Thyroid UK
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Newly diagnosed hypothyroidism

Hi all,

I’m 34, been battling with deranged levels of thyroid for about two years but try to manage it with diet and lifestyle. I couldn’t face taking medication every day. But it Didn’t work and I’ve had to come to terms with it and I’ve been started on 50mcg of levothyroxine. This is only my second day if taking it.

I’ve only read a few posts, it seems people Feel worse with medication?!

Is there anyone who’s taken it and felt better shortly after and had minimal side effects? . I know everyone’s symptoms are different, my biggest things are unable to lose weight, brain fog and feeling low.

All experiences are very welcomed. Xxx

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Hi Sharon85 and welcome! :)

I think there are many people who get on fine with levothyroxine, but they tend not to be the people who end up using this forum. There are quite a lot of people who don't respond that well to levothyroxine - probably because their bodies do not manage the conversion of T4 (which is what's in levo) to T3. T4 acts like a storage hormone, but has to be converted to the active hormone, T3.

I hope you are in the first group and respond well and quickly to levothyroxine! :)

But if you're not, this is a friendly helpful place to come to with any questions and worries :)

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Thank you for replying... it’s reassuring that you can come on here to seek help. As lovely as my gp is, people’s own experience always gives you some kind of hope and some confidence to get through things like this x

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A good tip is to always ask for a print out of any test results - you're legally entitled to a copy. Some surgeries charge an admin fee - max of £10 but I've never had to pay for mine. Don't settle for being told your results are 'normal' or 'fine'. Always ask for a print out of the results. Then post them on here and you'll get feedback.

Do you know any of your recent test results?

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Yep.. my TSH level is 24.62

T4 level is 11.3.

I’ve read people talking about their vitamin D level too, mine is also low but now taking supplements. It’s 29 at the moment x

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Hi again, bit difficult to comment on your T4 level without the range, as different labs use different ranges. My lab's range is 12-22 so on that basis your T4 is low.

I think the key nutrients with the thyroid are Vit D, Vit B12, folate and ferritin. You might be able to get these tested via your GP or if not a private testing facility such as medichecks.com. I've also read that selenium and zinc can help with converting T4 to T3.

How much Vit D are you taking? Did you know you can take loading doses if it's that low?

Do you keep a record of your resting pulse and temperature? That can give you a good idea of how you're responding to your levothyroxine.

Onwards & upwards! :) x

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The only snag with Medichecks is that they test. Active B12 and no one seems to know what that is. All usual tests are serum B12 and that's what people commonly talk about. Any ideas?

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You need to change your mindset. Levothyroxine is replacement hormone as your thyroid is unable to produce enough, similar to a diabetic needing lifelong insulin. The symptoms you mention are hypothyroid symptoms. Please remember that 50 mcg is often a starting dose, it takes 6 weeks to reach stable levels then repeat blood tests and if necessary an increase in dose. On average it takes 6 months to reach stable levels but can take up to a year. Levothyroxine is prescribed to a large number of people and it is thought that up to 80% of people do very well on it.

Do you have hashimoto’s disease? If so that can be a start to researching and learning more. You are at the beginning of a journey, good luck.

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Sorry, I find your choice of words "need to change your mindset" as disrespectful and offensive. I am also trying a natural approach and there is nothing wrong with my mindset, I can assure you. There are many success stories using a dietary approach and I don't view those of us who choose to try that approach as having the wrong mindset. I think there is a clear line between giving people advice and instructing them on what they need to do, and judging their individual choice of approach as being 'wrong' if it differs from the conventional or majority approach. We are all individuals and not everyone will think the same and we're all entitled to respect. Not everyone views Levo or any other thyroid treatment or insulin for that matter as natural - I personally view them as medication because they are synthetically manufactured or, in the case of thyroid, come from animals - definitely not natural to the human body, in my opinion. It's fantastic that Levo works for most people but there are still too many people who are miserable on it. By all means, point out the risks, as you see them, of trying a natural approach but also please respect the choice of those of us who prefer to try a natural approach without judging us as having a bad wrong mindset.

,

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Hi. I don't think the advice was meant to be as harsh as it may have sounded to you but I also see you have only recently joined so aren't familiar with the reasons many find Levo 'isn't working'. It's not always down to the type of medication though natural to think that it is and many are told that it will make you well again and so naturally are upset when it doesn't. Often looking at the results it's down to not on the correct amount of medication. Many doctors think one little pill will cure all so many are left on a starting dose which in time can make you feel worse or aren't invited back from tests every 6-8 tests until they are on the correct dose for them. Others take their medication with food and/or other medication so negating its full potential and many want to try for something that is not full of chemicals which isn't easy to do. Others aren't converting the inactive T4 into the active T3 which evety cell in our body needs so yes lots come on here saying things aren't working but mostly it's down to never been given the correct information not that it really doesn't work!

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Thanks for your comment Silverfox. Perhaps it wasn't intended, but I think when people post comments they need to think about the words they use and how it might come across.

The word Steni, below, used is perfect - that comment was patronising in the extreme. No-one here is a little child who needs to be told to change their attitude. Even your own comment is somewhat patronising. I know that wasn't intended either, but you're assuming that because I'm relatively new to the forum that I'm unfamiliar with the reasons why Levo doesn't work for many. You might or might not be right, but it's actually missing my point, which is how the advice was expressed.

I know you are one of the longer-standing members here, so I'm going to be very open in giving my personal experience of the forum so far. I think that the knowledge shared is fantastic! I think that questioning conventional medical approaches is essential; I found out very quickly myself how GPs are so lacking in knowledge (I've just recently been told by a GP that I knew more than she did about hypothyroidism!).

But, at the same time, there also seems to be a 'conventional' approach taken by the forum, which I also find to be rather narrow minded - which is that dietary changes help but there is no substitute for medication. Medication is essential for some and preferred by some; I don't question that in the slightest. But there will always be some who prefer to try a natural approach before diving straight into meds, because their symptoms might be very minor and/or because there are very encouraging success stories.

Personally, I have not found the forum supportive or helpful because my choice to try this approach does not 'fit' with the conventional approach that only medication can work. It seems that there is little advice to be given to those who choose to try a natural approach beyond being told to get on the medication asap. It would be great to see more advice around natural approaches, links to websites, academic articles etc. I personally now choose not to post queries, but I do read posts by others so that I can continue to learn.

Unfortunately, I see too many patronising comments, especially from long-standing members. In particular, when a 'Newbie' posts, there will invariably be some such comments. I personally dislike the term 'Newbie', because it seems to empower some responders to take such an approach. Even if someone posting is desperate and chooses to hang on every word of advice given, it does not give those responding a right to speak to them as if they're little kids.

That's the point I was trying to make.

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It’s ok. It’s all about voices and options, and being an advocate for one’s health. Some people are content with trying to live with their hypo symptoms, high TSH, low FT4, low FT3. If the body cannot make enough hormones on its own, it’s a choice to try hormones If nothing else is working and if a person wants to feel better.

9 times out of 10, most people who aren’t happy on levo aren’t taking the correct dose or they aren’t converting, so they need T3 too. Their FT3 and FT4 are not in optimal range, hence the hypo symptoms. Once on the right dosage and right meds, you should have little to no hypo symptoms. If you still have hypo symptoms, this means your hormone levels are not right for your body.

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I do sympathise with your comment- sometimes the advise given can sound a bit patronising, probably it wasn’t intended but I see why you made your comment.

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Thank you. Patronising is the perfect word - it's as if the lady that wrote the post, and, indeed, so many others of us, are little children that need to be taught to do things a particular way. Thanks for you comment - you said in one sentence what I took a long paragraph to try to across.

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I guess the reference referred to not being able to face medication.CBT helps change mindset but one post yesterday referred to it as brain washing. Sharon84 admitted to only having read a few posts ,struggling for two years ,presumably knowing it was thyroid and only having taken the levo for 2 days. One wonders why she had not found this forum earlier or read a great many posts before posting. Seemed more like showing frustration than being patronising.

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I've replied to Silverfox at length above, Treepie, so I won't repeat it here. Frustration, patronising, whatever - there was no need for that comment. I don't know if Sharon was aware of the forum beforehand or how many posts she read, but I don't think that's relevant. And I don't see what's wrong with her not wanting to 'face' medication. Who does with any health condition? Everyone has a choice whether or not to take medication whether it be thyroid, cancer, MS or a simple allergy. It's not a 'mindset' or denial 'problem'. It's simply a matter of personal choice. Sharon chose to try a natural approach. It didn't work, and now she's trying medication. I think it's very normal that she's anxious about that. If that frustrates someone and if they can't hide their frustration and respond with patronising comments, I think they should do the kind thing and just refrain from responding and leave it to those, like Bernie below, who are not frustated and can offer supportive advice.

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I started to look at hypothyroidism on the internet and everything is so textbook. I wanted to draw on people’s experiences and never had even thought about joining a forum!

I’ only read a few posts because even on here there’s so much information to filter through! I thought if I post something it would be easier to gather advice and information that way.

Yes, I did know it was a thyroid problem two years ago but as mentioned just wanted to go down an alternative route before I took medication. I found it difficult to be told that I would need medication “life term”! But I’ve come to terms with it now and had to change my approach to the management of it 🙂

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That is the right attitude ,I was very ill so I suppose I was happy to take the hormone.I suggest you look at the Thyroid UK website for information.Also ,for a good overview ,although a bit out of date , try and get hold of a copy of the UK version of " Thyroid for Dummies" from the library.

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If you’re happy with how you’re managing your Hashi’s or hypothyroidism, you feel great and look great, that’s all that matters. Or, if you don’t but are okay with it, that’s your prerogative, too.

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At the minute I'm happy with my choice and I think I'm making some progress, slow but steady. That could change again, but for now I'm happy. I'll know if and when I need to start using meds. Thanks again for commenting.

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I am sorry that you found the phrase I used offensive. It was not meant in that way. I would not want to patronise anyone who has posted a query on this site as we are all on our own journeys. I would also support anyone wanting to explore more broadly in the way of diet and vitamins to enhance well being. Perhaps it was more a comment on how I had managed to look at lifelong thyroid replacement following a total thyroidectomy which means that I have no choice but to take these hormones. I found it incredibly helpful to think of them as a replacement as opposed to a medication. I accept that in part it is semantics, but I was trying to be helpful.

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Thanks for clarifying. For me, the key part of your clarification is that you were reflecting on your own experience. That's entirely reasonable, but there is a tendency by some people on the site to then try, consciously or unconsciously, to almost impose their own experiences and approaches onto others, when, as you say, we are all on our own journey. Thanks again for clarifying.

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Maxisoul, the people who participate on this forum are not professionals. Oftentimes they post long responses with many url links which are entirely overwhelming for someone who has just arrived. A bit overly enthusiastic but well meant. Most forum members only have their own experiences to draw from. It can be repetitive but part of the problem is others find this forum, post a question or a description of their situation, when they've never used the search function to find out if there's any information they can benefit from. This also becomes repetitive. It is only because there are people here like Clutter who seem to draw from a deep well of patience to respond for the thousandth time to the same old same old.

And anyway, this was Sharon84's post and it seems we've managed to hijack it. Therefore, for good or ill I've just put in my two cents worth and I will go off now to continue vacuuming catfur off the bedroom carpet. ;) After carrying 20 pounds of cat peeballs and poop to the garbage chute this morning, I was thinking how similar it is to have cats and chickens: they all need to be fed twice a day, provided with clean water, have their poops cleaned up except cats don't lay eggs and they can't be kept in a coop so they mess up my entire place! Just an aside.....

I'm outta here before someone throws hard objects at my head. :):):)

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🤔I don’t think there was a need for your dig.You have said nothing constructive or helpful which I can take away or feel more positive in dealing with hypothyroidism.

This post was to have some guidance, advice and hear other people’s journey regarding their thyroid story.

As I said yes there is other information out there but actually it’s a lot of information which can actually feel difficult to filter though therefore posted for advice.

You know as they say be kind, we’re all fighting some kind of battle.

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Not sure what your point is. If it's to say that frustration and impatience about a 'same old, same old' query was the reason for the words used, it's still not an excuse. The information shared on this forum is extremely valuable, but it is massively overwhelming, so people new to the forum who do not understand their condition are not going to trawl through information that they find confusing - they just do the most obvious thing and post a query and learn as they go along. cjrsquared has already clarified that the words used were not intended to come across as they did and I totally accept that.

On a wider, more general level, there are a lot of valid comments on the forum about how dismissive and patronising some doctors and consultants can be and the negative impact it has on patients. I don't think it's acceptable from professionals or anyone on this forum who chooses to respond to a query. There is always the option just to refrain from a query that someone finds repetitive or frustrating - just don't participate. If they choose to participate, then just think about the words they use. And yes, I was aware that I kind of hijacked Sharon's post. It was one comment too many that just pushed me over the edge. Sharon private messaged me to ask about my dietary approach and I apologised and used the very word you did - hijacking. She was absolutely fine with it and we had a nice chat about alternative approaches.

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Hi Sharon84 . Hope this may help put your mind at rest. I have been on levothyroxine for over 20 years. I have Hashimotos. For around 18 years I did absolutely fine on 100mcg of levothyroxine. No side effects, lost 8 stone ( which I had put on pre-diagnosis), attended a gym 3 times a week and was working full time in a stressful profession. It is only in the last 2/3 years that I have experiened problems/ symptoms. Since joining this forum I have learnt so much about thyroid issues and the importance of optimum vitamins as well . Good luck.

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Thank you xx

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I definitely feel better on Levo but you must remember that it takes about six weeks for it to start having it’s full effect and depending on your blood levels it can take time to get the right dose

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I agree with what others have said. Many do fine on levothyroxine only, but maybe they don't join forums such as this one. They just feel fine and see no reason to talk about it.

If you convert T4 to T3 without problems, you should have no problems on levothyroxine whatsoever!

But you have to give it time. Thyroid hormone replacement is not a quick fix but a life-long treatment. You need to build your FT4 levels up slowly over several weeks before you'll know how well you convert it to T3. So patience is key in this context.

Best of luck!

Anna

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Well sorry my earliest post hasn't gone down well but like others on here I can talk from my own experiences though I also add in and I have read ....... but we are often talking to people that we don't know in many cases and aren't aware of their understanding or may be scientific background so I feel it's important to be as informative as we can and as simple as we can so it is understood. I'm sorry if you then feel I'm talking to people as if they are children but I think it prudent to keep things simple. Remember as well these posts can be searched and read in the future as well.

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