Newly diagnosed as hypothyroid, please tell me things get better?? :-(

Hi everyone

So pleased I have found this site so I don't feel so alone. Please forgive the long blog I am about to write but it feels so good to be "speaking" with people who understand.

I haven't felt well for a while, always cold, periods erratic, felt depressed and would often sit and cry wondering what was wrong with me, fuzzy head, weight gain, water retention, aches and pains, dry skin - the list is endless. I was told it was the menopause (im 43) and put on Prozac. This helped with the depression a bit but I still felt grim.

Eventually went back to DR and said how bad I felt and was sent for a blood test. By this time my eyesight was strange (seeing double at one point) and I didn't want to get out of bed. I was having palpitations and my legs felt like dead weights. I realised how withdrawn I had become too, often cancelling appts, plus I had become insecure and my esteem was low.

I got a call the day after my blood tests saying I needed to make an urgent appt with the doctor which I did and discovered I had an under active thyroid.

My TSH was 68.6 and my T4 was 3.3 and the doctor said it was the worst case he had seen for years. I was given 50mg of levothyroxine and told to get tested again in 6 weeks.

I was so relieved i had been diagnosed with something as i had thought i was going mad and i thought I would take this tablet and feel amazing. How stupid and naive am I??!

6 weeks on, I feel lousy. I feel more tired than ever, I still have all the symptoms I mentioned at the start, my throat feels as though I have a ball in it, my voice is starting to feel hoarse. I am so up and down too and regularly cry my eyes out, fall out with my teenage daughter, argue with my poor husband and feel as though I cannot cope with anything.

Please please please someone tell me it will get better, I really am not sure how much more I can take. I am now waiting for further blood test results and also antibodies results x

20 Replies

  • It is awful when you think you are going crazy and such a relief when you find out there is a physical reason.

    It will get better. It might take a while to get to the right dose but it will get better. You are about due for an increase of thyroxine. 50mcg is just a starter dose. Can you phone your GP and ask if you can increase? If it is the worst case he has seen in years he should recognise that you are going to need a lot more than 50mcg thyroxine. He may be happy to let you increase before getting your test results.

    There are a few people for whom thyroxine doesn't work well enough but there are alternatives. It can be difficult getting the alternatives but getting educated about your condition will hopefully help. Luckily most people get on well with thyroxine. One of our own admins is very well on thyroxine and I know several people personally who are very well on it, so hopefully you will be too. If you aren't, don't despair because we are here to help you :)

    I hope that helps and that you start to feel better soon.

    Carolyn x

  • Thank you Carolyn for responding, it is so good to know their people can help and I hope I can be of help to anyone too as this illness is just evil! I went to the doctor on Friday but was told the blood results weren't back (it's been over a week), said how lousy I felt and was told nothing could be done until results were back as she were stabbing in the dark without them. Felt a bit annoyed because after tonnes of research, it was obvious 50mg wasn't going to make a huge difference with my tsh levels being so high and as you say, she said I was the worst she had seen for years, so why didn't she just raise my tablet dosage anyway?? I've got to ring on Monday to see if results are back and make an appt if they are. I guess I just clung onto the next blood test/appt and hoped it would be positive but came away with nothing and it sent me into a depression :-(

  • I hope your results come in soon so you can get your increase. Hang in there :)

  • All I can say is I really feel for you as I am going through the same thing at the moment. Had my thyroid out in December and have been battling to get medication correct ever since. Use all the resources that are available to you and do heaps of research about your condition. Knowledge Is a wonderful thing. I am pretty much house bound at the moment dealing with symptoms but do manage a little walk each day, a few rows of knitting and my ipad is a constant companion. As well as my GP and endo I am also going to go to a naturopath next week for advice and a counsellor to help with emotional problems coping with my situation . Just know that you are not alone and message anytime you want to talk. I know what it is like for your world to be turned upside down. It is almost impossible to cope so reach out and get all the help you can.

    Take care

    Lynda from Oz xxx

  • Oh dear, your story dounfs like a carbon copy of mine. I too went through exactly the same ss you describe even down to the teenage daughter arguments lol. That was back in March/April this year and I have been taking 100mcg of levo since early April. My symptoms have not gone away but have improved, sounds lile you may need higher dose and it will take a while to build up in your system. Plod on and look at taking some supplements, it will improve. <3

  • Lots of hypothyroid people have low iron problems, low vit D and low b12. It might be a good idea to get those checked out now while your in the early stages of building your medication up.

    Iron is needed to convert t4 to t3 (t3 is what will relieve most of your symptoms) When I started on 50 mcgs after 6 weeks my TSH hadn't even moved, it was only when I went on 75 mcgs it came down to 2.23 from 6, it does take time unfortunately.

  • If your symptoms have not improved you are probably undermedicated. It is time you had a new thyroid gland blood test and get a copy of the results complete with the ranges and post on a new question.

    Some GP's believe it is o.k. to keep patients 'within the reference range' but that's not correct. We should aim for a TSH 1 or below or until symptoms go. Some T3 can also be added but many don't prescribe this but an Endo might.

  • hi all , so glad ive found you,s. i feel like you, omg been so ill with it, been 11 days on tabs now. on 50mg then had blood test after 6 days , doctor phone me day after and said need 75 and that in 3 weeks will be having blood test again so to up the dose back to see him 29 july, face still double the size, but can feel my fingers and yesterday i don't sleep all day lol just most of it , please please someone say it gets better x

  • It can get better but it seems as if you have a good GP when he is increasing your dose quickly.

    Hopefully, an optimum dose of T4 (levo) will put you back on your feet and if not there are alternatives, unfortunately usually not through the NHS.

  • I was diagnosed in 2012 and it does get better! I'm now feeling better than I have in years and really enjoying life again. It does take time to adjust - be kind to yourself!

    Welcome to the club and good luck!


  • It's so good to hear other people's stories, thank you so much for responding. I'm so glad I came across this site as all I found before was American sites and they deal with things differently there. It is also interesting to read how different doctors deal with things. Especially yours Balla, I was told I have to leave 6 weeks between tests and between raising meds. I am going to ask to be tested every 4 weeks as I'm sure the thyroid med can build up during this period??

    I'm actually having a good day today! I have no idea why. All I know is I have stayed in bed until 11am two mornings in a row, I've been eating healthily (very little gluten), drinking lots of water and the sun is out so maybe my vitamin D count is higher!! Who knows! I'm not complaining though, I'm cleaning the house as I have fell behind, I'm preparing dinner, I'm ironing and I'm having rests out in the garden!!

    Just one thing though - I am worried about what supplements to take as I don't want it to interfere with my blood test results. What does everyone recommend I take? My hair has been falling out too and someone told me to take Kelp? Will it be ok to take additional supplements whilst they are trying to get my meds correct?

    I hope you are all able to enjoy some sun today xx

  • Your GP should test for Vit B12, Vit D, iron, ferritin and folate. Usually people are deficient in the first two and you may have to supplement. A good Vitamin Bcomplex (in addition to Vit B12 (methylcobalamin if needed)is good as it is synergestic to thyroid hormones in the cells.

    Supplements should be taken 4 hours apart from thyroid gland meds. I would avoid kelp.

    Losing hair is common but usually rectified by optimum medication.

    Thyroid meds should not be taken in the morning of your blood test and taken afterwards.The test should be as early as possible. Always get a copy for your own records.

  • Thank you for your very detailed advice. I will wait a raise in meds and see if these make me feel better. It's good to know what to ask doctors for should I not improve. Knowledge is power as they say!!

  • thank you all so must, just got hospital appointment for 28 august , so will no more than i.e. what my count is/was got lots to ask , family say ive got a bit of colour back , was white as a sheet and if i close my eyes family said i looked dead, poor things they all grown up and last few days there been lots of tears, kids lol x got white spots that turned up on my arms today but think there the least of my worries , my doctor is great belive it or not i haven't seen must of him over the years , last 12 mts gone tho change but that was about all.going to ask him on monday about vit b12 and vit d. no wonder he said no you can't work stop trying , sick note for 6 weeks. thank you all so must feel better that you understand me , god bless you,s and i will keep you up to date with what he says , thank you again x all enjoy your day,X

  • Hi

    I was diagnosed 15 yrs ago and was told it takes a while to get balanced but that I'd probably end up at 125-150 mg. it was in fact 175 in the end.

    Very stable then for years until last year when it became very hyper. Still struggling to get it rebalanced but if you were that low I'm sure you will need more. Plus everyone is different and you will get to know your body symptoms well enough to be able to feel the changes. They don't seem to like to take blood more than 6 weeks for

    It to stabilise at the dose. I was also told you may feel better for a while & then for it to drop back to start with which is why it could take a few months to stabilise. Good luck and know that it will get better :)

  • Thank you for post - you have explained things clearly and it's good to know what to expect whether good or bad. If I start to feel better but then feel rubbish again with the help of people like you, I will understand this is normal and hopefully it won't get me down xx

  • will let you no how things go , thank you for post basset mum

    am feeling little better tonight. x

  • lol forgot to say , family say am not talking like am drunk thank god for that . x

  • Hi,

    In a similar situation, I'm 46. My Dr started me on 100mc , 50 sounds a bit low ! At first I felt worse, then better, then indifferent. Up and down for a while. Forgetful, tired and I feel like my face will crack and fall off it's so dry.

    You will have to fight for what you need, do ll the research you can and you will start to understand. No joy from GP insist on seeing and Endo, I'm lucky my GP I very sympathetic and a doer. She is more understanding than a male I think.

    I hope you get better, but don't let the GP fob you off any longer. Now you know what the problem is, gather information and don't take no for an answer.

    Good luck we all know how you feel. The light at the end of the tunnel, has only been temporarily turned off ! Lol :) xxxxx

  • hi all, just to let you all no , this morning i feel so much better thank you god , up and dressed lol looks like am ready to drop this baby lol . i am taking in everything you love people have said so thank you x and reading so much about whats happening to me,and i dont feel on my own because of you,s god it is scary going tho this, will let you,s all no my downs and ups when they happen , hope you all try and have a good week x

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