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Unexplainable Weight Gain and GI Symptoms with Hashimoto's
After 10 years of struggling to find answers for my GI symptoms and sudden consistent weight gain (100+ lbs), my Dr and I have run out of ideas to explore...
Personal Info:
22 year old female. Currently taking 125 Mcg levothyroxine (Hashimoto's) , 100 mg Zoloft (Anxiety)
Medical Background:
At age 1 I was diagnosed with several severe food allergies (peanuts, tree nuts, bees, dairy, barley) and eventually outgrew all but the peanut and tree nut allergies. Diagnosed with Hashimoto's disease at age 10. Started Synthroid . Have always had irregular menstrual cycles +/- severe cramping and heavy bleeding, in 6th grade was diagnosed with PCOS (at age 16 I was undiagnosed with PCOS by a different Dr.). Around 6th grade severe GI issues began to emerge leading to cramping and severe diarrhea after meals, sometimes not even allowing me to finish eating. I absolutely cannot "hold it". At age 17 I had a colonoscopy and biopsies taken which revealed no obvious causes for the GI symptoms. During college (sophomore-senior year) I gained over 100 lbs even while maintaining an active lifestyle walking/biking and working a manual labor type farm job and occasionally going to the gym. This weight gain was initially blamed on starting antidepressant medication (Prozac) but did not subside when medication was switched and/or no longer used. 2 nutritionists stated my diet was not to blame for the weight gain either. In addition, GI symptoms are now even more prominent and include frequent heartburn. I have gone through several elimination diets to narrow down possible food causes of these symptoms, none so far have brought much (if any) relief. So far I have avoided gluten, dairy, cane sugar, processed sugars with no success. I have been tested several times for Cushing's (negative results) and my thyroid panel is within my normal range.
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@kayabbott You certainly have many medical condition to deal with. What is your secret to managing all of them? And I really admire you for continuing to ride your bike! I had to give up my bike when I got my my autoimmune disease because it affected my brain and balance. You are a very strong woman!
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5 ReactionsThanks, but they are mostly controlled by synthroid, not eating gluten or NSAIDs, and escaping stress through exercise, reading, and such (stress is inflammatory). I don't have any pain, other than a few creaky joints. The reactive arthritis has been dormant for 30+ years and MGUS is mostly asymptomatic. I got glutened from a "GF" group dinner on a March bike tour, and a cyclist spread covid, so I had a double cytokine storm. I still have long covid (LC) so use an exercise bike in short intervals with rest between cuz of fatigue, do PT and balance workouts, and weight training for muscle strength isn't impacted by LC. We all have negatives in our lives, it is important to work around them and not live in them. Thank you for being a mentor; I think this site helps a lot of people heal or vent their frustrations.
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7 ReactionsI totally agree with your interpretation of where your TSH should be. Many Drs look at TSH results and if anywhere in the normal range they accept it even if the patient is symptomatic and feels awful. I too feel best when TSH is close to hyperthyroid levels. You are dealing with a lot and seem to be managing well.
Keep up the good work and good attitude! I’m trying to do the same!
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6 Reactions@kayabbott
I’m glad that you get your hypothyroidism treated by your symptoms and not just numbers.
Everyone is not the same and your body will let you know when something is off.
Also, the absorption and metabolism can also be different in different patients.
One of my daughters has Hashimoto’s and celiac disease- well controlled.
Another daughter also has celiac disease and trying to get diagnosed with Hashimoto’s. She is very symptomatic and TSH numbers are climbing. Her regular doctor doesn’t seem to have much knowledge in this field- she will see an Endocrinologist in a week.
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3 ReactionsI had ever increasing thyroid auto antibodies and many symptoms but my rheumatologist and primary doctor never referred me to an endocrinologist. Wasn’t ever told I officially had Hashimoto’s (mother had it and sister had thyroid cancer). I had a thyroid nodule I found on my own CT scan for cervical spine surgery. After lobectomy of the suspicious nodule, the pathology confirmed Hashimoto’s and only then did I get prescribed levothyroxine for hypothyroidism. You shouldn’t need to have surgery to get treated for Hashimoto’s. Your TSH level that is optimal for you may be much lower than the maximum of the “normal” range. I would not be able to get out of bed if my TSH was over 2 and feel much better when TSH is lower than 1.0 (ideal would be ~0.5). If you are not getting relief of symptoms to help you function optimally, pursue other doctors who understand optimal TSH levels tailored to their patients’ symptoms vs. “normal” reference ranges and no treatment if you fall into that range. I have suffered for 7 years unnecessarily and wasted too much money trying to get answers and treatment to improve quality of life. This should be a simple solution for those with thyroid autoantibodies and symptoms and family history of Hashimoto’s. We wonder why our healthcare system is so expensive with poor health outcomes. This is a simple example of that. Are doctors, medical practices, insurance companies, pharmaceutical companies, employers, government, etc. motivated and incentivized to really care about our health and quality of life? Are we getting value from what we are paying for with our insurance premiums, deductibles, copays and coinsurance and time spent dealing with the healthcare system??!! My experience is definitely NO! Be a strong advocate and voice for your own health and do not settle!
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10 ReactionsGreat that she is seeing an endocrinologist. Most doctors just seem to want TSH within range. My TSH ramped up to 1.76 after a new doctor decreased my synthroid. I switched doctors and mentioned all my hypothyroid symptoms, and she just said she thinks the symptoms are something else. I had to get up to 3 with more documentation before I got an increase. I'm a research scientist and doctors still don't always listen. It is important to research one's health issues, because medical staff doesn't always have the time or relevant expertise.
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4 Reactions@kayabbott
My daughter has quickly learned to advocate for herself. She lives abroad where they have a national health insurance- not much motivates some doctors.
I used to practice pediatrics. There were many times of course that I didn’t know how to proceed with a patient. I was lucky to be able to pick up the phone and talk to a specialist or I would refer directly. Seems to me some doctors would feel embarrassed to admit that they don’t know everything. So tiresome!!
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4 Reactions@dlydailyhope
I’m sorry you had to waste so much time! What I see here is the same pattern- many doctors have limited knowledge in treating thyroid disorders and when to refer to a specialist. Of course, thyroid disorders are more common in women.
My daughter who lives abroad is now fighting to get treatment for hypothyroidism/ Hashimoto’s.
I’m hypothyroid too and I’m lucky to have doctors that understand when to treat.
I have wasted so many years with GI problems but that’s another story.
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3 ReactionsI do think women’s issues and symptoms are not taken seriously which delays treatment and causes unnecessary suffering. Men seeking help with similar symptoms may receive better and more timely help with diagnosis and treatment and not told “it is all in your head!” Our money paid for health insurance premiums and copays/coinsurance is the same so we should receive the same treatment. Bias in healthcare access and treatment is unacceptable. There is patient bias and discrimination (gender, race, age, socioeconomic status, education level, etc.) that needs to stop now! Any hint of disrespect, run!
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4 ReactionsI just wanted to say that I’m sorry you’ve suffered for so long. I too am suffering, no taste and smell for 10 going on 11 months along with no hunger. I could easily go without eating, but make myself eat. You mentioned GI problems, I had 18” of my large colon removed due to severe diverticulitis in April of 2022. Since then I’ve developed Hypothyroidism/Hashimoto’s. Taking 112mcg of Synthroid and 5 mcg of Cytomel. I’ve cut out Gluten, Soy and Dairy due to the Hashimoto’s and feel better. I also had a food allergy test done and found out about so many foods that I can no longer eat. I’m beginning to feel better, but fear that I will never get my senses back. It’s really quite a dull life!
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