I've been diagnosed a year and have a constant battle wi...

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I've been diagnosed a year and have a constant battle with my GP over my symptoms. At first he refused to acknowledge that there was anything wrong even though I was tired all the time, extremely forgetful (even forgot my son's birthday) and joint pains. Finally got him to accept but he still said I was making up the symptoms as with the levels I had I shouldn't be getting such severe symptoms. I'm now on 75mcg of Thyroxine but I still don't feel it's enough. Although my memory has improved, I'm still tired and my arms have pins and needles in. I get migraines which I never used to get as well and have put on 2 stone in weight in a year which refuses to come off and have no sex drive whatsoever! I'm now pushing to be referred to the hospital to see an endocrinologist.

I'm only 41 but I do have a family history of diabetes but nobody before with hypothyroidism.

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    I was very interested to read your symptoms. I began to suffer from crippling headaches at about age 52 which were largely ignored by my GP until another in the practice diagnosed an atypical form of migraine and prescribed Half-Inderal, which has helped a lot. However,despite fluctuating blood test, he did not appear to associate it with my slowly failing thyroid (auto-immune type). I have been checked regularly for thyroid function since turning 50 four years ago because my mother's large family have a common incidence of hypothyroidism and one case of hyperthyroidism. Even so, I, and perhaps my GP have confused my other symptoms (dry itchy skin, breaking fingernails, forgetfulness and wooly-headedness, tiredness and easy exhaustion, weight gain) with the menopause despite the fact that I have beed on HRT for 10 years.

    Simultaniously I have had great discomfort in all the soft tissues in my mouth, cheeks and gums such that I have been unable to use ordinary toothpaste or mouthwash for ages as they feel like acid (I use organic Fennel & Propolis toothpaste and RetarDEX mouthwash) and my 'intimate' body parts were very itchy and prone to painful splitting skin. These symptoms have been diagnosed as another autoimmune disease called Lichen Planus or Lichen Sclerosus and may be associated with my thyroid condition. I feel physically as though I have aged 20 years in one year, but because others only see the weight gain it is difficult for them to sympathise. I was put on 100mg Levothyroxene in Nov 2005, which was increased to 150 two weeks ago as I had felt no benefit. I hope the new dose works soon, I would love to be headache-free and have a comfortable mouth again - and maybe lose some weight too!:headhurts:

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  • Posted

    I was very interested to read your comments. I have been diagnosed with Hashimotos, but also have vitiligo and have had sarcoidosis and uveitis in the past. There is a family history of auto-immune problems, although not these particular ones. Have been prescribed only 50mcg levothyroxine daily for the past two years and have only felt marginally better (the aches and pains in joints, muscles and bones have improved). Have been back to my GP regarding the debilitating fatigue and been told that my TSH and F4 tests show that I am middle range and therefore cannot have my dosage increased. Nothing else in the way of treatment has been offered, other than Cognitive Behaviour Therapy at which I was basically told "this is as good as it gets, learn to live with it". I'm 53 and sometimes feel 93. I have energy crashes in the mid-afternoon and mid-evening. I now get ready for bed immediately after tea as by 10 oclock I am too exhausted even to get undressed, and often have to get into bed fully clothed! I've given up my job and now work only part time (15 hours a week) but sometimes even this is too much. I've also gained a lot of weight which I'm finding it difficult to shift, and suffer from migraine attacks several times a week. Surely this isn't really all there is to look forward too!

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  • Posted

    hi.i was very interested to read your comments.i have had symptoms of hypothyroidism for a few years now,gradually getting worse.dry skin,constipation,NO sex drive(im only 33!)cold,uncomfortably cold i could cry,weight gain,no energy,tired all the time,infact i feel as tired when i get up in the morning than when i went to bed!my eyes feel tired/stingy.thing is,my blood results for tsh keep coming back normal.range is 0.27-4.2 my bloods are 2.8.so my gp will not treat me at the moment.i think they should treat your symptoms NOT your blood results!have been tested for liver function/kidney function and anaemia but all normal.have made another appointment with my gp armed with evidence.wish me luck!!:D

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  • Posted

    Oh gosh Vicky I wish you all the luck in the world! And also 41 year old author of the entry. I really really feel for you!!! And totally know what you are going through. Although I haven't been diagnosed as yet, I know my body well enough to know something is not right. I am 43 and loved being 40 and 41.

    I had a car accident at the end of October 2004 - hit by lorry - we were ok but I hadn't accounted for the shock and how that would knock my system around. Have been through the 5 doctors at my practice and the responses range from 'poor love you need antidepressants' (To which I reply 'no I'm not depressed, just angry that I have put on 2 stone in 18 months for no reason whatsoever!'), to more blood tests (all of which come back 'within the normal range' or for thyroid 'at the low end of normal'. How on earth do they know what MY normal is???

    Ok history: I exercise 4 times a week and have done for years - 2 aerobics classes and 2 gym sessions. I eat healthily and I am utterly fed up of well-meaning people advising me on what to eat, not eat, cut out, include, reduce etc in my diet. I started putting on weight just over 18 months ago ... and it has crept up and NOTHING I do will make the scales start to go the other way. Have tried South Beach Diet, GI Diet and I read Marilyn Glenville's book 'Fat around the middle', which is really interesting and makes sense. I stuck to the diet rigidly for 2 months, but nothing happened and as you guys know that is soul detroying. I don't weigh myself much, but we all know when we have lost or put on - I can just tell! I try to remain positive for the sake of my sanity and the family. It's not always easy and I often end in tears.To try to have a goal, I have just entered 'The Race for Life' 5K run in July and have been training for the past 2 weeks, thinking this HAS to kick start something. Guess what! I have put on 5lbs! It's got to the point where nothing in my wardrobe fits me, I don't want to go out, I don't want to socialise, I hate mirrors and I really hate myself. My poor husband is wondering what to say or not say and to be honest he is better saying nothing because I don't want sympathy or placating ... I just desperately want ME back. I liked me and I miss that so much. I too have no sex drive - could be Julie Andrews quite easily! I have to pull myself together for the children and work is my saviour as I can throw myself at it and forget. The summer is looming as a nightmare ... holidays ... bikinis ... at the moment I'd rather creep into a hole and stay there! Then I let down 3 other families as we have all booked to go away together! More stress!

    I have an appointment at the endocronology dept in May. I have paid to see a homeopath who was perplexed by what was wrong. I have had accupuncture - relaxing but no difference. I would and will pay anything to get this sorted ... but as so many people here have said, nobody seems to really understand or care.

    The only thing I know is that somehow I have to find a way of sorting this out and getting my life back. And that's how it feels at the moment - like my body is fighting me every step of the way. You get to the point where you are scared to eat, scared to not eat, too tired to care anyway! Good luck all of you - you're in my thoughts!

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  • Posted

    Hello Suzanne.

    I found these comments as I am obviously having similar problems. I have been on thyroxine for 30 years - having had my thyroid removed. I take 0.3 mg every day, and for years managed to keep a balanced weight. I too was hit by a lorry - on the M1 at the end of 1992. I 'sort of' dealt with the shock and trauma of it, but having had my confidence side-swiped as well, many things seemed to change in my life. I developed nodules and lost my voice - had to have them operated on and always knew that these were also caused by the accident, but no-one would listen to me. Weight wise, 2 stone joined forces with my body and will not say goodbye. I was looking for thyroxine related weight problems, and now you have made me think about what the accident could have to do with this as well. I will keep checking into this web site. Good luck with the 'Race for Life Run'. All the best to you. Barbara.

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  • Posted

    To all that have posted re this subject I have great sympathy as I too can relate to and understand all you say.

    I have been going to GPs for years with alot of the various symptoms to no avail and as someone else said you know your body well enough to know things aren't right. I can't remember the last time I felt well. I have been involved in a number of accidents and have read some interesting stuff about how whiplash can damage the thyroid (info given to me by a cranial osteopath) and have also been and continue to go through some horrendously stressful times on a daily basis. All of this affects how our bodies work.

    Whilst I still don't feel \"back to normal\" I feel somewhat better than I used to having been to see a Dr Peatfield - author of \"Your Thyroid and how to keep it healthy\" which I recommend everyone read. I heard of him through someone I met whose daughter has very bad thyroid problems and he was actually this lady's family GP many years ago. He diagnosed on clinical symptoms not just these blood tests which seem to be failing so many of us. To be fair one of my GPs was actually honest enough to say that had I lived in another part of europe I may well have been given thyroxin. That GP also admitted that they no longer diagnose on clinical symptoms but only use the scientific method of blood tests. It just seems ludicrous when a patient continues to present with the symptoms that they don't take any notice simply because your blood tests say you fall within the boundaries of x and y. Apparently my reading was outside the old limit but they have now extended the parameters so they tell me I am ok!

    I wish everyone well.

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  • Posted

    I have recently been diagnosed with hypothyroidsm (March) and had all the usual symptoms associated. My Doctor has been very understanding and is treating me and not the test results. It may pay you to be refered to another doctor as it seems to me (and I am not an expert) that you are on the wrong dose. When you next see your doctor take a notebook and write down everything he/she says to you as this may just do the trick and get them to medicate you appropriately.
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  • Posted

    Hi All

    I can only say go and see Dr Skinner in Mosely, Birmingham. He is fantastic and has diagnosed and treated me for the last 9 months. I have now crept up to 175mg of thyroxine even through my bloods were in the 'normal range' and feel 100% better so far. Also he said i was anaemic even though my GP said i wasn't so now i take 400mg of iron and 1000ug B12. All i can say is you need more thyroxine and other problems treated at the same time.

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  • Posted

    I can so understand how everyone feels, i've been going on for yrs saying that something is wrong. I also had a car crash 5yrs ago an haven't felt right since. What makes it worse is i work as a fitness instructor do every thing right exercise all the time eat right yet still gaining weight.

    The doctor has after 3 yrs of going on put me on 100mg of Levothroxine yet i still don't feel any better, every time i sit down i fall asleep,still putting on weight. The doc wont put mythroxine up as my last blood test came back as nearly over active, yet all my systems are under active. Like all of you i wish my systems where being trated not the blood test results. Big question now is what do i do as all this is driving me NUTS i'm sick of not being able to get into my cloths, sleeping as soon as i sit down, feeling down,cold,hair falling out.

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  • Posted

    Hi

    How long have you been on meds ? 100mg of Levo is a high dose to start on, usually you would start on 25 or 50 then every six weeks have bloods done and increase until you hit the right one for you. If you take to high a dose to start with it can make you feel even worse. It takes a long time to feel better, many months.

    Hypos feel better with a low TSH, under 1 and T4 at the upper end of the range, get printouts of your results and the ranges in your area so you can keep a check. Google thyroid forums for info.

    Good luck :lol:

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