I've never had any symptoms of under active thyroid, but after a routine blood test 5 years ago, my NHS GP put me on them. I'm fit and healthy and in my 30s. I'm a runner. I have a healthy BMI, no tiredness ect. Never had one symptom of under active thyroid. But because of a blood test result got put on these pills for the rest of my life.
I've been looking into things a lot more recently. The pharmaceutical companies must be making millions off people taking these medications. I guess recently I have lost my trust in NHS doctors to be doing things in the patients interest. And to my eyes these conditions are extremely under researched.
I'm just curious if anyone else is like me, with zero symptoms, and that has never had symptoms? I don't want to be putting something in my body that I don't need.
Thank you
Written by
Kathryn1984
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It's quite difficult to get prescribed Levo with only borderline results, even if people are really struggling with loads of symptoms . If you had no symptoms , and were not pushing to be prescribed Levo, that suggests your test results we pretty conclusive.
There would nearly always be two 'out of range' blood tests , before Levothyroxine is prescribed. (taken at least 6 weeks apart , '3 months apart' is usually required nowadays )
You may not have been told about the first out of range result.
The best way to get some re -assurance about your initial diagnosis is to get hold of copies of these blood test results.
There should be :
TSH (thyroid stimulating Hormone ) eg. 7.8 [?-?] (lab range in brackets)
fT4 (free T4/thyroxine ) eg 13.2 [?-?]
You may also have had an antibody test to confirm if the reason for the hypothyroid blood results was Autoimmune Thyroid Disease.
Knowing these results will help you decide , .. of course you could just stop taking it and see what happens . but it's really not recommended... there are several people on here who have got fed up and tried that... the usual result is "feel surprisingly good for a few weeks or even months" ... until a sudden crash happens , they have awful hypothyroid symptoms , and once back on Levo it takes them months and months to feel better again ..if they're lucky .... some never get back to feeling as good as they did before.
I totally understand your scepticism , (you've certainly come to the right place for that )
..... but Levo only costs pennies ... the NHS is only spending about £12/£15 a year on your levo and blood tests , but Levo then entitles you to free prescriptions for everything else ... so financially it's just not in the NHS interests to diagnose hypothyroidism.
and Autoimmune Hypothyroidism is so common all over the planet, and increasingly so... they are already selling tonnes of Levo without even trying .. if the main motive behind Levo sales was profit . they would put the price up from tuppence ha'penny.
Get hold of your results, and then people here will be able to explain if you were given Levo for a good reason , or not.
Wel, of course, the first step towards answering this question you're asking yourself would be to get hold of your blood test results at the time of diagnosis. You have to understand that misdiagnosis of thyroid conditions is very, very rare, because doctors would rather diagnose you with anything rather than that. They just don't like diagnosing and treating thyroid. And, you're far more likely to be misdiagnosed with something else when the problem is really your thyroid, than the other way around.
Are you absolutely 100% sure you don't have any hypo symptoms? There are over 300 of them. It's not just about putting on weight and feeling tired. Could be hard skin on your heels, or black bags under your eyes... Yes, I know things like that could be caused by many other things. But, that's the problem with thyroid symptoms, they are all non-specific.
But, to answer the question you asked members, yes, I did go through a period when I considered a misdiagnosis. I won't go into the whys and wherefores, because it's extremely complicated, but suffice to say, I stop my T3 - I was on T3 only at the time - and all my supplements, and just tried to get on with my life.
I lasted six months. Then I noticed I was rapidly putting on weight - I had previously lost a lot of weight. Got tested and my TSH was 45 - had been 11 when I was diagnosed. And my frees were very low. So, the obvious next step was to start taking T3 again.
I know you're on levo, not T3, but it's pretty much the same thing. You'll feel fine to begin with - better than you have for a long time - then, sooner or later, symptoms will start creeping in again. OK, so you didn't have symptoms before you started levo, but you might find that if you stop the levo, symptoms might develop that you didn't have before. Depends why you are hypo. Do you know if you have Hashi's?
When you say that you might be taking something for life that you don't really need, are you assuming that the mere fact of taking the levo means you have to continue taking it? Lots of people think that, but in fact, the reason you have to take it for life is not because you started taking it, but because your thyroid is no-longer capable of making enough hormone to keep you well. And, when a thyroid starts to fail, it usually gets worse rather than better. If you stop taking your levo, your TSH will rise, and start stimulating your thyroid again, and your thyroid will return to making as much hormone as it possibly can. But, if it was enough before levo, it definitely won't be enough after levo. And you will go back to being hypo again - with or without symptoms. And, even if you don't feel any symptoms, you're not tired and your not putting on weight, those low levels of thyroid hormone will be taking their toll on your heart and other organs, making them weaker and more prone to damage. And, eventually, you will pay the price with a heart attacks or something else equally unpleasant.
So, get hold of those blood test results and start finding out what's really going on.
Yes I did even though I knew I was hypothyroid. It didn't go well. Made myself more unwell.I would as suggested below get copies of your blood results.
If antibodies haven't been tested I would get those done. The results may indicate an autoimmune thyroid condition which would confirm that you are hypo.
Kathryn1984, I'm fit and healthy and in my 30s. I'm a runner. I have a healthy BMI, no tiredness ect.
I guess it hasn't occurred to you that the reason you don't have any symptoms is because you are taking the additional thyroid hormone that your body needs to keep you in a fit and healthy state. That said, your profile mentions miscarriage and depression. Both of which can be (but may not be) symptoms of thyroid disfunction.
I'm just curious if anyone else is like me, with zero symptoms, and that has never had symptoms? I don't want to be putting something in my body that I don't need.
None of us want to be taking thyroid hormone if we don't need it. But if your thyroid gland can't produce what your body and brain need, then you don't have a choice. Zero symptoms suggests you do need what you're taking, otherwise you would have symptoms of too much thyroid hormone.
As others have suggested, add some more information to help us better understand your situation. i.e. recent and previous thyroid blood test results, including thyroid antibodies.
Lizzo30, 'A deficiency in progesterone is linked to miscarriage and hashimotos'
These are sweeping statements to make about serious issues. The OP hasn't even confirmed that she has Hashimotos.
Please back up your statements with links to relevant information. It is not acceptable to simply say 'you should do some research' without offering anything in support.
15. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.healthunlocked.com/thyroidu...
janeroar, 'Ouch your response is a bit harsh. She was trying to be helpful.'
I don't doubt that Lizzo30 was trying to be helpful. But far too much 'hearsay' and questionable, unsubstantiated information is passed on in this way. Which is why this forum's posting guideline asks that members provide something to back up, or to at least indicate the source of the information they post. healthunlocked.com/thyroidu...
Absolutely correct that Kathryn1984 should not simply take your word for it, so why not be that bit more helpful and supportive by giving the person you're replying to a starting point for their research.
Lizzo30 , the problem is that as as someone who doesn't have hypothyroidism yourself ... we have all noticed that you very often point thyroid patients to low progesterone as the potential cause of their problems. Unless you able to give people more detailed information about why you think this is so , and help them with where to find trustworthy information , then you are in danger of sending patients with a disease you know little about off to read 'anything from anywhere' .
And without references or further information on YOUR sources , nobody else has any way to understand why you believe progesterone is appropriate for so many thyroid disease patients , or to question the wisdom/safety of your suggestion.
Just saying 'do your own research' really doesn't let you off the hook for providing evidence /references for your opinions.
Of course we all need to do our own research , and people do .. but if you are going to come on a thyroid disease forum , and keep suggesting progesterone to anyone and everyone , without having any knowledge of thyroid disease yourself , you do have a responsibility to make sure people know what you are talking about and why .
Hi with respect I don't "keep suggesting progesterone to anyone and everyone " ? I only sometimes refer people with Hashimotos - an autoimmune disorder - to the relevance of progesterone in autoimmune disorders - when I did post a link to lara Bridans blog I was shot down for that too and told it wasn't allowed (if I recall rightly) I don't think you would want to see the links really because this site is pro levothyroxine and anti natural progesterone bc big pharma - who own HU - don't want people finding natural remedies and curing themselves big pharma wants complete control and you are batting for them
Excuse me, but don't be so sure that progesterone is the answer to everything. It's not. It most certainly is not. As a very sick hypothyroid who has at least managed to get her HRT sorted nicely with micronised progesterone capsules and oestrogen topicals, I assure you that it has made zero difference to my hypothyroidism. Just makes me feel less like killing myself for the mood swings.
because this site is pro levothyroxine and anti natural progesterone bc big pharma - who own HU - don't want people finding natural remedies
I find that statement to be unfair and untrue. Nobody here is recommending levothyroxine to everyone. Many here take NDT or T3 after being given that advice here. What is often said, though, is that people should try and optimise treatment with levo first before adding T3, by correcting nutriotional deficiencies and other factors that could affect how levo is absorbed and converted. When someone is clearly undermedicated, for instance by being kept on a starter dose for too long by ignorant doctors, and their free Ts are low and their TSH highish, the advice is usually to increase levo and see if that makes a difference. Not everyone needs or should take additional T3. If levo works once optimised, it can be much easier to take as any doctor can prescribe it, it is cheap, available at any pharmacy, and more slow-acting than T3. But nobody here is anti-T3. In fact, of the administrators in on T3 only and another on T3+T4. And I don´t understand why you think this forum is anti-progesterone? It is a thyroid forum so the focus is naturally on thyroid disease and treatment. Sex hormones and HRT are also discussed, of course, by quite a few members, but I have never seen any indication that the forum is anti-progesterone or anti-anything. There is of course also a difference between body-identical progesterone and progestins (synthetic progesterone). I have not seen any comments here saying that body-identical progesterone (which you advocate) should be avoided. So it would be interesting to know what you base your claims on.
I think you might have had some response to the effect that you DIDN'T post a link. Vaguely posting someone's name leaves people open to inadvertently ending up on the wrong site.
Her name is Lara Briden and a link to one of her sites (not sure how many she has) is this:
Far from being pro-levothyroxine, there are hundreds of posts which discuss various desiccated thyroid products. Indeed, my own medicines documents gives, I believe, equal weight to synthetic and desiccated thyroid products. There are vastly more synthetic products available, which might make it appear otherwise. But the information included for each product is as equal as I can achieve.
In my opinion, I want everyone to have the best treatment they can get. I care little as to whether it is produced by a pharmaceutical company or a supplement company.
Do bear in mind that the most important single desiccated thyroid product (Armour Thyroid) is produced by one of the largest pharmaceutical companies.
Lizzo30, 'this site is pro levothyroxine and anti natural progesterone bc big pharma - who own HU - don't want people finding natural remedies and curing themselves'
For the benefit of anyone else reading here, let us be clear about this. Natural progesterone cannot be substituted as a replacement for the T4 (i.e levothyroxine) that is not being produced by a thyroid gland. This has absolutely nothing to do with whether these hormones are made by 'Big Pharma' or a producer of 'natural remedies'. They are different hormones, and one cannot replace the other.
Neither can 'natural' progesterone cure autoimmune thyroid disease.
Lizzo30 the other day , out of genuine interest , i did a google search to look up the lady you mention in this comment.
"Ok well I recommend reading lara bridan .com she is a nutritionist and her blog explains a lot about thyroid hormones etc you will learn a lot"
Perhaps i didn't find the right person , briden /bridan ? or the right blog ?
but although i found lots of articles on other hormones, i didn't find much/anything related specifically to thyroid hormones.
Which rather demonstrates my point about giving clear links /references to the points you are making.
If you'd been able to post a link to where she does talk about thyroid hormones , i'd have been very interested to read it.
Also , to be fair , i hope you understand there is a big difference between :
being "pro Levo and pro big pharma"
... and providing detailed, accurate information, and thorough analysis of bloods /symptoms/ history , and sharing the experience we have of Levo , so that patients who ARE taking Levo as their first course of treatment can get the best results out of it ...... before encouraging them to go off into the territory of other types of thyroid hormone replacement , with all the difficulties that can present for them in finding a prescriber , sourcing it reliably and consistently themselves if they can't find or afford a Prescriber ,and dealing with their GP's lack of understanding of the subject once they are using them.
If you don't understand why we discuss levo in the first instance before discussing other forms , you should try to understand how difficult private treatment is for people who can't afford to access it, and how vitally important it is that those people have help to get the best out of Levothyroxine and the available NHS /GP services, despite the obvious limitations of that route.
There was a similar post to yours about ten days ago. It is the general view on this site that the primary aim of treating hypothyroidism is to reduce and ultimately stop the symptoms of the disease. Blood results are a very useful guide to the most appropriate treatments and the progress being made: but are not, of themselves alone, the objective. An individual's blood values are surprisingly variable and need nuanced interpretation against the standard ranges, the ratios between different measures, previous results and the patients symptoms. Not to mention blood vitamin levels and antibodies. Unfortunately GPs are often not skilled in this analysis and, frankly, even ignorant of it.
Therefore it would be consistent with this over view for someone truly without symptoms to question being medicated. However, as others have indicated the actual data would help answer your question.
A first step might be to share your data, check your symptoms and request new blood work.
I stopped taking levo (didn't end well!) at first I was ok as I now understand that you hold on to some levo so may not notice.
The reason I stopped was cause I thought I was having side effects when actually I needed an increase. After much reading on here I realise Thyroid importance and getting dosage and vitamins right for us as individuals needs work and patience.
You are right in that there's no quick fix and it can be a 'slow and careful' increase in dose until we feel well again and body is restored to its 'normal' state i.e. we feel well with no clinical symptoms.
When we're first diagnosed we have no clue about how best to recover our health or even heard of hypothyroidism - even worse is that most GPs don't know either. Mine definitely didn't as he phoned to tell me - after blood tests - that my results were fine and I had no problems.
Unfortunately he had no idea what a TSH of 100 meant and phoned to tell me I had nothing wrong. I cried as I felt awful. As I also had requested a blood test form a while before, I took form to hospital and got another blood test (the same morning).
The blood test people phoned the surgery to ask why I had come for a second blood test when they'd already been notified I was hypo.
It just goes to show that a number of doctors have no idea at all about symptoms or what the TSH actually means.
Thanks to Thyroiduk before this forum began, I have every reason to be thankful.
You know somebody (not on this forum) recently posted on another website that she had a TSH of 100+ and was under the care of several hospital consultants with heart problems and other issues. She could barely move she was so exhausted, yet they were still trying to figure out what was wrong with her, and I didn't reply, because as bad as I know doctors can be, I just didn't believe that they wouldn't immediately investigate a person's Thyroid with a TSH that high. I actually thought maybe this is a fake post. Anyway it wasn't a health forum. So I was cautious.
But now that you're sharing this experience, I am shocked to think it could be true.
I agree, before the thyroid was checked I had been through a number of tests, kidney, liver etc and offerred CBT, high dose statins, beta blockers. I could hardly get up the stairs. I was told my hair loss was due to stress- you could see my scalp. Swollen tongue, hoarse, everything on the tick box for severe hypothyroidism. Once on levo the recovery was nothing short of a miracle although I'm not there totally yet (started levo May 21) I wouldn't wish what I went through on anybody.
At least the treatment has worked for you. For many of us it does not. 8 years and counting since my world fell apart due to this and ignorant doctors. I am now very much on my own, paying for guidance, medication and testing. It's cost me a fortune and will have had a massive impact on my future. I am not going to be able to retire but I'm exhausted all the time.
Personally I am very glad to be taking levo. A tiny tablet first thing in the morning has literally saved my life. I was very symptomatic and tests showed TSH of 161. No FT4 detected. The Drs ordered a retest to check it wasn't a rogue result but it wasn't. My cholesterol was 14. You are very lucky if you don't have symptoms. Be glad it's been picked up early as I was extremely ill before being diagnosed. Please don't risk stopping levo. You may end up very ill. I doubt you were wrongly diagnosed as a false positive. As others have said, the Drs usually get it wrong the other way round.
Unfortunately quite a number of people cannot improve on levothyroxine. It gave me serious palpitations and if you wish you can click on my name for which will take you to my 'page' which expands on the 'rest of the story.
Because of I am still working on getting my thyroid where it needs to be on NDT, there is no way I can read and understand this entire thread. But, I have a few comments I hope the OP considers. (Comments about progesterone as well!)
I was diagnosed with hypothyroidism from a routine blood draw. I knew nothing about hypothyroidism, nor the symptoms. I felt great other than I had thinning hair, some minor digestive issues, and a fell asleep on the couch early in the evening. I was still active, fun loving, exercising, etc.
I was given thyroid hormone (t4) and my minor symptoms cleared up. I don'teven know if I made the connection at the time. I took this dose for some time and I did fine. My doctor tested and my TSH deemed "normal" and life went on. I trusted her and knew no different. Then out of nowhere I was hit with every imaginable symptom!!! Weight gain, hair loss dry skin, anxiety, mental fog, etc. It felt like it all happened overnight. My levels were tested and still "normal". Even though I also had physical symptoms, i was diagnosed with mental illness and tried on every antidepressant imaginable with zero relief. I was dismissed by a few doctors because they perceived my not getting better was my fault and definitely not their incompetence.
A Functional NP who dealt with women's issues was recommended, so I saw her. She made a bad situation even worse by deciding I needed progesterone. She never adjusted my thyroid, but instead put on "natural" progesterone. She talked about how calming it is and it would feel so much better. NOT AT ALL! The anxiety was unreal and I truly just wanted to die! She dismissed me because I was an impossible patient.
There is much more to my story including misdiagnoses of Lyme disease, ADHD, etc. The treatments did nothing for me.
Fast forward, i am now working with a Natropath. I have only been seeing him for a little over one month. He has looked at past blood tests and believes I have been hypo this entire time (7years). I can look back and see where these strange symptoms came and went through the years. I started NP Thyroid and I am gradually increasing my dose. Somethings are a little better, but I have a long ways to go. For the first time in many years I finally have hope!
I am hoping the OP understands that her symptoms may not be obvious or bothersome right now, but there are probably a lot of things starting to happen to her body that she is not aware of. Take it from someone who has been there...don't wait until they are debilitating before getting on top of it. It can ruin relationships, careers, mental and physical health, etc.
Many of us on here didn't have the advantage of learning and chatting with others who went through the same things. We didn't have the internet and forums. We had inadequate test and unknowlegeable doctors. We grew up in a time that doctors knew best.
My advise is to learn as much about your condition as possible, know and understand the correct tests neededto.manage it, and the different therapy options. It isn't as simple as take this little pill everyday and you will be fine. For a few, that works, but not most.
I am in the U.S., but from what I gather, the thinking, testing, and treatment around thyroid problems is about the same everywhere.
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