My results when starting levo wasTSH 5
Ft3 3.8 (3.5-6.5)
Ft4 12.2 (10-19.8)
I also had low ferritin and vid D so those might be the reason I didn't feel well. I had to convince my Dr to try levo to see if I felt better.
Do you think I can try stopping levo? I'm currently on 87 so am thinking on going 75 then 50 and 25 and finally stopping.
Hi klaea,
How long have you been taking levothyroxine?
What symptoms do you have?
I'm just thinking possibly you may have not given it enough time? Other members with more experience will reply to your post.
No, I really don't think you can. If you do, your TSH will rise, and your Frees will drop and probably go lower than they were before, and you'll be back to feeling awful.
Low vit D and ferritin will have made you feel bad, it's true. But so did that very low FT3. T3 is the active thyroid hormone needed by every single cell in your body to function correctly. If there's not enough in your system you will experience all sorts of bad symptoms - including low nutrient levels, like vit D and ferritin.
You're only on a very small dose so probably under-medicated. What were your last thyroid results? Have you had your antibodies tested?
Yes, no antibodies Latest result
TSH 0.2 (0.45-4.2)
Ft3 4.2(3.5-6.5)
Ft4 17(12-23)
Do you think it's a bad idea to try stopping? I couldn't tolerate higher dose IE 100levo when I tried that.
FT4: 17 pmol/l (Range 12 - 23) 45.45%
FT3: 4.2 pmol/l (Range 3.5 - 6.5) 23.33%
I think it's a very bad idea. What do you think you will gain by stopping it?
As you can see from the percentages, you are not only under-medicated but you don't convert very well. You also have a sluggish pituitary because with those results, your TSH should be a lot higher.
What happened when you tried raising your dose to 100?
I got aching legs and high heart rate when trying to increase. On 75 mcg levo the results were almost the same as unmedicated
TSH 0.2
Ft3 3.8 (3.5-6.5)
Ft4 13 (12-23)
Therefore I am thinking of trying to stop as I have watched a lot of videos how to and they also say you're a good candidate if you only had subclinical which I had. Do you think it's a bad idea?
There's a study suggesting that a lot of people don't need their medication so I was hoping to try without but am not sure now. medicine.yale.edu/news-arti...
On 75 mcg levo the results were almost the same as unmedicated
Except that your TSH went from 5 to 0.2. So your pituitary has noticed the difference.
There are three things you need to take into consideration:
1. The medical community in general does not like treating thyroid - or anything else involved with hormones, actually. They do not have the training and are vaguely aware that they are out of their depth. Hormones scare them because they don't know enough about them. And they have been trained to believe that hypo is not really the problem we make it out to be, anyway.
2. Research can 'show/prove' anything you want it to. And there are a lot of unscrupulous researchers out there with their own agenda. Also, you don't say where you live, but the 'research' paper you link to is American. America is totally different to the UK when talking about diagnosing hypo. The whole medical system is difwo ferent. In the UK, on the NHS, it is so difficult to get diagnosed that far more people are undiagnosed than are ever misdiagnosed with hypo.
3. Given those two points, you have to ask yourself: is 'sub-clinical' hypo really a thing? Or is it just an excuse not to diagnose people. Sub-clinical actually means that the blood-work is showing positive but the patient has no symptoms. In the UK it is used to describe people whose TSH is over-range - but not yet 10 - but the Frees are still within range, whether they have symptoms or not! So, it would appear that 'subclinical hypo' is a condition entirely man-made. And one should consider: is it a sub-set of hypothyroidism or is it just that a) the hypo hasn't yet got that bad, but will eventually (especially relevant with Hashi's) or b) does the patient have a mal-functioning pituitary? In either case, where is the justification for not treating it if the patient has symptoms? Their justification? They don't know what the symptoms are! And they tell the patient that their symptoms have 'nothing to do with their thyroid' - which is totally bogus - and then ignore.
So, let's get back to your particular case - results before treatment:
TSH 5
Ft3 3.8 (3.5-6.5) 10%
Ft4 12.2 (10-19.8) 22.45%
It there were nothing wrong with your thyroid, your TSH would have been around 1. A TSH over 2 shows the thyroid is struggling to make it's quota of hormones. And at 3 - ignoring this 'sub-clinical' rubbish - you are technically hypo.
A 'normal' (euthyroid - i.e. no thyroid problems) FT4 would be around 50% through the range, with the FT3 slightly lower. Your FT4 is a lot lower than 50% and your FT3 is even lower still.
This, to my mind, suggests a sluggish pituitary - i.e. a pituitary that is either not picking up on the low Frees, or is incapable of producing an appropriate amount of TSH. Because with those low Frees your TSH should be higher.
This is just one of the reasons why the TSH should not be used exclusively for diagnosing without taking the Frees into account. It is unreliable. Yet that TSH puts you into the 'sub-clinical' category when actually you are pretty hypo.
On 75 mcg levo the results were almost the same as unmedicated
So what? That is not how you just the effectiveness of levo. And certainly doesn't mean you'd be fine without it. It just means that you are under-medicated. 75 mcg is not much more than a starter dose.
The fact that you felt worse when trying to increase it proves nothing, either. Could be due to all sorts of things. What are your nutrient levels? You have given us any numbers for those. Have you had your cortisol tested? How long did you stay on 100 mcg? Did you give it a fair trial?
Do you think it's a bad idea?
All in all, I think it's a terrible idea. Pretty certain you'd regret it.
I had been taking levo for years and still felt awful so I thought I'd stop. I cut down gradually over 6 months from 100mcg to 25mcg. Never got any lower as by that time I was so ill and so very hypo. I became all but bed ridden for the following 2 years as a result of my experiment and it has taken years for me to recover.
When I first started levo I found it hard to increase my dose and hard to tolerate more than 50mcg at a time. The endo suggested a split dose for me and I take a dose first thing and a dose at night. Maybe ypu could tolerate an increase this way.
Lalatoot it's great to see you posting. I was wondering when you say that you tried and lowered your T4 was that because maybe your nutrients were not up to par? Or was it because you needed some T3 added to your T4? The reason I'm asking that I find that some thyroid patients are on T4 soley and not doing particularly well and I was curious if it's nutrients or not being on enough T4 yet? Because it takes more time for the body to acclimate to the T4 and or some T3 needs to be added.I found in my thyroid journey that there are so many components to make our thyroid meds to work up to par.
Great to see you back.
When I did my lowering it was because I wanted to go back to square one and see if I could work out my levo only dose. I had been hyper and had RAI. My endo was lovely but didn't know her stuff - however I was unaware of that at the time. Immediately after RAI she dropped the ball and didn't check my levels soon enough. By the time she did my ft4 was 4 on a range that started at 10! Can't remember how high TSH was. It was hard to tolerate any levo but I worked my way up to 100mcg per day. My TSH was 4ish near top of range and my ft4 was low in range but according to the endo I was now ok. Symptoms persisted for 4 years which is why I decided to start again and see if I could find my ideal dose. Thanks goodness I found this site! I learned about ft3 on here and how things should be. Because of my experiment I was very ill so tsh, ft4 and ft3 were routinely done at the GP surgery. I now knew how to interpret the results and could see that I was a poor convertor. I got re-referred to the same endo and explained my results to her. She prescribed T3!
As radd said the other day, our bodies may never return to pre-thyroid-trouble form and we may have to accept clitches in our functioning. I know this is true for me. But I am no longer housebound and I took a 3-week holiday in Poland this summer so there is hope for everyone.
Once you have been diagnosed as hypothyroid, you will be needing thyroid medication for life, as your thyroid will not be able to produce the hormones you need. Even with your current medication, your T3 is very low. So if you go lower or even stop completely, your hormone levels will decline further and in the worst case scenario you could fall into a myxoedema coma, which is life threatening.
How are your nutrient levels? You should test your iron, Vitamin D, Vitamin B12 and folate. Iron and Vitamin D can help with the conversion of T4 to T3, so when these levels are low, you cannot utilise your levothyroxine medication properly. However, if your nutrient levels are optimal, you may actually tolerate levothyroxine a lot better and it could help to increase your levels of T3.
If your nutrient levels are optimal and there is still a marked gap between T4 and T3, this would indicate that you are not converting T4 to T3 very well, and you might benefit from the addition of T3.
I have suboptimal vit D and ferritin so im supplementing those.
There's a study suggesting that a lot of people don't need their medication so I was hoping to try without but am not sure now. medicine.yale.edu/news-arti...
When Vitamin D and ferritin are too low, you feel quite unwell. And also, as your thyroxine levels are still low, this will contribute to you not feeling well at all and why you think your meds are not working. I really think you would need an increase in levothyroxine, not a reduction in any case.
Especially your T3 is very low at only 23% through the range - many people need at least 60% to feel sort of okay, so yours is only a third of that, no wonder you feel really unwell.
And as both iron and Vitamin D help you with the conversion of T4 to T3, once your levels get higher, your can convert more T4 to T3, so this will help you further. You could try a loading dose for Vitamin D to get the levels up more quickly and then try to maintain with at least 3000IU + K2 + magnesium.
Also, subclinical is still not optimal and can have profound impacts on your health, as you are currently experiencing. With the article you have mentioned, you need to take into account that the American health care system is quite different from the UK, they are incentivised to treat and they treat a lot quicker than over here. In addition, there is a big difference if someone is treated, if their TSH was 5 on one occasion and their T4 and T3 were still 60-80% through the range, as opposed to someone with a TSH of 5 and their T4 at 20% and the T3 at 10%, as it was in your case. Your TSH should have been a lot higher with T4 and T3 like that, which indicates that your pituitary feedback is not working well either.
You have been given medication as your free thyroxine hormones were very low, which untreated could have meant that you would fall below the range. And that is what will happen if you stop your treatment, so definitely not advisable.
You are so right Tina_Maria. After my TT I was told by my surgeon whom I admired but he just told me to take one pill and I will be fine. But that was not the case. Never mentioned nutrients or even that there is a T3. The T3 was introduced to me as a pill to take prior to my RAI.Dr's either don't know much about nutrients or just don't have the time to share. Either one is not serving us well.
Education on thyroid matters seems to be a very low priority everywhere - they are told TSH is the only thing that matters and that levothyroxine is the only medication a patient will ever need!
Even the guy who invented the TSH test stated that it should only be used as a diagnostic tool, and not to guide treatment decisions. No idea why it has crept into clinical practice that this is the only thing clinicians ever need...🫣 And should not the fact that about 10% of patients cannot get well with a treatment decision based on TSH tell them, that this is not working? It reminds me of a famous quote:
'Insanity is doing the same thing over and over again and expecting different results.'
Thank you for your kind reply. I will take it one step further. TSH is not the be all. But who sets the FT 4 and the FT3 ranges? I'm in the States. And my Optimal on FT4 is 1.4-1.5. Many find these ranges high. Personally it should be respected case by case how the patient Feels. That ought to be number one ,number two and number three. If the shoe fits wear and accept it.
The T3 and T4 'normal' ranges. Well, they have been established by taking a large population sample of healthy people (however, do I question this, as there are hypothyroid patients before diagnosis that can be asymptomatic!) and the laboratory cut off was at 95%. That means 2.5% of people were either above or below the range, so why should everyone fit within? And where is it written that once you are somewhere within this range, you are good to go? As the range was established with different individuals, they all had different (or dare I say individual!) T3 or T4 results. So why should you feel good with a T3 result at the bottom of the range, when they do not know what your T3 result was before your diagnosis? Is it not possible that your individual T3 was much higher in range and that's why you feel unwell?
Sadly, we are still a fair distance away from personalised medicine and sometimes, given the knowledge of physicians these days, I feel that we are making steps backwards and not forwards.
“I was only subclinical”.
Up to date research recognises the importance of ‘apparent’ subclinical. This has been raised particularly in papers covering thyroid hormones and heart disease. The view in these papers is that subclinical should be treated. It may be more tricky but it needs proper acknowledgement and treatment.
I wish I had been treated when found to be ‘subclinical’. I now have very blocked arteries. Even now most doctors, endocrinologists and cardiologists are unaware of how important proper care of the ‘subclinical’ patient should be.
Someday a reason for this oddity called subclinical will be discovered but until then it’s best to treat this ‘undercover’ version of hypothyroidism.
You probably need some fine tuning NOT coming off your thyroid medication. greygoose neatly explains your much more true indicators and Lalatoot rather accurate reply to the effects of coming off her meds. I tried to reduce mine about six months ago at a suggestion from an endocrinologist. It’s taken quite a bit to get over and I can assure you I am far from ‘right’. Knocked me back even further.
Subclinical is not a lesser state of hypothyroidism. It’s just a different presentation which needs just as much attention, if not more.
Couldn't agree more.
Are you in the US? Because here I believe a PCP will give thyroid medicine at a drop of a dime. Much like they will give antidepressants, anti anxiety, ect out like candy. I have read a few studies and articles on the possibility of many misdiagnosed hypothyroid cases. The PCP won’t take the time to look into other causes for symptoms, do one blood test and you are on levothyroxine for life.
This is very different if you are in the UK, where it seems the opposite. Having to fight for medications.
But if you were to change medication, reduce, stop, whatever, please do so carefully. You got a lot of great comments for advice.
The word "subclinical" means "without symptoms". I doubt that many people with a TSH over about 2 is without symptoms, but we are faced with doctors who tell us that our symptoms are all in our heads, aren't real, aren't as bad as we say they are - anything to avoid treating us.
Like greygoose I don't believe in "subclinical" hypothyroidism. I think it is an accountant's diagnosis i.e. it was made up to reduce costs and reduce the number of people they treat. And since "subclinical" hypothyroidism is a majority female disease I also think it is a misogynist's diagnosis.
You've mentioned the nutrients vitamin D and ferritin but haven't given us any test results and ranges. If you have them, could you post them please?
"Optimal" levels aren't the same as levels which are "in range". Doctors tell patients that any results that are "in range" are "fine". I was told by a doctor some years ago that my ferritin level of 20 mcg/L was absolutely fine. My serum iron was below range too. And I felt absolutely shocking. I struggled to climb stairs, couldn't walk to my nearest bus stop, and I developed tachycardia (fast heart rate) too.
In the end I tested and treated my own iron for several years and I found that I felt a lot better with optimal levels of iron than I did with bottom of range or under-range results. And another thing - once I optimised my results for iron/ferritin I was able to tolerate Levothyroxine for the first time. Before that I had only (just) tolerated T3 and couldn't cope with Levo/T4 at all.
I think if you were to give up taking Levo that you would regret it. Instead of doing that you would feel better if you tried optimising your iron, ferritin, B12, folate, and vitamin D.
Have you tried giving up gluten? It is worth doing a three month trial. It helps a lot of us.
Stopping medication 
stopping medication 
Thinking of going with NDT
Am thinking about stopping my meds
