I was just diagnosed, please give me light in the darkness.

Posted , 7 users are following.

I was recently just diagnosed with severe thyroiditis and I am having heart arrhythmias. I just started a very low dose of levothyroxin and I just have read a lot into it. Before taking it My hair is very brittle, I've gained over 20 pounds in 3 months, my hands having broken skin all over them, my joints hurt, my memory is very foggy, and I can sleep over 18 hours a day if I have the day off. I'm only 22 years old and I am now extremely depressed because by just looking at all the forums it seems like all I have to look forward to are pills, being fat, being tired, being miserable and possibly losing some hair.. Can someone please give me some motivation to not just think this is how the rest of my life will be. I'm so upset.

3 likes, 15 replies

15 Replies

  • Posted

    Your poor thing. Thats just awful. Im much older and started taking tabs last October. Started on 25 mcg, now on 50. I felt brighter and less depressed almost immediately. I am noticably less tired. But still having aching joints and weight issues, although could be down to stopping smoking too. Have a search for other websites with active forums......I have seen them mentioned in this forum.........hypothyroidism uk is one, I think. Keep on at your gp, you may need to be on a higher med dose. Or push for a referral to an endocrinologist. Hope you feel better soon.
    • Posted

      Thankyou Debbie, I have a call in to the endocrinologist but they don't have open appointments until April and I don't want to continue feeling this way until then. I see a cardiologist for my heart tomorrow actually but just feels like I can't get ahead of his thing and seeing everyone only out their negative stories up and no positive stories up is just hard. How did you deal with it all at first?
    • Posted

      To be honest, I went to doc because of weight gain and tiredness. Im in menopause. I was relieved to have a diagnosis as I thought if it was menopause, Id be like this for the rest of my life. Still a bit tired and overweight, and have to go back to doc. I agree with scazzoh, you should not be feeling so awful. Find another doc. Mind you they will probably just ask you to wait  until you see endcrinologist. Post you results up and see what advice you get. Its a bad time for you, but I beleive you will get better, much better. X
    • Posted

      I actually am already in to see an endocrinologist but he won't give me any medication for my symptoms. Like he won't give me anything for depression or my low energy or my dry skin and hair he just says the thyroid meds will eventually work -__- it's just annoying. I mean when I've had surgery my pain will eventually go away but they don't make me deal with it without medication until then, I feel like it's the same thing.
  • Posted

    Hi Ashleymarie, if you are on a very low dose, it may be that you need an increase and the tests need to be repeated.  Have you got the numbers for the blood tests, including the ranges?You are entitled to get these from your doctor.  You can post them on this forum or if you join Thyroid UK, you can post the results on their 'health unlocked' blog, where there a helpful people who can interpret the results and arm you with information for when you see you doctor. Keep a diary of all your symptoms. You should not have to feel so ill.If your doctor doesn't help you, find one who will. Don't give up hope. 
  • Posted

    Hi,

    I hope that things take a positive turn for you soon. You wrote that you just started meds. It can take a bit of time for them to kick in. I am only boarder line and it took a few weeks. As suggested, a diary is a good way to record symptoms but also improvements that we forget about. I look back at mine to remember how far I've come. I couldn't walk up my stay without resting at the start of my entries and a few weeks later I was walking a mile. Now I work out 7 times per week. I've recorded it all. I'll admit that I have some low energy times but the diary helps.

    When you're feeling so low, it's hard to see that there is any hope of feeling normal. Some of the stories on sites like this can be scary as well. I have to say, so far I've had a very positive experience with the meds and since starting them last September.

    I would suggest that if it's been more than a month and you're seeing no improvement anywhere that keeping in touch with your doctors is important. Also, there are groups on FB that are very supportive and positive.

    • Posted

      Hi, did you have weight gain and if so, has exercise helped? Ive just started a little jogging but its so difficult.
    • Posted

      Hi Debbie,

      I actually didn't gain weight prior to starting meds, which made me second guess the diagnosis, eventhough all my other symptoms were textbook hypo.

      I did actually gain after the meds, my only guess is because while I was feeling better and had an appetite, I couldn't be as active as I needed to be. This doesn't seem to be the norm though and my weight gain was only a few pesky pounds.

      In terms of your running, I'd say be kind to yourself! Do what you can keep a log and try to go a little but further every time, even if it's by two steps. How much did you run before diagnosis and how long have you been on meds/feeling like you can be active?

    • Posted

      Hi, was doing 10 mins on my crosstrainer almost every day. Walked the dog most days too. But weight gain and overwhelming tiredness meant it was much harder than it normally would have been, and at that level of exercise, it would have easily kept my weight in check. So thought I would try running to really kickstart my metabolism. I stopped smoking last year, and going through menopause, so its full whammy at the moment. I think if I give in to it, I will just become a fat blob, so, although running is sooooo difficult, Im just doing a wee run then walking. Doing this 5 times round a football pitch. I know my weight gain is hormonal or due to meds. But who knows which hormones....hor,,,,moans. Who would be a woman! X
    • Posted

      you are so knowledgeable! I was wondering if some of your side effects were muscle pain, specifically in the neck and upper back area. I just started meds a little over a week ago and am praying that they kick in soon :-)
    • Posted

      Thank you. I'm just another under active thyroid sufferer, I am no expert though. I would say that your muscle pains may be due to activity through the day or stress. I've heard of lower back pain due to uat but not upper body. I could be wrong though.
  • Posted

    Hi ashleymarie. I really sympathise, and know what you're going through. Although I've been on a cocktail of pills for years,I know I have become worse in the last few months, and suspect it's down to the thyroid (I've been on Levothyroxine since June 2011). I decided to start doing more research into the thyroid and Levo on-line (which can be very depressing,as you don't often get the good stories),and buy a book to understand the workings of the thyroid. This morning I went to my GP, having already written him a long letter in advance.I knew I would get confused and have memory failure otherwise. This letter prepared him, so we didn't have to fit everything into my double appointment. I trust and like him,and have left him to find me a different endocrine specialist to give me at least a second opinion, and at best,he'll find one that specialises in the thyroid,which is what I asked for.

    Try thyroid searches on Facebook,Thyroid UK, and one that is for patients only,who discuss and give support to eachother. Hope this helps.Good luck.

  • Posted

    Hi Ashelymarie, sorry to hear of your thyroid problems. Maybe if they get the thyroid med correct for you, the arrhythmia will straighten out. It does take about 6 weeks or so for your body to adjust to the med. It isn't a death sentence :-) Press for more and better testing and answers. Search for a good endocrinologist in your area, one that will do the testing that needs to be done and treat you with the meds you need to get straightened out. It does take time. Hope you feel better soon.
  • Posted

    Thankyou everyone these all help. I will start working on keeping a diary and try giving the medicine some time to work. Thankyou all.
  • Posted

    Poor you. I remember feeling that way when I was diagnosed many years ago. There is light at the end of the tunnel, but I can be a long road I'm afraid. Have you spoken to your gp about how you are feeling. If they are supportive it makes things easier.,I was on antidepressants for a year when diagnosed and helped lift my mood while my body caught up whilst on Meds. It can take while to get doses right and to feel full effects. I was off work 6 months and another 6 til felt back to old self. Look at some of other sites and forums, thyroid uk etc. do some reading if you can . Hope you are getting referred to endocrinologists as mine has been my saviour! Good luck. If you look at thyroid uk I am sure they have book list etc, I got couple good ones on ebay. 14 years on, I am still learning new stuff about it! 

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.