Thyroid UK

Hello new member here

Does there ever come a time when levothyroxine is stopped?

DEC 2017

(175mcg levothyroxine)

TSH 6.5 (0.2 - 4.2)

FREE T4 14.7 (12 - 22)

FREE T3 3.3 (3.1 - 6.8)

TPO antibody 475 (<34)

TG antibody 266.5 (<115)

Endo says he will not increase until my results represent those of someone taking a high dose as I am. GP thinks I am not taking the medication properly. Diagnosed 2013

Thanks

35 Replies
oldestnewest

As far as I’m aware only with misdiagnosis. Or if it no longer works to convert to T3. And you only need to take T3. Thyroidism is usually for life so you’ll be medicated accordingly through out your life time.

Reply

Ok thanks. GP is debating whether to stop my medication or not. Diagnosed hypothyroid 2013.

Reply

Hi 👋🏾 Aimi88,

Sorry I forgot to say welcome. There was another member who was in a similar boat. Apparently the Gp had given up. You’ve been hypo for 4/5 years so that should be proof that you are.

Why has s/he decided to stop your meds and in doing so technically slowly kill you. You won’t get better as the thyroid slowly dies in us hypos and needs the hormones replaced. Hence your meds. Do you have any test results with ranges it’ll look something like the following 5 (2.0-6.4) a number followed by more numbers in brackets. We need TSH, T3&T4 levels etc. Are you taking any supplements and vitamins?

I would get a second option but I’m sure you’ll get more replies to clarify.

But long story short s/he needs to give you reason to stop. It’s not curable but it is manageable.

1 like
Reply

TSH 6.5 (0.2 - 4.2)

FREE T4 14.7 (12 - 22)

FREE T3 3.3 (3.1 - 6.8)

Endo says he will not increase until my results represent those of someone taking a high dose as I am (175mcg levothyroxine) and GP is contemplating stopping it because he thinks I am not taking it properly

Reply

No idea where to go with supplementing. My levels are a mess :(

Reply

List of symptoms from hypothyroidmom site:

Chronic fatigue

Less stamina than others

Long recovery period after any activity

Inability to concentrate

Insomnia

Needing naps in the afternoon

Weakness

Waking feeling tired

Frequently oversleeping

Weight gain

Inability to lose weight

Diminished appetite

Cold extremities

Cold intolerance

Internal shivering

Clammy palms

Cold feet

Excessive perspiration

Low basal body temperature

Slow movements

Slow speech

Frequent infections

Frequent colds

Candida

Repeated urinary tract infections

Swelling of eyes

Swelling of lips

Swelling of neck

Swelling of legs

Swelling of ankles

Difficulty swallowing

Sensation of lump in throat

Pain and tenderness in neck and thyroid area

Difficulty taking deep breath

Goitre

Burning sensation in throat

Choking fits

Salt cravings

Sweet cravings

Dry mouth

Oversensitive hearing

Noises in ears

Deafness

Internal itching of ears

Dry and scaly ear canal

Vertigo

Poor focusing

Double vision

Dry eyes

Gritty eyes

Achy eyes

Blurred vision

Sensitive to light

Frequent tics in eyes

Dark rings around eyes

Puffiness around eyes

Hair loss

Dry hair

Frizzy hair

Coarse hair

Eyelash loss

Brittle nails

Flaky nails

Ridged nails

Dry skin

Cracked heels

Eczema

Easy bruising

Tingling in feet, legs, toes, face, back, face

Headaches

Wrist pain

Joint stiffness

Tendonitis

Aching bones

Constipation

Loss of appetite

Nausea

Flatulence

Heavy periods

Irregular periods

Severe crampy periods

Loss of libido

Infertility

Jumpy

Easily startled

Clumsiness

Feeling faint

Dizziness

Memory loss

Confusion

Poor concentration

Albuminuria

Low blood sugar

Low heart rate

Poor circulation

Fluid retention

2 likes
Reply

Also have problems controlling blood sugar. I get massive sugar cravings and I can sometimes get depressed so I get rid of the feelings by eating something like chocolate. Then I gradually feel more and more tired after that so I then go to sleep. I wake up about 30 mins or more later feeling shaky, sweaty and nauseous and headachy. No idea why. Not diabetic despite 2 generations of my family having it (mum and uncle and grandmother)

1 like
Reply

I became diabetic a year after being diagnosed Hypo so take care .Reduced carbs and increase fats worked for me,

1 like
Reply

Prescribed iron, vit D, folic acid and B12. None of my levels look good and I feel no better

Reply

Post your results and what supplements you are taking

Here is detailed supplements advice from SeasideSusie on how to improve Low vitamins due to under medication

healthunlocked.com/thyroidu...

Reply

Dec 2017

Ferritin 32 (15 - 150)

Folate 1.9 (2.5 - 19.5)

Vitamin B12 224 (190 - 900)

Vitamin D total 50.3 (50 - 75 suboptimal, Advise on safe sun exposure and diet)

Do I restart ferrous fumarate? Am meant to be taking it

Taking 3000iu oral spray (Better You) since March 2015, have been getting pains in my ribs after a few weeks of taking it

Reply

These are all terrible because you are under medicated and need Levothyroxine dose increase.

Gluten free diet helps very many

But you must get vitamins optimal too

You possibly need even higher dose vitamin D. Many of us need 6000iu

Magnesium and vitamin K2 as well

Ferritin, needs to be minimum of 70

Follow the advice on link above by SeasideSusie

Your B12 and folate are extremely low. Your GP should test for Pernicious Anaemia before starting loading B12 injections

Folic acid supplements should not be started until after first B12 injection

Insist on low B12 being treated.

Ask advice on PAS healthunlocked

healthunlocked.com/pasoc

If you can't get treatment then you may have to self supplement with B12 sublingual lozenges and good vitamin B complex

This excellent article actually suggests daily sublingual B12 is better anyway

drgominak.com/sleep/vitamin...

Prof Toft - article just published now saying T3 is likely essential for many. Also discussing that very very many of us on Levo are under treated

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

Reply

I cannot believe your endo is for real. You are under medicated. Some people do need a high dose of levo to feel well. You are under medicated. Your TSH should be nearer 1 and your T4 and T3 are low another sign of being under medicated.

Have you had tests for iron, ferritin, folate Vit B12 and Vit D levels. Low levels can mean you do not use levo properly. Have you had tests for thyroid antibodies. If they are positive your vitamin levels will be trashed and you need to try a gluten free diet.

I am exasperated by the sheer numbers of people on here who are being badly treated, as in NOT treated by their so called Endo!

5 likes
Reply

TPO antibody 475 (<34)

TG antibody 266.5 (<115)

Reply

No, Levothyroxine is not a medication, it's a replacement hormone.

Just like a diabetic needs insulin

We need Levothyroxine to stay alive.

Your results show you are under medicated. You probably have low stomach acid as result of being under medicated.

This becomes catch twenty two, as you struggle to absorb Levo as well with low stomach acid

You presumably have high thyroid antibodies? this is Hashimoto's also called autoimmune thyroid disease.

Very likely low vitamin levels too. Have you got recent test results for vitamin D, folate, ferritin and B12?

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

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

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

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:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

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

With Hashimoto's we need high enough dose of Levo to bring TSH down to around one and FT4 towards top of range.

Vitamins at very good levels

And most need to be strictly gluten free too

If FT3 then still remains low, then like many with Hashimoto's you may need small dose of T3

Your endo is probably only a Diabetes specialist.

There is research that shows taking Levothyroxine with vitamin C may help improve Levothyroxine uptake

ncbi.nlm.nih.gov/pubmed/246...

Reply

GP debating whether to stop it because my levels never look good and thinks I am not taking it properly. Endo will not increase until my levels reflect those of someone who takes 175mcg levothyroxine

Reply

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Reply

If it was stopped you would become seriously and possibly dangerously ill. We can not live with out thyroid hormones

Any endocrinologist should never consider stopping medication

1 like
Reply

Some posts on here are from people taking as much as 300mcg. and we are all different so there is no typical results at a particular dosage. GP is clueless.

1 like
Reply

Yes, sack the endo - ask to be referred to another if possible or do without :-)

Reply

Hi Aimi88

It really angers me when doctors do this. It's as bad as victim blaming or insinuating that you are not compliant. As Crimple says, some people need a high dose, we are not all identical robots!

Do you by any chance have some results (and the ranges) for some mineral and vitamin tests as well? Doctors are very inclined to say "normal" just because the result might be barely within the range when it's crucial for some of these things to be within a particular level just for T4 to T3 conversion to take place. Since you are underdosed anyway we don't know how good you are at converting.

Also have you had your antibodies tested. That will be TPO and TgAb.

Oh dear you have done....sorry I'm so slow at typing. :(

1 like
Reply

TPO antibody 475 (<34)

TG antibody 266.5 (<115)

(175mcg levothyroxine)

TSH 6.5 (0.2 - 4.2)

FREE T4 14.7 (12 - 22)

FREE T3 3.3 (3.1 - 6.8)

Ferritin 32 (15 - 150)

Folate 1.9 (2.5 - 19.5)

Vitamin B12 224 (190 - 900)

Vitamin D total 50.3 (50 - 75 suboptimal, Advise on safe sun exposure and diet)

Do I restart ferrous fumarate? Am meant to be taking it

Taking 3000iu oral spray (Better You) since March 2015, have been getting pains in my ribs after a few weeks of taking it

Reply

I’d suggest restarting FF at beginner level. And a bit of Vit c to help absorption. Your Free Ts(3&4) need to be mid to top of range. I’m surprised you’re functioning well.

GP should look into your vitamin levels as your natural active ones your body makes and the ones you supplement need to be of a high enough level to complement your Levo intake. 175 mcg is a lot. For some. Others take 300 mcg. It’s about YOU and how YOU feel. It’s your body. You get one, of your GP doesn’t know what he’s doing they can’t whip out a new one for you after the damage has been done. Please ask for an Endo referral. And see a different GP. You are too important to give up on. You’re taking your T4 I assume and correctly as you’ve had 4/5 years practice. Are you taking it first thing with a full glass of water an hour before food and drink. And three - four hours before any vitamins. You’d be surprised how many people do not know to do that and it effects absorption. Hence why your Levo May seem less affective. I’d ask for written proof that he thinks you’re not taking your T4 and what recommendations he’s suggested you make to help the problem now that you ‘are’ taking it.

Reply

I take levo with water an hour before food and drink and I leave 4 hours before supplementing

1 like
Reply

You need a new doctor ASAP. He/she is a complete twit.

1 like
Reply

It makes me very sad reading some of these posts. Who are these so called doctors ?

Please seek help from someone who had a brain Good luck x

1 like
Reply

Welcome! The easy answer is no! If your results show you are over medicated then yes you may be stopped for a few days to use up the extra and then restart at a lower dose and retest after 6 weeks to make sure things are correct. BUT your results are saying you are undermedicated so so t let him cut you back.

You mention something else which made me thing your vitamin etc levels are low. Is that so and are you supplementing? Search for SeasideSusie. She has brilliant advice on that, how to correct etc. I also had that problem at one point but it's not a quick fix! Took me 5 months but I've been pretty good since. The length of time is down to how low Vit D, B12, folate and ferritin are but we are often low in one or even all of these but they help your thyroid to work better and get rid of some of your symptoms as well.

Sadly nothing in the Thyroid world works quickly. We mustn't try to speed it up as it doesn't work like that and can set us back further.

Have a look at the site of Thyroid U.K. They run this forum and there is a lot of info one there to help explain things and to hopefully help you on your way to wellness Pease shout out if anything you don't understand. Nothing is too trivial and remember we have all been where you are so we understand and are here to help.

Get into the habit of asking for a copy of your results-good to track your progress and you can add on your dose and any symptoms and so use it as a progress diary. Don't forget to ask for the ranges so you can quote them on here if you want results advice. The ranges differ from lab to lab so we would just be guessing without them.

There is a huge list of symptoms on the site so useful to jot down what you are experiencing and many you may not realise being thyroid related! Don't worry we don't get all of them but because the thyroid effects cells in your body we can get a wide range of problems between us. Doctors don't always realise problems bam vary so much but you can give him a list of your problems if he isn't aware of that. Thyroid Uk who run this forum are recommended on NHS Choices for thyroid dysfunction so you can tell him where your advice is coming from if need me.

Hoping things go well for you but you need patience and time to get better but we are here to help you, you are not on your own anymore.

2 likes
Reply

It's worth taking his words seriously to be on the safe side. I had increasing TSH until i made SURE that my coffee was taken an hour after my pills. I had been told originally that half an hour was all that was needed. Good luck!

Reply

You may not be taking levo corecly. It must be on an empty stomach, and then you have to leave an hour to be safe before you eat breakfast, and if you are taking vitamins you must wait to take those four hours after taking your levo. Otherwise the food and the vitamins will interact with levothyroxine absorption. My new technique, which seems to be working really well, is, when I get up to go to the bathroom in the middle of the night, Anywhere between 3 AM and 7 AM, I leave the pill and a glass of water next to my bed and I take it then. That way when I wake up in the morning, I can just go straight to breakfast, since ours have gone by.

In respect to your other question about stopping levothyroxine, I’m not sure if you mean to ask if it is possible to ever stop having to take these thyroid medications, but if it is, I do know people that have reversed their thyroid disorder, and cotton read all of the anti-bodies of at least Hashimoto’s. It does require however, a lot of determination, you have to quit wheat, and other grains that may be affecting you, and a bunch of other food that your body may be reacting to. But the best way to find out is to go to a really good functional doctor who actually cares about helping you find the root cause of your problems. It is a challenge to find the right doctor for oneself!

Reply

Correction: gotten rid, not cotton read.

Reply

I am taking it properly thank you

Reply

On an empty stomach 6 hours from food and no vitamins

Reply

What I would like to know is why my levels aren't improving and why you would think I haven't been taking it properly when I know I have been?

1 like
Reply

I think this was directed at SpicyLotus. But a lot of us don’t read the instructions or are told when / how to take Levo with relation to food/ water/empty stomach. There was a post on here yesterday from someone who was taking their iron tablets with their Levo. I bet 75% of us probably did to start with. It’s not a assault at you. And probably feels like we’re siding with your Endo. There are about 30 replies. Some people don’t read all of them so might seem like an attack when it’s not.

Re, levels not improving. You probably have low stomach acid. Even if you are doing everything else right (timings, vits optimal). These will impede your absorption of T4 - which your Endo should know about but as most of them don’t he has made the assumption you’re not taking your T4 properly.

You weren’t to know this, maybe investigate if you have low stomach acid. Apple cider vinegar with mother. - type that into the HU search bar and I think Clutter posted some links above. Also 100% gluten free for six months should help. But you might be in the 20% that gf doesn’t affect.

We’ll get you through this. I’d apologise for what might seem like negative comments but it’s concern.

🧡💜🧡💜🧡

1 like
Reply

Thanks

Reply

You may also like...