Just diagnosed. What should I ask my doctor?

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.

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🌹

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.

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.

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!

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. 

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.