I was finally diagnosed with hypothyroidism just over a ...

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I was finally diagnosed with hypothyroidism just over a year ago... I had been battling with my GP for approx 4 years & had even been to see a specialist at St. James's in Leeds... they were both adamant that my symptoms were nothing to do with having an underactive thyroid - "we all gain a little weight & start to feel tired as we get older" - and that my TSH & T4 levels were 'normal'!

However, it wasn't just a case of "gaining a little weight & feeling tired", I had always been naturally slim, even during the pregnancies of my 3 children, where my maximum weight gain had been about a stone, yet from the time of first feeling there was something wrong, to actually beng diagnosed, I had gained nearly 5 stone! I was tired all the time, even after 12 hours sleep, I would wake feeling as though I hadn't slept at all; my hair was falling out; I had numbness in my limbs; memory loss; I was depressed; I had no sex drive; I was cold all of the time; my periods were erratic, my illness was affectng my job & my relationship with my partner & my children & I just didn't want to live!

The fact that my TSH & T4 levels were supposedly 'normal' meant nothing to me... as far as I was concerned, my symptoms were more of a reliable indicator that I did have hypothyroidism... I started to research the disorder on the internet & found that the so called TSH & T4 levels differed around the country - someone who is tested 'normal' in one part of the country could be tested 'abnormal' in another part of the country! How then, can this form of testng be accurate? In fact, my mother actually took one of my sets of results to her GP & was told that if I had been a patient at that practice, I would have been prescribed thyroxine immediately! We only live 3 miles from each other!

It was at this point, that I went armed with all my information & research to see the new, young, female GP at my surgery... she was an absolute star! She listened intently to everything I had to say & agreed that I presented as having hypothyroidism - I cried my eyes out in her consulting room, mostly because I felt that someone was finally listening to me & wanted to help. A full blood test was arranged, & not surprisingly, my thyroid levels were abnormal. I was immediately prescribed a low level dose of thyroxine which I regularly have reviewed...

I really believe that it is the fact that once you are prescribed thyroxine, you are given a medical exemption certificate which allows you to receive all prescriptions for free, which can be extremely costly to the NHS, that stops GPs from making a diagnosis - I disagree with this & think that you should only receive thyroxine free of charge & perhaps then, GPs would be more likely to diagnose this life destroying illness!

At present, I am still overweight - it's a continuous battle, but I have managed to lose a stone; I still tire more easily than others, but my periods have become more regular; my hair no longer falls out, I don't suffer the cold as much, my sex drive is amazing & I no longer feel depressed... I could never thank Dr Gough enough... without her help, support & belief in me, I may not have had the strength to carry on, she is a shining light in the ever dull medical profession!

[i:2e70ad123c]This message was automatically imported from the original Patient Experience[/i:2e70ad123c]

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  • Posted

    Hi, i had my thyroid removed due to an over active thyroid that they found impossible to control using drugs. I had always been a very active healthy person, i worked 12 hour shifts and went to the gym at least 4 times a week. My hair and skin were in good condition and my sex drive was high. Since the operation, hair falls out, my skin is dry and my sex drive is no existant. My partner and i havent had sex in 18 months. I feel extremely guilty over this, but what with the weight gain that just wont come off, ive gone up from a size 10 to a size 18, the lack of energy, the hair loss, the bulging eyes (which i had operated on but still look big to me). My whole body image has changed and where i was the kind of person who wouldnt go out without make up on, now i just cant be bothered if anything i want to hide away from the world. I have been to my doctors and they just say its my age but im only 46 not 76. If i really think about it i feel very depressed about how things have changed. I actually preferred being over active, at least i had energy and looked like myself, now i look in the mirror and i dont know who that person is anymore. My voice has changed since the operation and when im angry, sad, frustrated, it doesnt matter because every emotion i feel when i talk it always sounds the same, and most of the time it sounds like im angry. I cant sing anymore because my voice is flat, i loved to sing but now even that isnt enjoyable. I have had my T3 and T4 tested two weeks ago and they appear to be normal, but what is normal, normal for me is having bags of energy (everyone is slim in my family because they are all hyperactive) when i spoke to my doctor about the weight, the hair, the tiredness,the lack of sex, he says thats normal, but normal for who i wonder...not for me. So im not sure what i can do. Who can i speak to about this, who is going to listen when i say LOOK IF FEEL ABNORMAL!!!

    [i:8871dede93]This message was automatically imported from the original Patient Experience[/i:8871dede93]

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  • Posted

    Oh my goodness! I read these two submissions and felt that both of them could have been written by me! I am now 34 but my periods stopped when I was 15 after 18 months of them appearing normal and being quite regular. I had various examinations and tests and a laporoscopy, but they all proved inconclusive so my doctors decided to put me on HRT when I was 17. Within 3 months of my periods stopping I had put on 2 stone in weight and had terrible headaches almost constantly and my moods were erratic to say the least - My family still refer to the door slamming! In my late teens and early 20s I would go for a night out with friends and supposedly be the driver as I didn't drink but we would have to get a taxi home as I would fall asleep. My friends called me Cinderella because I never saw the back of midnight!

    No matter how much I try my weight never shifted, my hair is always brittle ( I regularly have bald patches) and the skin (on my hands, feet and lips especially) is so dry it splits open and bleeds (I'm only 5'2" and now weight just short of 12 stone and have a horrendous 36G bust!).

    One GP called me psychosomatic and I actually started to believe him!

    I finally realised how much all this affected me when I got pregnant after 6 attempts at IVF. I have never felt as healthy and active as those 7 months after I stopped suffering morning sickness! I had loads of energy and could stay up after 9! My hair was glossy and grew back healthy and strong, My skin was glowing and I never suffered from one single headache. I ate like a horse and lost weight - by the time I came out of hospital my jeans were hanging off me and I felt fabulous!

    Unfortunately I went back on the HRT at my doctors insistence and almost instantly put back on the weight I had lost while being pregnant, and all the old symptoms returned.

    Since then I have been a very regular visitor to the GPs surgery and have basically started harassing them to find out what is wrong with me.

    My daughter was 4 years old before a new GP to the practice decided that my pituatry and thyroid needed investigating and got me to undertake 6 months of blood and urine tests at regular intervals.

    I was then referred to an Endocrinologist and finally saw her this week.

    Unfortunately all she could say was that my post-menopausal symptoms are an anomaly, that my thyroid function was a little out but nothing to cause concern, that I had to persevere with the HRT and she would refer me to a dietician to help with my weight.

    I was furious - so angry I started crying! I force myself to either run, play badminton or swim and I walk my dog every day and watch what I eat - I never eat junk food or anything processed yet here the professional was telling me a dietician would help. I know people whos only exercise is walking to the pub and who would never think of eating fruit and vegetables yet their skin isn't splitting open and they don't have bald patches!

    I am totally at my wits end and really am feeling depressed about the lack of progress in my problems being diagnosed or treated.

    I have found that one major stumbling block is that because all went wrong when I was still developing as a teenager, no-one really knows how I 'should be' - but my immediate family are all tall and naturally slim and none of them have any of these symptoms.

    I just have to keep hoping that something will get sorted soon.

    [i:c493b14cbd]This message was automatically imported from the original Patient Experience[/i:c493b14cbd]

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  • Posted

    Dear S.K

    I don't know, of course, if you'll get to read this reply as you posted some time ago. However, I was wondering if you've have ever been screened for \"Polycystic Ovarian Syndrome\"? You seem to have some of the symptoms: weight gain, cessation of periods, trouble conceiving.

    Reading thought the posts on this site it amazes but does not surprise me how absolutley useless, insensitive and idiotic doctors can be!!

    Good luck.

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  • Posted

    Hello all

    The good thing about this site is that we can all relate to one another. I'm 36 and have three children but look like I'm 25 and weigh 7 st 4lbs - and I am hypothyroid. I've been told that I look young because I have an under active thyroid, I don't know if this is true.

    My children's ages are 9, 13 and 14 and I've always waited for them to reach this age and then I can finally do something for myself. But that wasn't the case. A year and a half ago I was diagnosed as having an under active thyroid. I suffer from depression, severe mood swings, itchy skin, hair loss, brittle hair and nails, wanting to sleep, constantly tired, lack of concentration and LOSS OF INTEREST IN LIVING. It's not that I don't want to live, I DO WANT TO LIVE, I want to enjoy my life but I can't. A couple of the Doctors at my surgery said that I suffer from depression and if I don't take anti depressants then it can lead to psychosis!!!

    Levothyroxine (generic) didn't work for me, so I'm trying Eltroxin. I dont know what is happening to me but i just want to be normal and enjoy life. I'm sick and tired and don't have the energy to carry on at the doctors cos they see me as troublesome and a mad woman.

    Sometimes it's so difficult to carry on but I know I have to for the children. Its such a chore to wake up every day and get things done. I am receiving Cognitive Behaviour Therapy for this and sometimes I can't see the point of going.

    I can't afford to go private right now, but its something that I'm considering if Eltroxin doesn't work for me. I am going to ask for a T3 test and hope they do it for me.

    Sorry for whinging but only you all can understand what I'm feeling.

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  • Posted

    Hi there all

    I was diagnosed with an underactive thyroid in 1998 and I am still over weight due to my hip problems, unable to get around as I used to, due to the pain! Anyway I was just wondering whether other people get the same feeling as the only way I can describe is by ........if I am late taking the thyroxine I feel it very bad as once I had gone to work and forgot to take it and I was like a person going in slow motion and since knowing this kinda of feeling I kind of know when my levels aren't right?? and when I was going over-active I kinda of got palpations and trouble breathing of an evening, also no sex drive?? and as I am having blood tests periodically I had my Thyroxine reduced? and the palpatations went? my sex drive has returned now as I predict the thyroxine is at a correct dosage for this present time? What I have learned by this is when I know I am feeling under the weather I ask for a blood test and more often than not it is due to not enough thyroxine or too much as my levels have fluctuated several times over the years, along with severe joint pain all over but that is another story !!!!

    I hope this has helped xx

    All the best for 2008

    SES

    :angel: :cupid: :cheers:

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  • Posted

    Hello to MS

    Just to say that I understand how you are feeling. I myself have had periods of depression with suicide thoughts but I am sure that these episodes are being prompted by the fact that I am low in T3. You are on the right tracks when you say you are going to have your T3 tested. Unfortunately you might have to pay, but this will be a small price to pay in return for your sanity and good health. Many hypo sufferers do benefit from T4/T3 combination of treatment and, yes, my doctor did offer me anti-depressants which I refused. Shortage of T3 causes depression and lack of energy. I am waiting to see an endocrinologist (with an interest in thyroid problems) privately, which I can ill afford but what the heck. I will phone him first to ensure he is flexible in his approach to treating under-active thyroids. Be firm and assertive with your doctor. You have a lovely, young family whom you need to enjoy. Lots of Luck, Larks. smile

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  • Posted

    Hello to Larks

    Thank you for the advice. I know this sounds so ridiculous but when I read your comment it brought tears to my eyes. I will push to see an endocrinologist. In the past I have asked my doctor who didn't bother. A nurse friend of ours has also advised to me to see an endocrinologist at the hospital and said that GPs aren't allowed to refuse anyone who wants to see one.

    Thank you once again

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  • Posted

    Hi Ms

    Many thanks for your post. I am so pleased you are going to ask to see an endocrinologist. Years ago when anyone was diagnosed with hypo problems you automatically saw a specialist but now with NHS cuts, etc all the treatment lies with the GP, who is only a General Practitioner. So stick to your guns. Keep us posted - how you get on - any problems share them with us I am sure we will be able to give you advice and support. Once again, lots of luck, Love Larks. :ok:

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  • Posted

    Hello to Larks

    I've been referred to see an endocrinologist. See my main comment on the experience page.

    Any advice will be greatly appreciated.

    Thanks

    ms

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  • Posted

    hi there ms

    Good luck with your appointment, never been offered an appointment with a endocrinologist even though my levels flutuate, I have increased my thyroxine this week from 150mcg to 175mcg and this has altered compared to my tests in october?

    Kind regards

    SES

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  • Posted

    I can't believe the trouble you are experiencing with the good old NHS. My chiropractor in the UK said he thought I needed to get my doctor to do a thyroid function test. As I live in Tunisia I waited to get back here, got a prescription for the lab test from my doctor yesterday morning, had it done yesterday afternoon, at a cost of approx £35 (TSH, FT3 and FT4). Got the results this afternoon and took them to my doc (£8 for the visit) who prescribed Levothyrox. Went straight to the chemist and bought them (60p for 28 tablets) and start the first tablet tomorrow morning. I am also going for a ultra sound scan of the thyroid tomorrow afternoon (cost not yet known but probably no nore than about £25) All this in a third world country!!! Why don't you all come on holiday to sunny Tunisia and get yourself treated?!
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  • Posted

    Hi there all xx

    My Thyroid levels have fluctuated from time to time and its when I realize I don't feel \"normal\" if that's what you call it lol I goto the doctors and ask for a blood test, usually it turns out my levels have gone up or down??? I diagnosed myself funny enough as my GP said I was \"depressed\" and I ask the nurse to do this test and there were the answers to confirm my suspicion, the situation has arised again as I have said for sometime to my GP I have Fibromyalgia and he kept saying no....... I was diagnosed on wednesday 13th February so I would just like to point out that even though we are not doctors we generally know our symptoms and can relate to conditions as we don't need no qualification to do so just research our symptoms!!!!

    Kind Regards to you all :cupid:

    SES

    :diva:

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  • Posted

    :o thats what i feel. I feel tired. i have been losing my hair and have had trouble losing weight.i get dry skin. i get achy and muscles soreness. i dont even really excercise i want to but its not easy with the tiredness. after before i was sleeping up to 12 hours and i didnt feel rested. i had some broken window treatments so i thought that was what was affecting my sleep. well suspected. i still had trouble with sleep, feeling sleepy and tired at the time i should go to bed. my bedroom would become hot with the sun coming through the window. i would sweat and get hot, it was not nice and interrupted my sleep but most of the time i would fall back asleep again. i am so glad i found this site. smile it is wonderful to be able to talk some place with people that actually have been through and are going through what i am going through.
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  • Posted

    Hi folk

    Unfortunately you will find that eventually you will "stabilise" (in inverted commas, because you will wobble around this description), but it will be an ongoing lifelong endeavour, but I promise you, you WILL start feeling better when you do. I'm afraid in my experience, you never actually get back to normal, whatever that may be to you, but you learn to live with. Pacing yourself is one of the keys, and the other, probably the most important, is to educate yourself and be your own advocate.

    If you are on Facebook, I can thoroughly recommend a group I belong to, all sufferers from all over the world, who you can 'talk' to and get so much support and practical advice. Please keep your chins up, and keep on those Drs backs!

    EMIS Moderator comment: I have removed the direct url - if users wish to have the link please use the Private Message service.

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  • Posted

    Hi

    I was eventually diagnosed with hypothyroidism in 1995 after it had progressed to Myxoedema, I piled on the weight, my hair fell out, my skin was flaking off, my brain was addled and I lost the use of both hands for 7 months. These problems gradually returned to normal but  I was told by my GP that I would never lose the weight!

    Having tried in vain for many years to lose weight I came across a book called The Fast Metabolism Diet by Haylie Pomroy (approx £8 from Amazon). The diet is like no other I have ever tried and means eating three main meals and two snacks a day (recipes included in the book). You eat all food groups in a specific way and she explains what works and why it works.

    I went from size 24 to size 12 in 5 months and lost 4 stones in weight. This has changed my life in so many ways. People don't recognise me and have asked me how I did it so I have told them about the book. I have people ringing me to tell me how thrilled they are with the results. The book is fascinating reading as Haylie Pomroy is animal trained and medical trained and speaks such sense. The great thing too is that I have maintained the weight loss even though I am not on the diet now but still follow the principals.

    It certainly worked for me so I am pleased to pass this on to you and hope it does for you too. Wishing you well.  Mandy

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