How did everyone feel when they first got diagnosed?

I have recently been diagnosed with hypothyroidism, I started my treatment only a number of days ago. I have been feeling awful for a while, and if I am honest, even the physical aspects have made me feel worse emotionally. When I went to the doctors and began to get tested, I knew what they was testing for and I knew I had a number of the symptoms.

However, when I got my results back and had a consultation about beginning treatment, I didn't think it would bother me so much. I might sound like I am being melodramatic, but when she was telling me about the condition being lifelong, and telling me about the continuous blood tests and taking tablets for the rest of my life, it really got to me.

I have only recently turned twenty, and the prospect of this being a lifelong condition has really got me down. I was just wondering how people felt when they first got diagnosed? Also, if you felt down about it, what helped you?

Sorry if I sound silly! I'd just like to hear from people who've been in the same position.

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26 Replies

  • Oh dear, I can understand how it could come as a shock to be told this at your age. The good thing is that you'll be on top of it early and it will give you the best chance to feel really well for the rest of your life. It's great that your doctor even thought to test you.

    Nothing I say will help you figure out your feelings any sooner, but do trust that if you have to get any bit of you going wrong, this is not a very bad one, and lots of people take very straightforward treatment and feel really well.

    Don't forget that low mood is also a symptom and once you're on the right dose of meds you will most likely feel much brighter.

    To answer your question, I felt awful when I was diagnosed, very symptomatic, exhausted and very low mood, so I was surprised and oddly pleased, relieved really, that they'd found something wrong with me. xx

  • I think I am just feeling overwhelmed and I am grateful that it isn't anything worse. I probably just need time as it feels quite sudden and I am always stressing and worrying, so I am just seeing it as another thing to get worked up about. I am hoping that my moods will pick up soon, no doubt that isn't helping the situation.

    Thank you for the reply! xx

  • No probs. :-)

    This does sound like the low mood of someone who needs thyroid hormone - worrying, getting worked up etc - so I do hope you begin to see a difference with your meds. It can take a little time to get them just right, but some people begin to feel something pretty quickly.

    Good luck! xx

  • lamby, what an awful diagnosis when you are only twenty. Do you have any idea what is causing this? I've been posting short videos from a functional medicine point of view and there are many, many factors leading to hypothyroidism. I think some of them may be correctable if you still have your gland. A couple of these videos have to do with cortisol and I personally feel that adrenal failure is connected to thyroid problems. From what I understand it is difficult to get the further testing needed through the NHS but there may be other options. Do you have any specific information along with this diagnosis? Your TSH, FT4 and/or FT3 result? Did they look for antibodies? Why not get some education and understand your condition. I look back and regret I just took whatever the doctor said as proof positive.

  • Welcome lamby

    I was much older than you when finally got diagnosed. I cried as I had been ill such a long time and no-one ever did a check of my thyroid gland. I was relieved I had a 'name' given to my illness.

    You will have to read and learn as much as you can in order to recover your health fully. Unfortunately, many doctors and endocrinologists believe that if our bloods are within range that, therefore, we must be o.k. That's not true, initially we must have optimum medication which is introduced gradually about every six weeks till you feel much better. If clinical symptoms return once stable you must get your bloods tested again. If your TSH is 'normal' the labs may not do the other tests, T4, T3. so you may have to have a private blood test.

    You take levothyroxine on an empty stomach with a full glass of water, usually first thing and wait around 1 hour before eating. Food can interfere with the uptake of levothyroxine. Some prefer taking their dose at bedtime and not eating 2 hours before.

    On the morning of your thyroid gland blood test, do not take medication before as it can skew results and take it afterwards. If taking it at night, miss this dose and take after blood test.

    Also ask GP to check Vitamin B12, Vit D, iron, ferritin and folate.

    Best wishes.

  • Thank you, Shaws - this is just the sort of information no one tells you!! I have been on levo since 2008, but only in the last couple of months found out that food and meds taken too close together can affect the absorption of the levo!! I didn't know about the full glass of water though - is that just to ensure it gets to where it needs to be?

  • I think it needs to be washed right down, as it can swell and irritate your gullet if not.

  • HarryE is right about it could swell. Also if you take supplements they should be taken 4 hours apart from levo.

  • Any Supplements? Why? What happens? I usually take all the rest of my medication and supplements an hour after taking my hypothyroid meds. Should I wait until lunch to take them? I am on Progesterone (meds) and supplements Vitamin E, Vitamin D3, B12, Fish Oil, and DHEA all prescribed by my Dr.

  • Yes. So many things can interfere with the uptake it's better to be safe than sorry. Extract:-

    I have taken Synthroid for 15 years. I am monitored by an Endocrinologist. If you review the medical literature, it seems everything affects thyroid medication absorption. If you take it in the morning, it should be at least 30 minutes before eating. BUT you should not take vitamins or have any soy within at least 4 hours of taking the medication...

  • Thanks Shaws!! I have been taking my iron supplements an hour after my thyroid meds which is really bad. This makes sense because one day I got wrapped up in some work right after I woke up and didn't end up eating or taking my other meds/supplements until lunch and I felt much better throughout the whole day. I also read in the link that a number of people do better when they take the meds at night instead of the morning. This would make my life so much easier. I think I will check with my doctor and see if it would be ok. I am so glad I found this site and you wonderful knowledgeable people.

  • I doubt your GP would know about night dosing.

    If you do, you don't eat two hours beforehand so that's stomach is empty. Many find this beneficial.

  • Thanks for all the useful information.

  • Welcome! You have some great advice here... You are not sounding silly to me - you sound very level by trying to get opinions and support early - I wish I'd done this instead of 'coping' on my own for the first year after diagnosis.

    To answer your question; I felt relieved when I was given a diagnosis, as it was something 'real' and treatable, but also anxious as I didn't really believe at that time that I could get well again. It took some time to learn how to optimise and manage my hypo but I'm now really well and there's every reason to be optimistic.

    I think the best advice you've been given here is to get educated. I wish I'd done this as soon as I was diagnosed. Well done for starting this and Good luck!

  • Its a long time ago now but I think I was relieved that I had a reason for acting/feeling as I did. It was explained to me though that the medication was to replace something my body, for some reason, had stopped producing. Somehow that sounds better than you have to take this for life! Its also the way I've explained to people who have queried why I have been allowed to be a blood/platelet donor for many years

  • I was diagnosed last year at the age of 24. It was a massive shock because I had no idea I was so ill. It was a bit overwhelming because there is so much to learn, but everyone on this site has been so helpful. The worst bit for me is that my family don't seem to grasp how serious it actually is, their impression is I take a tablet and I'm fine. They also don't take me seriously when I tell them I can't eat for an hour in the morning as when I visit them this can disrupt breakfast plans, and they laugh at all the vitamins I take. So my advice would be to sit down with your family/partner and go through it all with them so they can help you and also for them to understand. Hope you start feeling better soon :)

  • Well love, as I was in my early sixties and had convinced myself I had cancer, I was actualy relieved to hear it was thyroid related.

    Ten years on its realy not so terrible and not life threatening if you listen to sensible people.

    This is a great site to stay with, lots of good advice...I wish you well x

  • Thank you all for you replies!

    It's nice to hear how other people felt when they was diagnosed, it has made me feel less anxious about how I am feeling!

    The comments have been really helpful and I have already learnt valuable information, just for posting this question, so I am extremely grateful for that! As for the advice, I will definitely take it on board! I will be sure to speak to my doctor at my next appointment and gather some more information. I admittedly didn't ask for much last time I was there as I was getting myself all worried and just didn't think too! I'll begin to learn more general and specific information about my condition.

    I am very grateful, thank you all! :)

  • Hi When I was first diagnosed with a underactive thyroid ,I felt relieved, & anger if that make sense, relieved that they found out why I was so tired, angry because I knew it is a life time treatment regular blood tests and also several members of my family have got it and also my wife The only way I cope with this is to try and read up on as much as I can , I also look up america website on thyroid they seem to have more knowledge on it that the uk, also look up on alternative health web sites vitamins and minerals.

  • Hi Lamby, I was initially relieved to have a diagnosis as I had no idea that I had a thyroid illness and yes after that it was a bit if a shock. I think this is a perfectly normal reaction.

    My sons friend was diagnosed hypo when he was 19. It took him 6 months before he felt well. He is now 24, he has completed uni and got a good degree and is now in South Korea doing a years teaching and loving life. Xxx

  • I was relieved to be told I was underactive 7 years ago because I had had symptoms since my son was born and he is now 36. 20 years ago I was borderline but knew nothing back then about the thyroid so couldn't push for more testing. I am now fine.

  • Hi there,

    When I was diagnosed I was feeling generally unwell and Dr did a range of tests -Hypothyroidism was a condition I

    knew absolutely nothing about,so I was completely stunned and angry -I have a needle phobia so blood test for me are an issue! .............but after less than a fortnight taking levo so many of my symptoms disappeared the main one being my anxiety levels!!!!!

    It can take a while to get medication to optimal and you must "own your own health" but far better to take tablets for the

    rest of your life than to struggle with a myriad of symptoms!

    Best wishes,


  • My daughter was only ten days old when she was diagnosed with congenital hypothyroidism and this was a fluke finding as at the time testing wasn't routine in our area and it was only because she had suspected jaundice that she was taken back to the maternity hospital she was born in and it was policy there to test. I was absolutely devastated and beside myself, thinking my new baby was going to be on lifelong medication. However, the consultant explained that if she had to have any condition, this was preferable to many others as it is so treatable. She is now thirty two and has a young baby herself. As she is hypo she was under consultant care all the way through her pregnancy and couldn't have asked for better. All was well and she really does take it in her stride and doesn't see it as an issue. She knows herself when her meds need tweaking and I am sure when you get your head round it you will be fine too.

  • I was diagnosed by accident about 10 years ago. I was a subclinical case, & my gp didn`t think that I needed treatment, just monitering. It did come as a shock because I didn`t feel ill, & still wonder why my thyroid stopped working properly. I wonder if it`s something that I di to cause it. It wasn`t until my cholesterol levels began to rise that my gp put me on Levothyroxine. I lost all the excess weight that I`d put on, & that I`d assumed was just middle age spread. Iv`e just had to come to terms with it, & be grateful that it`s not something worse, like diabetes.

  • Hi hairy, I know you didn't ask a question but I am also interested in "why" this happens. This functional medicine video offers a variety of reasons if you are interested. These are a series of 5-minute videos explaining different processes that affect the thyroid which actually may still be producing enough T4 but going wrong down the line. I'll post #1 and you can watch the rest if you find it of interest.

  • Hi Lamby94, I bet it was a shock to you and trying to get your head around the implications, I am sorry you have got hypo so young, but with good treatment the worst of the symptoms do go away.

    I have a family history of it so I was already suspicious in my late 30's that I was developing it but it was only in my mid 40's it began to really get a hold. I eventually went to my GP in pretty dreadful state and absolutely sure I was hypothyroid by this juncture. He thought I was just depressed but when I explained things in more depth he did the blood tests. To my amazement he called me to say I was hyperthyroid, I said he must have the wrong results. He said to get another blood test done and in the meantime I started going completely out of order rushing about like a crazy woman, suddenly running 13 miles after being too tired to get out of bed all day, getting into fights and arguments with strangers, shouting at colleagues.. after being comatosed most of the time for many months. I then got another call from the doctor to say I was right, that I did have hypothroidism and it was very important that I should come to the surgery as soon as I could to get a prescription for thyroxine and to start taking them immediately and not leave it especially not over the Christmas break. I was relieved and excited that I was going to feel better really soon, basing that on my mothers and sisters experience with levothyroxine (both had cancer of the thyroid) which was miraculous in my mothers case rapidly restoring to her to health bar needing serious chemotherapy to kill it off and my sister has always felt great on it. I could not wait to start feeling better again.

    It has not been quite so straight forward for me, I continued to worsen even taking the thyroxine - I thought I had had - it but slowly pulled through. I had to have tiny increases in thyroxine because I had serious heart pains so it took a very long time to get my levels ok - 9 months (I had thought it would be a matter of just a few weeks) and I did not feel great until the last month when things started to feel a lot better. Then I was then told I was hyper and overmedicated, although I felt about right, tho not exactly how I was before, so it was reduced and I have not felt so well since, but masses better than before treatment. I am taking vit D now and seem to be improving again. I think some of my problems have been psychological and these are still not fully resolved.

    This site has been really helpful to me I don't feel all alone anymore and can check things out from others here. The advice given so generously here has been really informative to me and allowed me to get a better perspective on things and how to improve them. It has been very empowering so far.

    Hopefully, you will be like my mum and sister and soon feeling loads better. The people on this site will help you to get there, for sure.

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