Stopped my thyroxine 4 weeks ago - stupid I kno... - Thyroid UK

Thyroid UK

120,346 members140,091 posts

Stopped my thyroxine 4 weeks ago - stupid I know - could I double dose up to get back on track?

Moog77 profile image

I've recently been feeling great albeit struggle a bit to get up out of bed in the morning. As a result I told myself that the small dose of levo I take (50) was not needed. So I stopped it on my own steam and have steadily been sliding into hell. I spoke to my gp Monday and she was not impressed with my actions- understandably. I recognise that regardless of dose it appears I need it. Can I double up dose for a bit or just going to have to ride it out until things stabilise again? I've been on the same dose since May 2019. Also given my most recent results would I actually have been better to increase dose a little?

Most recent results in April were:

TSH 2.78 (0.27 - 4.2)

Ft4 14.8 (12 - 22)

Ft3 3.9 (3.1 - 6.8)

Ferritin 49

Folate 21

Vit d 78

B12 150

I have coeliac disease so monitor vit and Mineral levels regularly. Also recently just recovered from gallbladder surgery.

Just to reiterate I know stopping my meds was very very stupid.

45 Replies

I have done the same and made myself very ill so you are not alone.Afraid you have to build up again in 12.5mcg or 25mcg increases.

50mcg is an initial dose and you are correct in thinking that you really needed an increase. Usually we look to TSH being around 1 as a rough guide and the thyroid hormones FT4 and FT3 being over halfway through their ranges. Then it is a case of how you feel.

Moog77 profile image
Moog77 in reply to Lalatoot

I feel so stupid ...and like death.

I need to get stable and go back to gp to see if we can increase meds. They were quite happy with those in April and go with the 'in range' numbers. I'm happy to fight my corner. There is a younger doctor in the surgery that I'm going to approach regarding this as she seems fairly forward thinking.

Thank you for replying.

SeasideSusie profile image
SeasideSusieAdministrator

Moog77

I don't think you should double up, just go back to the dose you were taking before you stopped.

Most recent results in April were:

TSH 2.78 (0.27 - 4.2)

Ft4 14.8 (12 - 22)

Ft3 3.9 (3.1 - 6.8)

These results show that you were undermedicated at the time. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. NICE guidelines show that TSH should be no more than 2.5. So your TSH is too high and your FT4 is only 28%through range with FT3 just 21.62%through range.

Start back on your normal dose and retest 6-8 weeks later, then see where your levels lie, you may then need to increase your dose, retesting again 6-8 weeks after any dose change.

When testing thyroid we always advise :

* Test no later than 9am to give highest possible TSH

* Nothing to eat or drink except water before the test

* Last dose of Levo 24 hours before the test

* If you take Biotin or a B Complex leave this off for 3-7 days before the test as it can cause false results when biotin is used in the testing procedure (which most labs do).

Ferritin 49

Presumably the range is 13-150.

Ferritin is recommended to be half way through range so about 82 with that range although some experts say that the optimal Ferritin level for thyroid function is 90-110ug.

You can help raise your level by eating liver regularly (no more than 200g per week due to its high Vit A content), or liver pate, black pudding, etc.

Folate 21

Probably OK but no range given.

Vit d 78

The Vit D Society and Grassroots Health both recommend a level of 100-150nmol, with a recent blog post on Grassroots Health recommending at least 125nmol.

B12 150

Is this Active B12?

Moog77 profile image
Moog77 in reply to SeasideSusie

Hi thank you so much for your reply.

Folate range is 8.83 to 60.

B12 is active but the range is 37.5 - 188. This is an odd range as I have always worked from a range of 120 - 500.

When I was diagnosed my results were:

Tsh 7.78

Ft4 15.9

Ft3 5.6

These were taken early evening - not ideal I know but was the only time I could get a blood draw (private test). I think that the TSH result has always stuck in my mind as being 'false' as it wasn't done early morning on empty stomach.

Being gluten free has made a HUGE difference to my health but I'm still not quite 100%. I think my thyroid is the missing piece. I feel so rotten just now I can't tell you - I think I should have perhaps come here to post for some feedback from fellow thyroid folks before doing something so stupid.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Moog77

Moog77

Folate range is 8.83 to 60.

Folate is recommended to be at least half way through range so 35+ with that range, you are a little on the low side but it's not dire.

B12 is active but the range is 37.5 - 188. This is an odd range as I have always worked from a range of 120 - 500.

Active B12 is a different test from SerumTotal B12 which has the wider range. The Active B12 range is always much narrower.

Total B12 measures the total amount of B12 - bound and unbound. Active B12 measures just the unbound which is free and available for the cells to use and is said by some to be the better test. You have a very good Active B12 level.

I think that the TSH result has always stuck in my mind as being 'false' as it wasn't done early morning on empty stomach.

If you scroll down this page to the first graph, you can see how TSH varies throughout the day, you can see how a blood draw done at, say, 6-7pm is quite a bit lower than if it was done at 9am:

thyroidpatients.ca/2020/07/...

Moog77 profile image
Moog77 in reply to SeasideSusie

Wait what?? So my TSH is lower later on?

Oh. .....I'm gobsmacked at that. Now I feel even more stupid!

Looks like I do have a thyroid problem then! Quite common with coeliac disease.

I try to keep supplements for folate and ferritin and vit d as when I was diagnosed with coeliac a few years ago the specialist said he had no idea how I was walking around with the levels I had. Looks like I need to keep on top of these.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Moog77

Moog77

Wait what?? So my TSH is lower later on?

TSH is highest early morning and lowers throughout the day. For a diagnosis of hypothyroidism TSH has to be high, and when we take Levo and are tested then if we are looking for an increase in dose or want to avoid a reduction then we need the highest possible TSH, hence the advice to test no later than 9am.

Moog77 profile image
Moog77 in reply to SeasideSusie

I cannot believe this. I thought because I took the blood draw around 7pm I'd elevated it due to eating and exercise. I have no rationale for this!!

Wow. Lesson learned

SeasideSusie profile image
SeasideSusieAdministrator in reply to Moog77

Moog77

Certain foods can lower TSH and caffeine containing drinks may affect TSH, so we advise nothing to eat or drink except water before an early morning test for the highest TSH.

SlowDragon profile image
SlowDragonAdministrator in reply to Moog77

Coeliac is autoimmune, so it’s highly likely your hypothyroidism is also autoimmune

Extremely important to regularly retest vitamin D, folate, ferritin and B12, and keep all vitamins optimal

What vitamin supplements are you currently taking

Common to be low in vitamins with coeliac too

Moog77 profile image
Moog77 in reply to SlowDragon

I take a b complex that has :

Folate 400mcg

B12 600mcg

B6 20mg

Also a vit d soft gel every few days that is 10, 000iu with a k2 supplement.

Take spatone ironwater when I remember - away from levo dose though.

SlowDragon profile image
SlowDragonAdministrator in reply to Moog77

Remember to stop taking vitamin B complex a week before ALL BLOOD TESTS as contains biotin

Biotin can falsely affect test results

BrynGlas profile image
BrynGlas in reply to Moog77

Yes, it does look as though you are hypothyroid. And you are not likely to have that change.

We all get a real shock once diagnosed, but you really need to accept that fact and work on getting your meds right. Increase Levo gradually though. Not more than your body can take at any one time.

Good luck and you are in the right place, believe me.

Moog77 profile image
Moog77 in reply to BrynGlas

I'm just shocked at how ill I feel. I didnt feel this bad before diagnosis!

Nausea, dizzy, total exhaustion, anxiety and really bad nightmares as a result. Struggling to eat as well. Hot and cold. It's like my body has switched off

BrynGlas profile image
BrynGlas in reply to Moog77

Hope you feel better soon, I have never tried to give mine up, because I had nothing to replace it until a year ago. I wouldn't have had the nerve to try it.

TSH110 profile image
TSH110 in reply to Moog77

Don’t beat yourself up about it- you tried and now you know it wasn’t the answer. You can move on restart the 50mcg and eventually up the dose at 6-8 week intervals until you feel better. It’s not natural to take tablets every day to survive, but this is the situation we find ourselves in. Hope you feel a lot better soon.

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine do you normally take

Many people find different brands are not interchangeable

Yes you will need dose increase, but get back on 50mcg everyday for at least 6 weeks minimum before getting retested

Get weekly pill dispenser, so it’s easy to see if missed a day

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

What vitamin supplements are you currently taking

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Retest thyroid and vitamin levels 6-8 weeks after each dose change or brand change in levothyroxine

all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

Come back with new post once you get results

Likely to need further increases in levothyroxine over coming months

Aiming for Ft4 in top third of range and Ft3 at least half way through range. Frequently TSH will be around or below one when adequately treated

Guidelines on likely dose levothyroxine eventually required is approx 1.6mcg levothyroxine per kilo of your weight

Moog77 profile image
Moog77 in reply to SlowDragon

Given the doseage by weight I'm definitely not on enough.

I take the same brand all the time but have been lax in the time i take levo and in regards to food. I need to tighten up on this and take control. It appears my thoughts that I don't have hypo is completely utterly wrong.

Ruby1 profile image
Ruby1 in reply to Moog77

Just to let you know that whilst some people have to be strict about which brand they take, when they take their tablets and taking them on an empty stomach, there are some people like me who don't have such a hard time of it. Any brand seems okay to me and I usually take mine with my breakfast but it doesn't matter if I'm a few hours either side. If I miss a day, I do notice. Some people don't though. We are all different and I am lucky.

I once asked the doctor to reduce my dose. He reluctantly did, but after a month I went back to my usual dose. It is understandable that you might have thought you didn't need it.

healthunlocked.com/thyroidu... you will feel better if you read my post about what I did. Don't keep going over what happened. It is what it is. Now it is time to be proactive with blood tests and educating yourself through the posts on this site so you can fight your corner with the GPs.

Moog77 profile image
Moog77 in reply to Lalatoot

Wow. Its hard advocating for your own health sometimes when you don't feel great that you want to try anything to get better.

I'm so glad you are better.

Haha, you're not alone. I've been struggling to put on weight so decided to cut my dose from 125ug/day to 100ug/day and felt no difference until my next blood test showed that TSH had soared and a big lump appeared in my neck, presumably an enlarged Thyroid gland struggling to synthesis more thyroxine! I simply resumed my normal dose and within 2 weeks felt normal again. I strongly advise you against "doubling up' your dose. Just return to 50ug and you'll be fine

Do not alter or double your dose. If concerned then see an endocrinologist to put your mind at rest but never self medicate

helvella profile image
helvellaAdministrator in reply to Sammie46

It is all very well suggesting the original poster should see an endocrinologist. But many here have never seen an endocrinologist. And would be unlikely to get an appointment. Hypothyroidism is usually regarded as a GP-managed issue and endocrinologists (or administrative procedures) often reject requests for consultations even if you get a GP to request one.

Further, even if they were granted a consultation, the time from now to then could be many months.

Sammie46 profile image
Sammie46 in reply to helvella

As i have stated in another post, this is my opinion and i am allowed to have this opinion as we live in a democracy

helvella profile image
helvellaAdministrator in reply to Sammie46

My response was not intended to deny you your opinion. Simply to identify the real world difficulty in getting from here to there.

If your GP refuses to refer, you are stuck.

If your potential endocrinologist refuses the request, you are stuck.

If you cannot afford a private endocrinologist appointment, you are well and truly stuck.

penny profile image
penny in reply to Sammie46

I think that you have a rose-tinted view of endocrinologists; I’m sure that you’ve read many a report of these ‘gods’ failing to understand thyroid issues. ‘…never self medicate…’ is a bit strong. It is certainly not recommended but some prefer self-medication to disability and an early death; the choice is no choice.

Sammie46 profile image
Sammie46 in reply to penny

I dont appreciate your comments. Ive had the same endocrinologist for 22 yrs. She is also a teaching professor and has an mbe. I am allowed an opinion and thats it. I am also disabled with another auto immune disease. I trust my medical professionals even if you dont.

penny profile image
penny in reply to Sammie46

You are very lucky to have an endocrinologist whom you trust, the MBE and being a teacher professor are not guarantees of knowledge of the best patient-centred treatment but obviously reassure you. The fact that she works for you is fine, other endocrinologists have fallen short as related by many comments on this site. My comments were not for appreciation or otherwise; they were a statement. You are free to have an opinion, as am I, as are all, whether I agree or not with your opinion, or vice versa, is immaterial. Good luck to you and your endocrinologist.

Sammie46 profile image
Sammie46 in reply to penny

I have said that this is my opinion. Please stop badgering me about my comment. You are entitled to your opinion and i am to mine

tattybogle profile image
tattybogle in reply to Sammie46

of course your opinion is valid, but perhaps it might attract less controversy if in future you include the information that you have found a good endocrinologist who you are happy with. If you just suggest to people that they trust ANY endocrinologist to put their mind at rest , then many people will not have as helpful an experience as you have with yours.

And inevitably every time you write that comment, anyone with a less good Endo experience than you , or who has been refused access to an NHS endocrinologist , or who can't afford to see one privately, will feel the need to clarify your comment to take this into account.

So you shouldn't be surprised if they do .

Sammie46 profile image
Sammie46 in reply to tattybogle

I dont feel the same way about sharing my private information. I will not be sharing it. There is no need for anyone to clarify my comment. It was just a comment

tattybogle profile image
tattybogle in reply to Sammie46

Fairy nuff .. but half the story isn't much help to anyone is it.

Sammie46 profile image
Sammie46 in reply to tattybogle

There is no half story or full story. I made an innocent comment yet you are all questioning why i said ? Why ?

tattybogle profile image
tattybogle in reply to Sammie46

Why ?For the reasons stated in replies to you on this post ,and the same reasons already explained to you last time you posted a similar comment.

You fail to acknowledge that some can't see an Endo , or may see an unhelpful one.

Which is very pertinent and necessary information to give if advising someone to "see an endo."

Sammie46 profile image
Sammie46 in reply to tattybogle

So im not allowed to make any comment in this group without giving you all my endos name, the hospital shes at and 'clarity ' on my comment ?

Where does it say that i cant make an innocent comment without being badgered about it ?

I thought this group was for support ? It certainly doesn't seem that way , does it ?

BrynGlas profile image
BrynGlas in reply to Sammie46

Hi Sammie46 I have been hypo since 1999.

I have only ever been given Levo by my GP's. My GP won't refer me to the NHS Endo who I would like to see.

Last year I had to source and buy my own T3 online. My GP was not at all helpful when I told him that I was going to trial it myself. He said T3 was an illegal drug! Complete rubbish.

I don't know whether I would be alive now if I hadn't been able to find T3. I was in ICU in June 2018 after I tried to kill myself and I had been on anti depressants for around 4 years by then. I truly couldn't have felt worse.

I would have preferred to have had my GP behind me when I first tried T3, but he just wasn't willing to help me in any way. So I had no option but to go it alone.

Sammie46 profile image
Sammie46 in reply to BrynGlas

I too have had hypothyroidism since 1999. Im not going to keep saying the same thing over and over. In my opinion she is hest to see an endocrinologist and not self medicate.

Im sorry you felt alone during your journey.

BrynGlas profile image
BrynGlas in reply to Sammie46

Well, yes I was alone and I am still having to go it alone unfortunately. There are others the same who can't get an appointment with an Endo. It isn't fair, but it is a fact.

Best of luck to you,

JAmanda profile image
JAmanda in reply to penny

Indeed, many simply have to self medicate as there’s no other option!

penny profile image
penny in reply to JAmanda

Quite!

Based in the fact that the half life is so long and it is accepted practise for some to take weekly t4 (those who dont take medication reliably in the past), and the fact that you are not all that hypo..like your TSH is not over 100..yes it is safe and personally I would double up for two or three days , then 1.5 times ie 75mcg for the rest of the week..then back to your usual dose. If you don’t and just take your usual dose then that is fine too it will just take you a few days longer to reach your optimum level. It takes6 weeks of meds to asymptote (level out at your optimum) but you also have to factor in your bodies usage and storage. It appears your store were not too much lowered. Dont forget every call in your body stores thyroid hormones in the cell membranes. Personally last time I stopped I went over100 .. so not too bad:). Btw my reply also accounted for your not to badly low Ft4 levels as well.

OTOH your Ft4 and TSH aren’t that low really for 4 weeks off….like I said..in 3 weeks I go over 100…so maybe you could wait a few weeks and retest and see if your body can make the thyroid hormones and lower the T S H and raise the T 4 by itself.. it is possible at those levels provided an ultrasound does not show thyroid tissue destruction or your thyroid has not been destroyed by radiation or removal or antibodies etc. If say you have been exposed to higher than normal amounts of iodine ..eg with a C T scan this is a totally normal level and will correct itself..or if your selenium levels are too low etc. so why did you feel you May no longer need the 50mcg.? There are a lot of factors

Im Just a patient who unless on prednisone tends to have unstable levels of thyroid hormones… not medically qualified.personal experience and applied maths to the science only

Moog77 profile image
Moog77 in reply to Jan_Noack

My numbers are not reflective of bloods after not taking my meds. They are results from April this year whilst medicated and the results that I had when originally diagnosed back in May 2019.

Jan_Noack profile image
Jan_Noack in reply to Moog77

agh, that makes all the difference!

I can’t imagine that doubling up will make you feel good, not sure but instinct tells me that you may need to start on a low dose again. Either way I hope you begin to feel better soon.

You may also like...