Does anyone else feel this way?

Recently I've become hypothyroid again, and am waiting for the dose increase to take effect. I've forgotten how bad it feels: the cold, fatigue, aches, sleeplessness and brain fog. I'm hitting 4pm and completely crashing. But besides the normal physical stuff, I've been feeling quietly sad and down. I haven't the energy to think properly sometimes so my head just feels a bit empty. I am in my late teens, so while my friends party I've been staying in, feeling left out but also glad because I know I wouldn't make it though a big social situation with enough energy.

I've also never met anyone else my age with thyroid problems, and I am so reluctant to talk about it that I don't really tell my friends. But I feel so lonely right now I just want to tell someone everything, that actually thyroid disease isn't harmless like I usually make it out to be.

I was just wondering if this kind of pathetic loneliness was something others have experienced, or a reluctance to talk about thyroid disease because it's "not that big of a deal" compared to some other illnesses.

10 Replies

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  • Yes, it can be a lonely disease but there are things you can do to help. It's tough when you're young as other young people don't understand health conditions, it's never crossed their mind they might experience it one day and they don't understand that there are times when you have to stand back from the fun and just rest. 1 in 20 people in the Uk have thyroid conditions so eventually lots of your friends will get it and you'll be their adviser and way out ahead.

    Try to find one or two friends that can empathise and who can cope with you needing a bit of space when unwell. It's not worth investing your time and energy in people who dump you when you're down. You'll probably find that a few young people you already know have parents or aunties/uncles with thyroid disease and who might understand a bit.

    I found a lot of my friends backed off when I was out of kilter because they couldn't cope and I didn't want to socialise when I felt off either as I know it affects my communication skills and I can be ridiculously gloomy, not much fun at a party. But I now work in a job surrounded by people who understand health conditions and my experience helps me make a great contribution. So you may find you can use your experience in a positive way now or in the future.

    There is a lot of misunderstanding about thyroid conditions and there are other young people who have thyroid conditions. If you search you may find some facebook thyroid forums that young people access or could you start your own with the support of an older relative? There must be lots of other young people who need to find a way to talk about their condition with friends and get them clued up about the impact of thyroid disease. It's not trivial as is often assumed. You might be able to help them find the right words. To begin with how about exploding 10 myths about thyroid disease?

  • Please get a hold of your most recent labs and post here, or go and get labs done asap as there has to be something off in your levels Laura!

    Have you had nutrients done yet? Ferritin, folate, Vit D and B12 can often be deficient and when they are we can feel like 💩 . (Don't forget to fast before testing, first thing AM and no Levo for 24 hours prior). You deserve to have better health and to be happy so don't neglect to get this done OK?

    I found out my ferritin and B12 were really low and it finally made sense with respect to my depression and anxiety. To top it off a dosage increase was needed too. These can all have a massive accumulative impact on our wellbeing. So please don't neglect to get to the bottom of your symptoms.

    This is not harmless, it's not no big deal. You have my utmost respect for facing this thing at your young age. But we need to be proactive about our thyroid health as it is often overlooked and neglected by our GPs. It's another invisible illness IMO and it doesn't get enough attention given how many people it impacts.

    Post back with any questions and don't be scared to ask for help OK.

  • Hi laura, it's almost impossible to convey to others how dismal this condition can be. What is even worse, doctors don't seem to understand either. I hope yours is better. Once you get yourself optimally treated you'll be able to keep up. Your body is ready and waiting to do everything you want to do but you need to give it the ingredients necessary. This man is very helpful if you need to know more.

  • I know the feeling of 'disconnectedness' is a real problem with thyroid illness. Perhaps you could start a blog? There are probably many young people feeling as you do now. I agree that you need to get levels and vitamins checked ASAP so you can get back to feeling as well as possible. My cousin was born without thyroid function and I know he struggled. But he is the nicest man who ever lived so perhaps we get some sort of payback. I wish you well and hope with optimal medication you find your way out of the fog. People on here are always ready to help xx

  • You say you have recently become hypothyroid again - does this mean you were medicated and then stopped? If so I am not surprised that you feel bad, but when you are optimal, you will feel better. Don't be ashamed, this is a lifelong illness and the more we speak out about it, the better others understanding will be.

    Hope you start feeling better soon, do lots of research about your illness so that you are knowledgeable when the GPs try to control your illness in the wrong way.

  • hi, I've been medicated for 2 years now, but had a review about a month ago where they did bloods. I didn't actually feel that bad then, it came in the weeks afterwards. I phoned the drs when I noticed I felt this way and then discovered my TSH had risen out of range. So I have been hypo before, but I don't remember it being this lonely. I think before I was so young and confused about what was going on with my body I didn't really think anything at all.

    Thanks for your advice btw.

  • Have you had your dosage adjusted? Did you get a printout of results, and what are your ferritin, folate, b12 and Vit d levels?

  • Everything you describe about quiet sadness, feeling pathetic, etc is very familiar to me. I feel this way, and my two hypothyroid friends do, too. Being hypothyroid makes you feel depressed, and also specifically it makes you feel bad about yourself and like you're not a good and valuable person. It also makes you want to be alone.

    Thyroid illness is definitely serious and a big deal. It can have a very large impact on your life.

    I'm in my thirties, but I also struggle with this question of how and whether to talk to friends. I've been very immobile and stuck in the house most of the time for a few years, but still it's hard to convince people how serious it is. It's hard to talk about being ill or disabled, because it's not what people want to hear, and it means changing the tone of the conversation to being serious. But I think there are big downsides to not talking about it. It's always easier to pretend you aren't ill at all, but that means explaining why you can't do things in other ways, which are usually bad. I've noticed people end up feeling like they are lazy, undisciplined, scatter brained, that their personality is naturally sad or disengaged and things like that :( It's sometimes easier to do that than really accept that they're sick.

    I think it is a lifetime project to get your head round being an ill person, and that this illness will be there your whole life. You might be lucky and have it well managed and not have symptoms, or it might come up all through your life with periods of illness. It's important to be comfortable with yourself, and not feel like you're less good than other people, even though you might miss out on a lot. I think coming out as a sick person is part of that, making sure important people know about it, and that you're well practiced in saying "I have a chronic illness, so I'm going to need some extra help to do this /not going to be able to do this, but can we find something else just as good that I could do?". Otherwise you get trapped with it seeming like you're letting people down because you're unreliable, or you're sitting home alone missing out because no one realised you needed some small adjustments to make it possible.

    For example, my friends like to have boardgame nights and stay up till 2am. I can't stay up that late, but I can play boardgames. So I asked them to start in the mid afternoon, so I can manage to get dressed by then, and I go out and play for a few hours and come back by the time I get too tired. It means I can take part even though I can't do what most people do.

  • stopthethyroidmadness.com/t...

    There are also some "feelings" expressed in one of the links that might show you are far from alone if that helps. There are also testimonials. You need a little motivation to get going with your options since much of what you are feeling are chemical based.

  • I feel for you Laurawood you are def not alone in feeling this way and hopefully they will get your meds to the correct dose :) I just hope it won't take to long for you :)

    I had hyper thyroid at very young age and felt like missed my best part of youth because of it, I had part thyroidectomy and thought i was ok but looking back i think I may have been quite hypo , as I never had as much energy as my other friends , often I would not go out making me quite lonely I j and if i did go out i took quite some time to recover from it ., i could go out if i had spent the day in bed but still tired much easier than others!

    I'm now very Hypo and is definitely disabling frustrating as the Drs don't seem to care and understand how cr*p we feel and definitely don't know how to treat us as they are not trained enough on it , but the good thing you have joined this site and they can help you with your blood results to try to get your thyroid to a normal state they are much more helpful than any GP I've ever met, so you have found the right site as they have excellent and knowledgeable advice for you

    . I don't think people who have not got thyroid problems know exactly how dreadful we feel most of the time, although I do remember one friend who became HYPOthyroid she had said to me she had not realised how disabling it could be and apologised for saying that she had thought i was just Lazy i as she now knew how i felt ( Shame Drs and drug companies cant know how bad we feel or they would do something to help us and take us seriously ! I was always told by doctors that it was my age why i felt like i did I'm now only realising by this site that these Drs have been lying to me all this time its disgusting.

    I do hope your meds work soon for you but do get vitamins checked as mine were low which Drs said were ok as were in range but they have to be at top end of range not at bottom, so i bought own supplements and they do help make me feel a bit better! The advice on Vitamins i had of this site and so glad i found it .. lovely helpful people on here who actually give you better advice than Most GPs ever do as GPs it appears really are not educated or trained well on thyroid issues or now seems do they even care about how crap most of us feel !

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