Just diagnosed. What should I ask my doctor?

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Hi, I’m new here. I was just diagnosed with Graves and hyperthyroidism. I see a lot of posts about other deficiencies (vitamin d, etc.) and also talk about taking other supplements. I will be meeting with my endocrinologist this week to talk about next steps (medication or iodine). I just wanted to know if anyone had any suggestions on what else I should talk to my doctor about. 

My symptoms are pretty miserable: trembling, rapid heart and chest tightness/pain (I’m on atenolol for this), breathless, I get hoars easily, pain and pressure in my eyes...

But I guess that’s probably not new to anyone. 

Thanks for your help. 

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  • Posted

    Make sure you have a doctor who gets in contact with you when you need them to. This is a really scary thing to go through...ask about how long your medications are going to take to make you feel better. I know all medications and people are different. In all, just read up as much as you can and really educate yourself on Graves Disease. Also, while you're waiting for your levels to come down, really pay attention to your body. Don't hesitate to call your doctor or go to the ER if you feel really off. I waited and waited one time, and wound up in the hospital because I just kept thinking I'd feel better if I just rested some more. I'm not saying any of this to scare you...I just wish I had had someone to tell me this stuff back when I was diagnosed. Best of luck and keep us posted.

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  • Posted

    If you have straight forward Graves’ disease ... with no Nodules or any goiter or cancer issues .. then you may well be able to get better soon..  

    thst will entail your Endocrinologist  putting you on a course of Carbimazole  to lower the Thyroid Hormone That you are over producing !

    I started st 20mg per day  then  down  to 10mg ... and then down to 5mg per day 

    I still felt HYPER ..  but I was assured if  I continued I’d become HYPOthyroid ...  

    He was right !!!

    It takes quite a while fir that hormone to die down in your system  .... but it does !

    After that ... it’s a case of supplementing to feed your Immune System  and to get it to calm down and leave your poor athyroud alone ...  after all it’s not your Thyroid Gland  that’s causing the trouble .... it’s a faulty Imunne System  that’s the Culprit .

    .... and it’s been emptying of all it’s very vital vitamins,  minerals and nutrients  for most likely a long time .. whilst you’ve been suffering these horrible symptoms thst we all know do very well .

    Tell you’re Endo .. that you would like him or your GP  to arrange full vitamin  blood testing !

    So that you know what you are deficient in !

    That will get you started

    Most of   US  are low or very low in  B12  

    Magnesium  

     D3 

    As well as A few others that are most vital to rebuild the Immune  System...

    If you’re interested I’ll let you know which to take 

    You can of course go down the route  of  Radio Active Iodine 

    Or even Surgery to destroy it remove your Thyroid Gland 

    But those two options would be considered non reversible and both lead to Eventual HYPOthyroidism  

    Personally having witnessed many family members never getting that right ...because of neglect and being wrongly medicated .... I would never have chosen  RAI or Surgery 

    But that is my view and also the view if many in here who have become well again..

    If you would like to print out the results of your last blood tests including printung out the  numbers in brackets .. which are your lab ranges and very important to see where you are  on the scale  then do siband we can help.

    Your blood results are ... yours and your GP  is obliged to provide you with them !!!

    I am Euthyroid now and have stayed that way for almost  2 years  and I can tell you it’s winderful to feel well again

    After having had such a debilitating illness ...

    I wish you the very best of Luck

    Luv mx🌹

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  • Posted

    Hi Heather,

    I can understand how frightening these symptoms can be.  Learning all you can about your disease will help to lessen your fear.  Most doctors will try medication first to lower the excessive thyroid hormone in your system.  If all your thyroid tests do not normalize once you have taken this for a while, they usually then prescribe Radioactive Iodine ablation or thyroid surgery.  For myself and many others, the medication did lower the excessive thyroid hormone level, however did not raise my TSH level.  TSH receptors in the pituitary is what the Graves antibodies attack thereby giving the body an incorrect message to release too much thyroid. While I felt better when my Free T3 and Free T4 levels normalized, the fact that my TSH level would not rise after 2 years on medication concerned me so I did some research and as a result of this research, I added Regular L-Carnitine, 3,000 mg to my meds schedule.  Took all my supplements at the same time I took meds.  I asked my boss, who is a genetic metabolic specialist and uses Carnitine for some diseases he treats about this and he said, "well it won't hurt you".  When I added this, my TSH rose to 0.12 for the first time in two years.  I did get tested for my carnitine levels before I took it because I wanted to see where my levels were at when I started and I was deficient.  I suspect most hyperthyroid patients must be deficient because when our metabolism runs that fast, we lose a lot of vitamins, minerals and amino acids from our bodies.  I next found out I was deficient in Vitamin D and added that 1,000 IU per day as well as Magnesium 200 mg to my schedule.  I then experimented with different types of carnitines and added 1,000 mg of Acetyl-L-carnitine and my TSH just shot right up into the normal range.  This required a lot of adjusting on my part of supplements dosages and I let my Endo adjust my meds dosage as my levels improved. Most doctors will not know about these supplements and had I not done this, I know my TSH would not have normalized.  After doing this and normalizing my levels my Endo told me my antibodies were now undetectable.  I am on a very low dose of meds, 2.5 mg 3 or 4 times a week and I only take the carnitines if my TSH levels begin to fall.  Otherwise I feel pretty good and I would have no problem if I had to take this forever.  When I was going through the testing to arrive at the diagnosis, my Endo put me on Propranolol to lower the heart rate which helped.  Once I started on meds, I only needed this occasionally.  I think you should ask your Endo to refer you to an ocular specialist who treats Graves eye disease to keep a close eye on this.  Also, as mentioned, always get and keep a copy of your lab reports.  Please keep us posted on your progress.

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  • Posted

    Welcome,

    ?I was so scared and confused when first diagnosed. My endocrinologist made everything sound to hopeless with the only solution being iodine or surgery.  The most annoying symptoms I had were the heart beat in my ears and rapid heart rate and feeling hot all the time.  Other than that, I was ok.  Most of it I attributed to menopause, as I am 53 year old female.  I was happy to learn that this web site and many others offer other solutions to include heavy metal detoxification, supplements, auto immune diets etc as ways to minimize my symptoms.  I have done all of the above over the last 4 months and have reduced my meds to 7.5mg tapazole per day and my T3, T4, and TSH are in the 'normal' ranges now.  No symptoms at all other than feeling hot sometimes.  My endo thinks I am a bit nuts...but she is allowing me to do my best to get this under control with the help of people on pages like this.  Good luck.  Keep an open mind.

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  • Posted

    Wow thanks everyone for your suggestions and support. I do have a small nodule but they haven’t been too concerned with it. I’ll ask my doctors about getting some blood work to check for vitamin deficiencies. And look into the other suggestions you guys have given. 

    I have a very high stress job with long hours, which is making this situation pretty difficult to manage. The job ends in about 6 months, but that seems a long way off right now. I hope the medication is able to give me some relief. How long did the medication take to work for you?  We’re you able to keep working full time?

    Ashley, if you don’t mind me asking. What landed you in the hospital? Feel free to private message me if that’s better. If you’re not comfortable talking about it that’s fine too. 

    Thanks everyone!

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    • Posted

      Heather I’m very surprised you’re able to hold down such a high stress job ....Graves is pretty scarey at its worst .

      I could not function well at all and lost all body and a lot of head hair.

      Tremors and choking were even more stressful and brain fog was 

      Leading me to think I was going insane ... many poor souls 100 years ago or even less have been locked up for having one Thyroid disease or another ..  now it’s an easier process .. and that’s because we’ve learned so much about the thyroid and the huge part it has to play within our bodies ... that is why , if it’s possible at all,  the best idea

      Would Be To keep it  ..... And learn how Graves’ disease affect us.

      Around 80% or more of our immune system is found within our Gut ... and it is becoming more generally considered that there is where we should begin to

      treat it .... from within the Gut.

      Discount nothing until you have 

      Many opinions and have done much research ... it is better than making a very rash decision  that you may regret later.

      I wish you well..

      Luv mx🌹

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  • Posted

    To honest, I really hope I can get some symptom relief soon. Even with atelol my heart is really pounding when I have any exertion (walking, stress, etc.) and I keep getting breathless and Practically losing my voice in meetings. 
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    • Posted

      Yes .. I know the voice thing .. and believe me the stress too .. I told my Endo    .. I feel like a car going downhill  at a hundred miles an 

      Hour ..... with  NO BRAKES ... and all I can think of , in the world ,   Is how to control this car !

      That pretty much summed up what I was feeling like . By the time I was diagnosed I was on the verge of Thyroid Storm .

      That’s why I bought the 

      Bugleweed

      Motherwort  and 

       Lemon Balm  ( Melissa ) 

      Don’t undeeestimate the power of these wonderful herbs 

      GOOGLE each one of them like this ....

      Bugleweed / Graves 

      To get full info in each and  the relation to Graves..

      Good luck

      Love mX🌹

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  • Posted

    I had my endo appointment.

    Here are my numbers:

    A month ago = TSH .01 (ref range .4-4.5), TRAB 26 < OR 16% inhibition (not sure what that means - I believe it's the test for Graves but I don't know what the numbers mean).  Does anyone know?

    At that time I was still on Levothyroxine.  Years ago my thyroid was low, they diagnosed me with Hashimotos and put me on Levo. For the last year it's been going up, leveling, going up and so on. Finally I saw an Endo and that doc was able to get me the correct diagnosis.

    This last test, with no Levothyroxine my TSH was .01 (same reference ranges). 

    the doctor put me on 10 MG Methimazole 3 x a day and I have another appointment in a month.

    The doctor wasn't interested in hearing about other things (like doing a vitamin panel, or taking supplements), but I think that once my symptoms calm down a bit I can get my general doctor to do the vitamin panel and I can research and start taking supplements to help myself.  Right now, I'm just grateful I found a doctor that figured out what was wrong and is acting. I just started the meds today.

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    • Posted

      From what I have seen of Hashimoto patient's postings to this and other thyroid boards, prescribed meds either Methimazole or Levothyroxine are too strong for Hashimoto patients and they will bounce back and forth from hyper to hypo and back to hyper again on the prescribed meds.  They do better being regulated by Regular L-Carnitine.  There was a poster to this Board, her name was Linnet and she was able to regulate her values by taking her temperature daily and taking Regular L-Carnitine.  You may find her postings if you search for them.

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    • Posted

      Thanks Linda, That's good to know.

      My endo thinks I was misdiagnosed with Hashi and that I've probably had Graves all along.  I know other doctors and articles that I have read that say you can have Hashi and Graves at the same time.  I know that I have the anti-bodies for both - not sure if that means I have both though, I'm still trying to understand that. The other patients that were posting, did they just have Hashi or did they have both?

      Thanks!

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    • Posted

      I know a lady on another Board who had both.  The lady on this Board just had Hashi's.  The lady with both treated with natural means by a Naturopath.  You need to post your results of your antibodies along with the ranges for each test to know if you have both.  It's a good idea to post all your thyroid lab test results.

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    • Posted

      Hi new to forum I've suffered for 9 years been on and off carbizamole for this time been off meds since last April but just not felt right had bloods done and antibodies have gone up to 45,7 so I'm hoping to speak with endio this week it's an awful illness takes your life over x

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    • Posted

      Brenda..  youve arrived right at the end of another thread and may not get noticed there ... as there was already an ongoing discussion

      so ... it would be better if you could start a new discussion and a new title to draw attention to your problem and get the necessary help !

      Good luck

      Mx🌹

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