Weird Symptoms, Little Support, Struggling


#1

Hello,

I’m writing because I’m frustrated and would appreciate feedback or insights from anyone who has experienced this/heard of this before. I have Type 1 Diabetes and Hashimoto’s thyroiditis. I’ve been working to stabilize my blood sugars for 20 years, with obvious fluctuations in self care (we’re all human, right?). My A1C has been between 6.2 and 6.9 for nearly a decade, which is fantastic, but it is not reflective of the fluctuation and volatility of my levels. In summary, my blood sugars will go high even when fasting or maintaining a low carb diet, drinking water, exercising regularly, etc., but the peaks are not consistent. This happens even with regular sleep and when stress is lower than usual. I’ve been to a lot of doctors, most of whom desmiss the symptoms and refuse to really look into them because my A1C is pretty good and my lab tests do not show sings of damage. One doctor after seeing my sensor and my A1C exam told me that my sensor must be wrong and just shrugged his shoulders (which was…helpful). While it is great that I have no detectable long term damage and my A1C is good, this does not accurately reflect the effect that the fluctuations have on my ability to work and to function. I often find myself becoming very discouraged because I know that I could do much more if I didn’t struggle with the brain fog, the lack of sleep from fluctuations and working multiple jobs (even on a strict budget), and lack of support/dismissiveness from family. I know the “I could do more if…” thought pattern is not very self loving or constructive, by I also think it’s good to just be honest about how I feel and that’s just how I feels. Odd symptoms include: bowel problems, brain fog, tripping over my words/speech, fingers and eyes twitching, occasional nerve shocks, weird vision problems (I used to see halos around lights, have high light sensitivity, and have the kind of swirly vision that a dehydrated runner has after a marathon. Now I still have the high light sensitivity and no halos/some rays, with a little swirliness). I’ve gone through routine blood tests/other exams for everything from kidney damage to retinopathy and glaucoma, nerve damage, liver stress, and allergies, but no one can find anything. My blood sugar will sometimes shoot up to ~4-500 mg/dL while fasting out of nowhere. When this happens, I switch my pump site, infusion set, and the region in which it’s inserted, I drink water, I dose to correct and I put my pump at 150% basal rate until I come down. I am now seeing a doc who thinks that I may just have problems removing natural biotoxins that we all create in digestion from my body. Hence, we are in the process of testing for that. Frankly, it’s exhausting and it’s affecting my work, my hope and my sense of self. I’ve also heard that caffeine causes insulin resistance in some people and that fermented foods and probiotics help T1Ds a lot, so I’m removing caffeine and eating more pickles and a probiotic. I am working on affirmations and other uplifting and encouraging personal growth activities. I’ve also looked for support groups, but I can’t find any in this city. I’m asking my Endo this week. I’m going to a therapist/life coach, which is awesome but I honestly still need more help. I just honestly am frustrated beyond measure because I feel like I’m doing everything that I’m supposed to do (with obvious occasional exceptions from being a beautiful, imperfect human) and I just don’t understand why this is happening. I know that some things are beyond our understanding, but I am having a lot of trouble accepting that at age 27, this is just the best it’s going to be and that I just need to grin, bear it, and do the best I can. It just feels like a half life. I want to be one of those encouraging rockstars that overcomes all of this and helps others to do the same, but honestly, I’m tired and I want a for real vacation. Ha!


#2

That is a lot of stuff for you to try and handle all at the same time.
Sounds like you are ahead of the game in that you are seeking help and following up on treatment. That’s a big deal! So many people don’t. The halo and light stuff sounds like it could be migraine related? I have a friend who only has those types of effects, not the killer headache, but I assume they will have checked you for that or other neuro stuff.
I’m 35 years in, and even with pump and CGM, there are plenty of days that are just whacky. For me, there is usually a reason, if I step back, and whenever my stress levels are even mildly up, my sugar can shoot to the ceiling.
With your busy day to day life, maybe you’ve got an underlying higher level of stress hormones lurking, like a “basal rate of stress”. Like any of our other hormones, sometimes they just sneak up when you don’t expect it.

And, I hear you: it’s just so frustrating to STILL have to deal with these crazy numbers after all this time, and it’s lonely and crazy-making. Do you have local diabetic friends or support groups? Or have you gotten support from others at tudiabetes before? I know you said you were looking for support…
Friends and family who don’t have diabetes can be loving and caring (or not), but they cannot understand or empathize with the hot mess of fun that can be daily life with diabetes. Hang in there, Alex. You are doing the best that you can, and it’s pretty normal to go through these times where you’re just exhausted, sad, and frustrated by all of this junk.
Diabetes and depression are good friends. Stress and anxiety and loneliness like to join in the party. Sure wish they wouldn’t. Thanks for reaching out.


#3

Thank you for your message. They haven’t checked me for Brito things because they say it’s “all in my head,” but halos around lights, nerve shocks, and light sensitivity are not symptoms that are consistent with “all in my head.” I’m seeking out a couple new doctors who will work with me to get to the bottom of this. I think that the chronic low level stress reason is likely a part of the problem and I’m working to resolve that by transitioning from 1 job to 2 in the near future and also doing relaxation exercises. That said, it really does seem kind of odd that it would shoot up to 400-500 mg/dL seemingly at random. I know that there is an underlying cause for every blood sugar spike, but I just don’t get what this one is. The only other option that a I can see is measuring out every meal to make sure I’m pretty precise about the carbs, removing all potential inflamatory foods, and eating and sleeping at the same time every day for a few weeks. The only trouble with that is that it’s very difficult to do that on a busy schedule/while having a real life. It’s really difficult to find the unique me in this monotonous unforgiving mess of stuff that I have to do and then to not feel frustrated and worried that there may be some underlying long term health issue developing that I just can’t prevent or have no way of identifying at this point.

You’re righ. Diabetes and depression are very close friends and I’ve struggled with this a few times during my life. I also grew up in a traumatic family environment (hence the decade of counseling), but I think I’m honestly handling things pretty well given the circumstances. I think my biggest struggle is this small incessant idea in the back of my brain that if I could just fix these things, I could have a normal life. I know that’s not a healthy way to view it, but it’s hard not to feel sad and resentful while also knowing that i have a lot to be grateful for.

Thank you greta for your feedback. I really appreciate what you said. I haven’t gotten support through his forum before, but I’m excited to be a part of the group. I am seeking out support groups, but I’m honestly concerned that I’m going to interact with a lot of people who (not through intention) are judge or like to compare in a higher than thou sort of way, which I have experienced before. People are people, right?

That said, I don’t know what it’s going to be like and it could be great!

Thank you again for writing your message.


#4

For neuro* things


#5

Have you been screened for celiac disease? Hashi’s, TD1 and celiac disease are strongly linked. It could account for your GI problems, along with brain fog, eye and nerve issues. There are over 300 symptoms attributed to celiac disease.

I have Hashi’s and CD. I am in the pre-diabetic category maintaining with a LCHF diet, but I am at risk for TD1.

Learn more about a simple blood test:

http://www.cureceliacdisease.org/screening/


#6

Hi Alex, Quick thought before I dash off: if you had Trauma in your childhood, then your natural and typical cortisol levels will be higher and more apt to act up at random times. Counting carbs correctly and giving the exact right amount is HARD, so don’t beat yourself up for that. I’m using Figwee and Calorie King on my phone and my daughter’s device to do the best we can. I’m relearning counts on things I definitely undercounted.
But, honestly, can you ask your endo about cortisol and other stress hormone levels? Or get them checked?
I am like a lab rat with that stuff: give me a whiff of stress (who, me?) and my sugars will skyrocket. I won’t even know I’m stressed and the meter will tell me with that unexplained number…


#7

Occasionally, I experience visual distortion to a part of my visual field that looks a little like looking through a kaleidoscope. My mother and three of my siblings have reported this same symptom and learned through doctors that it is something called a “visual migraine.” It is not painful but it is real. The first time it happened to me, it seemed to be triggered by the bright overhead light used by my dentist.

Since you use a CGM and report blood sugar fluctuations as a strong possibility as the source of many of your symptoms, perhaps you should monitor your Standard Deviation (SD) number. SD is a measure of BG variability. By doing this you will find out if other efforts with diet helps improve your SD number. Lower is better in SD. I’ve read that a non-diabetic will typically have a SD of 15 mg/dL. I set my goal for less than 30 mg/dL. In the past, I’ve often lived with a SD of 60 mg/dL or more. Many CGM upload sites produce reports that show your SD. I use a Dexcom CGM and upload to the Dexcom Clarity web-based report site.

I’m sorry I can’t relate any experience with Hashimoto or Celiac disease. Solving any problem in life starts with asking the right questions. I believe you are asking the right questions and your curiosity and persistence will lead you to a better place. Don’t give up! Finding an answer, even a partial one, will improve your life. Good luck.


#8

Hey Greta,

That’s a great idea. My doc actually checked my cortisol levels a few
months ago. The said that while the basal levels are slightly higher than
normal, that shouldn’t cause large changes in my numbers.

In response to the last kind lady that messaged me, I have not been tested
for celiac disease, though i believe that gluten intolerance was screened
for in my allergy tests. That said, I think that’s a great idea too and
I’ll definitely look into it. I’ve also been recommended a test called 23
and Me that is a comprehensive genome sequence and reviews all potential
red flags in the genetic code. I will speak with my Endo about the genetic
test for celiac.

Has anyone worked with liver or gallbladder issues before? I’ve read that
stress to those organs can cause blood sugar fluctuations as well and,
given the toxicity hypothesis, it may be good to look into that as well.


#9

The genetic test for celiac disease will only help rule out celiac disease and NOT diagnose it. Why? Some 30% (or more) of the population carries the genes for potential celiac disease. Only 1% of those (roughly) actually go on to develop celiac disease. Best to get a celiac blood screening. Best to request a full celiac panel and the usual screening TTG does not catch all celiacs.

Take care!


#10

That makes sense. Thank you for the recommendation. Have you ever had s
full genome sequence completed through 23 and Me? I’ve ordered one and I
believe that the screening that I chose will include an analysis of the
genes that can be expressed in Celiac. I will also request a blood
screening if that is needed in addition to the genome sequence.

Thank you again!

-Alex


#12

A few questions.

  1. Regarding the thyroid. What are they testing? FT3, FT4, and TSH? Or just TSH? What are your levels in the given lab range? Most people with hypothyroid feel best when their FT4 is mid range or higher, and their FT3 is in the upper 1/3 of the range.

  2. Have you been tested for inflammation levels? CRP, Sedimentation rate? IF these are high, there could be something else going on?

  3. Vitamin D levels? Are they tested and in the optimal range?

  4. Regarding celiac, there is a high incidence of false negative. The only ‘gold standard’ for detection is endoscopy with multiple biopsy samples. If you are not sure about celiac, then you could try going gluten free for 3 months or so and see if it makes a difference. Allergy testing on other items may also be an option.


#13

Hey the brain fog, tripping over words and twitching of eyes and hands are all related to thyroid. Do you get the TSH levels checked? If it has not been done in a while push for it. Diabetes and thyroid are both endocrine problems, and they can piggy back each other. When you have the high blood sugar spikes. Do you wash your hands and retest? How old is your meter? When was it calibrated last? It could be a contaminated blood sample that is causing the high, I once had a BBM value of 28 (Canadian reading) I had bar-b-q sauce on my finger, wash retest had a true value of 7.6. It may be a meter issue, I switch mine yearly. Or the liver is going into survival mode and dumping Glucose into your blood stream, this can happen when a person goes with a low carb diet. I hope this sheds some light on the issues.


#14

Hi Grimlok,

Thank you for responding to my message. Everyone on here has been so
helpful. I have gotten my TSH levels checked a 3 times by 3 different
physicians. They all said that my TSH levels are normal. I didn’t think to
replace my meters and I should definitely do that (thank you!). I do
typically wash my hands before testing. My A1Cs have been decent (~6.2-6.9
for ~10 years). I think that the hardest part on my body was the amount of
fluctuations that I used to experience. I still have odd fluctuations
throughout the month, but decent control used to feel illusive. Now, I feel
pressure in my lower back that’s i think is from my kidneys. I’ve had them
tested and they are fine. It’s just very odd that I’m experiencing
headaches, occasional nerve shocks, twitching fingers and eyes, and general
lethargy. I’m incorporating more exercise into my schedule to see if it
helps with anything. I did think that it might have to do with my liver
acting in survival mode. The strange thing is that I’m less stressed than I
used to be, my blood sugar control is better and I’m still experiencing the
same symptoms. I’ve heard that I may have a genetic predisposition to
sensitivity to biotoxins. That’s all I know. All of my doctors say that
everything is fine, which, if anything, is making me more stressed. If it
truly were nothing, I would be at peace, by it doesn’t seem like nothing.

Thank you for your help :slight_smile: I really appreciate it


#15

Hey, we are all in this fight togeather and I firmly believe we can help one another. My wife has Hypothyroid and her levels are always in range for TSH, she has the brain fog and trips up with words and even forgers what she is saying mid sentence. I have seen that first hand. I have had random glucose spikes for no reason and I had one doctor explain about the liver, Low carb diets. It really made sense. I think I remember you saying you were getting in to see an endo, have him look at the tests and see what he thinks of the symptoms. I try to check daily, so if you need to talk or just want to vent, feel free.


#16

Hey. Thank you for your support and please know that if I can ever give you
both support in the same way, I’m here. I’m definitely going to let my Endo
know, by she hasn’t been concerned enough about it to look more into it. I
think because she’s retiring in the next few years, she’s only really
pursuing more serious cases. I may be looking for a new Endo soon.

Do you know of any good shoe brands for diabetics with wide feet that are
comfortable and good for us? My feet are very healthy, but I haven’t done
very much for them so far and I want to be on top of that.

-Alex


#17

Wide shoes not specific for diabetic but New Balance comes in very wide sizes. I have been told I have “duck feet”. I say the better to swim with. The New Balance in width 4E work nice for me.


#18

I wear Dansko, which are for wide feet and also helps with arch support. A little pricey, about $100, but they last forever. I’ve had mine for 5 years! If you do were them done, the sole can be replaced. If you prefer sandals, THINK are also Giuseppe for wide feet! New Balance are god, but mostly sneakers. Good luck!


#19

Hi Alex. I know this message is a little late - hopefully you’ve found a solution since you first posted! While I don’t have experience with all of your symptoms, I was having trouble with a few of them about a year ago - brain fog, vision problems (a little different than yours), tripping over words/speech, eye twitching. My doctors weren’t very helpful, but I did a bunch of research myself and requested that they run a couple of vitamin tests (in addition to a thyroid and celiac test). It turns out I was very low in both vitamin D and B12. In my research I found that vitamin D deficiency is correlated with diabetes (not sure if it’s causational). I wasn’t vegetarian, but I still had low B12 levels. Once I raised my levels, most my symptoms disappeared entirely.
I think it can be difficult to differentiate what symptoms are a result of low/high blood sugar (sometimes I’ll feel residual effects after I’ve normalized my sugar levels) and what might be due to another condition. My doctors also seem to be able to brush off symptoms way too easily. I had to insist on the vitamin test because my doctor kept saying that as long as I was eating a balanced diet my vitamin levels should be fine. I think he expected my quality of life to be much lower than I expected it to be. I was only 29 after all, and I’d done a pretty decent job of managing my diabetes.
I have no idea if you have a vitamin deficiency or if you’ve been tested for one, but some of your symptoms could be attributed to this. Might be worth looking into getting a test.

Kate


#20

Thank you for posting this. I have been struggling with light sensitivity, depression, brain fog, tripping over my words, and some other sensory issues and reading this thread has given me some avenues of enquiry to pursue as well as the welcome knowledge that I am not alone.


#21

Hi Pixari,

You’re welcome! I’m glad that so many great people responded and hope that
some of those avenues help you to find solutions to your symptoms. I’ve
noticed that Vitamin C, Vitamind D, cistanchr tubulosa, ginkgo biloba,
green tea and rhodiola supplements help me to improve mental clarity/remove
some brain fog and increase my mood a great deal, as well as remove some of
the light sensitivity. I think a lot of it is my overactive immune system
causing more problems than it is solving, and the supplements seem to be
helping with that. One of my doctors also mentioned that it could be
partially due to an allergy that they haven’t tested. Another thing to keep
in mind, in case you’re experiencing this like I am, is that caffeine tends
to cheer me up, but it also causes a lot of blood sugar spikes, since it
increases adrenaline (fight/flight response), which kicks our livers into
gear to release…eventually more sugar into our blood. I didn’t realize
this until recently and am trying to wean myself off of caffeine.

Some vitamins as well as decreasing the amount of caffeine your drink may
help your symptoms…along with an allergy test.

If nothing else, I am here to help and I’m glad to know that I’m not the
only one as well. If you ever need help or someone to listen, please feel
free to reach out!