New News

This blog has been silent most of the summer, and I am very sorry! I have had a lot going on and a lot of half-finished posts to share with you.

I don’t write here much about my personal life. But here is something I need to share in order to fully explain the newest news: I have lived with chronic illness for 16 years. I became ill in the late 90s, and spent many years being dismissed and condescended to by doctors. Eventually, in 2002, I was diagnosed with fibromyalgia, and in 2003 with Chronic Fatigue Immune Dysfunction Syndrome  (CFIDS, also known as Myalgic Encephalomyelitis, or ME.) I have had good times and bad times, but since 2003 my health has been permanently impaired.

How is it impaired? Well, it is a lot like having the flu, for 15 years. I am in pain every day. I have for some years now used daily medications to reduce the pain, but it never goes away entirely, and some days it is excruciating. Some days I am essentially bedridden or housebound. Some days I can get out and do things, but I always have to be mindful of conserving my energy, lest I overdo it and have what we sufferers often call a “crash” and the doctors call “post-exertional malaise.”

In 2007 or so, I was diagnosed with hypothyroid disease. I think now that I have had hypo off and on my whole life- I had symptoms even in my early childhood. But because doctors did not take me seriously, and because the diagnostic criteria for hypothyroid were not as advanced then as they are now, I went without diagnosis. I am now treated for hypothyroid disease.

However, I had hit a wall. Since last winter, I have been craving sweets constantly, and steadily gaining weight, even though my hypo was treated. And, even when treated, I could never get below 196 pounds. I eat very healthfully (mostly veggies) I exercise, etc, but still I was at this plateau. I wrote some in this blog about my weight gain. I did a lot of research on my symptoms and I suspected insulin resistance, as it is often a by-product of hypothyroid disease.

This summer, I was tested and diagnosed with insulin resistance. I am an example of how you can do all the “right things” and still get IR due to genetic factors. I eat lower carb, I am mostly vegetarian (I eat seafood) and I exercise, but none of those were enough to prevent me from becoming resistant.

I was also diagnosed with reactive hypoglycemia, which contributed to my IR, and frankly, that really pisses me off. For years and years I told doctors that I thought I was hypoglycemic, and they all dismissed me and pooh-poohed the very idea. Eventually I resigned myself to just having undiagnosed “blood sugar issues”. No one ever bothered to test me until this summer, when I was revealed to be a classic case of reactive hypoglycemia. If I had been diagnosed with this years ago, I might not have IR now (or I might still have it. You never know.)

IR is a whole new ballgame for me. I have to learn how to manage it, including taking medication, eating particular foods in particular ways (it’s not enough now for me to eat the right foods, I have to eat them in the right combinations) and etc. On top of the other things I have to manage, like a challenging school program and my other health issues, I now have to become an expert on IR and RH. And yes, I do have to become an expert: what I have learned from being chronically ill is that doctors are not experts, and they don’t have time to be experts, so I have to be in order to take care of myself! I am often the one who tells my doctors about new research.

So, I feel overwhelmed. I have a lot to learn and to do. And I will be putting a lot of health stuff in this blog for awhile. Mainly because this is what is going on with my body! The IR has caused the distressing weight gain, and treating it might help me to feel better and will certainly help me to be more healthy: RH is less likely than other sorts of IR to lead to diabetes, and my lifestyle choices have helped, but diabetes is still a risk and I want to avoid it at all costs.  My maternal grandmother had Type 1 diabetes, her brother had hypoglycemia, their grandfather had Type 2. And on my father’s side, I come from an ethnic community (American Indian) in which Type 2 is an enormous problem!

I have always been passionate about nutrition, and always intended to write more about that in this blog, but things have been so busy! I do love this blog though, and the community it is a part of, so I will be keeping up, though sporadically. Please bear with me.

8 thoughts on “New News

  1. Living with chronic illness is challenging, to say the least. You are 100% right about needing to be an expert on your health issues. I’m glad to hear that you are solving the mystery and I hope that you will be able to find ways to manage your health and mitigate the symptoms.

    I’m sending good vibes! ❤

  2. Ms. pris

    Have you read the site or joined any of the stopthethyroidmadness groups on FB? That site got me to where I am today – thriving on T3 only. Does your doc dose by TSH or by free T3 and free T4 levels? How are your basal body temps and other hypo symptoms? Many docs under dose their patients or give them T4 only, so that people never regain their health. Also, insulin resistance and hypoglycaemia is very very often caused by adrenal dysfunction, which is inextricably linked to thyroid function. Have you had your adrenals tested?

    • Hi Lynn. Though I think the site has some problems, I do think that STTM saved my life. I was not improving on Levothroid, so I switched to NDT and I do great on it. Unfortunately, I am fairly certain that I was actually hypo off and on throughout my childhood- for example, I did not grow for about a year between 5 and 6, not at all, and no one ever figured out why. I just started growing again and life went on. I think that this lifetime of being hypo, combined with severe neglect and abuse as a kid, and some life disruption in my teens and twenties (homelessness, malnutrition, starvation) might mean I am permanently damaged, hormone-wise, at this point.

      My hypo symptoms are hard to parse out right now because of the IR symptoms. Going on NDT helped me a lot (I lost 60 pounds, got my hair back, more energy, stuff like that) but now the IR symptoms are overlapping with those. Basically, symptoms like fatigue, weight gain, body aches, brain fog, those are all symptoms of IR as well as hypo! So we will see how things work out as this is addressed.

      My doctor checks my T-3 and T-4 levels but she lets me determine my own dose. This is mainly because I went to her and said “Hi. I raised my dose on my own and I feel better at this dose, so will you prescribe it to me?”

      I am concerned though that I may have been using thyroid meds to compensate for IR and adrenal stuff. My adrenals have not been tested, because I have not been able to find a doctor who will do the saliva test. I have symptoms of both low and high cortisol, though. Once I get a good handle on the IR with IR drugs, I am going to see how that affects those symptoms, and then move on to adrenal testing. Baby steps.

      The hypoglycemia has been with me since childhood, but no one recognized it then or tested me when I was an adult.

      I think one reason hypoglycemia and adrenal problems are linked is that when the blood sugar drops too low, the body releases adrenalin to keep us from passing out.

      In the end, I see the body as one big system, rather than a series of discrete ones. My goal right now is to try to get mine back in good balance.

      Thank you very much for commenting!

      • Hi Ms. Pris

        Sounds like you know exactly what you are doing. It also sounds like we have a similar history; I was hypo for a good twelve years before I was diagnosed.

        Sorry to hear about the childhood and life traumas. 😦

        • Oh, thanks. I mentioned them because I don’t think many people know that, for example, starvation and malnutrition in youth can cause permanent metabolic damage.

          I have C-PTSD and thyroid disease is actually a symptom of that, too! I already had a genetic predisposition toward hypo, I think, as my grandmother had thyroid problems, but ongoing trauma can really mess up our hormones and sometimes it is permanent. I think that is how a lot of people end up with adrenal fatigue.

          I am pretty sure I know what I am doing WRT thyroid stuff, but with IR and RH I am a total amateur. I have a lot to learn!

          Thanks again ❤

          • “I mentioned them because I don’t think many people know that, for example, starvation and malnutrition in youth can cause permanent metabolic damage.”

            Yes, I was aware of that. I know it’s a horrible comparison, but there was actually a study done on Holocaust survivors and they found that they had HPA axis damage from being malnourished. I am very sorry to hear about all that you have gone through.

            I myself always had mild adrenal and thyroid symptoms, but, like you, they became severe after intense trauma.

            It seems like you are very much on the right path to health though…..

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