Recent hypothyroidism diagnosis

I'm 23 and was diagnosed a month ago with hypothyroidism. I've been on 50mcg per day other than a few days in between prescriptions (I'm a complete scatterbrain lately). I'm due back to work in 7 hours after 6 weeks off (I broke my hand the day before my diagnosis).

It's 2am. I'm due in work at 9am. I've been in bed for like 36 hours other than mustering up the energy for a shower earlier and that completely drained me. Some of my friends have been stroppy at me for canceling on them the last couple of days.

I'm really struggling to adjust. A few months ago I was fine. I'm usually a very social, outgoing and active person and now I'm curled up in bed feeling weak and wondering if I can handle the 20 minute walk to work.

I am due more bloods but my phone is broken and the 5 minute walk to the doctors to book them seemed too much to handle when just going for a wee was a mission. Does this sound normal? I have no idea how I'm supposed to feel.

38 Replies

oldestnewest
  • Yes, unfortunately it is normal to feel sluggish/extreme fatigue. I'm 26 and was diagnosed with hypothyroidism about 3 weeks ago(I had surgery to remove thyroid cancer). I just recently went back to work & I have been struggling with waking up and finding energy to do pretty much anything I'm on 112mcg of levothyroxine that's what the dr started me on. hang in there! I know it's rough and so weird trying to transition I've read and heard a lot that the medication especially in the beginning takes a while to get adjusted to. :( it might be too low of a dose but that's something you should discuss with your dr. Best of luck with everything. I'm here if you need anything.

  • Hi taking all that T4 and no T3 and you will feel sluggish and it may not improve. Try adding some T3 or swap to a natural combination. The trouble with T4 only is the conversion. If it doesn't convert then your blood will go toxic and the doctor will tell you to cut down. Symptoms and pulse are the only indication that sufficient T3 is reaching the cells which is essential for good metabolic health

  • you can't tell someone to just start taking t3 who has only just started treatment, she needs all her bloods doing, we need to know how long she has been on levo and we need all her test results to give a more informed opinion and suggestions. I have just read your other post and you worry me slightly, yes you are right in that natural t3 derived from pigs does contain all the four bits needed for thyroid function but the way you are giving advice out, without any background is scarily dangerous :-(

  • I'm not giving advice I didn't state what to take in dosage I'm just pointing out that T4 on its own can be a problem due to its conversion. I would urge everyone to attend a proper clinic but there isn't one in this country that's why I travel to Brussels every year to get treated. My book should be out soon and it will explain a great deal. I never give specific advice just suggestions for you to do your own research.

  • You may think that's what you are saying, unfortunately it's not coming across like that, your advice reads disjointed and ill informed to me. Telling someone in your words " to try adding some t3 " isn't telling them to do their own research.

  • I appreciate that you are trying to help, but to someone who has just been diagnosed, your advice is scary and overwhelming. I don't understand what T3 and T4 is.

    I am fairly well educated but I am not a doctor. My post was asking for advice and support.

    Flying to Brussels every year and telling me to take numbers and letters I don't understand isn't a helpful response.

    And I will not be buying your book so if every other comment is going to be attempting to plug it then you are really not helping me.

  • Hi Alyyy,

    Exactly! I hadn't a clue what this TSH/T4 thing meant.

    However, I always get a copy of my blood test and research the information from there. I rang around the country to Pharmacist s relative to NDT - the natural stuff. I learnt a lot but I am 18 mths down the track, better informed & still learning. It's good, I believe, to understand your Blood Tests is primary. All baffling at the beginning, you get there.☺

  • Thanks Gismo, I will look forward to your news from Brussels. Great stuff!

  • She's still on a starting dose, she's only started a few weeks ago. I wouldn't recommend starting t3 before she even has a chance to get to a balance with t4, she might not need it at all. She probably hasn't even had her first follow up blood tests yet. We should be careful what we recommend to people, especially when they are new to it and haven't had the chance to do all the research we've done for ourselves.

  • HI, you mention Pulse..what would. Be a good number whe. Taken With a blood pressure machine

    HAther 😊

  • Hello Alyyy and yes, I'm afraid it's par for the course. I experienced awful tiredness and just no mental energy to tackle anything. Starting to improve a lot now 7 months on from my initial diagnosis, but still not 100% right.

    You should try to get your blood tested again as soon as possible so your dose can be adjusted, you most likely need an increase. It's a long, slow process unfortunately, which most of us here can sympathise with.

    Have you had your B12, Vit D, folate and ferritin levels tested at all? All of those are vital to feeling well, if you can persuade your GP to test you then it's a good idea as you may need supplements. I discovered I was low in all of those. Hope you feel better soon. :)

  • Nobody should be on 50 mags of T4 it's not enough and can shut down your own thyroid. Change to a natural Thyroid combination giving you all 4 atoms of the thyroid hormone which your body makes. Blood tests, especially the TSH are not accurate. You can pm me if you need more information

  • I wouldn't say that TSH tests are especially inaccurate. The interpretation of the result is where their use is a real problem.

    Please don't offer Private Message responses to things which can readily be discussed on forum.

    I prefer my direct responses to be public. If I say something that is wrong in public, anyone can jump in and point that out. In a PM, there is no-one to do so. It could be as simple as a typo or an awkward way of saying something. For example, I still cannot readily make sense of your statement as it stands: Change to a natural Thyroid combination giving you all 4 atoms of the thyroid hormone which your body makes.

  • No problem, but I totally disagree with you on the accuracy of the TSH test and I would refer you to Dr Lowes scientific studies. Through this test I lay in bed for 18 months crippled with a pulse of 42, no thyroid gland and only weeks to live. When my book is published it will help you understand the enormity of the problem and the devastating effects these tests are having on human life

  • Accuracy is "Does the test measure how much TSH is in the sample?"

    With some known issues (such as antibodies to TSH itself), I don't think the test itself is regarded as particularly inaccurate. Though what a TSH result of 0.5, 1.0, 5.0 or 10.0 actually means is a whole other story. An accurate measure of something that has little to no meaning is a different claim.

  • But could it be argued that, once on a drug containing T3 (be it synthetic T3 or NDT), the TSH becomes inaccurate as, most of the time, it will be interpreted to mean that you are overmedicated (hyperthyroid) even though your free Ts are in range...? My impression is that most people taking T3 have a below range or even suppressed TSH, so I cannot help but wonder how accurate the TSH is in those cases...?

  • I don't think the test itself then doesn't measure the amount of TSH that is in the blood. It is just that a TSH of 0.01 needs to be interpreted appropriately for the patient.

    Yes - a very important issue. But not, as I see it, a matter of absolute measurement accuracy.

  • Hi Gismo, I know what you're trying to say. My 27yr old daughter had a TT 3yrs ago as she thought it would be the solution to her problem of Graves disease - (wrong). She's on 225mg of levo and still hypo. She had researched alot and believes T3 supplement is the answer, unfortunately they don't prescribed it in the UK! She had spoken to her endo about natural thyroid replacement, who had kindly said that although she can't prescribed it, she will support her decision to get it elsewhere and keep her as her patient. Problem I have is that it comes from Thailand and I worry that their food safety tests etc might not be as stringent as they are here in the UK! Her vitamin levels D and B12 are all apparently normal!

  • I know what you mean...I have been taking Thai NDT for the past year as I find both Armour and Erfa to work less well than they used to (and those are the only brands of NDT available in Belgium where I get my meds). So far, I have not had any problems with it, and it is working better than Armour or Erfa. But, of course, I have no way of knowing what the long-term effect might be...

    But I suspect most countries outside of Europe do not adhere to the same strict standards as we do when it comes to food safety etc...however, as far as I know, no prescription brand of NDT is being manufactured in the UK, which means those drugs come from countries such as the US and Canada. And, from what I've read (please correct me if I'm wrong), the US apply quite different standards in this area as well...for instance, it seems they allow genetically modified corn (and many brands of NDT seem to contain corn).

  • Gismo333

    When newly diagnosed this is all very confusing, and I don't think you offer anything to support the OP's struggle at this moment in time.

  • Hi Gismo 333, can u message me about the above please I am interested.

    Hi Alyyy,

    Sorry to hear ur so drained of energy. I understand how you feel. I too felt and still do feel like this. I was also popped 50mcgm to start with, I am now on 75 and it's still not enough. Nevertheless I go back for tests every 12weeks and they increase my script. Sure it will get there soon. :))

    It took the dr 2 years to diagnose me .. So life has been tuff. Hang in there and I'm sure they will get it sorted for you. Best of luck xx

  • you would be better going through previous posts on ndt to get full informed rounded views from many people who are using it

  • Hi Kiers, please don't listen, this is someone with their own agenda who is giving out improper advice without considering individual circumstances. With thyroid that can be very dangerous.

    You should be tested every 6 weeks not 12 and dose increased based on that. You will get there, but going too fast is counterproductive as it can shock your body, making things worse.

    Good luck,

    Gillian xx

  • Hi

    Sorry to hear you've been ill.

    I would consider paying for a test throughout blue horizon to get a full breakdown of the thyroid results vitamins and consider the saliva test too for the adrenal function.

    It's v common for every thing to be way out and you only truly can go on how you feel and the full results in front of you not just a tsh or a free t4.

    The others are right most people need t3 for a balanced body. Some times you have to cross off a few things to get back to a better health- time and money aren't on your side when you are working or off sick.

    Adaptagens are fab at boosting your immune system too. But I'd do the tests and ensure your diet is as good as possible- gluten free is best all round.

    If you get the results please post them do we can help you.

    Good luck

  • Nobody has picked up on the fact that you say you missed taking your tablets for a few days as you forgot to get your prescription. It is VERY important NOT to forget to take them. Give your GP time to retest you, as he/she will, and take their advice to start with. Hopefully you will be on the correct disease soon and feel much better.

  • I've had brain fog so bad I literally don't even know if I've taken them today and I may have double dosed for the same reason yesterday.

    I'm fairly intelligent but I have no idea about all this T3 T4 stuff and am finding it stressful. All I know it's my doctor was very casual about it saying my thyroid levels were slightly under so she'd only put me on a small dose and I should be fine.

    Prior to my diagnosis I had no knowledge of anything to do with this.

    It's like everyone is speaking in a language I don't understand.

  • Just put your tablets by your bed with a glass of water and when you wake up in the morning - take it.

    Wait at least half an hour before you eat.

    Should be ok soon :)

  • Hi Alyyy,

    I'm so sorry to hear how poorly you feel, I can totally sympathise. I'm 28 and was diagnosed last year so am still fairly new to it all, I certainly found talk of T3, T4 etc all very confusing to start with. The more you research the clearer it gets. I also got my GP to go through it with me really slowly including drawing pictures - make allowances for the brain fog!!

    I found that I had terrible brain fog and extreme fatigue to begin with - couldn't get dressed or out of the house for several months. It did improve and I feel much better now and am back at work but it takes time for your body to recover. Let yourself have that time and don't force yourself back to work if you're not well enough. Your Dr should sign you off if you feel this exhausted, I hope your work will be supportive.

    As for taking medication in the morning I also found that I wasn't sure if I had taken double doses in a day. Partly because of brain fog and partly because I set an alarm at least an hour before my 'real' alarm so I can take my levo, go back to sleep for an hour and then wake up and have a coffee straight away. That systems works for me but as I don't tend to wake up too much on the 1st alarm I'm on autopilot and often don't remember taking the pill or not. To help with this,I've bought a cute 7 day pill box (under £5 from Amazon) which has the day of the week on each lid and each 'day' is detachable if needed. I've found that a big help and also means I don't bother my husband with rustling pill packets every morning.

    Wishing you well and know that you aren't alone!

  • It took me 8 months to get back to normal once your on correct dosage you will start to feel a lot better a few don't and need extra help but don't rush into things beforehand find out naturally the fatigue wendy for me after 8 weeks or so but please keep making sure you take it every day too as that is most important to get your Health on the right track x

  • Hi Alyyy,

    That's quite a low dose if you've been on it for a few weeks it can be raised. Muster the energy to go back to the GP, stress how you are feeling.

    Get bloods done. They must test Folate,feretin, B12, vitamin D thyroid antibodies is v important to test for Hashimotos thyroditis (auto immune and v common) plus usual thyroid tests. It is very likely that you will be low in some of these vitamins as common with thyroid problems. They will also be making you feel brain foggy and tired!

    Read everything you can to educate yourself.

    Mary Shomon books are good.

    She has a website called verywell I think too but I'd recommend books.

    Kris Kresser website

    If you have Hashimotos then Dr Datis Khazzarians books are brilliant.

    You have to fight this damn disease as No one else will do it for you.

    We are all here though.

    Get yourself to GP and demand the correct bloods.

    Bluehorizonmedicals have private testing. Thyroid plus 11 or thyroid plus 15 will test everything. Not cheap but if you can afford it you then have ammo to take to GP.

    Good luck. Post blood results on here. We will help.x

  • Hey Aly, 50mcg is a starter dose, too low to help most people so don't fret. I was diagnosed a year ago and when i started on 50mcg I was dead tired all day long. It took my body a while to adjust, once my dose was increased I did muuuuch better. You'll get there eventually just hang in there, and know that this community is always here for you.

  • We have too little data to go on at the moment, really. Basically, you could belong to any one of several sub-categories for hypothyroid and at this point we don't know which one..

    Autoimmune thyroid is most likely with mineral and vitamin deficiencies leading to poor metabolic conversion of synthetic thyroid hormone..

    I wouldn't be remotely surprised if you're making a lot of reverse T3 at the moment. The first thing to do is to research what happens to your drug (which is T4) and what happens to it in the body. The major shortcoming of T4 is that it requires a lot of vitamins and minerals and unstressed, uninflamed cells to convert it to a usable form - which is T3.

    If your levels of Vit D, B12, selenium, iron, zinc etc. are not good then you will make rT3 instead which just plugs up the gaps where T3 should be formed (a bit like replacing bricks with blocks of useless polystyrene). A lot of the symptoms your getting are probably down to rT3 - which is probably why some posters get quite heated about the lack of synthetic t3 in this country. My response is that I do agree with that view, BUT it still doesn't mean that we should ignore the mineral and vitamin deficiencies we have that make conversion an even bigger problem. Deficiencies must be identified as they can lead to other illnesses e.g. Pernicious Anemia.

    There are some sufferers, who, even with a great diet cannot convert and actually NEED T3 due to genetic factors - there are tests available for that too - and it's wrong that we don't do these as a matter of course as it'd save a lot of wasted days off work etc..

  • Hi Alyyyy,

    It seems to take a few months for the Levothyroxin the balance the body & you may need a further blood test to define your TSH levels & T4 hence the profound sluggishness. It's taken me nearly 18mths to even begin to learn about the hormone intake Levothyroxin, certainly not a quick fix but you get there & this site is so incredibly informative.

  • Hi Alyyy

    I feel for you (and yes you are normal!) but I just want to reassure you that many, many people do very well on Levothyroxine, me included, once they get on the right dose. But that takes time as you have to build up slowly.

    You say that you are due more blood tests. I know this might be an effort but you really must get these done asap as the sooner you do so the sooner you will be able to feel better.

    It's important that you take your Levo every day. Is there someone who you can ask to remind you and help you through this difficult time.

    Once you feel an improvement, then you can read and begin to understand how to help yourself. There are so many people on this site who will do their very best to point you in the right direction.

  • Having an under active thyroid will affect everyone slightly differently so don't be surprised if you have symptoms other people don't have, and vice versa. There may be a lot of cross over but we're all individuals.

    You say you don't know what T4/T3 etc are. The way it's been explained to me is...your body needs hormone T3. It doesn't have a natural store so creates it by converting hormone T4 into T3. It also doesn't have a natural store of T4, so the Thyroid creates some when it's needed, and the way it knows that is when it sees yet another hormone, TSH, in the bloodstream. TSH is created by the pituitary gland when it is told to do so. So basically when your body needs T3 the pituitary creates TSH, which causes T4 to be created in the thyroid, which is then converted to T3.

    The levothyroxine you are taking is an artificial T4. For most people this works fine, for some it doesn't, or only partially. I'm lucky in that it seems to work fine for me most of the time, but when it doesn't I sure do know about it! Some people also find that some brands just don't work for them (for me that's Wockhardt, all others seem to work fine), so if you see your symptoms improve, worsen, improve, worsen, with no change in dose check what the chemist is dispensing - if they are changing brands every month see if the months you don't feel good coincide with a particular brand. But this doesn't affect everyone, just some people - my mum is fine on any brand, I'm not, so it isn't necessarily something that does/doesn't run in the family.

    It's not too long since I was put back on levo by my new GP and he warned me it can take 12 months or longer to recover, and it can be a saw tooth recovery, meaning you get better, then go backwards a bit, your dose is increased and you get better, then go back a bit, your dose is increased again and you get better, and so on, until you finally get to the correct dose your body needs. In June 2015 I ran a trail marathon round Coniston, mountains and all, 3 months later I could barely walk and I had a gazillion symptoms, including an atrocious short term memory, insomnia, muscles/tendons which didn't work, dicey digestion and double vision. I'm lucky in that my new GP seems to know what he's doing, unlike my previous GP who diagnosed sciatica!

    You'll also get to know who on this forum knows what he/she is talking about, and who just thinks he/she does, sometimes quite forcefully. Then there are those, like me, who don't post very often, but when we do it's a reply based on our personal experience only, or a question. Until you get to know who is in which category take everything with a pinch of salt.

    There is a page on the thyroiduk.org.uk website which lists all the possible symptoms. I was going to post a link to it here, but it seems the site is down at the moment. It's very informative but look at it with open eyes - you won't have all the symptoms, but you may have some you didn't realise were symptoms, some will come and go, some you'll have all the time. Hopefully your meds kick in and work soon, however it can take a while, especially at first.

    And at this point, it's time for Leo Tolstoy to sign off :-)

  • I felt extremely fatigued when I was first diagnosed, 4 months down the line and I feel much better I imagine it takes some time for your body to adjust to the Levo. I am sure that now your taking Levo there's light at the end of the tunnel, its just a matter of getting the dosage right.

    Best advice..........Get your dosage right before you book your place in the London Marathon

    If you have a Smart phone you can probably set up a daily reminder to take your medication.

  • Welcome to the forum! You must be feeling. Dry confused now with all the different comments and it's confusing enough as it is! An important point to take on board is that things in the Thyroid world go slowly and if you try and soeex it up, you can't, but you can get in a mess and set yourself further back which you don't want or need. Your doctor will have given you a started dose and I hope has told you to come back and retest in 6 weeks. It takes six weeks for the medication to get to its full potential as it builds up gradually. You need to start with a small dose to get your body used to it. Hopefully you will see improvement but it may be very slow to start with plus if you feel a little better you may negate that by doing a little more so in these early days lots of patience and be kind to yourself.

    Someone said the Thyroid UK site is down but try to get on it and read all the useful information as how to take your medication properly. If you take it in the morning then first thing on an empty stomach and a full glass of water to wash it down to where it will be absorbed. There are other things on there that are very useful, the does and donts and a full list of symptoms. Print it off and tick what you have and add your dose and if you do this every dose increase then it's a good way to hopefully see your progress. Others have thrown alternative treatments at you but forget that for the moment-two reasons-you need to learn more about how your body reacts to things anyway plus loads of people are fine on Levo but they don't post on here. I did very well for a long time but I remember how difficult it can be so I'm staying around to help others if I can and also to give something back forcall the sound advise I have received. Another important thing to take on board is that we are all different and can react differently so it's very much a journey of finding out what is right for you.

    Get into the habit of asking for your results then you can post them for comments if you wish. The ranges are also important as they differ from lab to lab.

    Sadly some doctors aren't very clued up either so useful, especially as you are learning, to ask advice as you go along. You will see posts suggesting you have other tests, Vit D, B12 and folate and iron tested. These all help thyroid health and we are often low but again doctors can be happy thstcyou are in range but it's where in the range that is important.

    Think I've thrown enough at you at the moment as to how to progress butchust a little simple thing to say about your medication. You will have been given Levothyroxine which is one of the thyroid horns T4. Now T4 is inactive. That doesn't mean it's no use to you but your body with convert it to an active thyroid hormone T3, this mostly happens in the liver and it's the T3 that every cell in your body needs. So when you haven't enough you feel like you've had an argument with a bus and lost! So T4 will help you recover but it takes time and as time goes on it may show other things aren't working 100% and we can deal with that later. You may need to increase your dose several times and that is to be expected but again some more than others so if in doubt shout out!

  • Hi Alyyy,

    Unfortunately it makes you feel like that especially when you have never experienced it before and it is all new. In a way, I am fortunate as I have always had the condition but did go through some bad times, when I was being messed about with my doses.

    It can take a while for you to feel normal. Try not to let others and their stroppiness up set you, because until some one experiences what you are doing now, they will not understand.

    It may get worse before it gets better. But try and get a regular sleep pattern going. Whilst you are adjusting, you feel you can sleep forever and still be tired. You will feel weepy and sensitive to things especially what people say. There is light at the end of the tunnel and the fog does lift. Just remember everyone is different (regardless of what the dr says), we all deal with it differently.

    Have they checked your ferritin levels as well, as unfortunately thyroid conditions, tend to walk along side, anaemia, B12 deficiency and vitamin D deficiency. These conditions have similar symptoms as well.

    Regarding the T3 and T4 issue, it confuses me. Just carrying on with the T4 medication which is the levothyroxine. That level has to be right first. I do take a T3 tablet as well as 200 mcg of levothyroxine and it works. But the NHS is stopping it due to the price. But that is a different topic for a different day. I am assuming you still have your thyroid gland? Mine never developed when my mum was pregnant with me, I have a partial non working one, so do not making the necessary hormones myself, the tablet/medication does it for me. Sometimes when you are diagnosed, it means that your thyroid is not making enough the relevant hormones that is why you need help with the medication. Hope it makes sense.

    So take care and hopefully once the medication is well and truly in your system, you will feel more like yourself again. Be aware, the dose is likely to increase though.

    Take care :)

You may also like...