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    Hi I'm new

    Hi everyone,

    Just joined and looking forward to being a part of the group. Hopefully I can be of some help with the things I've learned over the years (had too) and learn some more in the process

    I've had Graves disease for years, was also diagnosed with Hashis as well 2 years ago,lucky me!

    Last year I bit the bullet and had thyroid removed as I couldn't take the swings from hyper to hypo to hyper anymore, it was happening on a daily/weekly basis and I was at the end of my rope. After I went into thyroid storm that was it, my mind was made up and I've never regretted it for a minute. Endo tried to push me into RAI but there was no way I was having it, my body was toxic enough without going radioactive lol. Still not on the correct level with replacement yet but hypo much easier to cope with than hyper...for me anyway. I was waayyyy hyper and it's left it's mark. Can't think of anything else at the minute, just thought I'd introduce myself, I'll go have a look at the posts now

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    Hi @Ayse

    to the forum and I am glad that you feeling better on being hypo. A very few people would say that. I still prefer me being hyper rather than hypo but then again everything was good and even with mild symptoms of hyper, I never had bigger issues.

    So what sort of dosage are you on and how long it's been that you have your treatment? Do you take any medicines etc?

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    for the welcome,

    Quite shocked that you prefer hyper to hypo...obviously we would all prefer to be neither. I had bad hyper, thyroid storm, a normal pulse for me was 110 that was lowest and resting. Always T3 Toxicosis though FT4 went as far as 24 (9-21) FT3 would shoot through the roof, at the highest 54 (2.6-6.2) Did you take atd's for it, how did you cope with them?

    Total Thyroidectomy end of last year and was fantastic for about 3 weeks after, the best I'd felt in years then dropped like a stone. Started thyroxine 100mcg day after op but by 6 week check FT4 was only 9 so it was increased and at the moment I'm on 150mcg liquid T4 though it's only went up to 11 on last blood and..lol

    60mcg T3 (bet that shocks you) and yes I'm hypo on that, last bloods taken when I had 40 mcgT3 in system, result 3.1!! I'm at max dose tertroxin that nhs can prescribe so it's looking like might have to self treat, will see gp next week to see if he will increase T4 again and see if it will do any good. Docs can't believe it, they check pulse, BP, reflexes and say I must be hyper, along with the fact my TSH been undetectable for years now 0.001 it's a pain tbh as it's same story everytime even though they've been told on numerous occasions from consultants, endos and surgeon it could be years before it will come back..if ever I still get the same bullsh** about the dangers of a suppressed TSH.

    Even if by chance it ever does come back they will then need to medicate me until it's suppressed again as there were cancerous nodules found when they did the pathology when thyroid was removed but it's like banging your head off a brick wall, I'm sure you've encountered the same though.

    Was your hyper down to autoimmune disease, was it raised T4 or T3 you had? I'm glad you never had the bigger issues with hyper, it's a scary scary disease. At the end up I was swinging between the two and with the crossover symptoms the only way I could tell was by my pulse or BP...hyper BP = 210/100 hypo there was less in between the two eg. 130/100 it's called pulse pressure.

    I was out of surgery 2 hrs and BP was back to where it had been 7 yrs before 110/70 and it's stayed that way ever since, surgeon said it was because I basically had been toxic for years. Crazy! I take it you're not having a good spell with the hypo then, what meds are you on? Hope you don't mind me asking but why did you opt for removal when you didn't have any of bigger issues and only mild symptoms of hyper?

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    well I was mildly hyper and I was doing great....just during routine check ups, it was identified I am hyper and things went down hill from there. My FT3 normally was 6.5ish so not a big deal.

    How were you prescribed tertroxin? Did you have to do any convincing or your doctor recommended it to you? I am only very low dosage at the moment, 150mcg thyroxine but gonna give T3 added into that to see if it brings any positive affect.

    To be honest I never checked my BP or temperature etc during me being hyper so couldnt say but I waas told my hands and body was always warm. Well at least it was better than way...now being cold

    I didnt want to do thyroid removal but stupid doctors put me on carbimazole and then it went out of control. I just wish I had done some research at that time rather than relying on doctors.....see now the time is gone and you can't turn it back.

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    Also do you take any thyroxine T4 at all on top of T3?

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    I think most people with thyroid disease wish they had done more research lol... I certainly do. Know what you mean about Carbimazole as well but that's another story! Yeah I'm on same amount thyroxine as you 150 mcg. My no's not that good though T4 is only 11 and T3 3.1.
    I was offered the tertroxin (20mcg) quite soon after thyroid was removed so was lucky in that respect I suppose. It does make a difference, God knows where I'd be without it and you'll notice it quickly. Just go slowly with it.

    I've actually been feeling awful the past few days, very cold like you mentioned and my hairs coming out in chunks, gonna try see GP this week.
    Are you getting T3 prescribed or going to try self medicating? I'd like to see doctors walk a day in our shoes.....actually make that a week...see how "normal" they'd feel. How are your no's?

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    Yeah Carbimazole slowed down the hyper symptoms but gave other symptoms like hair loss etc.

    My T4 and T3 always goes up when I increase the dosage but I never feel good. I put it down to adrenals and it could well be. I was on 150mcg and my FT4 was 16.9, FT3 3.7 and TSH 2.89. I started to raise thyroxine and at 200mcg the numbers came as FT4 19, FT3 4.6 & TSH 0.14

    I had issues with palpitations and sleep so Dr. Peatfield told me that I could be taking a lot thyroxine and I should try adding T3. So I dropped thyroxine all the way to 100mcg and recent results have come up with TSH at 12 thought FT4 and FT3 came out as normal....just above the normal range.

    Now I am giving T3 a go...bought it online and gonna see how it works. I am not quite sure the perfect dose as I took 20mcg for a week or so without feeling any noticeable difference so now I am just at 10mcg and 150mcg T4.....though 10% is 15mcg of T3.....will stay at this dosage and see how it works for me.

    You are very lucky with your doctor giving you T3 soon after the treatment as I was left alone and my TSH went upto 80 and then T4 was given which took 3 months for TSH to drop down to 7!....I just dont have authority otherwise all these doctors would be out of job!!!!

 

 

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