LADA, MODY, or Thyroid Issue?
Iím new here and have seen a wealth of info that has been helpful. Iím still not sure about what treatment I should pursue for my particular situation and hope someone here can help. Iím not sure if I should post in the diabetes forum or thyroid and donít want to post in both unless thatís ok. Let me know. For now, Iíll begin in DiabetesÖ
In 2002 I was diagnosed with Type 2 and it was primarily my tiredness and weight gain that drove me to seek help. I am a small person and normal weight for me is about 105 but I was at 125. I couldnít get through my day without at least one nap.
Great GPÖ she found diabetes, lined me up with an endo for follow up, and gave me insulin. She said it was not her field but I could do a small dose of insulin until I actually got into the endo but I should also try diet and exercise.
I saw the endo, she said insulin was not at all necessary at this stage, and that I could try just Metformin (500mg/day I think it was, but I canít remember) and diet and exercise, with the occasional help of Starlix and/or Prandin for heavier carb meals. I took my diet and exercise very seriously and brought it all under control within a few months. I experimented with both Starlix and Prandin and hated the lows they gave me so I dropped them. For the next ten years I had ďgoodĒ A1Cs via a low carb diet, a fairly active lifestyle, and metformin adjustments (which increased to 1000 eventually).
Now fast forward to the last couple of months. My fatigue is almost unbearable. I nap once but sometimes twice a day, have brain fog often, feel generally puny. Iíve checked a couple of times on my thyroid function (partly because I have a sister with Graves disease who always says I should check that as well as the A1C) in the intervening years but my TSH always came back ďnormal.Ē
I got a glucose meter and started reading again. Sure enough, there were plenty of highs. I canít figure out why my A1C is always within normal when I am getting individual readings that are definitely high. Last A1C was 37 in a range of 20-42 (Iím in Europe so itís the mmol/l system) but readings after meals are usually 9s and 10ís, but can range all the way up to 16 (In US numbers, thatís usually 160-190 but all the way up to 288).
Iím concerned and looked at what I could be doing differently. One thing I figured out was that Iíd gotten complacent in my diet. Because I had always allowed myself a wee bit of carbs (a spoon full of rice/ pasta/ potatoes), Iíd drifted into a rather lax sort of LC diet where I thought a sandwich with wholegrain bread was good, or a small bite of someone elseís dessert, or only one little cookie, etcÖ, was ok. I realized it wasnít and I went to strict LC (max 12g carbs/meal). I also decided that I should also get more active. I built myself up, thanks to the Couch-to-5K running program, up to running a half hour 6 days a week. Well, thatís a lot of effort, but after about 7 weeks, I couldnít seem to lose more than maybe 2 of the 20 lbs I wanted to shed and I felt lethargic and depressed often. I decided to find an endo.
I got the wrong one. He said heíd like to see me track my numbers and come back. He didnít want to increase my metformine and he didnít want to give me oral meds as Iíd tried in the past with meals, both of which I thought would help. When I returned, he looked at the chart, a whole 6 weeks long, and decided by the end of the month I was doing great so I didnít need to change anything. I explained that I was ďdoing greatĒ because Iíd gone ahead and increased my metformine to 1000 and Iíd returned to a real low-carb diet. He gave me the Rx I needed for the Met but said that he thought I was probably a LADA and the best way to treat that was with insulin because Iíd be needing it soon enough anyway. He came to that conclusion in part bc I told him that the endo Iíd seen a decade ago had advised me that although she was treating me as a Type 2, I should keep an eye on my sugars and if it became increasingly difficult to manage, then maybe I was a MODY. Anyway, I did manage to get this guy to run a few more tests and after seeing the results, he feels Iím just fine since my A1C is good and when my sugar gets out of control, I can come back to him for insulin. I asked what about the problem of my serious level of exhaustion andóIím not making this up--- he said he wasnít too worried about that! Ok, time to find a new doctorÖ Below are the results of what he tested, and their ranges. I am making sure to put things that stand out to me as being higher or lower in the range. I realize normal can mean normal, but Iím hoping these numbers say something to someone with more knowledge on the subjected. There are other things tested I could give if someone says that helps.
Ery 4.2/pl so low in a range of 4.0-5.2
Leuco 9.7, so high in a range of 4-10
Lymphos 3.33, so high in a range of 1-3.5
Thrombo 323, so high in a range of 150-400
Creatinine 45, so abnormally lower than range of 50-90
CRP <1, so low in a range up to10
Alk. Phosph. 45, so low in a range of 35-105
Cholesterol 4.6 so high in a range of 3.5 Ė 5.0 (a month before it was out of range at 5.3)
HDL Chol 2.2, so higher than normal range of 1.1-2.1
Tryglyceride .5, so lower than normal range of .6-2.2
Glucose 7.3, so higher than normal range of 4.0-6.1
HbA1c 37, so high in normal range of 20-42
Vit. B12 624, so high in a range of 150-700
Folic acid >45, so higher than the normal range of 5-25
T3 1.3, so low in a range of 1.1-3.1
TSH 3.7, so high in a range of .4-4
Insulin 9.2, in a range up to 15 (seems solidly normal)
C-Peptide .82, in a range of .2-1.2 (although the doctor said it would be better to see this at 1 and a month later it was down to .47.
GAD 65 <3 where positive is indicated by 5 and higher
IA2 <5 where positive is indicated by 8 and higher
I want to at least go in the right direction. When I told my sister about it, she was convinced I have a thyroid problem. She said that if she had a TSH of 3.7 she would simply be in bed. Her endo says that people still read that number so wrong and in fact, she should strive for a 1. She does that and feels great. This doctor said I donít have a thyroid problem and it was clear to me he is of the old school that goes by the TSH and no further.
Is anyone still reading this? I hope so! Iíll try to wrap it upÖ Should I be pushing for more help with the diabetes meds, and if so which ones could be helpful? Should I be pushing for more help with investigating thyroid issues? If I read the list of symptoms for Hashimotoís, it fits like a glove but I donít think these numbers do, especially since the antibodies tested ok Are there any Hashi people with an opinion on that? . Iíve read that often auto-immune illnesses come in pairs. Maybe Iíve got both. Which is more important to treat first? If itís only diabetes, can it be LADA when it goes so slow (ten years and counting) before Iím insulin-dependent? Is the slowness of it a sign that what Iím doing does work but not anymore? What is the real difference between MODY and LADA anyway?
Iíve upped my metformine to 1500/day and try to limit carbs. But Iím very discouraged after this latest attempt to get help that Iím not exercising nearly as much as I was so I guess that means the few pounds I lost will soon be right backÖ Itís so hard to get to the right doctor, Iím not ready to just try and make an appointment with some other random endo, only to have them blow me off since my numbers are ďso good.Ē
Instead, Iíd rather have a better handle myself on what is happening in order to know which direction is the right one (diabetes or thyroid) and then seek the very best help that way. I want to live well. Iím tired of being tired. It takes a lot for me to keep pushing forward but I do. Please take a few minutes to help me get further in my process! THANKS in advance.
:cry:I knew it! Too long of a post for a newbie!
I realize y'all aren't all doctors so I'm not asking for medical advice exactly. It's just that if I have to get a handle on this myself (and at the moment that is the case), I just hope someone here can help me... find my bearings a bit... :dunno:
Please help! I'll try to be more patient. I do realize it's not even 24 hours since I first posted! :o
You can google Jimmy's low carb doctors,
First of all, THANK YOU :notwrthy: for replying! I did as you suggested and think it's GREAT that he's compiling a list. Unfortunately, there's no one in my vicinity-- by a long shot. Maybe I'll contact an old doctor or two of mine to see if they'd like to be added!
I think I have to separate the issues a bit if I want to get good help, even though I think it's all tied together. I've posted over in Thyroid since probably one of those folks can tell in a heartbeat if I should continue studying down that road.
I'm also going to try to just accept that I have diabetes, even if it is a curious form of it that's harder to find help for. I mentioned above that I'm type 1.5, but whether that's specifically LADA or MODY, nobody's told me yet! And in the meantime, I'm treated so far as a type 2 (diet, exercise, metformine). Have you ever seen any MODY's or LADA's on the boards?
I notice you were diagnosed as "insulin resistant." Can that be something like MODY or LADA?? What is that makes you insulin resistant but not quite diabetic? Is there a specific A1C threshold you have to cross first? Very curious to hear if you don't mind going into it!
I too am Insulin-resistant/pre-diabetic which is an A1c number between 5.7 - 6.3%. At 6.4% you are then Diabetic. If you haven't read Dr. Bernsteins Diabetes Solution I highly recommend it. I was in a state of shock when diagnosed and went on a search of what type and why. Thought I might be LADA or Mody and was looking for an answer of some sort. End results, it doesn't matter what type you are, treatment is the key. Low carb, low carb, low carb! I'm also under treatment for hypothyroidism as well. Wether the two go hand in hand I don't know but they both need to be addressed.
Good luck to you on your journey! :)
I am hypothyroid (Hashimoto's), and your low T3 level would give me the same symptoms you're experiencing--incredible fatigue and weight gain. I know because my own T3 has 'tanked' several times in the past few years.
Just one correction--a TSH of 1.0 is usually what doctors aim for when they put us on meds. It's not an 'ideal' for anyone else, although people with a healthy thyroid will typically have a TSH between 1.0 and 2.5.
I'm not sure of the range your lab is using, but I guess you know that here in the U.S., a TSH up to 5.0 was considered 'normal,' but that was lowered several years ago to 3.0. Most good thyroid doctors will treat someone who has a TSH of 2.0 or above and is symptomatic--as you are.
You need a good thyroid doctor ASAP. I don't know how to tell you to find one, but the T3 hormone controls how we feel and how our metabolism functions. You need to get that level up to feel better. It's important for your health.
Yep. That's what I thought. When I was in one place with the same GP who treated me for years, we used to joke about when I could stop calling myself a diabetic. He'd say that at a certain moment, technically, I could say that. But the fact was, I was always keeping it more or less in check thanks to meds and LC eating. Now that I think of it, I believe he did say that I was "Pre-" according to the numbers but that ultimately, the names weren't so important as the numbers and the treatment. He gradually increased my metformin to 1000. It wasn't until I was here that the diabetes nurse of my GP said I could drop to 500. I found it odd she didn't want to check my A1C 6 months after having done that, and so I asked for that... sigh.... Anyway, if it helps you feel better (and I hope it does), know that I managed very well for 10 years plus, often being only "lightly" diabetic. That's why I can't stand that this endo here tried to throw me on insulin! He acted like I was a wimp and explained that lots of children manage it bc it's just a way of life for them, and I could too. Sure I can-- when I *have* to! Until we cross that bridge, I'm shooting for control via diet, exercise, oral meds, and positivity.
Thanks for the support, Leo. It means a lot. I'm really struggling here. I speak some Dutch but it's a second language for me so reading studies online is hard. I'd LOVE to find something helpful done by a dr here and then go straight to him or her but I keep finding stuff that is rather negative about the changed standards for TSH levels. I am getting close, though. I found the national thyroid org and their forums and will try to find help there. I think it's a lot like diabetes; just because someone's signed onto the ADA does NOT at all mean they support LC eating! Have to read between the lines to find someone who's more progressive/current about treatments... Thanks again. You're right that it's important for my health. I keep reading about ppl who were given the right attention/ meds and suddenly started living. That's what motivates me. (My sister is one, in fact, but we don't live in the same country, unfortunately.)
I will look more into the T3 thing. Am I right that Hashi's means low TSH and T3 and I've got both? Also, what about antibodies testing? Does it look like I did the right ones?
No, Hashi's is the disease (autoimmune), and hypothyroidism is the condition caused by the disease. There's no treatment for Hashi's--the treatment is for the hypo. About 7 of 10 hypothyroid patients have Hashi's, and it's usually diagnosied via the antibody level. However, that test gives a lot of false negatives. My own blood tests never had antibody levels high enough to indicate Hashi's--it was finally diagnosed when I had a biopsy of one of my thyroid nodules. My understanding is that the antibodies attack the thyroid intermittantly, and unless they happen to be attacking at the time of the blood draw, the antibody level is low. So just getting a negative blood test doesn't mean you don't have Hashi's.
What is apparently typical of Hashi's (according to my endo) is what happened to me. Five years after diagnosis, my T3 'tanked'--labs showed no T3 (it was lower than the lab range). What happens is that the normal conversion of T4 to T3 within the body becomes impeded, so now I need to take T3 as well as T4. This doesn't happen to everyone. My sister also has Hashi's, and she converts just fine.
I hope this is helpful.
Thanks, Leo. It is helpful. Actually, what I meant was, I have both low T3 and low TSH... so is that criteria enough for Hashi's as far as labwork? I think I mentioned elsewhere that I have so many of the other symptoms, but to be more explicit my symptoms are: fatigue, persistent middle weight gain, brain fog, irregular cycles, and infertility. I'm thinking that I should just go to the GP and beg him to order the right tests but I want to be sure I know what to ask for. I think the Antibodies Tests I did above were not right and I should have had TPO, which is different from those? Is that right? I also saw that I was answered in the Thyroid forum by someone who says I need to get a Free T3 test, not just a T3, which is what I had.
BTW, I actually thought I had PCOS because of the above symptoms. Also, when I was a little more persistent about getting pregnant* they found 3 cysts on my ovary. Four and a half years later, they were still there even though I was told repeatedly that they should flush out eventually. But I've asked doctors about it and they swear I can't have PCOS because that means hundreds of cysts, not just a few, and I don't have the hirsutism that's so common. Ok... I guess?:dunno:
*[For the most part, in the 8 or so years that my husband and I have tried for having a baby, trying just meant watching my cycles and doing "it" at the right time; we got a little more scientific back in 08 with an attempted IUI. It was then that I had the first ultrasound.]
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