Struggling with thyroid regulations

Posted by mysticcorgi @mysticcorgi, Jan 19 4:03am

Is there anyone like me out there? I am really struggling to get my thyroid disorder on the right path and there are days where I just feel like a stranger in my own body.

For context, I am a 32 year old female and felt like as soon as I hit my 30s my health went south. I was first diagnosed with hypothyroidism in January of 2024 after having a menstrual cycle that lasted me 10 months straight and after two years my cycles are still out of whack! My mother has thyroid problems as well so I knew it could be possible that I could end up with them as well but she has been stable on her meds for decades and my body just keeps fighting me. I have been on "every color of the rainbow" so to say for doses of my levothyroxine since diagnosis but my TSH levels just always go haywire. I was diagnosed at a 8.3 and after months of titration and maaaany lab draws I was able to come down into the 3.0s but would seems to always creep back up. I have been on my dose of 175mcg for about a year now but my levels still fluctuate! I was at a 5.4 in March then jumped up to 11.7 when I was drawn in November now I was just drawn this past Friday and I'm now OVER ACTIVE at 0.12! I always take my medication properly (in the AM, empty stomach, no soy, no calcium or anything else that can interfere) yet these highs and lows have been non stop for two years 🙁 I do have an upcoming appointment with my endocrinologist this week but it always seems to be the same song and dance of "let's see how the labs are next draw".

Any advice from others who have been down this looong windy road of continuous lab draws and dose changes? How long did it take before your body regulated?

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minnesota10 | @minnesota10 | Jan 19 8:58am

Have they checked your parathyroid? It is located on the backside of your thyroid. If that gets out of whack, it could affect many different things in your body.

mysticcorgi | @mysticcorgi | Jan 19 11:07am

In reply to @minnesota10 "Have they checked your parathyroid? It is located on the backside of your thyroid. If that..." + (show)

@minnesota10 hello! Yes my parathyroid was checked at diagnosis and was within normal limits. But i should ask my new endocrinologist about perhaps doing a retest since things still seem off!

pickleball77 | @pickleball77 | Jan 20 7:31am

Have them do a complete thyroid function test. This is like 10-11 different things they check. I had low NORMAL TSH but hypothyroid symptoms for a year and a half. They kept saying that I couldn't be having these symptoms because my TSH was normal. When they did the full thyroid function test, 7 of the 10 numbers were off. The worse one was the reverse T3. I was suffering from a thyroid conversion syndrome. I am now taking a natural thyroid supplement for this along with my Synthroid and my TSH yesterday was 1.38 which is perfect. My symptoms are gone and it only took 4 months to fix!!

monarchbfly | @monarchbfly | Jan 29 11:06pm

In reply to @pickleball77 "Have them do a complete thyroid function test. This is like 10-11 different things they check...." + (show)

@pickleball77 what were your symptoms that got fixed?

pickleball77 | @pickleball77 | Jan 30 8:05am

My worse symptom was my “frozen “ metabolism. For a year in a halfI would eat between 1500-2000 calories with intermittent fasting and could not lose an ounce. Even with biking 60 miles a week and playing pickleball. I had terrible muscle weakness and pain, constipation, extreme fatigue and tenderness in my salivary glands. I feel like a new person after seeing a functional medicine doctor and taking supplements. She did not change my Synthroid at all!!

wmelenitsky | @wmelenitsky | Jan 31 12:10pm

I had the same issue. My primary Care Physician couldn't figure it out. He referred me back to my Endocrinologist. Like you I was constantly had extreme fatigued and couldn't loss any weight. My doctors raised and lowered my my Synthroid. I have been taking supplement. Primarily been taking Vitamin B-12 for the fatigue to NO avail. They ran blood tests to determine if I had an infection or low in Vitamin's. All came back normal. My primary doctor recommended I see my Cardiologist. Last time this happened it turned out to be a blocked artery that feeds the heart muscles. Three stints later and I feel better.

Cheryl, Volunteer Mentor | @cehunt57 | Jan 31 7:18pm

A GOOD endocrinologist is worth their weight in gold. Good nephrologists are helpful too. I have both. My endocrinologist monitors my thyroid. My nephrologist monitors parathyroid. They are in the same healthcare system and are on the same page in regards to my health and treatment plan.

lkirnbauer | @lkirnbauer | Feb 1 8:17am

In reply to @mysticcorgi "@minnesota10 hello! Yes my parathyroid was checked at diagnosis and was within normal limits. But i..." + (show)

@mysticcorgi Ask your doctor to run a full Thyroid Panel. My endo always runs TSH, T3-free, T4-free, TPO Antibodies and Reverse T-3. Good luck!

suzyq99 | @suzyq99 | Feb 8 9:11pm

Hi misticcorgi: Just suggestion. I was told that sometimes generic levothyroxine can slightly change and it is just enough to sometimes change in dosage to change one's level of thyroid versus if take a brand name. Maybe this is the case for you? I do not know. Just a suggestion. I myself have and wondering if one's level of food and exercise or lack thereof, and or if one immune system such as about to get a cold or flu or such, even if one does not end up with said flu or cold--- if those things, along with life stresses make one's thyroid level fluctuate? I tend to believe this is possible--- Possibly these are things that could be making thyroid fluctuations. Hopefully thyroid levels get regulated and right dosage and feel regular in 'normal range' soon. Best regards.

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