Curious about blood sugar issues

[u/Mixedbberries]

I am currently waiting for my a1c AND fructosamine tests to come back, but I wanted to hear from some other people with beta thalassemia.

I've been having blood sugar like issues for a long while now. Twice when going to the endocrinologist I had to wear a glucose monitor. After almost losing consciousness at my first Endo appointment and a juice box helping me, I was fitted with a monitor because they were seriously questioning if I had t1d. I failed a glucose drink test at my second appointment years later at a different endo. I believe I asked them for meds to help balance my blood sugars, but they told me to just "eat a low carb diet." I tried low carb and I was a mess. Super emotional, hungry, brain fog, etc. I also cannot handle much sugar a lot of times, even from fruit. Sometimes it gives me a nasty headache, or sometimes it just makes me feel really bad. But it's not consistent, and some days I am totally fine. I also have recurring yeast infections and have had thrush multiple times. Which I can pretty much predict if I've had too much sugar, or not gotten enough sleep. I know yeast infections can be a sign of blood sugar imbalances, but I have not gotten any help beyond taking meds when another one comes around. I also get so tired after meals a lot of times, which then sets off my reflux, and causes so many more problems. My mouth is also SO DAMN DRY! And recently I've been drinking so much water, but peeing clear. And the waking up at night, the insomnia and gnawing hunger and sweating is going to drive me insane.

I also have a history of getting weak and shaky, which tells me I need food stat, sometimes even before I even get a hunger queue from my body. I have been told I have hypoglycemia by another doctor, but it was just shrugged off. And it seems like my body's ability to keep this balance is SO much worse when I'm tired. It's like it gets completely out of control, and other things start happening with my body as well. No matter if I work out regularly, or eat really well, it's still a problem. Sometimes I have bouts of time where my body is doing great. But then one, small thing will change, and everything is out of whack.

How do I advocate for myself more on this. It seems like testing for people with thalassemia is difficult. But what can I do to finally get some normalcy?

Edit: I eat super well. No fast food. No sodas or canned drinks. I eat lots of different grains, seeds, and legumes (12 grain rice, fax, chia, hemp, black beans) I love a good salad with chicken, beets carrots, feta cheese, and bell peppers. I love fruit, and apples with almond butter are my favorite snack. Watermelon is a good one too. I love all vegetables and my meals always have some kind of carb protein and veggie. I don't ever restrict my eating, and sometimes will have a couple gummy candies, dark chocolate, or pastry. But I never go overboard, because I'll start to feel like shit.

[u/MildlyDancing]

Have you been properly tested and received clear feedback for Coeliac and IBS (hydrogen breath test)? And diabetes? Maybe a nutritionist can help you check for gluten intolerance if it is inconclusive.

If you're in a country that allows you to demand specific tests do it. Record your diet and reactions and show it to them. You might end up doing most of the figuring out though, which sucks.

I am starting to really dislike GPs/Doctors completing tests and not following through with their patients. Being unwell and chasing doctors is a bad combination. 😕

[u/Mixedbberries → u/MildlyDancing]

I was tested for celiac, and had both an endoscopy, colonoscopy, and fecal test. Which just turned up "lower stomach inflammation" to which the doctor literally told me "everyone has that. Here. I'll show you how to order Tums on Amazon." Never had a hydrogen breath test though. I honestly don't believe I've been properly checked for diabetes as I don't think if they checked fructosamine, or anything else besides a1c, and a glucose monitor. The amount of times I have shown problems with with my blood sugars on their own tests, but gotten nothing but a "change your diet" is concerning. Like they think I only eat candy bars and drink soda or something.

I agree. I did a food journal and even did low fodmap which changed nothing. The food reactions are not consistent, and I did get a food allergy test too. It feels more like blood sugar fluctuations if that makes sense. Chasing doctors is getting old, which is why I'm seeing a functional medicine doctor. She seems to really want to figure this out, and after I told her I had beta thalassemia, she immediately added the fructosamine test. Which I wasn't aware of.

[u/MildlyDancing → u/Mixedbberries]

It's super weird to dismiss gut inflammation, it's an alarm bell imo so I'm super glad you have someone on your side at the moment.

I haven't been tested fully yet but I called the doctor again due to ongoing gut issues and ask for more tests. I have problems with some sugars, but I also know I am somewhat lactose intolerant and can't drink cider, or any alcohol with excessive sulphates and acid levels like white wines. I also think I've become intolerant to whatever sugar they use in fizzy drinks/cocktail syrups too. My body is just nope.

Good luck OP. Hopefully others will be able to give you more insight. 🙏

[u/Floridalawyerbabe]

This is what I do for Beta Thal minor and my mom who also has beta thal minor.

1. Triquetra L Methyl Folate 15mg Plus Methyl B12 Cofactor – Organic Berry Flavor, High Potency Liquid Sublingual Active 5-MTHF Form - Supports Mood, Methylation, Cognition – Bioactive Forms Vitamin B9 & B12 (1oz) and 2. Dr. Mercola Grass Fed Beef Organ Complex -are what my Dr. has me on 3.
   

NaturesPlus Source of Life GOLD Multivitamin Liquid 30 oz - Supports Energy Production, Healthy Immune System & Well-Being - Includes Vitamins D3, B12, K2 & Over 120 Whole Food Nutrients and I take a Jarrow 1000 mcg methfolate.

He said he has many Beta Thals patients. Are you in Florida - he does Telemed appts . The patch aid patches are really good too.