Just diagnosed...

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Hi there,

I've been feeling awful for ages, went to the GP Monday who said it was related to my hypothyroidism which I said was news to me as I've never had a thyroid problem - apparently it was diagnosed in 2004 but my then GP didn't inform me and it's been sitting on my medical records ever since. Since then I've been trying to find out more about the condition, but I'm finding it hard to take everything in as my memory and concentration don't really co-operate with me, so please forgive me if I'm repeating what others have asked.

I went for a blood test this morning, and my GP called me this afternoon with partial results (how's that for service?!) I'll be able to pick up a prescription tomorrow for 150mcg of thyroxine - does this sound a lot? I'm just curious as I've read threads on here with people saying that they started on 25mcg.

My full results will be back Fri - should I ask my GP for a full breakdown of the TSH, T3 and T4 results, or is that just for him to deal with? Also, I was wondering if anyone thought it would be a good idea to ask for a referral to an endocrinologist as I have also experienced menstrual problems, although I now understand this can be related to hypothyroidism.

I would welcome any advice. Many thanks.

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11 Replies

  • Posted

    I am amazed that they are starting you off at 150mg this does not seem right ...I am led to believe that you should start with a low dose and build up..I know how you feel as I have been in that place...if you look at earlier posts I have posted my experience....the post is \"Thyroid v old git syndrome\" have a look and see if it helps you understand what you are and are going to go through...It can get better .....

    Jack

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  • Posted

    I agree with JackFrost. Your body may need 150mg to function properly but from no medication to 150mg is quite a lot. From research i have done, people are usually started 50mg and increased every 6-8 weeks if required. I started on 50mg and now on 200mg and blood tests are only borderline, so it can take some time to get the right dose. Everybody is different. I ask for my test results each time but thats only because i want to keep track of it. I had tests done in 2006 and was told everything was ok and heard no more until i followed things up last year. I remember how bad things were this time last year and definately dont want to go back there. If i know my results then i know i cant be told everything is ok again when it might not be. Take care.
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  • Posted

    Thanks Jack and Lou73!!

    Jack, having read the details in your original 'old git' post to the new you has made me feel quite positive about things. Until a few days ago, I had no idea that all my problems were connected and then the word 'hypothyroid' came into my life. I got home and read up about and cried tears of relief when I found the symptoms rang true - I thought it was just the way I was, and had no idea that treatment was possible. I've obviously been like this for some time given when the problem was first diagnosed, but now it's in another league!!

    I'm 29 going on 69. I used to pride myself on being able to remember friends' anecdotes, their workmates and flatmates etc and now sometimes I can't recall entire conversations. I look at my mobile and see I've had text conversations that feel like I'm reading the messages for the first time.

    I crawl out of bed to work - and that's part-time, god knows how any of you are holding down full-time jobs - and I wonder if the power-that-be are aware that a half-human, half-slug hybrid is on the loose. Sometimes I can't speak properly and stumble over long words - this is particularly annoying as I'm an English teacher. I study part-time and my last assignment was a bad joke - or a good one, depending on your sense of humour!! - and I'm surprised to see I've already read a book chapter when I find my notes in it.

    I used to enjoy the gym, but haven't been in ages now, and even back then I thought it was normal to go to bed after a good workout - I just assumed everyone else did it too!! At the weekend, I can sleep up to 14 hours a day - I just thought I was really lazy; and so did everyone else. Bed exists solely for sleeping, and no other activity. I haven't put my hair up since I lost a coin sized patch of hair at the back of my head. I think my party trick could be to chill a bottle of white wine in less than a minute, using my hands alone!!

    But as you say, Jack, knowledge is power, and right now I'm trying to become omnipotent!! The more I know, the more questions I can ask, the more answers I'll get, and the easier this whole thing will become.

    I still don't know why my dosage is so high, but I've made an appointment to see my GP on Mon and have a whole battery of questions to ask him - written down of course!!

    Blood work came back as follows : TSH 45.38 (0.4-4), Free T4 6.4 (10-22)

    There's no mention of T3, should there be? Lipids are raised (have been for a long time) but don't know if that's related to being hypothyroid or just down to my family history (cholesterol central on my Dad's side). Antibodies are above range too, but I suppose that could be down to any number of things.

    So I'll take my silver linings - free prescriptions, and my being overweight is glandular, doncha know? - and look forward to feeling brighter and better. I'll continue to check in to these forums as I still have a lot to learn, and maybe one day I'll be in a position to advise someone as kindly as you have, Jack and Lou73.

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  • Posted

    most docs don't check t3 levels as they go by the TSH and t4 yours combined with your high antibody reading point towards hashimoto's. don't panic but if it is then your Thyroid has packed up.. As for your memory well as you have seen I forgot the way home and also my sons name...now my mind is sharp again ...all my symptoms have gone now..even the weight is coming off...so help yourself to get better...I wrote a blog on my recovery but I don't think they would let me put the link on here...also check out thyroid UK and ask about you dot com..mary shomon has some great stuff..

    you will get better educate your doctor and help him/her to get you back to normal..

    jack

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  • Posted

    150 is a high dose to start on. Your body needs to get used to having the thyroxine and it needs to be increased slowly over several months.

    Hope all goes well for you

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  • Posted

    I agree, absolutely. A body that has been hypothyroid for some time will not cope with a sudden high dose of thyroxine and your doctor should know that.

    150mcg is probably a good dose for you but you need to get there by al lest 50 mcg increments.

    I started on 50 and noticed no difference. 6 weeks later I went to 100mcg and went into hyperactivity before settling down. I stabilised on 150 mcg for a long long time before it needed adjusting as I got older.

    I urge you to challenge your GP with this information.

    Good luck. smile

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  • Posted

    Hi all,

    Thanks for your advice as regards my dosage. I plan on asking my GP about it tomorrow. I suppose there may be other information in my medical records that could explain the high dose, but perhaps they are things that I have no idea about at the moment. I will see what he says. I can't wait for the thyroxine to kick in though as I'm thoroughly fed up of being in hibernation mode!!

    Mary Shomon's writing is very interesting and easier to read than some of the other information I've found, so thank you for putting me onto her. I'd be very interested in reading your blog, Jack, would you be able to PM me the details somehow?

    As far as I know from speaking to my Mum, I'm the only person in the family with hypothyroidism (although my paternal aunt has coeliac's and pernicious anaemia, and a very distant relative has lupus) do you think I should advise any of my relatives to get tested for thyroid problems?

    Thanks again, and I hope every one of you continues to get better.

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  • Posted

    The sad truth is most GP's know very little about Thyroid disease and the treatment, as you will no doubt find out on this and other sites.

    Starting on a high dose can cause serious side effects.

    After Radio Active Iodine treatment which completely knocked my thyroid out I was in a very bad way, the treatment from my top Endo Con was to start on a very low dose ( 25 or 50 can't remember )and increase by 25 every 2 weeks, this proved to be too quick an increase as it seriously affected my blood pressure and heart, both took a long time to recover and I was on more meds for that problem.

    Even now after years on treatment I find any reduction or increase in meds can have a horrid effect.

    Don't expect to feel better immediatly it can take many months and more.

    Good luck with your GP

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  • Posted

    Your doctor obviously does not read patient information leaflets, nor prescribing information. Almost universally the recommendation is to start on 50, lowering that to 25 in people over a certain age (varies a bit - 55/60). This applies to leaflets in the UK, US and NZ.

    A few years ago in the Netherlands, there was a trial of starting patients off on their calculated full replacement dose. (Something like 1.6mcg per kilo of lean body mass.) The differences between this and standard start at 50 was not dramatic. But few people would need 150mcg! And there were other selection criteria (can't remember, probably age and general health).

    Having seen the effects of starting at 50 had on my partner, I would be very wary. (She ended up in A&E having collapsed. They never did explain that but we are convinced it was putting thyroxine into the body that had been severely deprived for years. Maybe a higher dose would have been better? Or a lower dose? Who knows?)

    Hope by now it is sorted with your doctor. Do let us know.

    The charity Thyroid UK, easily found in Google, has lots of information.

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  • Posted

    I spoke to my GP on Mon regarding my prescribed 150mcg dose - I mentioned that from what I'd read it sounded high, and that the patient info leaflet recommended starting at 50-100mcg. He reassured me that my dosage was ok.

    To his credit, he called me today to say that he had done some asking around and that I should indeed reduce my dosage to 100mcg - above what the posters here suggest, but within the limits of the patient info leaflet.

    I guess it shows that there are some GPs who will listen to their patients and will take the time to investigate information you take to them, so it's worth doing a bit of research.

    I'm still waiting for the thyroxine to kick in, but fingers crossed it happens soon.

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  • Posted

    It will take some time so don't get impatient ...there is no quick fix
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