos etc because it all sets off the itching and pins and needles etc.

I don’t know if any of the above helps you, but just to let you know that you’re not alone, and although every day feels like a nightmare, you will get there.

TSH110 profile image
TSH110 in reply toMunting

do you think you’ve got atrophic autoimmune thyroiditis too? I had those symptoms too just horrendous, I had no goitre at all.

If you haven’t seen it this is an interesting read about AAT:

thyroidpatients.ca/2018/12/...

I ended up taking NDT as Levothyroxine left me feeling terrible. I feel much better on NDT I needed a bit of T3 and everything resolved. Shame the NHS refuses to prescribe it 😡

Munting profile image
Munting in reply toTSH110

Hi. Thank you. It’s something I’ll look into. I also think that my stomach issues exacerbate everything too unfortunately, and it doesn’t help that I’m dealing with a severe case of gastritis atm 🙄 x

TSH110 profile image
TSH110 in reply toMunting

Oh dear I hope you feel better soon

BB001 profile image
BB001 in reply toMunting

I'm sorry you are suffering. I'd like to suggest you copy the above text and create your own post so people can comment. Adding blood test results would be a good idea as I have a suspicion that you might be a poor converter of T4 to T3, but without blood test results that contain fT4 and fT3 it is impossible to know.

Thelostboys profile image
Thelostboys in reply toMunting

I am so sorry you have these symptoms i can’t believe how you cope every day i pray you feel better very soon. I was on medication that i need that don’t act well with levothyroxine but the doctors just can’t be bothered to look

Munting profile image
Munting in reply toThelostboys

Thank you so, so much - I’m not going to lie, it’s been unbelievably hard and I think the only thing that keeps me going is my family and friends, the people on here, my Naturopath, the fact that I work for an amazing company, my sheer dogged determination and pure luck. I could have given up many times … but you can’t.

Thelostboys profile image
Thelostboys in reply toMunting

Could you not find another medication i couldn’t stand it i was in bed most of the time or crying.

Munting profile image
Munting in reply toThelostboys

Oh bless you, I’ve suffered like that too, so I know exactly what you mean. Rabeprazole is actually the best for me, hence why I’ve upped my Levothyroxine, which I could tell needed to happen, plus I’ve noticed that my dry, itchy scalp is getting better. I’d also tried others …. it’s a very long story …. and after a trip to A&E due to severe gastritis, I got put on this one which is the one I can tolerate the best. Others didn’t work, and I was walking round like a zombie. Last Friday I felt awful, and virtually slept all day, I’ve upped my dose and haven’t nodded off once 🙂. Hope that makes sense.

Thelostboys profile image
Thelostboys in reply toMunting

Oh my the itching is horrendous and i’m so glad you are feeling better i hope i can find something that helps me.I really thought i was going crazy .

Munting profile image
Munting in reply toThelostboys

It certainly is, and it’s there 24/7 in its various levels of severity. We are all in our own journey with this, but we are strong and will get there in the end.

Thelostboys profile image
Thelostboys in reply toMunting

It is there 24/7 i wish i had never heard of Levothyroxine.I pray my doctor can find something that works for me.

AVNA profile image
AVNA

That would be right because each time my doses is changed, I have been asked to wait six weeks to have the blood test.

RedApple profile image
RedAppleAdministrator

Thelostboys,

You've received lots of replies on your post. I hope you're finding it helpful so far, and not feeling too overwhelmed by all the information 😊

As you may have realised, there is more than one possible reason why you may have been feeling so bad on both the 25mcg and 50mcg doses of levothyroxine.

If you can get the details from your surgey of the thyroid test result that made the doctor diagnose you, along with any thyroid tests you've had done whilst on the levothyroxine, please add them so that we get a better picture of your thyroid levels.

Just a couple of questions for clarification:

How long is it since you stopped taking the levothyroxine? And how are you feeling since you stopped it?

I notice you mentioned you previously had a goitre, but that it's gone now. Did the goitre go whilst you were taking the levothyroxine? If yes, do you have a rough idea of how long it took for it to go?

Thelostboys profile image
Thelostboys in reply toRedApple

I didn’t realise so many people were suffering my goitre it went whilst i was on the tablets i’m not sure how long it took since i have been off the tbs 6 weeks next week i have been so tired.I am going back to the doctor next week because i know i need some type of medication but i will never take Levothyroxine again i have a list ready for him 🤣

RedApple profile image
RedAppleAdministrator in reply toThelostboys

If you can get the details of the test results before you next see your docotor, please do let us know. We may be able to see from that info whether your dose was too low.

It's a long time since I was first put on levo, but I still clearly remember how awful I felt on 50mcg. I was in A&E because my symptoms were so bad, but they didn't know what to do. It wasn't until dose was increased to 75mcg that I began to see a glimmer of light at the end of the tunnel.

For some of us, it is a long journey to thyroid wellness, quite often with one step forward, followed by two or more steps back, then forward again etc.

At least you know now that there are people here to help and support you along the way.

Thelostboys profile image
Thelostboys in reply toRedApple

I will let you know i know what you mean about being in A-E i almost phoned 111 one day i honestly thought i was having a heart attack. Thank You So Much For Caring.

HoneyBeeGal profile image
HoneyBeeGal

Thelostboys,

Have you and your doctor considered Armour Thyroid or another natural dedicated thyroid replacement such as Thyroid NP? After taking Synthroid and Levothyroxine for years and still having many unresolved symptoms, I improved after switching to Armour Thyroid. It was more expensive on my old insurance compared to the lab created thyroid meds but worth it. It’s surprising that the doctor would take labs six weeks after you stop the meds. Did he take labs periodically while you were getting thyroid hormone replace to see if you were over- or under-medicated while on thyroid medicine? Many doctors check TSH, T3, and T4 at least every six months.

RedApple profile image
RedAppleAdministrator in reply toHoneyBeeGal

HoneyBeeGal 'Have you and your doctor considered Armour Thyroid or another natural dedicated thyroid replacement such as Thyroid NP?'

Here in the UK, desiccated thyroid is an unlicensed medicine, and extremely expensive to import from the USA. Hence it's almost impossible to get these medicines prescribed here.

HoneyBeeGal profile image
HoneyBeeGal in reply toRedApple

That’s a shame. I heard the natural thyroid medicines are under some sort of review in the U.S. I still have many health issues, like fibromyalgia, which probably tie right back to low thyroid even with treatment, but the natural thyroid improved many symptoms. I think it has to do with T3. I know some people get prescribed T3 too, but it is not as common.

Thelostboys profile image
Thelostboys in reply toHoneyBeeGal

I have those tbs on my list i had a check up 3 weeks after starting the tbs and it was normal but i have read levothyroxine only stays in your body for 6 weeks after stopping them so i am going back to try something new.

Smartmam profile image
Smartmam

In my case 3 weeks. Everyone is different. After few months I try to take few days off. It helps my body to clear of all the chemical from my body. I noticed, one week is fine. In 3 weeks I do feel unwell. Then I go back on my med. Nothing to do with Dr's. I follow my own process. It does work with me. I have been on thyroid for over 30 years. First few years were really hard

Beingreal99 profile image
Beingreal99

when i was given too much at once, i had strange head aches and pings in my head in the back and strange eye headache.....i had to go back lower and start again w lower dosage and gradually rise. HE should have tested you right away to see what your levels were on medication but they could have not showed the overdose because for me...it was my body reacting to getting outside hormone and that is why i had to gradually had to increase every 6-8 weeks and keep retesting.....some people are more sensitive than others but YOU NEED YOUR PREVIOUS LABS before he gave you meds. I also have ear ringing and told it goes w thyroid meds ...and hypothyroidism, Insist on previous test, Insist he test your TSH, AS WELL AS FREE T3 , FREE T4 and antibodies and also...you need certain nutrients for your thyroid to work with or without med....which most dr will not tell patients.....a thyroid support supplement may help

Thelostboys profile image
Thelostboys in reply toBeingreal99

I don’t know my readings i had a check after a couple of months but i was so ill he told me to stop taking them.I have not had any for 6 weeks i am so tired.I am going back to sort another medication out.I did feel fine for a couple of weeks.

Beingreal99 profile image
Beingreal99 in reply toThelostboys

I would encourage him to test your b12 and d3 too

Catseyes235 profile image
Catseyes235

I completely agree wit h Slow Dragon that the low dose of Thyroxine you’ve been kept on has been the CAUSE of your symptoms and not the levo itself. You really must post your results.

Thelostboys profile image
Thelostboys in reply toCatseyes235

I honestly don’t want to take levothyroxine ever again i am just hoping the dr can find another medication for me.Thank You.

Easylover profile image
Easylover

THH110 gave you good advice as well. Listen to her. If you don't follow the advice of people who have been there, then no one can help you. 🙏

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