My thyroid is still ruining my life after 5 years :(

Hi everyone, my name is Lucy and I'm 27 years old. I've just recently joined the forum, I was diagnosed with Hasimotos 5 years ago now after the birth of my daughter but still feel like I have a lot of questions about the condition, which I've not been able to find any answers to.

I've been taking thyroxine in various high doses since diagnosis and have been on 150mcg for the last year now but I have always still had symptoms of my thyroid being underactive (fatigue, weight gain, muscle weakness, sweating, sensitivity to cold, hair loss, anxiety to name a few).

I've been back to the GP various times complaining of this and each time had blood tests that have apparently all come back within the normal range and so been sent away.

I am basically wondering are these symptoms just something I will have to live with? All of the published literature I've read on thyroid disorders over the years has stated that hormone replacement with thyroxine should return the body to normal and normal life should be able to be resumed. I don't want to appear naive but are these idealistic lies or does anyone feel back to normal because of taking thyroxine?

Over the past few weeks I have become increasingly fatigued, and this last week it has reached crisis point again as I have been unable to physically get out of bed on a morning and my whole body has been in pain. I can feel my mood slipping into a depressed and anxious state because of this and It is affecting my family and work life massively. I don't have anyone else to talk to about it all and a lot of the time feel like people think I am making up my symptoms and that I am just lazy.

I have made an appointment to see the GP again, which is happening this afternoon but I just feel like it will be the same drill of having a blood test and being told everything is fine again. I feel completely worn out and just don't have the energy to keep going around in circles with it all, any advice would be greatly appreciated.

Lucy

17 Replies

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  • Welcome to the Forum Lucy. I would strongly advise you request a copy of your blood test results from your GP, you're legally entitled to receive these although there may be a small charge for printing.

    Once you have them start a new post and include the results so members may comment. Never ever believe a GP when they say 'normal', results need to be near the top of the range as opposed to scraping along the bottom.

    Chances are your GP probably knows little about the thyroid, they often prefer to hand out AD's. Read the front page here, scroll down for detail and educate yourself as much as possible.

    thyroiduk.org.uk/tuk/index....

  • Thank you for the reply cinnamon_girl, I really appreciate your help. I wasn't aware that we were entitled to our blood results. I will definitely ask for them and post them up and also make sure i read up on the link. Thanks again.

  • You are also entitled to see your medical records, but may be charged for copies

  • yes Cinammon girl I agree, hi and welcome Also Lucy. Ask your doctor to test for Free T3 and Free T 4 also, as well Vit D and a couple of others (I forget, sorry) but if you read some of the more recent posts also you'll see where some of the Administrators suggest which Vitamin tests to ask for. I suggest that would be a good starting place for you before going to see your doctor, then you'll know all you should ask for. Post titles are a good clue for you and other more recent newcomers. Good luck and come back on here with results again, as suggested.

    There is also a good website called labtestsonline, for looking up your results.

  • Hi Lucy I have just joined the forum, I do feel for you ,my thyroid is under active i take 75 mcg of levothyroxine . Just had my bloods done and my GP reports that he is happy with my results . However I am not happy my body continue to burn up,my joints ache, and feel tired ,light headed all the time which as lead to loss of libido . I work full time and have just had a week off which was spent sleeping . I am going to go back and see my GP and see what he or she suggests.

    I was advised that my symptoms would settle down once I started my medication how wrong was they .

  • I can completely relate chesy. At first I thought i had post natal depression after having my daughter and it took until she was 2 years old to finally be diagnosed as hypothyroid. I thought then that I would finally start to feel better but it has just never really happened.

    It's an awful feeling being told you should be fine according to blood test results when you know that your body is completely not right still. I've felt even more deflated (if that's even possible) every time that I've been to see the GP. I hope you get the help and support you need from yours.

  • Hi chesy, how long have you been diagnosed and taking your 75mcg and do you know what your test results say? Docs do have such a habit of only asking for TSH to be tested, it's not enough in this day and age, just read some of the other posts! Post your test results on here when you have them in writing in front of you!

  • I have all the same symptoms as you. I had my thyroid remove five years ago and it took a while for the symptons to manifest. I was 300mcg for a while that's when the muscle weakness started. I was gradually reduced to 150mcg, which I have been on for over a year now. Every time I complain of muscle weakness, aches and fatigue I am told my bloods are within range. I am 65 now and feel that my last active years have been taken away.

  • If you've had your thyroid gland removed the very least your doctor should do is add some T3 to your T4. I think it would be humane to do so, rather than to leave you suffering for years.

    The biggest faux paux with regard to the treatment of hypothyroid patients is to diagnose everything according to the TSH result alone and the doctors believing that as long as the TSH is 'in range' the patients are fine. They are completey deluded and it's the fault of the 'guidelines'.

    Make a new appointment for a blood test. It should be the earliest and fast (you can drink water). Don't take levo for around 24 hours before test too and take it afterwards. Tell your doctor you want a Full Thyroid Function Test which includes TSH, T4, T3, Free T4 and Free T3, B12, Vid D, iron, ferritin and folate.

    Get a print-out of your results with the ranges and post on a new question for comments from members.

    You have to take your own health in your own hands. It's time for a new pain-free life as much as possible.

    This person has taken her case to the Scottish Parliament and it might be a good thing if we all saw our MPs at the same time one day.

    thyroidnation.com/fighting-...

  • Thanks for the advice. I am seeing my GP next week and will ask for a printout.

  • P.S. If GP isn't able to get a Free T3 test as many labs don't do some of them if the TSH is 'in range'. If you can afford it, it may be worth getting a private blood test. See how things go with your GP first.

  • How can we start a petition? is there one going somewhere? Bless this woman she deserves a medal. We deserve 'a quality of life!'

    Bless you for the link.

  • Lyn Mynot who started Thyroiduk.org.uk is doing quite a lot to bring thyroid gland dysfunctions into the arena but it is a slow progress. I believe it started in her sitting room then into a Garden Shed. The hours and hours plus assistance from her family and Louise Warvill.

    You can become a member of Thyroiduk.org for £20 a year with 4 quarterly newsletters. We also had a great Conference last year which was very well received with lots of members. Conference are about every 4 years.

    Theres is a poll going on at the moment (right hand side)

    healthunlocked.com/thyroiduk

    healthunlocked.com/thyroidu...

    Also on the r/h side of this link is trying to raise funds.

    healthunlocked.com/thyroidu...

    thyroiduk.org.uk/tuk/About_...

  • Many thanks x

  • It's such a shame you feel like that Kazams, I hope me and you both can get some help and encouragement from this forum to improve our symptoms and the way we feel.

  • I am sorry you are symptomatic with hypothyroidism and it isn't pleasant at all. Some women do become hypothyroid after the birth of their child which is even harder to deal with a new baby and hypo.

    I couldn't feel well at all on levothyroxine and when some T3 was added I did feel a big improvement.

    When you next have a blood test for your thyroid hormones get the earliest possible and fast (you can drink water). Refrain from taking levothyroxine until after the blood test. It's good if you can leave about 24 hours between the last dose and the test. This advice can make the difference between getting an increased dose or not.

    Many doctors make a mistake by thinking the patient is fine if they get your TSH back to within 'the normal range'. Big mistake for most of us as many need a TSH 1 or below. Also ask your GP for Vitamin B12, Vit D, iron, ferritin and folate.

    In order to get well we have to read and learn because many doctors don't know clinical symptoms, are apt to diagnose and treat according to the TSH alone which I don't agree with.

    Just for info and hypothyroidism affects us from top to toe. The third question down is the one I refer to:-

    web.archive.org/web/2010103...

  • I'd just like to say thank you to everyone that has replied to my post today. I'm grateful for all of your advice and after seeing the GP today I feel a bit more hopeful. He's agreed to undertake thyroid blood tests as well as further investigation into other causes of my fatigue. I will of course post the results when j get them, but it has really lifted my spirits to hear from other people who are going through similar things and to feel as though I have been really understood for a change.

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