taking more than prescribed levothyroxine - Thyroid UK

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taking more than prescribed levothyroxine

raine-wager profile image
24 Replies

I have just realised I am taking 175 mg levothyroxine instead of 125mg I think I’ve only been doing it for a couple of days, but I feel a bit better. Should I keep doing it? What are your thoughts on this?

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raine-wager
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24 Replies
Buddy195 profile image
Buddy195Administrator

Can you share your most recent thyroid blood tests with us? Personally, I would want to ensure that an 50mcg increase would not push my FT3/4 over range, as this can lead to adverse symptoms .

Are you still taking combined Levo and Liothyronine?

If you choose to stay on an increased dose, I would definitely retest levels after 6-8 weeks on this new dose.

SlowDragon profile image
SlowDragonAdministrator

That’s a huge increase

Only ever increase by 25mcg max per day

And get TSH, Ft4 and Ft3 levels tested BEFORE considering any dose change

Test early morning and last dose levothyroxine 24 hours before test

If on T3 - day before test split T3 into three doses spread through the day, last dose approximately 8-12 hours before test

raine-wager profile image
raine-wager in reply toSlowDragon

I did it by accident, I’m not on t3 it didn’t agree with me. I mistook 75mg for 25mg have checked my bp and heat rate it’s fine. I thought I would just carry it on for a week! How would I know if it’s too much?

SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

I think you would soon find it’s too much

You could increase to 150mcg if blood test showed you needed it

what were last test results at 125mcg daily

It’s MUCH harder reducing dose if on too much….so you wouldn’t increase by such a larger amount

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approximately 1.6mcg per kilo of your weight per day

All four vitamins need to be optimal as well

Buddy195 profile image
Buddy195Administrator

You would know by testing TSH, FT3 and FT4 after 6-8 weeks on an increased dose. It is not advisable for FT3 or FT4 to be over range, as this can affect your heart. It is possible that taking an extra 50mcg may not have noticeable effects on your system for a couple of weeks. It is recommended on the forum to increase by 25mcg of Levothyroxine and it is important to retest after 6-8 weeks on an adjusted dose.

Some members, myself included, have increased heart rate, faster pulse, tremor etc if adjusting medication too quickly. Personally, I’m very cautious and only adjust upwards by 12.5mcg of Levothyroxine (using a pill cutter), as ‘low & slow’ suits me better.

What were your last thyroid blood results (if prior to the recent increase)?

raine-wager profile image
raine-wager in reply toBuddy195

my last bloods were in September

X
SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

How much levothyroxine were you taking then

Was test done early morning and last dose levothyroxine 24 hours before test

FT4: 14.6 pmol/l (Range 12 - 22)

Ft4 only 26.00% through range

FT3: 4.5 pmol/l (Range 3.1 - 6.8)

Ft3 better at 37.84% through range

most people when adequately treated will have Ft4 at least 60-70% through range

No folate, ferritin or B12 results

What vitamin supplements are you currently taking

Time to get new test - 6 weeks after being on constant unchanging dose and brand levothyroxine

Test TSH, Ft4 and Ft3 plus folate, ferritin and B12

raine-wager profile image
raine-wager in reply toSlowDragon

I think that was when he reduced my Levo from 100 to 75 and put me on 5 of liothyronine, I take vit d and b12, I am very overweight. I came off liothyronine and was put back up to 100 levothyroxine. I have no energy, can’t do much without feeling exhausted also have many other diagnosis. Have a pacemaker, subclavian steal syndrome, diverticulitis, sleep apnea, chronic fatigue, granuloma annulare, pityriosis lichenodes chronica and no gall bladder or womb. Plus nearly all symptoms of hypothyroidism to the extreme 😩

SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

Get full thyroid and vitamin testing done

Come back with new post once you get results

ESSENTIAL to test thyroid antibodies if not had these tested

You need Both TPO and TG antibodies

Have you had antibodies tested in past?

Presumably you do have autoimmune thyroid disease as granuloma annulare is strongly linked to it

all thyroid blood tests early morning, ideally just before 9am 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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

currently on offer at £68

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(But Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

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

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. 

 A trial of strictly gluten free diet is always worth doing

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

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Both dairy and gluten are inflammatory foods

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies 

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming 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...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Gluten free diet might also improve granuloma

raine-wager profile image
raine-wager in reply toSlowDragon

last time I had antibodies done was in 2021 will attach. Never been told I’ve got hashimoto or really been told anything about my condition. Seen lots of different consultants in all areas but never get anywhere. I was only put on Levo because the first consultant just wanted to get rid of me and discharged me. I read all I can most of it doesn’t sink in. I just feel at a loss with it all..

.
SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

They are the wrong antibodies

They were testing for autoimmune HYPERthyroid also called Graves disease. That’s TSI and Trab antibodies- both were negative.

TSH was very low at 0.08 ….so they were testing for hyperthyroid

Autoimmune HYPOthyroid disease- also called Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

These results strongly suggest you probably have Hashimoto’s

For Hashimoto’s you need TPO and TG thyroid antibodies tested - test via Medichecks or Blue Horizon

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

currently on offer at £68

Medichecks Thyroid plus TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight

If overweight then you do likely need dose increase

But we only increase by 25mcg at a time

Approximately how much do you weigh in kilo

Perhaps request 25mcg increase to 150mcg and retest in 6-8 weeks

Which brand are your current 100mcg and 25mcg tablets

Many people find different brands are not interchangeable

TiggerMe profile image
TiggerMeAmbassador in reply toraine-wager

Looks like a small rise would be ok but 50 is a big leap... I'd be enquiring about your creatinine level and kidney function a little more T4 could help so they might approve a rise, T3 improved my kidney function

raine-wager profile image
raine-wager in reply toTiggerMe

Here are my results for creatinine

Creatinine
TiggerMe profile image
TiggerMeAmbassador in reply toraine-wager

What were you doing in February 2022 as you have much better levels then?

TiggerMe profile image
TiggerMeAmbassador in reply toraine-wager

This is how mine reads for comparison... if you click on the information link it explains more

Yours makes no comment about eGFR ml/min>60 ?
Tiamosta profile image
Tiamosta

Hi there if it helps, I was taking 125 instead of 100 last year and only realised about 12 weeks later, I felt great for a time then crashed completely and I am now still battling to get my hormones balanced. My T3 is sky high and my t4 are rock bottom. It has now been 4 months of trying to get back to 'normality'and I am still not there. I would advise not to take an increment in Levo without the need to lightly. Maybe get your bloods tested first.

raine-wager profile image
raine-wager in reply toTiamosta

Thinking about what you have said, you’re right I always feel better for a while when meds increased then back to feeling awful. I think I might stay with an increase but not that much. How do we know when we are on the right amount?

SlowDragon profile image
SlowDragonAdministrator in reply toraine-wager

most people when adequately treated on just levothyroxine will have Ft4 eat least 70% through range and Ft3 at similar level

Always test thyroid early morning and last dose levothyroxine 24 hours before test

Essential vitamin D, folate, ferritin and B12 all at GOOD levels

Frequently gluten and dairy free diet helps or is essential with Hashimoto’s

Agree with Tiamosta here. Can feel great initially but takes a while for the body to adjust and then when it does you can feel very unwell. I would advise caution and stay on prescribed dose and then see how you are feeling in a couple of months?

chrisbuy63 profile image
chrisbuy63

sorry you are dealing with so much ...perhaps just a small increase to start with and then have a chat with doc to say perhaps 25mcg is better.

Charlie-Farley profile image
Charlie-Farley

I have documented my journey to therapeutic dose of levo as a sort of case study and written reports that I submitted to GP prior to appointment (that’s on one of my posts) All sat on my profile- just click on my face if you want a gander. I found keeping brief notes on a month to view calendar was extremely useful in mapping my symptoms against dose increases and blood test results. Just as I noted anything- it wasn’t a daily dear diary 😂

Low and slow is the way with dosing.

Take your weight in Kg and then use the guide dose provided by SlowDragon (1.6)

Your weight Kg x1.6 = guide as to what might be your final dose - BUT this is a guide - symptoms are the fine tuning and most important diagnostic tool.

😊👍

raine-wager profile image
raine-wager

update.. back to prescribed dose , have to wait for endo appointment now….

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