just been diagnosed hyper

I have been reading the blogs on here for a few weeks as have recently been diagnosed with overactive thyhroid. My TSH was 0.01 and T4 (I think) just under 55. Not sure what

these actually mean. Was suffering badly with the tremors so doctor put me on Carbimazole which I have now been taking for nearly 3 weeks while I wait for Endo app at end of month. Also take Antenolol at night when heart is pounding too much for me to sleep. Have other symtpons, muscle weakeness and ache. Hair which was already fine and thin is now falling out. Also have a Goitre which was scanned on Friday. It looks like a very large Adams Apple at the moment and I look like I have a very fat neck!

Can anyone advise me what I may expect at Endo appointment.

14 Replies

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  • Hi there snow31 & welcome to the forum.

    I just wanted to respond although I can't really give you an answer, as I have not seen an Endo and am not hyper (although I think I was hyper before my nodule was removed and still get some horrid hyper palps).

    You will find that many of us here are Hypo (even though some were hyper then eventually had RAI or surgery due to Graves or nodules). Have you looked around the main site? there's some info about newly diagnosed hyper at the bottom of this page (again sorry - it's mostly Hypo!) thyroiduk.org.uk/tuk/diagno...

    blood tests explained here..

    thyroiduk.org.uk/tuk/testin...

    (or you can search for specific words here in the Search box or tags)

    Have you had antibodies tested? Mine were raised and they weren't sure if it was Hashimotos or Graves. You may expect to have an ultrasound and FNA on the goiter. Meanwhile you could also get tested for irons, ferritin, folate, B12 and Vitamin D - to rule out any deficiencies).

    I hope someone knowledgeable about being officially hyper will chip in to help you, I hope you are feeling better on the Carbimazole, some find it helps for years I believe. Jane :D

  • I too have Graves. Was diagnosed last May. I was lucky because my doctor spoke to my endo and got advice from him before my visit. Once I had my visit to the endo he arranges 6 week blood tests and the results go to him. He then contacts my doc if there is a change with my medication. I then see him every 5 months. The problem is everyone is different. Some react differently to the medication. Also different endos treat differently. Write down all your symptoms before you go because if you are like me l forget what l wanted to say until l come out of the consulting room!

  • Hi Tory, cheers for replying, this is all a new world to me so I really don't know where to start. As I have an enlarged gland does that mean I have Graves? My Doc has been fantastic and have first appointment with Endo on 23rd. I am waiting for further blood tests to come back but not too sure what they all were. I am taking Carbimazole 5mg 3 times a day and that seems to have stopped my shakes but as you say people have different symptons.

    I ache and muscles are weakish (but they may also be down to my allergy against exercise)!! I am losing my hair which is distressing as don't have a lot to start with.

    My eyes are swollen, look like I have been crying and my heart pounds.

    What meds are you on and have you seen a good improvement.

    Will wait and see what Endo does next week for next step. Keep well.

    Cheers - Snow

  • Hi Jane.

    many thanks for your input. I can't seem to find a lot about Hyper but will look at the threads as you suggest. This has happened all so quickly and only results of Thyroid were done originally. I have had some other ones but I am not quite sure what they were for but folate rings a bell. Last year I was told I had a Vit B12 deficiency so I was taking that (but naughtily only when I remembered).

    As I have the swelling of the gland does that mean I have Graves or could that be just part of it overactive?? I have had a scan on it and there are no large nodules but he said I may have to be scanned on regular basis to keep eye on it.

    The Carbimazole has helped with the tremors (which were really bad) so at least I have a bt more control with putting sugar in my tea now!! Heart is still pounding but have now stopped the Antenolol at night so hopefully that is calming down.

    Will look round site and many thanks again - hope you keep well.

    Snow

  • Hi Snow. I have Graves/hyper and have been on carbimazole for 2 years. I have had all the problems you mentioned and to be honest some of them have improved, some have gone and some new ones moved in to take their place.

    Some of the common issues are palpitations, tremors/hand shakes, weight gain/loss, hot sweats, panic attacks, dry/sore eyes, swollen/puffy eyes. dry skin/oily skin, hair thinning, acne, reddening of the legs and or water retention, swollen neck/goitre, diarrhea, insomnia, hyper behaviour, antisocial behaviour, mild agoraphobia, aggression, rage or mild depression to name but afew.

    Your T4 is way too high and needs to be down to 12 - 20 ish. Your TSH needs to be around 1 ish although everyone is different.

    You are on carbimazole and I am guessing betablockers. Those are the only meds except for one other that I cant spell (PPU). There are no other choices except for RAI or surgery. You will usually be on carb for 12 - 24 months and then slowly taken off them. Some people are put on block and replace which is where you are put on carb plus levothyroxine ( which is what hypo people take).

    When you see your endo you may well feel let down. Do take a friend or partner and a list of questions. Write down the answers. Ask for a scan of your neck to rule out nodules and a blood test for antibodies to rule in or out Graves or hashimotos.

    This is not an illness that many people manage to totally recover from without RAI or surgery. It is most likely an autoimmune condition and so you may want to research it.

    Any questions feel free to ask. All the best and good luck.

    Bev

  • Hi Bev, Thank you so much for your message - I have found it hard to find someone with Hyper.

    I do not know if I have Graves yet. Though my thyroid is swollen so not sure if that is a definate sign of just part of overactivity. Scan man said there was nothing too significant from scan but suggested regular scanning

    My doc gave me Carbimazole (5mg 3 times a day) as tremors were really bad while waiting for Endo appt. They have helped them so thats a relief. I take Antenolol at night when pounding is too much for me to fall asleep but am thinking of taking them everynight again as my sleeping is now really disturb.

    There are a lot of symptons that go with this and it is hard getting my head around it all and thinking if they are part of menopause (im nearly 47).

    I will write a list down for Endo appt but not looking forward to it after hearing people saying that they are not very supportive or understanding.

    My jaw has been in constant pain for a week now and was just wondering if this is side effect of meds/condition or something. Had a check up last week and dentist said all was fine and its only now Im wondering if its part of this.

    Will have to search more into this. Thank you for your info it is much appreciated. I hope it sorts itself out for you. kindest regards take care

    Snow

  • Hi all, Can you help?? had a call from my Doc yesterday. Blood tests back, vit b12 was ok as was Folate which was good but Thyroid Antibodies tested positive. Could anyone please tell me what this now means. As with my symptons does it mean I have Graves Disease?

    I am having blood tests on Monday as my mouth/gums/bones have really ached the last week. She doesnt think its a reaction to Carbimazole but strange this has happened. Throat

    doesn't feel right but it doesn't have ulcers which is a good sign considering side effect of tabs.

    Thanks for reading.

    Snow

  • Hi Snow31, after 9 months of carbimazole I finally have it in writing that I have graves! Your jaw/teeth/neck/gums could simply be sore from clenching your jaw in your sleep. This has happened to me many times, particularly before and just after diagnosis. Its a really stressful time when you know something is wrong and are not sure just what :-) I'm also a tooth grinder which doesn't help when I'm stressed. And since getting a stress-free job (at long last) I no longer have mouth ulcers. I'm an implosive person which is what I think may have triggered my graves, or at least exasperated it.

  • Sounds like Graves to me. Ive had it for 12 years treated with Methimazole. Recently had a flair with racing heart, anxiety, phobias, etc. But increase of meda and doing better. You will probably go on the meda for a year and then re evauluate your condition and see if you want rai or surgery, but the choice is always yours, like me who decided on methimazole.

    Best of luck

  • Hi. I have had Graves for 2 years and am being badgered by my endo to have RAI (radioactive Iodine) but I have so far refused much to his annoyance. I have been on carbimazole, varying quantities for the 2 years and if it feel bad I take more and twice the symptoms have disappeared for 4-5 months so i've taken a very low maintenance dose. I went to see Dr P, who has written books about thyroid disorders, and he told me it wasn't damaging my health as long as I take the carb when i need it. i have decided I would rather live with Graves than have RAI or surgery and inevitably become under active. I take high dose Viviscal for the hair loss which is expensive but effective. Once you are on the correct dose of meds your symptoms will improve, my advice is don't make any rash decisions without doing thorough research and keep positive :)

  • Hi Granitecitygirl, skimordiegirl & jes99

    Many thanks for replying. Oh gosh I thought it sounded like Graves too. Gums/bones are still hurting but nothing I can do. Though not sure if I grind/clench at night but could be part of it. I am having another blood test on Monday and then first Endo appt on Thursday. Will write down all my symptons and really don't know what else to ask as seems not a lot they can do other than meds/rai/surgery. So will let you all know what is said.

    Thanks to you all for your support - Never realised the effect one gland can do!!!

    Keep well everyone on this site.

    Snow

  • Hi snow,

    I was diagnosed with Graves last year. It sounds like you have Graves. I also had a bad tooth ache before I was diagnosed (went to the dentist, but she couldn't find anything), but it went away when I started the carbimazole. I also had severe headaches, so I thought the tooth ache was maybe part of that.

    One thing: if you have puffy eyes, please make sure you get referred to an ophthalmologist!! Very important! Graves is the underlying autoimmune disease that causes an overactive thyroid and TED (Thyroid Eye Disease), but these two things run their separate course. Make sure you see a specialist for your eyes!!

    The muscle weakness should get better in a couple of weeks. Take plenty of rest. I've been there, it's hard, but you'll feel better soon.

    Also, ask your doctor if you don't understand results. They have to explain you everything, it's only normal that you have questions.

    All the best!

  • Hi Misky, Thanks for replying. It is all very scary. The top lids of my eyes are very puffy so I will definately ask on Thursday. Def look like I have been crying. Tho under eyes are all sunken and look like I havent slept for weeks!! Gosh I thought being 46 and being menopausal was enough to go through!!

    Can anyone help?? I have had the results of antibodies blood back. Doc says should be no more than 50 and mine is 102 - so definately an Auto Immune Disease. Is this correct and if so how high is this??

    I have started my list of symptons (feel like a hypochondriac) and not really sure on questions to ask.

    The Carbimazole has helped my shakes a lot (still have bouts of it). Had to take Beta-blocker last night as heart was pounding and I couldn't get to sleep.

    Big hugs to everyone on this site.

    Snowx

  • Well today is Consultant day. Not sure what to expect so if anyone can tell me I would appreciate it..

    Does anyone understand the Antibodies test results - should be under 50 and mine was 102

    Thanks

    Snow

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