When you were diagnosed


#41

KBJ86 - you’re not the only one!!! Very interesting that our stories are so similar, and we both have Graves.

I was told I had pre-diabetes about 2 years ago, and was on metformin for a year, but was able to get off of it after losing weight and incorporating a better diet and regular exercise. September 2014 my a1c was 5.7 without medication. Can’t tell you my bg #'s because I was never told to track it, and didn’t have a meter. I had no symptoms whatsoever when they told me I had pre-diabetes.

Last July (2015) I had a strange rash over my entire body for 3 days in a row, followed by other symptoms–it was awful!!! I took steroids for the rash (allergiest, doc, ER, med-stop–no one knew what caused it–“idiopathic” is all I was told), so when I followed up with my doc a couple weeks later he ran all my usual blood tests and he told me my A1C was an 8, I was VERY upset! I had lost about 60 lbs, (was trying to lose weight) had been going to the gym religiously for months at that time, was even taking an Insanity class 3 times per week. I got back on metformin for a couple weeks and gained 9 lbs—I was so frustrated that I called the doctor’s office and asked to be put on another medication, and the same thing happened. I’m guessing now that some of that weight loss was because of the diabetes? Anyway, it was strange and frustrating, and I was busy planning my wedding and didn’t want to deal with it, so I ignored it and wrote the bad #'s off to the steroids I was on. I stopped the meds altogether after about 3 weeks.

Things seemed ok for a few months, then here comes the new year, and all the classic diabetes symptoms–thirst, frequent urination, blurry vision, very tired all the time and cranky. Went to the doc on a Tuesday, was told I definitely had diabetes–type 2 according to him. BG was 425, a1c was 10. Was put on Metformin and Invokana. By that Sunday (Valentines Day) I was in ICU with DKA. It took until earlier this month before I was able to get in to see an endo, but my c-peptide came back as 0.7 and I was diagnosed with T1 about 2 weeks ago.

momof21 – do you have a larger city near you that maybe offers higher quality healthcare choices? It might not be a bad idea to seek out an endo that has a good rapport/reputation, even if it means driving a couple hours or so.:blush:


#42

I live in Tampa @kerland831 you would think we had amazing doctors but not a lot of Endocrinologist that are good or think outside the box. I guess I feel like I’m just a sitting duck, waiting. Really stinks, my thyroid has always been insanely out of control.
We are similar and I bet a bunch of others, just most dont come into these boards until after they’re clinically diagnosed


#43

If your TSH is low then you should probably look into hyperthyroidism. A low TSH means that you have too much thyroid hormone in your body. Hyperthyroidism can lead to high blood sugars as well as anxiety, weakness, nausea, fatigue, rapid heart rate, insomnia, and generally feeling utterly horrible (been there, done that).

Even if you had Type 1 diabetes, there is nothing you would be able to do to prevent it. The most you’d be able to do is monitor your blood sugar and start insulin as soon as your numbers started rising. But your other post says that you had antibodies tested and all were negative, so it doesn’t sound like there’s any autoimmune attack going on.


#44

Hi, I’m on Synthroid have been since I was 15. Since my kids were born, nobody has been able to regulate it. Its never been Normal. Right now, my TSH is 0.23. Its terrible. Sometimes I’m Hypo and sometimes I’m hyper, but I ALWAYS hve symptoms of hyper, its sad.


#45

I’m sure others have a better understanding but in Hashimotos your thyroid can “flare-up.” You can go from being hypothyroid as the autoimmune attack causes your thyroid fail to hyperthyroid to a flare up where your thyroid is overactive and you become hyper. A week ago you said “I suffer from Hypo and I guess Hashimotos.” Have you actually been tested for Hashimotos?


#46

Yes, I have and have high antibodies when tested


#47

Your postings are somewhat contradictory and are making less and less sense. Quite a few folks have reassured you that the D-related results you’ve posted are pretty normal, yet you seem quite upset by and focused on a fasting BG of 105 and other values that are within normal ranges. If I were you, I’d either follow my doctor’s advice and discontinue taking the relatively low dose of Metformin you’re on and see what happens, or I’d see a different physician. I’m in agreement with others who have said your symptoms sound as if they are more likely thyroid-related than D-related. If you’re going to eventually develop diabetes, there’s nothing you can do to prevent it, so it seems to me to be a waste of energy to worry about what may or may not happen…


#48

Like @rgcainmd, I think you need to focus on your thyroid. And if your doctor hasn’t tested you for associated conditions (like Graves and Celiac) they should. Although I don’t believe I have a thyroid condition when I looked I found the thyroid patient community very much like the diabetes community. You may find lots of others on-line with support and information about thyroid conditions. Thyroid conditions are often improperly diagnosed and treated by the medical community and it is important for patients to step up, learn about their condition and take an active role in leading their medical team. You need to be very vocal about how you feel with your doctor, otherwise he will just see you for fifteen minutes, look at your TSH that day and change your meds up or down with little thought to how you are doing overall or how you are feeling.


#49

As I completely appreciate you waying in. Nothing I’ve said is contradictory. Me having thyroid disease is a separate issue. I’ve since my posting read many people that are like me and have a (though low for now) higher than the normal fasting glucose. They later became diabetic, my thyroid probably just adds to my sickness. Though, I’m here to learn more about others with diabetes, and how maybe what got them to a diabetic state. Your or others answers are not the end to all my thoughts, questions and uncertainty of what may progress for me. I’m the type of person that believes its your own responsibility to learn and educate yourself about persoanl health. I dont trust doctors and certainly agree with one thing @rgcainmd, I should find another Endocrinologist.
Thanks for waying in but I intend on pursuing more questions for people that have more knowledge than I do and are already at a point where I MAY be one day. I also intend on keeping things positive with people I communicate with, if you feel its a lost cause and annoyed feel free to log off from my posts and interest. I have 2 wonderful kids a husband to care for and I’m slowly going downhill, dont have a lot of time for negativity. Thanks


#50

You are right @Brian_BSC, she gave me numbers over the phone and I was so upset that I made an appointment to see her Monday. Thats her first time seeing me and though I came prepared with years of thyroid and glucose results (all not normal) she still just moved my synthroid down. Guess I expected her to look for other reasons as to why they cant regulate it and to look further into testing. I appreciate your help, after all we are all here with our own health issues and concerns. I hope one day I can get answers and a better plan, diet so that I can help others too


#51

[quote=“momof21, post:49, topic:52975”]I have 2 wonderful kids a husband to care for and I’m slowly going downhill, dont have a lot of time for negativity.
[/quote]

I don’t understand how the replies you’ve been getting are negative. If I was worried that I had a serious, life-altering, potentially life-threatening condition and I had test results that came back normal, had a doctor who reassured me I didn’t have that condition, and went on a forum and got 40-50 replies from people with that condition saying that their experiences weren’t similar to mine, I would be extremely relieved!

Trust me, Type 1 diabetes (or any diabetes) is not something you want, and so it’s great that all of your test results (fasting of 92, normal insulin, no antibodies) point away from diabetes rather than towards it. What you are concerned about as a high fasting blood sugar of 105 or 107 are fasting blood sugars that most of us would love to have for the rest of our lives.

Having diabetes does not make life easier. Your numbers don’t suddenly become normal once you have a diagnosis. Even with a strict diet, strict medication, strict monitoring, strict exercise regimen, and putting in maximum effort, control does not come easily at all, even for those of us using the latest technology like insulin pumps and continuous glucose monitors. For us, “control” does not mean normal blood sugar levels, it just means blood sugars that aren’t constantly bouncing from dangerously high to dangerously low. Diabetes affects every single aspect of life, blood sugar being weighed into many daily decisions, control being half science and half guesswork. It takes constant vigilance, constant monitoring, constant adjustment. You wake up each day and go to sleep each night knowing that, if the highs and lows you experience daily go too far in either direction, you could be facing life-threatening consequences at any time. You worry that, despite all these efforts, you may still end up with a serious complication down the road. The disease affects not only you but your entire family and close friends. You lose sponteneity. There are no vacations from the daily grind. It is a hard disease to have, a disease no one here would ever wish on someone else.

I would be clear to your doctor about how bad you’ve been feeling, and maybe seek a second opinion if your doctor brushes you off. But I wouldn’t be surprised if another endocrinologist looks at your numbers and says the same thing that this first one has. If that’s the case, you should be happy!! Thyroid disorders can be very hard to control and can make you feel horrible, so I would get a doctor who’s willing to be more aggressive in trying to treat that, as it could be the source of how you’ve been feeling and your blood sugar levels. If you are worried that your blood sugar readings are a bit too high, then make sure you’re doing things daily that will keep them lower (and are healthy anyway) like eating regular meals that are lower in carbohydrates, exercising 30-60 minutes every day, reducing stress, sleeping well, and getting checked yearly.


#52

It was actually a response to someone saying I was contradictory. I think people that want to engage would have to read every comment made from the start, not just pick one and respond off of that. Of course nobody wants Diabetes and on the other hand nobody wants Thyroid disorders pushing many into a diabetes state. I of course am just trying to work preventively in my care and was put on Matformin after my son was born as I had gestational diabetes and my fasting was always on the higher side. Just because one may love to have a fasting from 105 to 110 doesnt mean that its a long term healthy place to be. Long term beyond 90 has proven health problems in the future with heart and other functions. I simply went on this board after my doctor said she thinks I will be moving into type 1 in time if not now.
fatigue
nausea
headaches
cold
eye pain and soreness
itching at night
vomiting
horrible TSH numbers
gastro problems
is just a few of my constant battle.
Now, that I’ve had such great people take the time to speak with me and have a lot of knowledge, I feel like I am better educated to move forward with my Endo appointment. I do think she brushed me off and I do think some of us if given the right diagnoses can get better.


#53

I’m also someone who is hypothyroid and T1. I don’t know that the research shows the thyroid disorder pushes you into a diabetic state. I think it’s more of an issue that Hashimoto’s and T1 are both autoimmune disorders, which simply means the immune system in that individual is prone to self-attack. When my T3/T4 levels are too high, it does make managing my T1 more difficult, but I don’t think the thyroid disorder causes diabetes. Have you seen research that says otherwise? I’m truly curious.


#54

I was never diagnosed prediabetic. In the preceding years my bg was 72, 84 & 92. When I went in last year, it was 195, and my A1C, done 2 weeks later, was 9.2. I was shocked and devastated, as I had no symptoms. Started researching online, and bought Dr. Joel Fuhrman’s book, and started eating low carb. In 3 months I lowered by A1C to 5.5, by diet and exercise.


#55

Thank you! I’m buying that book, because at this point I’m so unsure what to eat and so hungry. The other day I hadn’t eatin since lunch because I didnt feel well after, fell asleep. When I woke the next morning my BS was still high. I try to eat healthy but I dont eat meat, except for fish. Really need some direction because I think the metformin is adding to my stomach issues. Thanks for sharing @Pat_Ann


#56

Are you not on insulin or oral meds? Thanks for the info @Pat_Ann


#57

It is very interesting to read every bodies account of what happened to them and how they were treated. Mine is a little different. I was in Afghanistan and out in the sticks. Was drinking huge amounts of water and could not get enough. After a few days I was back in town and went to see an American nurse I new in the camp. She was sharp and immediately said hey you must be a diabetic. She did a glucose test and it was in the 400 range. She phoned a local Afghan doctor and got a script for insulin and took my blood to get it tested at the USA medical centre. To make along story short she was able to get a heap of disposable syringes and more insulin for me. The best was they gave her a meter and a heap of strips. Enough to last me three months. The meter was the most important as at that stage I had to go to her office when I was in the camp to do a test and it was not practical. SO once I had all the meds I was on my own. Was not able to tell anybody as this is against most companies policies so just had to find a way to live with it and to stay healthy. Had to do a huge amount of research and found that this site became a major part of my life. Pup was one of the first people I met here and she pointed me in the right direction and was always there when I needed advice or just needed to talk to someone.
Returned home after three months and went to a GP. New more about been a diabetic than he did. At least I was able to get a script for the insulin that I needed. It was so great to be able to get the pens and have both long and short acting insulin.
Three years later and 1Ac has remained under 7 and still work in not so good places with very little medical support. I have learnt how to live with what i have and just found that food is the biggest issue I have as I do not know what is in the food and have to act reactive after meals.
Now thinking of going onto the pump and looking at the 640G. This will be they new chapter. Issue is wearing body armour all the time it makes it a little difficult to find places for sensors. But going to give it a try. The initial issue is travel with 4 months supplies. My fridge is a diabetic treasure chest.


#58

I’m not particularly a fan of Fuhrman. I’ve been alarmed by his ties to animal rights activists and he is a past president of PETA which makes me question whether his arguments for a vegetarian/vegan diet are sound. And anyone who claims their diet prevents or reverses diabetes is someone I don’t trust. I found low carb diets to be very effective and there are quite a few credible authors of books on these diets. Bernstein’s Diabetes Solution is a classic but very strict. Another easy read on the subject is “Diet 101: The Truth About Low Carb Diets” by Jenny Ruhl.


#59

Awesome @Brian_BSC. Does either one help with meal planning? I think me being a vegatarian makes this all the more difficult. Hoping my first couple stabs at it will be in the right direction. I started researching foods that are more harmful for hashimotos. Its gonna be quite the challenge trying to eat to correct both. But I’m up for it, my functional medicine doctors years ago tried to lead me in this direction as my cholesterol was high even with eating better. Cant wait to start a better diet


#60

Gosh @Neil1, your story pulls at my heart strings. Sorry its so tough on you, thank you for sharing your story!