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Just diagnosed with Graves Disease

Posted , 7 users are following.

diane48831
diane48831

Don't know where to begin.  Diagno3sed with Graves with high loads of symptoms, FT4 42.1 and T3 27.1.  Seen endocrinologist and waiting for a scan and results of more bloods.  Am on 30 mg of Carbimazole.  Feeling absolutely dreadful, weakness and tiredness, irritable, throbbing thyroid, tremors.  I work in a school and really struggled up to half term. I am going to have to reduce my hours as I am finding it difficult to cope. Has anyone else had to reduce work?  Don't know how else to manage as do not want to take sick leave.  I feel like I am giving in but not sure how else to cope.  Help, how long does this last for?

0 likes, 8 replies

8 Replies

  • ariadne43
    ariadne43 diane48831

    Posted

    I work part-time and struggled with that!  Once your treatment kicks in you will start to feel better.  If you find you arent getting better consider reducing your hours, being stressed doesnt help at all!  Horrible thing isnt it? 
  • linda187
    linda187 diane48831

    Posted

    Diane, my Graves was diagnosed early when I did not have a lot of symptoms and when my blood thyroid levels were not that far out of range for FT3 and FT4, TSH however, went from 1.01 to less than 0.1.  I was initially given Propanolol, a beta blocker to help with the excessive heart symptoms.  I was then put on 10 mg of Methimazole and my FT3 and FT4 stabilized right away in the middle of the range.  I could discontinue the Propranolol once I started on the Methimazole.  I had eye irritation symtpoms but not the bulging eyes.  What I have seen in this Board and other Graves Boards is that patients who take responsibility to learn all they can about their disease and how best to treat it working in partnership with their doctor are the ones who do the best.  A lot of Graves patients have deficiencies in carnitine, an amino acid that is normally found in the body but gets depleted in the muscles of Graves patients, vitamin D, and selenium.  The Carnitine levels can be confirmed by asking your doc to test you for a Free Carnitine and Total Carnitine.  The Vitamin D level can also be tested by blood tests.  I was deficient in both of these even though my thyroid blood test values were not extremely out of range with the exception of my TSH.  So I started supplementing with 1,000 mg of Vitamin D and initially 500 mg of L-Carnitine.  My TSH rose to 0.05.   Then I tried Acetyl-L-Carnitine 1,000 mg and my TSH went up to 0.70, only to fall again when I could not get any more due to the Canadian government banning it for a year.  When I take the Acetyl-L-Carnitine it drives my TSH up and my T3 and T4 down and I can lower my methimazole.  I had to test frequently, at least once a month and adjust my doses.  Diet is very important, avoid any foods with aspartame in it.  It sounds like you could benefit from Propranolol.  Do you have eye symptoms?  If so, it is worthwhile seeing a good ophthalmologist.  There are specialist ophthalmologists who deal with the eye symptoms of Graves as some patients develop bulging eyes and require surgery.  Please keep us posted on how you are doing.
  • tiswas24537
    tiswas24537 diane48831

    Posted

    not saying it is but its worth checking how much artifical sweetner your taking 

    your be surprized how much is in diet food and drinks and medincine

    and how ill it can make some people .very ill with all the symptoms of graves disease

    theres a very interesting case studies in a book called SWEET POSION cant remember the authors first name but the her last name was STARR .i lent it out and never got it back.

    theres two cases i remember well one was a child who had had everything test the hospital to give her and couldnt say what was wrong with her, mother was told just to take her home ,

    a friend told her about the sweetner Aspartumane and how bad it can be to some people ,removing this stuff from the childs diet saved her life, another woman was due to have her thyroid removed when she heard a simuliar story to hers on radio and checked out her cupboards once again she became well.

    so just take a look at your cupboard .

  • kathlav
    kathlav diane48831

    Posted

    HI Diane,

     was diagnosed about 2 1/2 years ago, and am trying for remission since July, as i also work in a school as a science technician, the summer holiday seemed the best time to stop my meds, as stress plays a big part with this disease and work has been very hectic lately.So far so good i my last TSH reading in September was 1.15 (0.3-5.0) so it is bang on the money.

    I have recently had some more bloods done and am awaiting results.When first diagnosed like you i had loads of symptoms.I thought at first i was going through the menopause, constant sweating, insomnia, wired like twitching, very hyper, cramps ,headaches, had lost my periods completly, and some eye problems like watering ,staring look ,some swelling heart palps high blood pressure, and i had lost about 2 stone in weight! YEY when my hands started shaking i had to go to the doctors i had already googled all the symptoms and actually suggested to the doctor i thought it was Graves, she agreed it could be and bloods confirmed TSH <0.01, ft4 61.5 (12-22).radioactive iodine scan confirmed graves.

    the day i got my results and phone call from the doctor i had broken my first ever bone in my elbow and was waiting to be seen in emergency clinic.

    a lot of the symptoms went away after going on propranolol, for instance the insomnia much improved , blood pressure and feeling wired, i was put on 20mg of propranolol and awaited my endo appt.getting enough sleep helped with the headaches.

    but the carbimazole did make me itch like crazy, as the dose reduced the itching got less and less. i think in the 2 1/2 years of being diagnosed i have had maybe 2 or 3 days off because of it, just lucky i guess!

    how long have you been on the carbimazole, and propranolol? it usually takes about four/six weeks for carb  to kick in properly but the propranolol should work quicker than that.i felt a lot better after about 3 weeks on  the beta blocker, but everyone is different and reacts differently to the meds. speak with your line manager about what you are going through, i found the whole dept very supportive. explain how it is effecting you and that you would like to reduce hours tempoarily untill you feel a bit better.

    this is unfortuately going to be a long haul thing, but may not effect you badly for too long , hopefully once your bloods stablise you will feel much better.

    wishing you well .

      ft4="" 61.5="" (12-22).radioactive="" iodine="" scan="" confirmed="" graves.="" the="" day="" i="" got="" my="" results="" and="" phone="" call="" from="" the="" doctor="" i="" had="" broken="" my="" first="" ever="" bone="" in="" my="" elbow="" and="" was="" waiting="" to="" be="" seen="" in="" emergency="" clinic.="" a="" lot="" of="" the="" symptoms went="" away="" after="" going="" on="" propranolol,="" for="" instance="" the="" insomnia="" much="" improved ,="" blood="" pressure="" and="" feeling="" wired,="" i="" was="" put="" on="" 20mg="" of="" propranolol="" and="" awaited="" my="" endo="" appt.getting="" enough="" sleep="" helped="" with="" the="" headaches.="" but="" the="" carbimazole="" did="" make="" me="" itch="" like="" crazy,="" as="" the="" dose="" reduced="" the="" itching="" got="" less="" and="" less.="" i="" think="" in="" the="" 2="" 1/2="" years="" of="" being="" diagnosed="" i="" have="" had="" maybe="" 2 or="" 3="" days="" off="" because="" of="" it,="" just="" lucky="" i="" guess!="" how="" long="" have="" you="" been="" on="" the="" carbimazole,="" and="" propranolol?="" it="" usually="" takes="" about="" four/six="" weeks="" for="" carb ="" to="" kick="" in="" properly="" but="" the="" propranolol="" should="" work="" quicker="" than="" that.i="" felt="" a="" lot="" better="" after="" about="" 3="" weeks="" on ="" the="" beta="" blocker,="" but="" everyone="" is="" different="" and="" reacts="" differently="" to="" the="" meds.="" speak="" with="" your="" line="" manager="" about="" what="" you="" are="" going="" through,="" i="" found="" the="" whole="" dept="" very="" supportive.="" explain="" how="" it="" is="" effecting="" you="" and="" that="" you="" would="" like="" to="" reduce="" hours="" tempoarily="" untill="" you="" feel="" a="" bit="" better.="" this="" is="" unfortuately="" going="" to="" be="" a="" long="" haul="" thing,="" but may="" not="" effect="" you="" badly="" for="" too="" long="" ,="" hopefully="" once="" your="" bloods="" stablise="" you="" will="" feel="" much="" better.="" wishing you="" well="" .="">

    the day i got my results and phone call from the doctor i had broken my first ever bone in my elbow and was waiting to be seen in emergency clinic.

    a lot of the symptoms went away after going on propranolol, for instance the insomnia much improved , blood pressure and feeling wired, i was put on 20mg of propranolol and awaited my endo appt.getting enough sleep helped with the headaches.

    but the carbimazole did make me itch like crazy, as the dose reduced the itching got less and less. i think in the 2 1/2 years of being diagnosed i have had maybe 2 or 3 days off because of it, just lucky i guess!

    how long have you been on the carbimazole, and propranolol? it usually takes about four/six weeks for carb  to kick in properly but the propranolol should work quicker than that.i felt a lot better after about 3 weeks on  the beta blocker, but everyone is different and reacts differently to the meds. speak with your line manager about what you are going through, i found the whole dept very supportive. explain how it is effecting you and that you would like to reduce hours tempoarily untill you feel a bit better.

    this is unfortuately going to be a long haul thing, but may not effect you badly for too long , hopefully once your bloods stablise you will feel much better.

    wishing you well .

     >

    • diane48831
      diane48831 kathlav

      Posted

      Everything you said was true to me too.  I was already on Atenelol to control blood pressure, but this did not help with my palpitations and racing heart, 130 bpm at rest.  I was initially put on 20 mg Carb by my GP when I was diagnosed with hyperthyroidism.  When I saw my Consultant 3 weeks later he increased my dose.  I am due to see my consultant on 20th November for an update to my results.  As I am teaching, I think it best to reduce my hours temporarily at this stage and just hope that sometime soon I will be feeling better.  Palps are worse at night, but not as bad as they were, but tremors and tiredness etc. still here.  Thank you so much for allowing me to "unload" frustrations, your advice is very much appreciated.
    • kathlav
      kathlav diane48831

      Posted

      Hi Diane,

      I think in your situation, with the best part of your working day being up front of a class,i would probably do the same.Dealing with classes of wonderful enquiring minds, when ones own mind is in a bit of a jumble could be very stressful, i forgot to mention that my memory took a bit of a bash, and finding words in a conversation very difficult!

      Yes, my palps were worse at night and a big problem with the insomnia was that i could actually hear my heart beating so loudly in my ears, and an almost swooshing sound which i could not escape.I would often wake up drenched with sweat.

      I tried Atenolol but found it did not touch my blood pressure, it may be worth trying Propranolol, unless you already have and not had any luck with it.I know you were already on Atenolol for existing high BP, but did your doctor ammend the dose when he/she realised you have Graves?

      It could just be that you need a temporary increase!

      If things dont improve , make sure you go back and see you Doctor(before your endo appt), unfortunately heart disease is a very real problem with Graves, and that should be a priority.Do you have your own BP monitor?might be worth getting one.

      I found propping myself up a little in bed helped slightly with the palps and deffinately not lying on my left side.

      feel free to off load anytime we all do it!! 

  • hypnocool
    hypnocool diane48831

    Posted

    give yourself a month of no strenous activities...give the meds some time to kick in.. feb 2014 i was diagnosed. march had side efffects of drugs.  got into low dose in april. April I was working out ....now I work out everyday... the dr put me on propanolol for the HR to go down...but i hated that med because it made me fat like a marsmallow.. lots of water inside me.... I stopped it after my HR calm down to say 80s at restingHR
  • Nisee
    Nisee diane48831

    Posted

    Hi Diane

    I'm waiting for a full diagnosis although the specialist seems convinced I have Graves Disease.

    FTF 55, FT3 31, TSH 0.06

    Been in and out of work for years because of symptoms.  In the last year I've only managaed 2 to 3 hours a day and that is a big struggle - I'm on a casual contract and currently have a month off work as I've been in hospital due to the latest onset of symptoms - high pulse rate (nearly 130) which has been increasing over the last 3 months.

    Basically on beta blockers and a drug to kill the overproduction of thyroxine.

    Doc says 12-18 months to bring it under control then a choice between radio active pill and full thyroidectomy.

    I'm reckoning (with the advice) it's going to be 2 years before I'm feeling really well again.

    My symptoms have been for 20 years since before a partial thyroidectomy (I was young then and never asked any questions, wish I had).

    Because my specialist says the radioactive pill has only a 50/50 rate of working (with most people needing meds anyway), I've already made my mind up and am going to ask for the full thyroid removal and have regular meds.  What's the point of getting better and getting ill again and needing more treatment?  I've had enough of illness.

    My first op was fine 20 years ago, I had no pain whatsoever after the op.

     

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