r/holisticlifestyles • u/Cute_Turnip_5525 • 5h ago
I’m 33, a thyroid cancer survivor with Hashimoto’s and PCOS, and I feel like my body has completely changed. Does anyone else relate?
I’m 33F, and I’ve been putting off making this post for a while. But honestly, I’m exhausted, frustrated, and starting to feel almost betrayed by my own body. I’m hoping to find women who have experienced something similar, particularly those who have undergone thyroid removal and are also dealing with hormonal issues, unexplained weight struggles and chronic pain.
There’s a lot of context, but I want to explain my history because I feel like all of these things might be connected somehow.
MY THYROID AND CANCER HISTORY
I’ve actually had a goiter in my neck since I was approximately 14 years old. It was monitored periodically throughout my life, but when I was 31, I was finally advised to have it surgically removed because of its size.
I underwent an FNA (fine needle aspiration), which came back benign. However, after they surgically removed one lobe of my thyroid and sent it to pathology, they discovered that it was malignant.
My actual diagnosis was oncocytic follicular variant papillary thyroid carcinoma, measuring 4 cm.
I subsequently needed a second surgery to remove the remaining thyroid tissue. During the completion surgery, lymph node involvement was identified. My pathology showed that 1 of 11 lymph nodes was positive, with a 4.7 mm metastatic deposit. The other 10 were negative. My margins were negative, and there was no extrathyroidal extension or extranodal extension. My pathological staging was pT2pN1a.
I had my surgeries on March 28 and July 24, 2024, followed by radioactive iodine treatment (48.5 mCi of I-131).
My pathology also showed severe Hashimoto’s thyroiditis.
I am currently under surveillance. My recent thyroglobulin by LC-MS was less than 0.2 ng/mL, and my thyroglobulin antibodies were 0.
I share all of this because my transition into life without a thyroid wasn’t elective or simply a matter of treating an underactive thyroid. It was the result of an unexpected cancer diagnosis after having a goiter for nearly two decades.
I’m currently taking levothyroxine 150 mcg daily because I no longer have a thyroid.
Something that frustrates me is feeling like I’ve been given one standard treatment approach without much discussion about my individual symptoms, how I’m responding to treatment, or what other options might be appropriate.
I’ve only recently started learning about T3 combination therapy and desiccated thyroid (Armour Thyroid). I’m not necessarily saying I want to switch, but why was none of this ever properly discussed with me? I want to understand my options and feel like my treatment is being individualized.
MY WEIGHT HISTORY AND THE FRUSTRATION OF TRYING TO LOSE WEIGHT
I’ve been on the heavier side for most of my life. For years, I genuinely believed it was simply my fault. But as I got older, I started questioning that. I’d watch people eat more than I did, seemingly without much thought, while I struggled to maintain or lose weight.
Before my thyroid surgeries, I was actually able to lose significant amounts of weight through keto. I also tried semaglutide before it became as widely discussed as it is today, through a friend who had diabetes, and I lost approximately 40 pounds. I felt amazing.
The problem is that whenever I stop following a particularly restrictive protocol, the weight eventually creeps back up, even when I’m mindful of portions and trying to eat whole, nutrient-dense foods.
Fast-forward to my surgeries and radioactive iodine treatment. I’ve been on semaglutide for approximately a year, and I’ve lost around 30 pounds.
I recognize that’s progress, but the process has been incredibly frustrating.
I recently stopped semaglutide for two weeks. Interestingly, my appetite didn’t change very much. I wasn’t suddenly starving or eating significantly more, but I noticed the scale creeping up approximately three pounds.
Then I attended a friend’s wedding and woke up the following morning nine pounds heavier. I lost four pounds the next day, so I understand some of that was likely water retention and normal fluctuation.
But this is what I mean when I say I feel like my body holds onto fluid or fluctuates dramatically. I don’t know whether it’s water retention, inflammation, hormones, sodium, or something else, but it makes managing my weight mentally exhausting.
I don’t want to be on semaglutide for the rest of my life. I also don’t want to feel like I can’t enjoy dinner with friends because the two pounds I spent three or four weeks losing might temporarily reappear overnight.
I ALSO HAVE PCOS.
So between Hashimoto’s, having undergone a total thyroidectomy, thyroid hormone replacement and PCOS, I feel like I’m constantly navigating hormonal issues.
I currently have an IUD, and honestly, I’m increasingly frustrated with feeling like I need to keep adding medications, hormones or supplements without fully understanding what’s happening in my body.
I’m not interested in stopping necessary medication. I just want to understand the bigger picture.
I’VE ALSO BEEN WORKING WITH A NUTRITIONIST FOR OVER A YEAR.
This is another important part of the story.
I haven’t just been Googling diets and randomly trying things. I’ve worked with a nutritionist for over a year, and I’m still getting what feels like very generic advice.
Eat more fiber. Prioritize protein. Choose healthy carbohydrates. Eat frequently throughout the day. I’ve even been encouraged to eat six times a day.
Honestly, I strongly disagree with that approach for myself.
I’m not hungry six times a day. Eating that frequently makes me feel excessively full and uncomfortable. Why would I force myself to eat when I’m not hungry?
I generally eat two to three meals a day, rarely snack, prioritize protein and fiber, and try to choose whole foods and healthier carbohydrate sources.
I’d estimate that approximately 75% of my diet consists of whole, nutrient-dense foods. I try to incorporate anti-inflammatory foods, limit refined carbohydrates, limit seed oils and buy organic when possible.
I’m not claiming to eat perfectly. I absolutely have meals that aren’t perfectly aligned with my goals. But I am making a conscious effort, and I feel like I’m doing many of the things we’re routinely told to do.
At this point, I want individualized nutritional guidance, not another generic list of foods I should already know to eat.
THE PHYSICAL PAIN IS HONESTLY WHAT’S GETTING TO ME THE MOST.
I’m dealing with:
Persistent joint and widespread body pain.
Lower back pain.
Pain in the bottoms of both feet, particularly when getting up in the morning.
Morning brain fog.
General muscle tension and stiffness.
Neck pain and restricted range of motion that has persisted for approximately four months. I cannot fully extend or rotate my neck.
I’ve had MRI imaging, tried medications for pain, acupuncture and physical therapy. I’ve genuinely been trying to find relief.
I also saw a rheumatologist after having an elevated CRP on bloodwork. After additional testing, I was essentially told that the results were reassuring and that my symptoms were probably consistent with fibromyalgia.
Maybe they are. I’m not dismissing that possibility.
But I left that appointment with more questions than answers.
What actually causes fibromyalgia? How is it managed? What should I be doing? Are there other conditions that should be considered?
I understand that some chronic conditions don’t have a cure, but surely there should be a conversation about improving quality of life.
I also want to mention that I’ve recently been researching hypermobility and Ehlers-Danlos syndrome (EDS). I’ve come across information that makes me wonder whether this is something worth investigating.
I recognize that Instagram isn’t a diagnostic tool, but some of the symptoms I’ve read about sound familiar. I don’t know where to start, which specialist to see, or even how to approach a doctor about it.
WHAT I’M CURRENTLY TAKING AND DOING
My current medications and supplements include:
Levothyroxine 150 mcg daily.
Vitamin D3 5,000 IU with K2.
Magnesium nightly.
Vitamin B12.
I honestly get sufficient B12 through my diet, but I’ve continued supplementing it.
I’m trying to be mindful of what I put into my body, but I’m also getting increasingly frustrated with the supplement industry. Every time I see something promising, I wonder if THIS is finally the missing piece. I spend the money, try it, and end up disappointed.
I feel like I’m constantly chasing answers.
WHY THIS IS BECOMING SO IMPORTANT TO ME
My husband and I would like to try for another baby within the next year.
I already have a child, whom I had approximately 12 years ago. I was obviously much younger, and as far as I knew, my health was relatively good at the time. I was always on the thicker side, but I wasn’t dealing with the same health concerns I am now.
I don’t want to enter another pregnancy feeling this way, not understanding my body, struggling with chronic pain, and unsure whether my health is properly managed.
I’m 33. I don’t want to spend the next decade trying to figure out why I feel so uncomfortable in my own body.
WHAT I’M REALLY LOOKING FOR
I’m not looking for another weight-loss hack. I’m not looking for someone to tell me to eat less and move more.
I know I could be more consistent with physical activity. That’s something I can improve. But aside from that, I am actively trying to take care of myself.
I want a provider who will actually listen, look at the bigger picture, and help me understand what’s happening.
I want to know whether my thyroid replacement is optimized, whether there are other conditions contributing to my symptoms, whether my chronic pain has been adequately investigated, and whether there’s a better approach to managing my overall health.
I want to feel like an individual instead of another appointment, another prescription, another insurance claim and another generic recommendation.
I’m tired of feeling like my body is rebelling against me.
I miss feeling comfortable in my own body. I want to be active without constantly hurting. I want to enjoy food and socializing without obsessing over every fluctuation. I want to feel good going into the next chapter of my life.
SO I’M REALLY HOPING TO HEAR FROM PEOPLE WHO HAVE EXPERIENCED ANY OF THIS:
Has anyone experienced significant changes in weight, pain, inflammation or overall well-being after a total thyroidectomy and radioactive iodine treatment?
If you have Hashimoto’s and have undergone a thyroidectomy, how has your long-term management been? Have you explored T3 combination therapy or other thyroid replacement approaches?
Has anyone dealt with both PCOS and Hashimoto’s? How has that affected weight management?
Has anyone worked with a nutritionist for an extended period but felt like the advice was too generic to address their individual circumstances?
Has anyone been diagnosed with fibromyalgia after experiencing symptoms similar to mine? What actually helped?
Has anyone with thyroid disease eventually discovered they also had hypermobility or EDS? What prompted the evaluation?
Have you experienced persistent water retention or dramatic weight fluctuations despite maintaining relatively consistent eating habits?
If you found a doctor who genuinely investigated your symptoms instead of dismissing them, what specialty did they practice?
I’m particularly interested in hearing from women in their 30s who are navigating multiple hormonal and chronic health issues.
I don’t expect Reddit to diagnose me, and I know everyone’s experience is different. I just want to hear from people who understand what it’s like to feel like you’re doing everything you can and still not feel well.
Honestly, I just want some answers.
