Hi, I have an appointment with the endocrinologist coming up in a month. What questions do I need to ask? I have recently been diagnosed with Graves/Hashimoto's and am very confused about my diagnosis. I was told I was hyper in January, they put me on methimazole and last month I was told to stop taking it because they had over medicated me and I am now Hypo. I was referred to an endocrinologist for further treatment. Any suggestions are welcome! Thank you in advance!!
Thanks for writing in Alyssa. Let’s hope you hear this before your appointment.
Graves is the autoimmune condition where your body will make antibodies against the receptor for thyroid stimulating hormone (aka thyrotropin or TSH- it is made in the pituitary gland and tells your thyroid gland to make T4 or thyroixine and T3—the big metabolism stimulator). The TSI or thyroid stimulating immunoglobulin antibody will help diagnose Graves as well.
In this disease you can also make antibodies to T3 and T4 causing a hyper thyroid state. Anti-TPO antibodies can also be a sign of Graves though they are often tested for Hashimoto’s.
You actually may have both Hashimoto’s which leads to hypothyroidism or a slow thyroid and Graves disease or hyperthyroidism which leads to an overactive thyroid. You may swing between the two and feel like crap. Finding a doctor to treat your symptoms is ideal when it comes to how much medication you might need.
Symptoms of Graves disease include things like:
sensitivity to heat
weight loss without diet changes
Treatment for Graves includes methimazole which is known as an antithyroid drug. It basically stops the thyroid gland from making too much T4. Before pharmaceutical drugs were created for this, Fluoride was the treatment to slow down the thyroid.
Side effects of this drug are numerous but include hair loss, headache, toxicity to your liver, muscle or joint pain, nausea, changes in skin pigmentation and more.
I think the biggest concern with this drug is the damage it can do to the liver.
Another treatment option for hyperthyroid or graves and even Hashimoto’s is to use Radioactive iodine which results in killing off the thyroid gland by the radioactive iodine. The thyroid gland is a big consumer of iodine and so if you give it radioactive iodine it will destroy the tissue making you hypothyroid for life.
Let’s talk about the diagnosis of hypothyroidism after the methimazole. This drug keeps the iodine and peroxidase from having their biological interactions with thyroglobulin to make T4 and T3 which will chemically slow down thyroid hormone production.
If you are dealing with Graves disease the best thing you can do is immediate diet changes to stop the autoimmune attack.
Remove gluten and dairy and then go on some form of elimination diet for at least a month with three months really being optimal.
Elimination diets will remove all the big allergens or triggers for the body. It will include removing eggs, nightshades, beans/legumes, nuts, seeds, sugar, alcohol, all grains and of course all dairy. The stricter elimination diets like the autoimmune protocol also remove chocolate or cocao, coffee and all spices made from night shades including vanilla which is a bean.
After eliminating these foods for the suggested three months you can begin to reintroduce them one at a time waiting 4 days in between reintroductions to be sure you don’t react to it. It is often suggested the reintroductions start with a teaspoon of a food and then if no reaction after a short time period you add more and more of the food gradually throughout the day checking for reactions as you go. Then wait four days before reintroducing another food.
There is an introduction schedule that shows how to reintroduce foods and which foods to reintroduce which you can easily find by googling AIP diet and AIP re-intro foods list. I use this diet with my autoimmune clients when they are ready to make the commitment because it is a huge commitment to do this diet.
It is a lot of cooking from scratch and a lot of dishes to wash and it really never ends. Even if you are able to reintroduce many foods yet you still need to eat really clean. I’m not going to lie. For me, it gets old to have to cook all the time. I don’t like fish so that is one whole group of food that I don’t eat that would make it much more convenient to eat on the go. Eating a can of salmon or tuna or even sardines would make my life easier on the go but I can’t stand fish of any kind and I cannot bring myself to eat organ meats which are highly recommended on AIP.
So anyway, you do the best you can and you eat clean and cook your food and really stick with it and you will feel better.
Let’s talk about going to the doctor’s office and specifically the endocrinologist. They are a little harder to work with. My endocrinologist was zero help to me- he didn’t know I had autoimmune disease and didn’t bother to check. Is this his fault?
I was still really angry for a long time over this because my baby died in a thyroid storm and no one knew what to do for me. His death could have been prevented so I was angry. I still get tiny bouts of anger over it, especially when I read more and learn more about the thyroid and how my diet could have prevented a bunch of problems for me and my family over the years. The important thing is not to hang on to the anger. I have to let it go or it would consume me and that does no one any good.
So - the doctor.
They are taught to find the correct or right answer all through their schooling.
They are taught about synthetic thyroid hormone replacement like Synthroid.
They are taught to not question the norm or status quo. They are taught to conform in order to do well in school.
They spend countless hours having to memorize what they have read or been lectured on so they can have the right answer which means they are a worthy medical student, doctor and professional person.
We look at doctors as all knowing. We forget they are in a medical practice. Practice means they don’t have all the answers but we expect them to have all the answers. So, do you think they would want to admit they are wrong about something they studied for 4-6 years or more?
We expect doctors to tell us how to feel better yet we are not willing to listen to our own body which innately wants you to be in balance and healthy.
Doctors cannot and do not know everything and that is okay. They do have faith in their education and in what their textbooks and class materials are telling them. An endocrinologist should be more familiar with the workings of the thyroid than a family practice doctor, you would think.
If they see the same thing coming through their door every week and the treatment isn’t working, you would hope they are wondering why. Maybe they are but they have to remain with the status quo and conform to what the medical board says or they risk losing their license.
It seems that the doctor who has suffered the condition you are there to see him or her about is way more sympathetic to your symptoms than a doctor who has not had to deal with it.
We all would love to have a doctor that can admit they don’t know it all about our condition and that they want to hear what our symptoms are and how they can help alleviate those symptoms. Sometimes that is what the functional or holistic nutritionists job is because food is medicine and I am a living example of recovering my health through diet and lifestyle changes.
But you are in your doctors office asking for natural thyroid hormone instead of synthroid because you feel like crap and you think this will help you. But maybe you have only read a couple books that suggested this. So, is your doctor who has spent years training for their job just supposed to listen to you? This can be hard form them and while I think they should listen, just think about it from their end.
They have to worry about answering to their boss and the rules of the clinic, worry about getting sued, they don’t have enough time to sit down with you to really understand what is going on and their protocol is synthetic thyroid hormone or methimazole or radio active iodine treatment.
Your endocrinologist probably got in to their line of work because they wanted to help people. Believe that they really do.
They don’t want to be challenged by their patients and may not understand how to treat your condition without what they consider the gold standard.
It is not unlike my own nutrition practice where I know very well how to help people with autoimmune disease because I have spent countless hours studying this topic. But if you came to me with say, SIBO or Colitis- I could help you to some degree but I have less knowledge about those two very specific conditions than I do autoimmune thyroid disease so I would refer you out to someone who works specifically with that condition.
How can you be ready for your endocrinologist visit?
Be prepared but don’t inundate your Doctor with too much information. Write a list of your symptoms to give him or her. Let them know what your goal is for the visit and have a short list of questions. So for you it might include getting an explanation of how you became hypo from hyper and getting a full thyroid panel including TPO, TgAB and TSI, TSH, Free T3, Free T4. These are the biggies.
Have a complete list of every medication and supplement you are taking at the time of the visit. Include the name of it, the dosage and what form you take it in like capsule or drop, etc.
Take notes or bring someone along with you to take notes so you can remember everything.
Don’t trash talk other doctors you have seen. This will not serve anyone in the end. It may put your current doctor on the defensive.
Try not to cry on your visit. This is overwhelming to the doctor.
When you are done with your appointment ask yourself this:
Can you work with this new doctor?
Do you feel comfortable with them?
Did you feel listened to?
Will they agree to work with your symptoms and adjust your dose accordingly?
Good luck Alyssa. I hope your visit goes well.
That is it for me. You can find me at Help For Hashimoto’s dot com. You can sign up for my newsletter on my site- on the left side bar there is a little sign up form. I am told that needs to be more prominent.
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If you are looking for help with your thyroid condition, use the contact form on my website and we can chat to see if we are a good fit for working together. I’m here to help. Until next week.