I went to the endocrinologist on December 20th to discuss the blood test results. He first said I need to reduce my thyroid medication liothyronine, because my levels were in the higher level, but not out of range. I told him I did reduced them and since, I have have been achy, depressed and weak. He seemed mad and told me the risks of being on too much thyroid meds and told me he could not prescribe that amount because of his membership to the National Thyroid Association. Now, I think it is crazy that patients have symptoms and don't feel well, but since there in the test results show a "normal" level doctors cant increase the dosage. Also I know that higher dosage of meds can result in osteoporosis. But do I lower my dose and feel like ■■■■ and maybe get osteoporosis, or raise my dose, feel better now and maybe get osteoporosis, I vote for feeling better.
Then the doctor told me how sometimes he really hates his job and proceeded to explain how Hashimotos works (which I already know and he discussed this with me last time) and hem hawed around. He then told me that when a person has Hashimotos, the body doesn't stop at just the thyroid, but moves to different parts of the body.
The doctor told me my the results for the Glutamic Acid Decarboxylase Antibody (GAD) came back at 211.3 the normal range is 0.0-0.5. He told me I will develop type 1 diabetes, but not sure when. The GAD test shows I have antibodies which are attacking the pancreas (killing off the beta cells which make insulin) will eventually result in type 1 diabetes. I was in shock and I froze, so I didnt get to ask the doctor more about this. The doctor, just unloaded this huge burden and said my door is open if you want to come back and left it at that, just walked out the door. I don't understand why he wouldn't order more test results when he saw these high GAD levels. I guess he is a specialist and just deals with diagnosed diabetes, I don't know.
OMG...this is simply awful. Are you having any high blood sugar symptoms, did he test your blood sugar? What a horrible bed side manor, huh? That is indeed a high GAD 65 level, close to what I had. Why did he test you for the antibodies, did he measure your cpeptide, do an A1C? If I were you, I would go see another Endo or ask to get further clarification, especially if you're having diabetes symptoms. Unfortunately, if that's the case (that high GAD test) it is very, very likely you'll develop Type 1..but it seems with that high of an antibody test, you'd have some symtpoms? Isn't it true too that people with thyroid issues often test for the antibodies but do not develop type 1...I'm not sure?
He did not test my A1C, I went to my family practitioner and had that done Friday, I am waiting on the test results. My glucose was low, when I test it now, it is lower, in the 80's, at its highest is 110. I was diagnosed with hypoglycemia when I was 16. I am currently looking for a second opinion doctor. I was diagnosed with Hashimotos in November 06, I have a lot more to learn about Hashimotos and diabetes. My Grandma on mothers side developed type 1 when she was 29, my uncle(her son) has diabetes, not sure what type. My Grandmother on my fathers side has type 2 and my uncle(her son) has type 2. So I it does run in my family, so does the thyroid problems.
your numbers sound good, still. what was the reason for him testing you for the antibodies..did you ask, were you being specifically screened for type 1? so, now what for you...just wait to see if it develops? that sucks, huh? i told my brothers to get screened for the antibodies after I was Dx type 1 (I was diagnosed late in life and I'm the ONLY one in my family on either side EVER to have type 1 or any type of diabetes), they declined...
maybe some others will come by shortly and give some feedback, advice.
Do docs go around running GAD tests on random non-diabetic folk without any bg issues or diabetes symptoms?
I'm just wondering out loud because, while some T1's have high GAD levels, not all do. And I'm not sure I've ever seen any studies to say that high GAD levels will result in T1 diabetes. Most folks here were diagnosed with diabetes before the GAD test was done.
I would suspect that high GAD levels imply an autoimmune thing going on, but cannot be used to specifically predict diabetes vs other autoimmune things.
Well, one can ask for an antibody test, if there's a reason to, i.e., family member was just Dx with T1, etc...it is a 'screening tool', so to speak. However, i agree with what you said too, Tim; many type 1's don't even test positive to/for the antibodies because there are no beta cells left to attack. i'm not sure why the endo tested you...did you ask? also agree, high GAD can also just be an autoimmune thing, which Hashimotos is, no?
The doctor is an Endocrinologist, I went to him because he specializes in Thyroid/Diabetes. I went to him concerning my thyroid. I wanted a second opinion because I was having thyroid symptoms. He did a thyroid ultrasound and then told me he wanted to do tests. So I gave 9 vials of blood and Dec 20 went in to have him tell me this. I am so confused its not funny, I am trying to figure out what all this means. He didn't give me much info and I am finding different information on the internet. I am not entirely sure why he ordered the GAD tests, it is the first I have heard of it.
When I was 16 I would black out, faint and then i rolled and totaled my car. I was tested for diabetes then and that is when I was diagnosed with the hypoglycemia. They made me drink the nasty sugar stuff and I was at the clinic all day. I never kept my records from back then.
call his office...ask questions, you have the right...! if you're confused, demand clarification. also, it's my understanding, there really is no such thing as true hypoglycemia (per my endo) unless one is taking something to actually lower one's blood sugars, i.e., orals or insulin. that's what my endo stated during a hypoglycemia awareness seminar she gave; hypoglycemia can ONLY happen (true hypos) if one is taking something to lower blood sugars.
Charity, I just took a look at your blog , "That is when I remembered how my Naturopathic doc wanted me to start a gluten free lifestyle. After much research and thought, here I am."
It looks like you're going to a Naturopath..or did and are on the internet searching for every disease, ailment out there. Please don't do this. Also, were you ever tested for Celiac's disease, every Naturopathic doctor, IMO, Dx's the same things with every patient; food allergies, vitamin deficiences, hypoglycemia (without any insulin on board), crazy yeast infections - candida, thyroid issues, etc...and looks like you're taking some naturopathic thyroid meds.
If your Endo didn't think you need meds (for thyroid) and didn't test you for celiac's...why are you doing gluten free...you also said you're having all types of different symptoms, had to have an EKG or something...and also, that is an incredibly high GAD test - result. Did your Endo tell you you had Hashimotos, other than a naturopathic doctor? If you're out eating chinese foods and not having symptoms of diabetes, which you would not at the numbers you listed, you seem to be fine..DON'T WORRY ABOUT IT AND stick with a True ENDO! That's my assessment, for what it's worth..!
YES...excellent and NORMAL! Stop worrying and stick to a medical doctor, IMO, not some hockus - pokus naturopathic doctor who will cost you $$ and diagnose you with crap. If your endo thought you had issues, he would have wanted you to trace and track your blood sugas, apparently he does not.
STRESS CAN do a ton of stuff to the body and mind..!
Also, just my opinion, if that was truly your GAD results...I'm MOST certain your A1C would be very high and you'd have full blown diabetes...that is HIGH, close to my GAD results when I was Dx and I was DKA and A1C above 14%...so, something else is going on...your blood sugars are fine...maybe you misunderstood the test results?
My Naturalpathic doctor has been amazing. I love him, but sometimes cannot afford him. He has helped me more than regular medical doctors that just want to push me out the door and put me on all kinds of medications, that has been my experience. It really seems like the endocrinologist didn't want to take the time with me. After reviewing my A1C and normal levels I am not as worried. That endocrinologist was the one that worried me. I made an appointment with a different Endocrinologist and will hopefully get a second opinion. I went on the gluten free diet because I have talked with others who have Hashimotos and they raved about how much better they felt and I called to ask my Naturalpathic doctor about it he said I could get tested for celiac disease, I didn't have the money and so he said just try it and see if makes me feel better. I was first diagnosed with hypothyroid by a medical family practitioner. She put me on synthroid, I was so depressed I wanted to die. I then did research and found the Naturopathic doctor, he did more extensive blood tests and found I have Hashimotos disease. The Endocrinologist I just seen confirmed I have Hashimotos. The endo wanted me to have a EKG because I have a heart murmur and wanted to check it out.
OK...well, sounds like you're on top of things. from what it looks like, your blood sugars are fine..good luck. i'm obviously not a fan of naturalpathic doctors..but, whatever works for you is what matters.
Thank you so much, you all have helped me so much. It is so frustrating sometimes when the doctors tell you things and you don't know where to go or what to do. In all this I have found things have changed in the way of Diabetes, back when I was a kid I remember my grandma and step-dad both had type 1. It seemed so much more complicated, although it still is, the testers have become better and all the iphone apps and technology. I hope they find a cure, it hurts me to see what people with diabetes have gone through.
The diagnosis is a blow but I would like to point out the positive aspects. Your endo did a great job to test the GAD after your diagnosis with hashimoto. The connection between all the different autoimmune conditions is that we have a very trigger happy autoimmune system. Most of us have at least two autoimmune conditions and most likely it will start with one and gradually another comes around the corner. The reason for the immune system to attack this or that tissue is mostly unknown today. At least it can be said that the attack of the pancreatic cells is not very likely. Thus the trigger happy autoimmune system is passed from generation to generation but that it will lead to Type 1 Diabetes is not very likely. This way it can skip generations as in your family. However your positive GAD test does indicate that your body is producing pancreatic islet antibodies (not thyroid antibodies). These antibodies will start to mark the islet cells (also called beta cells) for the immune system. Thus very likely these markers will invite the immune system to destroy them. I am sad to say that all the trials to prevent this from happening failed. So the prognosis of your endo is very likely correct. Furthermore he is correct to not rush things. The islet cells can produce at maximum around 20 units of insulin per hour. This is more than we normally need. Type 1 Diabetes will reveal itself with higher blood glucose numbers when around 70% of the islet cells have been destroyed. This will take some time and you will have time to prepare yourself mentally for this day. I would guess that this will take more than several months. In this time your endo should periodically do a test called glucose tolerance test. This test will show how good the islet cells will respond to the intake of glucose. The response will help to determine the progress of the islet cell destruction.
To be mentally prepared is positive - I know it sounds absurd - but most of us had no clue what was going on. We did not know that our body had no insulin and no chance to burn glucose - the most important source of energy - anymore. We did not know that we are wasting away because the body had to utilize fat to survive - a state called DKA (diabetic ketoacidosis). But you will know and you can take the right steps before it gets critical for your health and life. I would recommend a book like "Think like a Pancreas" by John Walsh to learn and prepare.
Take one step at a time. We are here to share our experience so you are not alone. Sometimes the autoimmune reaction even comes to a complete halt or slows down (LADA). This is not likely to happen but at least there is some hope for a better outcome.
Thank you so much for your response. I am so glad in my internet research I have found such a great community to get information. I am not trying to sound negative, I have just seen how people within my family had to live and die with this disease. It is very scary thinking I will be following in there footsteps and I haven't even had kids yet.
I am glad what the Endo found, I just wish he would have given me more info, he just said hope all turns out well and I was so shocked, I didn't get a chance to even respond.
Last week I asked my family practitioner if I can get my A1C levels checked, I called yesterday and got my level (5.6), but she sent me this message this morning:
HGB A1C your value: 5.6%
TEST INFORMATION: Hemoglobin A1c Standard range: 4.0 - 5.6%
Hemoglobin A1c values of 5.7-6.4 percent indicate an increased risk for developing diabetes mellitus. Hemoglobin
A1c values greater than or equal to 6.5 percent are
diagnostic of diabetes mellitus. Diagnosis should be
confirmed by repeating the Hb A1c test.
I need to enjoy this time I have without it and stop worrying, Its hard when I am the biggest worry wort. I am so thankful for all this information.
I'd like to also add to what Holger said. When tested, a surprising proportion of people with type 2 diabetes and even non-diabetics test positive for GAD. That being said you may or may not develop diabetes. But I hope you keep things in context. Everybody here lives with diabetes. Diabetes s*cks and it takes a lot to take care of yourself, but today is very different than our parents generation. You can live a long, healthy and happy life and you can expect to have kids even with diabetes.
And although your doctor seems like he has poor bedside manner, he does have a hard job. There is only one endo for every 6500 diabetics in the US. And there is no "cure," you only treat patients. He does have a hard job.
As to your thyroid levels, I think you will find many others here with advice based on personal experience. Some people really believe you need to treat based on how well you feel, not on some test number.
Most of us have at least two autoimmune conditions and most likely it will start with one and gradually another comes around the corner. The reason for the immune system to attack this or that tissue is mostly unknown today. At least it can be said that the attack of the pancreatic cells is not very likely. Thus the trigger happy autoimmune system is passed from generation to generation but that it will lead to Type 1 Diabetes is not very likely
I'm sorry but I don't believe your above statement is true and too general. I know just as many type 1's, myself included, who have NO other autoimmune diseases...and, many Type 1's have NO family history of any type 1 or diabetes of any kind or even autoimmune disorders...myself included.
I have T1 since 1987 and till 2005 this was my only autoimmune problem. Same is true for my family where just recently two rare autoimmune conditions were diagnosed. Before that there was no single case of T1 or other autoimmune conditions in my family. To me the progression of other autoimmune conditions is the elephant in the room we all will have to live with. Autoimmune conditions are causing the attack of friendly tissue by rogue t-cells. If once this border has been crossed it can likely lead to other autoimmune diseases. Sometimes these conditions look that harmless that we do not assume something behind it - like some red dots on the lower leg for example. My statement might sound too general but her endo followed the exact same protocol: hashimoto > test GAD for T1. I do not intent to cause any fears but my conclusion is coming from my personal experience. At the next appointment I will ask my endo if my claim can be supported with statistical data.
