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 shit 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.
i hear ya...i hope we find a cure soon, too! :)
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..!
Welcome to TuDiabetes, Charity.
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.
However, the "Type 2s" who are found to be GAD positive are misdiagnosed Type 1s/LADAs--they have autoimmune diabetes. There is a small percentage of people who are GAD positive who don't have Type 1 diabetes, but I don't know of any study that is following that group of people to find out if they develop Type 1 diabetes at some point in their lives. Finally, some of the studies (TrialNet, for example) that have looked at the antibodies associated with the autoimmune attack in Type 1 diabetes (GAD, ICA, IA-2) have come up with predictive tools of who will develop Type 1 diabetes and how soon, based on levels of antibodies and positivity for one or more.
yeah, i don't know any type 2's who are antibody positive? that's why these two diseases are so entirely different!
Well, they are different but the newest studies even link T2 to an autoimmune reaction.
I think it is a misrepresentation to say that "the newest studies even link T2 to an autoimmune reaction." Only a very small percentage of people diagnosed with Type 2 diabetes test positive for the T cell reactive antibody. GAD, ICA, IA-2, and/or ZnT8 are the antibodies seen in Type 1a/LADA, and the OP tested positive for GAD (the only antibody she was tested for).
i think one can often tell the difference in terms of how much insulin a type 1 takes vs. a type 2...i read on one type 2 post someone was having to take 200 units of levemir, basal. for most type 1's that would kill us. i'm happy insulin works for type 2's too and insulin should be available for ANY type who needs it to control their diabetes...but there is a difference in terms of dosage, treatments, protocol, etc...
I thought "an autoimmune reaction" is a term general enough to extend beyond the autoimmunities involved with developing type 1. I am just refering to the type 2 studies where the scientists see clear indicators for the involvement of an autoimmune reaction against adipose tissue. It is a different reaction but nevertheless it is autoimmunity. Or as one of the scientist said: "We are in the process of redefining one of the most common diseases in America as an autoimmune disease, rather than a purely metabolic disease." Let me say it again: they are clearly different. But they might have more in common than we all think. To me there is an environmental factor involved for all the autoimmune problems we see. The current rate of new T1 and T2 cases is just too abnormal:
T1 rate in Germany:
2010: 19.4 new cases per 100.000
2026 (projection): 37.9 new cases per 100.000
Or T1 rate in Finnland:
1980: 31.4 new cases per 100.000
2005: 64.2 new cases per 100.000
The numbers for T2 are much higher. An elephant is in the room...
It is my understanding that only 85-90% of T1s test positive for any antibody, but that doesn't make then not T1. Most T2s are not tested, so it is not surprising that you don't know any. You might find this surprising, but having been diagnosed T2, I actually find I need to treat myself more like a T1. Medications never helped so today I use insulin. Diabetes is a spectrum disorder. T1, T2 these are just labels. Everybody has their own personal diabetes.