I'm so very fed up. New to the forum, but your seeing me at my worst 😭

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Hi

I have just joined this forum (and one other) looking for some positive vibes, and help to answer some of my questions.

I'm feeling so very depressed with my recent diagnosis of graves disease. I was doing OK, my levels were a little out of the normal range and had been for a year. I wasn't experiencing any graves symptoms other than the hot flushes here n there. I have however now started carbimazole 10mg daily...and now omg I'm totally regretting mentioning flushes to my doctor. I'm in so much pain, started off in my arms...muscle region but now my neck and shoulder joints are on fire...I could barely drive home tonight. Is this normal? I was meant to be at metafit tonight but have had to cancel....the pain regions seem to change too. Yesterday the pain was in my shoulder blade, left side today it's my right.

I also would like to ask re weight gain on carbimazole. Will continuing my exercise regime and maintaining a healthy diet stop any weight gain? I'm stressing about this bit of the journey.

My first endo appointment was doc giving me my diagnosis, asking about my symproms and gave me my prescription. No information was given other than call gp in instances of sore throat etc.

I'm so sorry this is very VERY long, I just don't know where to turn. My husband has fallen out with me cause "I'm constantly moaning about sore bits" and no one I know has ever heard of this.

Thank you for taking the time to read this.

From a very fed up Scots bairn

P.s - reading through this I do realise that I'm very fortunate to only have graves disease as I appreciate my health condition could be far worse.

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14 Replies

  • Posted

    Hi there.

    When I first got my diagnosis I went into depression and felt my whole life has changed. I cried everyday, but once I got on my meds i started to feel better, both mentally and physically. It took more than a month for symptoms to go away (my hot flashes took the longest). Hopefully your pain will subside soon.

    I didn't not gain any weight, just the ones I lost from graves and now back to my pre-graves normal weight and have been the same for the past year now.

    Just make sure u do blood tests regularly and not wait too long between visits otherwise the meds might work too well and make you feel hypo. That's another set of problems. This forum has helped me a lot and I feel I'm on my way to recovery (at least I hope).

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    • Posted

      I've tried to post this back to you, but I can't see my response...I'll try again, but apologies if you get this message a dozen times.

      Oh I could kiss you for replying, another being in the same vote as myself. Thank you xx

      I hope you don't mind me asking questions, or should I say interrogating you...lol.

      Did you suffer from pain? And if so how long did it last for?

      What medication were/are you on?

      The weight, you said you didn't gain. Did you watch what you were eating? I haven't lost any weight even before I started my meds.....but I have since put on a few pounds since starting them.

      It has also occurred to me I shouldn't be doing cardio, my endocrinologist never told me that.

      Och you know, right now I'm feeling sorry for myself and really down in the dumps.

      Sigh 😤

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    • Posted

      Hello sophannah,

      No worries. I was the same when I was first diagnosed. As a matter of fact, Linda here gave me really good advice including what supplements to take.

      I didnt notice any obvious muscle pains but I shook a lot (even my penmanship changed) and i suffered from excruciating headaches which eventually got better after being on meds. I take tapazole, same meds you're taking just a different name bc I'm in Canada.

      I didn't watch my diet whatsoever. Obviously I didn't go cray with junk lol but ate whatever I wanted moderately. Oh, and I rarely exercise (even though I should). I should say though, I've read that some ppl have reported they gained weight on anti-thyroid meds, I just gained back what I lost so can only speak about my own experience.

      Even though we weren't told we have a terminal illness but it's totally understandable that we would feel down, after all graves is a lifetime disease, BUT, with proper health care and change in lifestyle, you can totally lead a normal, happy life! You're definitely not alone.

      Good luck!

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  • Posted

    Hi Sophannah

    You are on the same dose I started on and stayed on for 2 years.  There are 3 thyroid tests that are usually done for both diagnosis and follow up of this disease, name TSH (Thryoid Stimulating Hormone), Free T3 (the active thyroid hormone in your body) and Free T4 (which converts to T3 for active hormone use in your body)  My Free T3 and T4 were about 10 points above the normal range when I was diagnosed.  For TSH, it is just the opposite - the lower the number (i.e. less than 0.001 in my case), the more hyperthyroid you are and the higher the number (e.g. 5.0) the more hypothyroid you are.  Always get and keep a copy of your tests.  In addition, to diagnose Graves and/or Hashimoto's disease, they do antibody testing.  So in my case my FT3 and FT4 quickly normalized but my TSH remained at less than 0.001 for 2 years until I added supplements like vitamin D, L-Carnitine, Acetyl-L-Carnitine and Magnesium especially.  Many Graves patients have muscle aches because they are Carnitine deficient and when this is added back, they feel better.  You can be tested for all these levels.  Carnitine is tested by Total Carnitine and Free Carnitine.  Please post your labs to this site along with the ranges for normal for each test.  We can better help you then.  I am going to privately email you a great resource for learning more about this disease.

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    • Posted

      Hi linda

      I may sound silly, but I take it the hospital will give me a print out of my results? I didn't think to ask and of course they never bothered to offer.

      My gp did do an antibodies test though, as she couldn't figure out what was going on. I'm sorry this isn't clear but if I remember correctly through out the year, one level was normal but the other was very slightly abnormal. ..hence the antI bodies test and a referral to endocrine.

      I called the hospital today as I'm struggling with these pains and I spoke with the secretary to try get myself an appointment sooner than July (my next one). But my doc is off on holiday for few weeks so won't get one before her return obviously.

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    • Posted

      Unfortunately most docs do not give you paper copies of lab results unless you ask for them.  They also don't give out brochures educating their patients.  I was very lucky to be able to form a healing partnership in my care with my Endocrinologist.  I think we initially had the usual doctor/patient relationship of "me expert you dumb patient", until he saw my results improve so dramatically and so quickly and I showed him what did it.  So I have always trusted him to decide on the meds dosage and I take care of the supplements.  He has changed for the better and I hope he is as positive with all his patients as he is now with me.

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    • Posted

      I don't know where you live but if you have any cardiac symptoms like palpitations or other signs of thyroid storm, go to the nearest Emergency Room.  These issues are very serious.  I was placed on a medication called a beta blocker while they were testomg to confirm my diagnosis.  That was to reduce my excessively high heart rate and help me relax.  Some people have to take both the thyroid blocking drug (Methimazole or Carbimazole) plus a beta blocker but I was able to stop mine once my diagnosis was confirmed and my treatment started.

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    • Posted

      I'm in scotland, UK.

      She did ask if I had palpitations, which I'm not going to lie had a few off but nothing I'd consider serious. To be honest I had very few symptoms but still it should maybe have been worth her saying all this to me, and given me a heads up as to what to expect. Time is precious now in hospitals, you get a 10 min slot to get bloods done, your diagnosis and shown the door. I really didn't have time to process anything. But I'm finding out now, these tablets have obviously woke up my sleeping levels and are playing havoc with them....and I'm the one suffering lol with these pains, by god it's sore and gritty eyes.

      I work in a&e and it was at work I had a hot flush, the consultant on that night was the one that told me I had to get my thyroids checked. Wish I had never listened to her!

      You know linda, I'm feeling so rubbish right now I feel like stopping the medication and putting my levels back to sleep! 😶

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    • Posted

      Hiya,

      Listen keep your chin up Mrs. I got diagnosed with hyperthyroidism 8weeks ago then told it was Graves 2 weeks ago over the phone as hospital wouldnt give my GP my results! My world crashed, I couldnt go to work, or any sports that kept me sane. This is a hard battle to start with but will get easier and it helps to find out as much as you can so to understand all the crap side effects of medication and your illness itself. I live in Scotland too. You can do this and come out the other end, just gotta have a lot of patience and give yourself time to get there. Keep in touch and take care D x

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    • Posted

      I would caution you to never stop medication abruptly and without medical guidance.  The more knowledgeable you become about this illness, the better you will feel and the more responsibility you will take for your wellness.  I did it and so did many others on this Board.  You can come out of this too and feel better.  
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  • Posted

    Hi Sophannah, while I haven't been diagnosed with Graves (we're not sure why my thiroid was out) I am now on 15mg carbimazole divided into 3 x 5mg doses a day. Since I started (was on 30mg) I have had mid thoracic pain for one week, pain in the ball of one foot for about 10 days (to the point I was limping ) neck pain, wrist pain and headaches. I asked my doctor if it was the meds but he didn't think it was, he thought it was pain from old injuries. Mind you I only told him about the neck and thoracic pain because I started to think it was just me getting old and my symptoms usually lasted one to two weeks and then improved. I did continue some mild workouts and looking back I wonder if they didn't stir things up. Doc also tested me for other auto immune diseases because of the aches and pains but nothing showed up. I too am a nurse (FLECC trained ie first line emergency care) and it was a doctor at work that tested me because he overheard me saying I thought I was having a mid life crisis or a nervous break down. I still don't know why I am getting the pains but it is better since I stopped my work outs. I have only put a small portion of the weight I lost initially back on so weight gain hasn't been an issue for me so far (I have been on meds since the beginning of March). I'm not sure if this post helps at all but if you find out anything I would be interested in knowing too.

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  • Posted

    Hey ... must be Scottish week on here

    That's where I hail from too Luvvie .

    .. just read your message and absolutely get it !

    I have Graves' disease but I'm now Euthyroid .. and so will you be soon ..

    Your first concern is to get paper copy if your results .. come back on here and you'll get the help you need to get started on your next step .. i.e. Getting well again

    As fur yiyr husband ... you will soon be able to tell him that you're not imagining it !

    And when you find out just what you've got you can share it with him and show him other people's sad stories of bad health.

    And how they beat it !

    Come back to us with results

    And take care .. don't stop the meds .. they're helping you control your body again

    And once you do that .. we'll tell you how to get yourself better

    Luv mx🌹

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  • Posted

    Oh sorry .. forgot to answer the question about your pain !

    I thought I was dying with Pain .. in my arm

    Muscles shoulders and neck, Feet , calves and thighs particularly

    And guess what ?

    It's gone now !

    Festino Lente .... which is Latin .. meaning Hurry ... Slowly !

    I.e. Take it easy .. all will be revealed .. in time ... and you WILL become better .

    Luv mx🌹

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  • Posted

    Hi Sophannah, I was very very poorly with Graves and on 40mg of carb and 100mg levothyroxine for 18 months - was signed off for 9 months.  I had every side effect going and thought there was no hope, my life was over.  I was pleased when I finally got my diagnosis as eveything was falling apart - I could no longer do my job, cope with anything and significant relationships broke down as my anxiety and anger just increased - so unlike me. I was a zombie who could just about manage to cook a meal, everything was a huge struggle. They wanted to remove my thyroid but I was adamant I didn;t want that.   The good news is I am brilliant again!! I left a stressful job and changed my lifestyle to allow me to recover, also was giving citalopram.  Everyday I feel better - I am now back to juggling lots of things, smiling, I can talk on the phone again, can see people.  I am so grateful to be well and enjoy life as much as possible.  I also have 2 friends who had Graves doing brilliantly.  It is very treatable so try and relax, rest (one lady on here said just do one thing a day, don;t over do it, your body is telling you to rest and slow down), my consultant said keep to a protein diet to reduce gluclose increase of carbohydrates.  I did lose 2 stone rapidly but it is back on unfortunately!  I do need to lose weight, but I am only as fat as I would have been anyway!  Good luck, take your tablets, ignore your husband - mine says "you've been ill since I met you"!  I always complain about something. xxx

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