Hyper to Hypo - 20 years in and I still feel ill

Morning all. This is my first post, I've arrived here out of desperation.

I'm a 41 year old woman. I was diagnosed with an overactive thyroid 20 years ago, it took some time and an asthma nurse to spot what was wrong with me - I went for an asthma check and she spotted it just by looking at me. I was in the process of moving area and of course, in turn, changing GP. My new GP was due to retire and told me I have the worst case of an overactive Thyroid that he'd ever seen.

Well I went through a few years of upping & downing on drugs alone and eventually had radio-iodine treatment which didn't work in the long run, so at 25 I hav=d my second dose which did work.

I've been on Thyroxine ever since. As you have probably all experienced, almost evry illness I have is out down to my thyroid (although alopecia areata wasn't initially, until I saw a specialist).

Since that second dose of R.I. I've never been myself, I get depressed, anxious, battle constantly with my weight suffer with alopecia if I'm very stressed or anxious, night sweats, cramp in my feet & ankles, slightly low BP, swollen legs & feet, I struggle in hot weather with both lethargy & swelling feet & hands, constipation, back problems, I feel like a "weakling". I have trouble sleeping and suffer with a sun allergy and other skin problems, foggy brain, I feel like the stupidest person on the earth some days because I can't articulate myself well and forget so much, which in turn makes me angry with myself.

Today I read an article about T3 supplements and lots of peoples experiences of feeling the same way I do, it made me cry with relief but also frustration because I don't think I'll be able to get my GP to take me seriously if I approach him with that information.

I have an annual blood test and the past two years I've been told that they want to consider reducing my 100mcg per day dose of levothyroxine, to which I've protested strongly.

Has anyone get any advise of what I can do to make myself feel better and how to approach my GP? (I haven't seen my Endo for probably 14 years)

12 Replies

  • Welcome to the forum, Hippowarrior.

    Ask your GP receptionist for your recent thyroid results and ranges (the figures in brackets after the results) and post them in a new question and members will advise whether you are optimally medicated. If ferritin, vitamin D, B12 and folate have been tested post those results and ranges too.

  • I'm going in to put in my repeat prescription this week so I'll ask then.

    I have not had any other tests.

  • Hi HippoWarrior,

    Welcome ! You've arrived here in the much the same way as many of us, through being let down, ignored and in a state of general desperation. You're in good company here, though there's no magical solutions there is most definitely a whole lot of friendly support, great info and guidance.

    i've no insights into your health issues however you can easily obtain T3 without a scrip, I have just done so myself. Please pm if you want that info as it is not the protocol here to publish this info on the forum itself. That aside it is strongly recommended that you read up and inform yourself best as possible before proceeding down that route.

    Good luck on your endeavours, and also want to add that I totally understand the problem of stupid-brain fog, getting angry with yourself etc, so make way as I reckon I am a worthy challenger for stupidest person on earth ;o)

  • Rainbow100

    Thank you for your reply, I feel like weeping with relief right this second. I'm by no means top 10% Mensa member but I'm no doofus either! I've been thinking about it more & more recently, since I turned 40 I feel older and more tired, more stupid & forgetful.

    I've never been one for a huge amount of exercise but even a few years ago when I was going to the gym it didn't seem to do any good with my weight loss and more recently I just haven't had the impetus or even the slightest motivation to get moving. I literally force myself out of the house a few evenings per week to get some form of exercise.

    I gave up smoking nearly a year ago and the pounds have piled on again now, I can manage to drop 1 or 2 lb but if I have a weekend away or just not being as careful with my food & drink, it goes straight back on in 2 days!

    Re T3, I certainly won't be jumping into anything and I appreciate your offer. The more I think about it the more I think I mentioned it my GP a few years ago when I read a newspaper article, and I'm pretty sure he dismissed it out of hand.

    I'm going to get my results to post on here before I approach him or think any further about T3, I only had my last blood test about 3 weeks ago.

    I read elsewhere about campaigns to be able to get longer prescriptions i.e. more than 28 days worth

  • I read elsewhere about campaigns to be able to get longer prescriptions i.e. more than 28 days worth

    Going off at a tangent here but your comment made me wonder if you knew that you are entitled to free prescriptions, being hypothyroid. Doctors are not good (surprise, surprise) at letting their patients know they are entitled to them though.

  • Hi humanbean

    Yes I'm on free prescriptions. I'm fortunate enough to have had a very very understanding GP back when I was first diagnosed, after the retiring Dr, he was absolutely wonderful and could tell whether my levels we're OK or not (during the initial stabilisation period) just by getting one sentence out of me. I moved out of his catchment area and could no longer see him, I feel like I was spoiled by the wonderful GP in comparison to the way I'm treated nowadays.

  • Some GP's are reluctant to give the patient their own blood test results. But we are entitled to them. Asking firmly and politely should do the trick. They can make a nominal token charge for printing out results.

    Alternatively since April this year all GP surgerys should comply with patients being able to register to access own medical record online. Some surgerys still dragging their heels, and others have found they can register, but can't get blood test results online (yet). But they all need to comply with in a year or two

    To get access to your own records - take some ID - eg passport to surgery and ask. There's a form to fill in, then they get your account set up and they will give you log in details and password.

    If you can get GP to do full thyroid test - FT4, FT3, TSH and both antibodies. Plus also needs to check Vitamin D, b12, folate and ferritin - these are often low and we need very good (not just average) levels for thyroid hormones to be able to get transported around body and to work in the cells.

    Like many of us, if GP won't, you may have to get private blood test to work out what is going on


    Blue horizon thyroid plus eleven test will check all this. Simple finger prick test you do at home, post back and they email you the results. Members can then advise.

    You certainly need to know your own T3 levels before considering trying T3.

    Thyroid Uk website has loads more info ....plus read as much as you can on here to learn a lot

  • Thank you SlowDragon

    I had already prepared a small white lie to get my results if I hit any resistance, "I'm going to see the company Dr". The receptionists know me at the surgery and I've never been a problem patient so I'm hoping it won't be too much of a challenge.

    I'm really so grateful of everyone's advice & help so far. I'm having a read through the case studies at the moment, certainly an eye opener.

  • Just wanted to point out...

    Each reply to your original post has a green Reply button at the bottom of it. If you make a reply to a specific post please use that Reply button. Then the person you are replying to will get notified that they have been replied to.

  • Thank you!

  • So I popped into my GP reception last night to put in a repeat and asked about my blood test with the pre-prepared white lie, it'll cost me 35p and will be ready pick up with my script in a couple of days.

  • So I got my results!

    If nobody picks them up here I'll repost in a new one, with the notes printed under each reading

    Date 10th June 2016

    Serum TSH level - <0.01 "Just out of normal range OK"

    Serum free T4 19.3 "Just out of normal range OK"

    Serum free T3 4.5 "Normal no action"

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