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Just diagnosed with Graves Disease, feeling alone and scared

Posted , 13 users are following.

claire64756
claire64756

I was diagnosed with GD yesterday after being referred to a specialist after strange blood test results by my GP.  The specialist has put me on 

40mg of Carbimazole for six weeks and then I have to go onto Thyroxine too and get checked again.  I am feeling so low, panicky and worried about the condition, the treatment and what my future will be.  The internet is full of horror stories but I need a bit of hope...  Any encouraging stories please because at the moment I cant stop crying.

2 likes, 31 replies

31 Replies

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  • hypnocool
    hypnocool claire64756

    Posted

    I have GD, now its under control and I'm OK... Now I workout and happy that I dont get tired a lot anymore.  I am  far from cured but the key is making it under control.  Some will get allergic reaction if over dosage like itchyness and stuff and it that happens just ask to lower dosage but if you dont get itchyness or allergic symptoms then keep taking prescribed dosage... I was diagnose in 2014 Feb... I am taking methimazole same as carbimazole.  Also Im taking brazil nuts or selemium for eyes so they wont bulge as much
    • claire64756
      claire64756 hypnocool

      Posted

      Hello, thank you so much for replying, I am in a pretty dark place at the moment emotionally and I know that I need to get positive to fight this thing.  I havent heard about the brazil nut thing or selemium, but my specialist has said that I already have slight swelling of the eyes so anything that you can advise to help would be great .... thank you
  • RossF
    RossF claire64756

    Posted

    Its like sitting exams - awful before and then you get to the actual exam... and afterwards it all fades and life continues. 

    You'll get this sorted and while it may mean an op or life time meds, you will be back to normal and will look back on this time as just a nasty moment !  I've been there, had a runaway thyroid, a few years of hassle - mostly before I was diagnosed - and then once the meds were spot on, I live an almost normal life. I was chainsawing logs yesterday and driving our truck so that's the effect it has had on me.  Yes I have to be a bit careful, but there is nothing I can't do that I did previously.

    ​Its all controlable,  but what I would say from experience is don't accept second best - if you have the right amount of the right meds for you, you can live a full life  - if you are not right, then its down to the meds and they can be changed to fine tune your system.Listen to your body and don't be afraid to pester the doctors until they do too.  I actually cut a 25 ug levothyroxin in half to get my correct daily dose, ( I don't have a thyroid so its a bit different  for me ) so its worth adjusting the dose for you.  Most  doctors just give you the approximate amount for your weight and that is nowhere near accurate - we are all different!

    ​I've posted a couple of times about how I take my thyroxine  - that may help in the longer term, but there are loads of people about with GD, no thyroids and all in between - can you tell by looking ? No. 

    So don't worry - yes its a hassle,  but you have a diagnosis - thats the first major hurdle  -  they can, and will  fix it. Enjoy the sympathy and attention while it lasts because you will soon be back to a relatively normal life !  :-)

    • Nonita
      Nonita RossF

      Posted

      Hi Rossf,You say that you don't have a thyroid.Have you had it removed?I only ask because my Doctor wants me to have RAI and I would prefer to have all or part of my thyroid removed and they don't seem very keen.I would really prefer to stay on carbimazole but I haven't come across anyone who has been on them long term..Sorry to tag onto someone else's post but I'm always looking for answers.Nonita
    • RossF
      RossF Nonita

      Posted

      No probs :-)

      ​Yes, I had mine out a couple of years ago after it went wild :-(  Carbimozole held it but I was taking more and more to stay in the same place and long term it isn;t good for you - from memory its an immune system issue and various other nasties.  In my case I stuck it for a couple of years hoping it would settle, it didn't and had to come out.  By the time it did I was feeling horrendous despite the carbimazole.  I also grew a benign lump on it the size of an orange ( to quote the surgeon - he wondered how I could breath and swallow but I din;t even  know it was there )

      ​My issue then was the docs didn;t tell me about how to take the levothyroxin - it needs to be first thing in the moring and with a NON MILK drink and no food for at least half an hour.  I was sloshing it down with a milky coffee and that virtually negated the absorbtion - so I spent the first year post operation year feeling awful and going to sleep all the time. 

      Within a day of taking it with water or squash before getting up in the morning , I was 99% OK.   A miracle cure :-)  !! Literally back to normal overnight.

      BUT

      I still run out of 'go' if I go into physical overdrive as there is no emergency reserve and taking an extra pill has no short term effect - it just puts you over the level in the medium term so the symptoms reappear . So you need to be aware of this.  I tend to get involved in some fairly exciting outdoor hobbies and a sudden exertion or huge surge in output of energy can poleaxe me a few hours later - not dangerously, I just get incredibly tired and the next day is usually spent feeling as if I've been up all night - tired and flat.

      ​HOWEVER

      the exact dose for me was critical to get correct - I take 162.5 ug a day - OK that's silly as you can't cut a 25 ug pill in half accurately, but 150  and I run down very gently and get tired, and 175 sees me get the over thyroxine symptoms coming back after a few days - shakes, jiggles, itches and dry skin etc etc .  As the pill in question is about 3mm diameter, it really is a critial level!

      So yes, if it won't settle after a year or so you have to weigh up the situation - generally you wont be worse on replacement pills than you are now if its a bad case, and once its gone at least you can get the right level and live life normally - unless you do silly things :-)

      ​Hope that helps.

      ​R

    • claire64756
      claire64756 RossF

      Posted

      Hello Ross thank you so much for your encouragement. I spent most of today in hospital with a sore throat which they wanted to check due to the meds but all ok...I guess it will just take a bit of time for me to calm down a bit but thanks for all of your tips.  I have found this to be a great site and I am positive and determined today that I will beat this quickly and get back to a normal life.
    • SlOUX
      SlOUX RossF

      Posted

      Ah, I've been sloshing mine down with a mouthfull of milk at any old time of day.... so looking forward to the expected improvement from tomorrow!

      Thanks.

    • RossF
      RossF SlOUX

      Posted

      The difference for me was absolutely incredible - please let us know if it was a fluke or works for you too !

      Hopefully the latter !

      Ross :-)

  • linda187
    linda187 claire64756

    Posted

    I had Graves diagnosed in 2007.  Today I am well and pretty much have normal results and no symptoms.  I got that way by being a very proactive patient, reading and researching all I could about this disease, as well as talking to many Graves patients, many of whom are keeping their thyroids and going into remission.  For those of us who are successful that way, we did not get that way by following doctors "orders".  What we learned was most docs even Endocrinologists know very little if anything about this disease and how best to treat it.  Many prescribe too high a dose of thyroid blocking meds to begin with, only want patients on it for a short period of time and push from the get go to radiate their patient's thryoids or remove them altogether and then prescribe hormone replacement.  The pharmaceutical companies make 1 billion dollars a year from prescriptions of levothyroxine and that is more motivation to keep the status quo rather than do what is in  patient's best interests.  Most of us had to be very strict with our docs about what we would or would not accept as treatment from them and that has not always been easy to do but is well worth it.  Many of us had to change doctors.  In my case, my initial Endo was pretty good but when my TSH would not rise after 2 years on 10 mg of Methimazole, she was making noises about Radiation and I quickly informed her that was not an option for me.  Then she left town as she got married and moved and the lady doc after her was a disaster.  Don't know how she ever got a license to practise medicine because she was pushing RAI to me even when all my thyroid values were normal - not an ounce of common sense did she have.  My next and current Endo did butt heads a few times but now I love him and I think he respects me as well.  We have worked together and I am currently normal in all my values, and taking 2.5 mg of Methimazole every other day with 500 mg of Regular L-Carnitine in the off days I am not taking Methimazole.  My results began to improve immensely when I did my research and found out hyperthyroid patients are deficient in a lot of vitamins, minerals and amino acids such as carnitine, vitamin D3 especially and magnesium.  When I incorporated the supplements along with my meds, my recovery really improved.
    • hypnocool
      hypnocool linda187

      Posted

      well said Linda.... I do agree with you RAI getting pushed a lot when they dont see numbers they like... What does this do 00 mg of Regular L-Carnitine?  Are your joints sometimes hurt? I workout but I noticed my joints hurt
    • linda187
      linda187 hypnocool

      Posted

      There was a research study done in Italy on hyperthyroid patients that showed that such patients lose carnitine, an amino acid from their muscles thru urination when they are running hyper.  They are also short on Vitamin D which is very important.  So after two years with no change in my TSH I took the Regular L-Carnitine and my TSH rose slightly and I began to feel much better.  I experimented with different kinds of carnitines and at times took two different kinds.  I took as much as 3,000 mg a day which was recommended by the study.  I stopped it totally for a while when my values were at the bottom of range and heading hypo.  Currently I am taking 500 mg of L-Carnitine on the days I do not take my 2.5 mg of Methimazole so that I will have more regular blood values on the days I do not take the Methimazole.  If I had just taken every other day Methimazole and did not add the Carnitine, I fear I would have times when I might get symptoms from hyper.  In my case, my adjustments to meds needs to be small.  When I first decreased my dose from 10 mg, my doc told me to take 5 mg and after two weeks, I was starting to get hyper symptoms again so I then took 7.5 mg for quite a while before I reduced to 5 mg.  By having slight adjustments, I do not get the kickback of hyper symptoms.
    • christine57219
      christine57219 linda187

      Posted

      Hi again Linda, have you seen a post I sent you regarding my October blood results and asking your opinion please?  I'm not doing too well at the moment  (since my GP stopped my B & R therapy and then thyroid went haywire and meds re-started).

      Christine

    • linda187
      linda187 christine57219

      Posted

      Christine,

      I did not receive your post.  Do you mean you sent me a private post?

      Linda

    • linda187
      linda187 christine57219

      Posted

      Hi Christine

      I just sent you a PM so you can hit reply and I will get your post. I did not receive it the first time you sent.

      Linda

    • claire64756
      claire64756 linda187

      Posted

      Thanks Linda, I am on a 40 mg dose of carbimazone a day at the moment but will be put on Thyroxide too at 6 weeks block and replace, my endo is lovely, a professor who is highly regarded here in the UK and did take time to talk me through all options and why he thought it best to rule the others out.  I am pretty tired all the time at the moment, constant yawning and not feeling like I am filling my lungs but this goes when I go to sleep ... guess it may be being caused by anxiety! I will have a look into those other supplements too thanks for your help and encouragement.
    • hypnocool
      hypnocool claire64756

      Posted

      I am  a bit confused... What is the purpose of taking carbimazole for hyperthyroid then take thyroxine for hypothyroid after?  I'm just trying to understand it. 
    • claire64756
      claire64756 hypnocool

      Posted

      Hi, its called block and replace method.  High dose of Carbimazole to start to get the levels back down  and they you continue on this at a lower level and add in Thyroxine to stop you going Hypo apparently ...
    • linda187
      linda187 hypnocool

      Posted

      Block and Replace is used in England but not in Canada or the U.S.  The theory is with Graves disease you are producing excessive thyroid hormone so with this method by giving a high dose of Carbimazole, they want to totally block the thyroid hormone your body is producing and replace it with a normal thyroid output by giving you hormone replacement at a dose that would produce a normal amount of thyroid hormone.  I have seen many postings on this and other Boards and I don't think it really works.  What you want to do with this disease as well as lower the excessive thyroid hormones being produced is to lower the antibodies and I have not seen that happen with patients who are on Block and replace.  I have seen it happen with patients who are on a more holistic journey with low dose of meds plus additional natural supplements and dietary changes.

       

    • christine57219
      christine57219 linda187

      Posted

      Hi Linda, this is the post I hoped you would see that I put on a couple of days ago:-

      Hi Linda, what do you make of these results - I know it's only TSH and FT4 (that's all they do).  I'm presently on 40 mgs Carbimazole and 100 micrograms Levothyroxine and feel cold most of the time (weather mild here at the moment but not to me), very tired and very anxious with pounding heart.  I see my Endo on 30th December.  Do I need more levothyroxine ?  These results are my October results.  Previous results from August and September are all either UNDER low reference limit and OVER low reference limit.

      Ocotber:-  TSH   6.42  (0.34 - 5.6)  "Above High Reference limit"

                        FT4  12.4   (7.5 - 21.1)

      Would be grateful for your thoughts please 

      Christine

    • linda187
      linda187 christine57219

      Posted

      Hi Christine, I thought I had responded to you by private email but perhaps not.  I am not familiar with Block and Replace therapy as they don't use it in Canada or the States.  I live in Canada.  Your results, however, indicate from the TSH that you are hypothyroid hence why you have cold hands and symptoms of hypo.  Your FT4 is fine though.  I saw a lady with similar results on another Board.  I really can't make recommendations as I said, I don't know Block and Replace, although I would contact your doc and tell him you are having symptoms of hypo and you do not want your TSH to be that high.  I think your meds need to be adjusted and he/she should advise you.  Personally, I don't like my TSH going over 2.5, I like it somewhere between 0.70 and 1.5. 
    • TSN
      TSN claire64756

      Posted

      Hi Claire,

      Who is your endo and I do not see many good one in UK. If you can share your endo and hospital then I will try to see if I can book him or not.

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