Morning everyone.
I'm still taking 50mcg levo due to the fact I feel better mentally than I did taking 75 or over.
I am so tempted to just stop taking levo and see what happens... how long will it take for me to see if i can be off it or not?
Has anyone else done it ?
thanks ,Holly
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I stopped for about 6 weeks, it is not a good idea! You may feel down and not know which way to turn so I understand blame Levo, I think sometimes it is easier when you have a headache and can relieve symptoms with pain relief, Thyroid issues are more complex than that if you don't feel well, all you can do is ask gp for help maybe try raising slightly 50 one day 75 next. Hope you can get sorted x
hollyrosi
No personal experience, just reading members' experiences suggests it's not a good idea. Have a look at this post from one of our well established and experienced members Lalatoot here:
healthunlocked.com/thyroidu...
You need all your ducks in a row before thyroid hormone can work properly, so that means optimal nutrient levels, maybe checking adrenals, etc. Are your nutrient levels optimal:
Vit D - 100-125nmol/L is recommended by the Vit D Society and Grassroots Health, with a recent blog post on Grassroots Heath recommending at least 125nmol/L.
B12 - top of range for Total B12, and for Active B12 aim for 100 plus
Folate - at least half way through range
Ferritin - half way through range although some experts say that the optimal level for thyroid function is 90-100ug/L.
Low nutrient levels or deficiencies bring their own symptoms, many of which are similar to symptoms of hypothyroidism.
As SeasideSusie says read my post. I made myself very ill. For years the endo was happy with my ft4 low in range and my TSH high in its range because the results were in range. I didn't know any better and thought my symptoms ( which were exactly the same as when I was truly hyperthyroid) were because I was on too much levo. In reality the symptoms were because I was on too little levo. Thank goodness for this site!
I spent almost 2 years in bed mostly recovering. My body in its survival mode adapted to running only the basic body systems on so few hormones so now it is having to adapt again to having more hormones. I'll never be back to normal but things are improving and symptoms are fewer or less intrusive.
By the way I have never taken my levo dose in one go as I didn't like the way it made me feel. I split my dose morning and night.
It's not possible to say 'how long before you know'
Stopping Levo depends how you feel about playing russian roulette.
~ There are some people who will feel very hypothyroid with the first few days .
~ Some who start to have increasing hypothyroid symptoms over the first 2 or 3 weeks as their blood store of T4 gradually goes down.
~ There are some who instantly feel a whole lot better for weeks and sometimes even months , and think they've 'cracked it' and think Levo was indeed the source of all their problems ....... and then they have a horrible crash ,and end up in no doubt that they are definitely in need of thyroid hormone replacement ..... but then even when back on it , it takes them months / years to get back to being as 'well' as they were before .....and some never get back to being that 'well'.
~ you read occasional stories of people on line ,who stopped and say they they are well, usually claiming x, y or z as the 'cure' for their autoimmune disease.. but you hardly ever read what happened to them a year or so later ... they usually go quiet, but leave the original post up forever .
Your TSH got up to 12 at one point i think , and you have positive TPOab (albeit not very high 50ish ?)
TSH doesn't go to 12 for no reason .
If your thyroid was capable of producing enough T4 /3 by itself , ask yourself why would your TSH have ever got as high as 12 if your thyroid could produce enough, or even 'nearly enough' ?... presumably it would have got to about 3 or 4 or 5 ish and by then the thyroid would have made more T4/3 and the TSH would have stopped rising.
Also, if there is any chance of becoming pregnant while you experimenting with 'no levo' , then stopping Levo is obviously even more of a concern.
I can totally understand why you be temped to try it if eg. you were unsure of your original diagnosis.
I've occasionally been tempted myself , but i wouldn't.. i 've seen what the long term effects of even just 'being on too low a dose for a few months' are , even after the dose has been put back up.... i feel OK again now (a year or so later) but i'm nowhere near as fit and active as i was before .. i lost a lot of muscle strength , and flexibility, and stamina, and cardiovascular fitness during that time which (once you're not a 'spring chicken' anymore) are not easy things to get back once you''ve let them go.
And i had to let a job go, because i couldn't keep up the pace ... which was a blow to my confidence ad self esteem.
I see it a bit like playing Russian roulette too, but if ive been on 50 since last September, can the crash really be that hard ? I have doubted my original diagnosis, for a few reasons. I was told quitting smoking will have an effect on the thyroid but that itll be transient, and i insisted on levothyroxine, my doctor didn't just give it to me. Maybe I was wrong? I've had recurrent miscarriage, hair loss and ive been moody the whole time i was on 75 or over. I realise these could be from others things but I cant help thinking its all down to this levo. When I stopped 75 and took 50, my mind instantly felt better. Im less bloated, i dont get mardy (at all) and im just happier. Last September my tsh on 50 was 8 and the t4 was 12. In jan, the tsh went to 3 and my t4 to 14. I know that's not great but it improved? surely it would get worse ? So I decided maybe I should focus more on how I feel rather than numbers. Anytime my tsh has been o. something, I have been very very poorly.
For me tatty, the muscle strength and stamina is better now than it was. Maybe ill come crashing down and everyone can have a big fat laugh at me ! But I cant shake the feeling something isn't right. Yes my antibodies are there so I am autoimmune and ill always have a dodgy thyroid, but not everyone with antibodies gets put on levo. Its just a possibility that someone with them will become hypo, is that right?
What about the stress caused by quitting smoking? Maybe it was caused by that? They say it takes years for you body to recover from quitting.
Either way I'll sound find out !! Im feeling brave and if I don't try ill never know! The only changes for me dropping from 75 to 50 have been positive so far. Ill see it through and if I have to come back up ill see that through too 💪 After coming on here to cry to you all about it
Some thoughts .. not in any particular order :
~ "What about the stress caused by quitting smoking? Maybe it was caused by that? They say it takes years for you body to recover from quitting."
I think the reason we get worse when we stop smoking is because we were (to some degree) masking the problem , with the stimulatory properties of nicotine.
~ "Im feeling brave and if I don't try ill never know! "
yes fair enough, i'm the same, there's a fine line between bravery and stupidity... and i've landed myself on both sides of it , but it was always my choice and i'm happier living with that and taking the consequences , than with not doing something because somebody told me i shouldn't or couldn't.
~ "and everyone can have a big fat laugh at me !"
No , we won't (well i won't anyway )
~ "not everyone with antibodies gets put on levo. Its just a possibility that someone with them will become hypo, is that right?"
Yes, lots of people have over range thyroid antibodies and slightly high TSH , but don't have symptoms that bother them , so don't go on Levo... and autoimmune hypo may only get worse very , very slowly. So they may never feel the need to start... However that doesn't mean they escape from having the other increased risks that are associated with long term high TSH.
~ " Last September my tsh on 50 was 8 and the t4 was 12. In jan, the tsh went to 3 and my t4 to 14. I know that's not great but it improved? surely it would get worse ? So I decided maybe I should focus more on how I feel rather than numbers. Anytime my tsh has been o. something, I have been very very poorly."
None of this suggests you would be better off without it , just that you feel overmedicated on a dose that takes your TSH below a certain point . and will probably do best to find a dose that keeps it just above whatever that point is. . I'm the same but with different numbers ~ 0.04/5 feels fine ~ 0.01 gives overmedication symptoms , my fT4 can be all over the place , but my TSH has actually been quite reliable as a guide to overmedication.
" i insisted on levothyroxine, my doctor didn't just give it to me. Maybe I was wrong?"
I can totally understand that one .. i put my own dose up from 100mcg to 150 mcg for 15 yrs , and now i often wonder what would have happened if i left it a bit lower , or fine tuned it more carefully, to 125mcg or 137.5mcg. Admitting to ourselves we might have been wrong is important, and brave. And trying 'life without Levo' might be the only way you can clear this self doubt up, and will make it easier to accept if /when you do need to find the best dose /type of replacement hormone .
" but if ive been on 50 since last September, can the crash really be that hard ? "
I don't think it works like that .. if 50mcg keeps you 'well enough' and you take it away , then you'll be just a bad off as someone who needed 150mcg to keep them 'well enough', .... you'll both have 'not enough' .... unless your thyroids can pick up the slack.
" I've had recurrent miscarriage, hair loss and ive been moody the whole time i was on 75 or over. I realise these could be from others things but I cant help thinking its all down to this levo."
This one does worry me.... you were started on levo indirectly as a result fertility problems .. and you posts indicate getting pregnant again is important to you... would you be avoiding getting pregnant while you are experimenting with stopping Levo ? . The baby's need for you to have adequate thyroid hormone is greatest in the first 2/3/4 weeks .. when lots of us may not even realise we are pregnant.
Yes it will at least clear it up for me, that's exactly what I thought. Ive been ruling things out over the last couple of years. I know for certain 100 is too much, and I know 75 is too much, at least when its everyday. I know I feel better mentally on 50 etc. I'm hoping I dont make the stupidity leader board for stopping my levo and getting in a mess (probably will) But its just a nagging feeling.
I was started on levo after quitting smoking ,the fertility problems came in the following years while on levo. Ive always had a low tsh and a low ft4 while on levo but the doctors said the levels were all fine for pregnancy. Maybe its all something else ! Ive never miscarried before levo, and ive had 5 while on levo. Something just isn't right. Surely after all these years on levo I would be right by now.
I havent avoided pregnancy this month no, but i definitely will going forward.
If it doesn't work out its just another step forward, I really feel like I need to try and see how it goes because nothing can be worse than how i was living on 75.
I know for certain 100 is too much, and I know 75 is too much, at least when its everyday
But with such really awful vitamin levels it’s hardly surprising you feel “over treated “ on an inadequate dose levothyroxine
We must have good vitamin levels for thyroid hormones to work …..especially iron and ferritin
Low Iron and low thyroid link
healthunlocked.com/thyroidu...
Why low ferritin needs improving
Well said! Unfortunately, there are some alternative/integrative practitioners out there who claim they can cure hypothyroidism, so no wonder some patients want to try to come off hormone replacement. But, as you say, there is rarely if ever any follow-up so we have no idea of knowing for how long these people continued to feel good without thyroid hormone replacement.
I dont see any alternative practitioners or claim to be able to cure myself. If you read the post im talking about being poorly on levo for years and so lowering my levo to 25. not coming off it
That comment wasn´t for you. As you can see, it was a reaction to tattybogle ´s post and the statement that going off thyroid hormone replacement can lead to more problems down the road as hypothyroidism is most often a chronic condition. That often happens here; that is, someone asks a question and someone replies, adding more information that someone else reacts to or comments on.
The trouble with 75mcg levothyroxine is it’s probably enough to switch your own thyroid output off, but not enough to offer good replacement
Which brand of levothyroxine are you currently taking
Many, many people can’t tolerate Teva brand levothyroxine
Teva is the only brand that makes 75mcg levothyroxine tablets
Your ferritin levels were truly one of worst seen on here ,…..and we see a lot of people with low ferritin
It takes many months to improve low ferritin levels
healthunlocked.com/thyroidu....
ESSENTIAL To also test vitamin D, folate and B12
When were these last tested
What vitamin supplements are you currently taking
For levothyroxine to work well we need OPTIMAL vitamin levels
It’s chicken and egg
If under medicated thyroid wise this results in low vitamin levels
If have low vitamin levels difficult tolerating increase in levothyroxine
Optimal vitamin levels are
Ferritin at least over half way through range
Typically at least over 70
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Folate at least half way through range
Essential for thyroid levels to be well managed, all four vitamins at OPTIMAL levels before trying TTC
Levothyroxine dose will very likely need increase immediately conception is confirmed
hi slow dragonI'm taking half an almus 50 now. I've been on 50 for a good few months now, up until this morning.
I searched all over for the letter from the endo specialist to show you what he wrote beside my iron results, ill try and get a copy sent out to me to show you.
All I am taking is the prescribed iron tablets and vitamin c. I havent had anymore blood tests since Jan.
I cant explain how bad I feel on 75. I feel like I've got high blood pressure or something, its just awful. Everything from the last few years has pushed me to try this.... its never been right from day one really. Im less hopeful about it working now after reading everyone's comments about it, but can you imagine if it all gets better and ive spent all these years feeling rubbish for nothing
Strongly recommend getting full thyroid and vitamin testing done NOW
Medichecks or Blue horizon
Blue horizon includes cortisol….might be useful…but it’s usually more expensive
Only test early Monday or Tuesday morning and last dose levothyroxine 24 hours before test
Come back with new post once you get results
A recent poster also stopped his levo because he felt good and now he has been troubled with horrible anxiety and chest pains.
I can understand why someone might give it a shot. I havent stopped just yet, Im on day 2 of taking 25mcg. Obviously nothings happened yet other than my skin feels oily, but ill update when I get my blood results from today or if anything changes.
By the way I stopped levothyroxine completely on 3 separate occasions over 25 years ago…..
Diagnosed with autoimmune thyroid disease with TSH of “only “ 8 approx 5 years after quitting smoking
After 2 years I had still been left ludicrously under medicated on 75mcg and felt like death. TSH about 2-2.5 ….so I stopped taking levothyroxine
First time stopped levothyroxine …..after 2 weeks became so cold I couldn’t warm up, even with 3 duvets and electric blanket and extremely constipated. Took 4-6 months to recover once back on levothyroxine
2nd time year later….still by then only on 88mcg levothyroxine ……after 2-3 weeks no levothyroxine…. total loss of appetite, difficult breathing, rapid weightloss. Took 6-10months to recover
Last time ….year after that ….still only on 88mcg
Became so unwell, stuck in bed, or with extreme difficulty in a wheelchair. Tested for Pituitary tumour, motor neurone disease etc etc …Took a year to recover enough to walk 20mins
After this I got my referral to thyroid specialist endocrinologist. Dose levothyroxine was increased slowly upwards to 125mcg…more on my profile
this is so scary !! Really feel sad for you reading it because I know so well how it feels to be unable to function.For me that came from taking anything 75 or over. I wasn't as poorly as you but I definitely felt exhausted all the time, my mind was racing, I was out of character all the time (mardy!), in bed early and struggling to get up and couldn't use the loo. I felt constantly dehydrated? And couldn't stop eating. I was literally never full but I never gained weight, I always stay at 9 stone 2 no matter what I eat. Infact 9 stone 3 was the weight I was when i was diagnosed 4 ish years ago.
do you feel well and healthy now that you're on 125?
Full details on my profile
Fully recovered on levothyroxine plus T3, diagnosed as gluten intolerant by endoscopy (zero gut issues) not coeliac. Vitamin D, folate and B12 need ongoing supplement
Please think very carefully about this, I've had recurrent miscarriages, was prescribed levo at my old GP practice, took for three years. Took myself off it and now struggling to get GP new practice to put me back on. Very high risk of future miscarriages, not getting any younger and starting to feel really unwell, low ferritin, soo tired and stressed with it all. Feels like I've got a battle on my hands now to be taken seriously, and all because I took myself off it convinced I didn't need it and all would be fine. Would hate the same to happen to you.
I'm sorry youve had a bad time with it like I have.
Why won't they put you back on it? Have they done you a blood test?
They say they have no records transferred from my old practice. I'm waiting for a call with the GP, last time I was given a telephone appointment with the nurse Practioner, she wouldn't prescribe, may have better luck with a GP, if not then I'm prepared to go private if needed. Thing is, I was struggling to conceive whilst on levo, my periods became very light and only lasting a day. Usually very heavy and lasting 5 days. So I assumed it was the levo and stopped taking it. I've managed to get pregnant multiple times since stopping, but all ended in miscarriages. It's been a catch 22. Reading your other posts, it seems we have similar issues, my ferritin was low too at 20 so not quite as bad as yours.. and again they wouldn't prescribe iron for me.
Apparently, my ferritin is horrendous, but I didnt know until i posted my results on here. They really should be doing you another blood test, maybe you could ask the nurse for one? They could really do with those notes from your old practice, have you called them to ask why they didn't transfer them?
I woke up this morning adamant that I'm going to try and come off this horrible stuff, but after reading the comments im petrified ill end up poorly. I am just as my wits end do you know what i mean? What could be worse than the last couple of years of being exhausted and unable to function anyway?
My miscarriages were all early, and i had a ruptured ectopic back in 2020. Each time i got pregnant on levo, I did not feel right. I have always felt stressed and agitated on levo. I have 2 other children, and when i was pregnant with them i felt so calm and sleepy, almost dizzy with pregnancy hormones. It just doesnt feel right its hard to explain.
So hard to get an appointment at the moment with covid restrictions, I'm down for a routine call with GP 3-5 days so just keeping everything crossed I get somewhere with that and can take it from there.Completely know what you mean, I'm feeling the same. I was so hopeful back when I was originally put on Levo 6 years ago, that it was the miracle cure I needed and everything would fall into place, after having a really, really tough time. But sadly it didn't work out that way. Even now I'm questioning whether Levo is the answer, but its apparent my thyroid is struggling, TPO antibodies over 1000, TSH just slightly higher than range 4.65, but they recommend below 2.5 for TTC. Levels are worse now than when I was first prescribed Levo.
I'm crap at pushing for further tests etc, I get so anxious speaking to the Dr's and feeling like I'm causing trouble (even though I know I'm not in reality) It is looking more and more like I'm going to have to organise my own tests and private doctors if I don't get anywhere with the GP.
There must be a reason for the miscarriages (have you been referred to recurrent miscarriage clinic?) I'm on a waiting list for gynae, but have previously had tests done and no cause found other than the thyroid antibodies. It doesn't make any sense at all.
yes I see a recurrent miscarriage specialist who has tested us for everything fertility related and given us the all clear.
When did you have those bloods done ?
If I was you I'd make a new post about it because the people on here will give you loads of good advice and information.
I guess that tsh wants medicating doesnt it. Mines 3. something at the minute so not much better !!
I paid to have TSH, FT3 and FT4 done through monitor my health, they were great, had my results the next day, have already posted about it and had some support from the lovely admin's on here. It is all pointing to needing medication again, but not holding my breath for an easy time when I eventually get to speak to the GP! Same here, all clear fertility wise. It's frustrating isn't it not having any answers!
oh sorry I didnt realise you'd already done that.Someone suggested I take my partner with me to future appointments with my gp for back up, maybe you should aswell especially if you feel anxious.
My gp just talks over me hes so dominant and dismissive. I hope you get in with your gp soon as poss and get something sorted , post back to me and let me know !
Will do 
Also this one explains why low ferritin is almost always likely due to being hypothyroid
yes I see a recurrent miscarriage specialist who has tested us for everything fertility related and given us the all clear.
But iron deficiency can be cause of infertility…..certainly contributing factor
Being hypothyroid frequently causes infertility
she thought my thyroid levels were OK - so not due to hypo. the t4 fluctuated very slightly, without looking i think it was ft14-17. As I mentioned my tsh was always 0. something.she prescribed me some high dose folic acid and that was it. She mentioned that tsh should be below 2.5 for conception
Infertility and low iron/ferritin
dextralapsettomuusklinikka....
embraceacupuncture.com.au/b...
Wow thats amazing !! I had blood tests done yesterday, when those results come back ill post them and ask for advice, and if they're still bad, which they will be, ill push for / pay for treatment. I wonder why I've been left anemic ? Really upset about this.
I haven't had any effects from the 25mcg yet. I feel the exact same other than my skin feels like an oil slick
Takes at least 2 weeks and really 6-8 weeks for any dose change to have effect
Common to initially feel better with dose reduction before crashing
The relevant point is low ferritin is DUE to low Ft3
TSH is more unreliable if very anaemic
I wouldnt say I feel better. Just the gross oily skin.....My ft3 has never been low but my ft4 has !
I'm keeping a close eye on myself, id like to wait a full 3 months before testing my levels on 25mcg but depends how I go
Your Ft4 and Ft3 were both far too low 2 months ago and obviously going to be even lower now
FT4: 12 pmol/l (Range 11 - 22) 9.09%
FT3: 3.8 pmol/l (Range 3 - 6) 26.67%
Helpful calculator for working out percentage through range
When adequately treated most people will have Ft4 at least 50-70% through range and Ft3 50-60% through range….and may need to be even higher
my ft3 was 4.58 at the latest test.
it actually went up from the test in September on the same dose and the tsh went from 8 to 3
Because you own thyroid working harder to try to produce thyroid hormones
I've just gone back and read your last post which I replied to.
To recap, you are very anaemic, your ferritin and haemoglobin levels are dire and the only treatment your doctor has given you for this is a couple of iron tablets a day.
You need better treatment than this. While you are so very anaemic you will find it very hard to tolerate thyroid hormones. I've sent you a private message.
Glad you posted this HB, I was scrolling down to see if anyone had.
Hidden , when ferritin is low we frequently see people struggling to cope with raising their dosage of levothyroxine.
I’m not sure why that it is—I’ve wondered if it might have something to do with iron (ferritin) being required to convert T4 to the active thyroid hormone T3.
I have managed to get in for a blood test in the morning, ill ask for them to test all of my vitamins.I've decided to stay on 25mcg and see what happens... Im sure it will only take a month or so to find out.
Your own thyroid is struggling….hence TSH of 8
The hardest step up is to get dose levothyroxine over 75mcg to 100mcg
On 75mcg your pituitary recognises you have extra thyroid hormones from the levothyroxine, so TSH drops low (it’s the message from pituitary to tell thyroid to work)
But on 75mcg your not on high enough dose…..as shown by low Ft4 and Ft3
Low vitamin levels as results of low thyroid levels then complicate things further
Getting all four vitamins tested and at GOOD levels can help tolerate increasing levothyroxine
With such terrible ferritin result not surprising you struggle to tolerate increasing levothyroxine
my tsh is 3. Although I understand from previous advice on here that tsh is irrelevant.
Most important results are always Ft4 and Ft3 once you are taking any replacement thyroid hormones
Getting iron/ferritin levels improved essential
Vitamin D, folate and B12 test and at good levels too
ill post all of my results. I promise I won't disappear if it all goes wrong , ill post it all
When you see a user name of Hidden, it means that the person is no longer a member of this forum.
I shall now be closing this post to replies.
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Fed up!
levo is not for everyone
So fed up and so confused 😢 Have I been misdiagnosed? 
Heart rate over 100. Should I lower or up my Levo??
Why am I still feeling tired after taking Levo
