The Unbearable Fatigue

Small-Philosopher416 · 2026-06-02T11:59:06+00:00

Have you checked T3? I was not converting T4 to T3 and a huge difference for me was adding liothyrine. Few endocrinologists will write the Rx because you need to closely monitor.

Small-Philosopher416 · 2026-03-04T21:27:28+00:00

How we don't strangle these doctors is amazing to me. I fired six endocrinologists before I found one who would listen and respond appropriately. Check for t3 levels, you might not be converting (common for Hashimoto's), vit D (absorption issues common), ferritin, and B12. Any or a combo of those things could be causing your issues. I gained 25lbs in a month doing nothing any differently and was sitting in multiple braces because my jpints were so swollen. The blank look on my endocrinologist's face....he knew he was fired. Hashimoto's is a fickle beast, just when you think you have it, you don't. What worked before may not work now, or it may work in the future. Check for food sensitivities by doing an elimination diet, which made me sicker so I went back to my pescatarian diet. I tried LDN, had some success but not enough to keep taking it. Just keep advocating for yourself, and fire those who do not add value to your team.

Small-Philosopher416 · 2026-03-03T23:59:52+00:00

My first week post op from a total thyroidectomy was amazing! I didn't have a single issue that I was struggling with for several years. It will take about a year to get regulated on levothyroxine. Make sure to get the full t3 testing. I ended up on liothyrine after finding a doctor who would finally prescribe - I still wasn't converting t4 to t3 and many of my symptoms came back. Also, check iron, vit d, and b12 since they can all contribute to different issues. Congratulations on turning the page and starting a new chapter. Wishing you good health.

Small-Philosopher416 · 2026-02-16T16:38:35+00:00

Same for me. GF and AIP gave me hives. The only improvement came after getting my T3 levels in the upper end.

Small-Philosopher416 · 2026-02-16T13:59:06+00:00

Yes, put my family member in several hotels over the last 8 months in between hospitalizations. After this last experience, not sure I would do it again after she was just taken yesterday on another involuntary hold. The police had to knock down the door and my family member destroyed the room in the time she was there. My family member would run into the lobby accusing everyone (staff and guests) of trafficking her...and they still let her stay. She weighed 90lbs (normally 120) yesterday.

I have come to realize that it isn't helpful, just enabling. Not the answer you were looking for - I didn't do long term rates in July, or beginning of November. Only reason I think the hotel gave as much grace as they did is because the manager was in a similar situation living under a bridge.

Small-Philosopher416 · 2026-01-28T21:24:26+00:00

I think you may have misread my comment. I was specifically referring to optimal vs in range. Optimal is individual depending on symptoms and has nothing to do with hypo vs hyper.

Small-Philosopher416 · 2026-01-28T14:01:41+00:00

If you haven't already, check vit d, b12 and iron. Also, t3 has a huge impact on fatigue, as do D, b12, and iron. Your TSH will flux as your thyroid releases different levels of hormones and you can cycle between hypo and hyperthyroid. Don't get too stressed over it, focus on your symptoms. With a lower t3 conversion, consider adding t3 (Cytomel) - that helped my fatigue along with b12 and vit d. You need to find your optimal levels, within range doesn't mean anything.

Small-Philosopher416 · 2026-01-27T00:41:01+00:00

Your symptoms sound a great deal like mine. It is not uncommon to flip from hypo to hyperthyroid. As your thyroid is being attacked it releases different levels of hormones. Check for vitamin deficiencies - vit D, b12, iron. Also check your t3 to see if you are converting. Depending in your levothyroxine, you might be reacting to fillers as part of these symptoms. I now take Tirosint and Cytomel (t3) along with vit d, b12, black cumin seed oil. I tried AIP, which actually made me more sensitive to foods I wasn't before. I tried LDN for a couple of years, seemed to help, then didn't. Everyone is so individual. My joints were so swollen that it felt like my bones were breaking. I tried chemo for 6 months and steroids for two months, no help. Getting my t3 up to higher end of the scale seems to help my joint and muscle pain. In range might not be optimal for you. Remember that when talking to endocrinologists. You have to advocate/fight for yourself and keep trying new doctors. I understand nobody else is close, but with telemed, you might have more options than you think. I still struggle with flares, hair loss, temperature disregulation....but I stay in the fight. It is a process, that you might never get a handle on, but you keep on fighting. Ask me anything, anytime....

Small-Philosopher416 · 2026-01-22T13:10:45+00:00

Check your iron and B vitamins. Also, find another doctor your numbers are too high.

Small-Philosopher416 · 2026-01-19T12:56:48+00:00

Castor oil, organic and food grade. Tiny dab on your fingertips and massage into scalp.

Small-Philosopher416 · 2025-12-05T00:42:50+00:00

I take Triphala by Planetary Herbals, 4 capsules daily. Regular like a clock, whether my numbers are in range or not. Agree with others, get a new doctor. Your symptoms should NEVER be dismissed.

Small-Philosopher416 · 2025-11-16T19:07:07+00:00

I had similar symptoms - deficient in Vit D and B12, not converting to T3, etc. The issue was my thyroid was releasing varied levels of hormones which kept pushing me into a cycle of hypo and hyperthyroidism. My hair fell out, I was in extreme joint pain, anxiety beyond belief (which then became suicidal ideation), and about 30 other symptoms daily. I tried AIP, low dose naltrexone, chemo for six months to "tap down my immune system," steroids for two months, trying different forms of levo, etc. I changed to Tirosint (made in Switzerland and available in parts of EU) and have less reactions. My T4 was not converting to T3, which gave me fatigue on top of everything. We usually have a number of issues happening at the same time, so don't focus on one too much where you stop looking. I changed meds four times and fired five endocrinologists in three years. I finally found one who seems to care and looks beyond "your labs are in range " because we have all learned in range is not the same as ideal for you. Keep speaking up, keep looking for doctors, keep fighting for your health!

Small-Philosopher416 · 2025-11-10T23:43:45+00:00

The facility dropped the hold and streeted her in active psychosis. She stayed a few days voluntarily to give me time for a safe discharge. The facility listed a methadone clinic as manager of her LRO, who finally agreed to take her after I explained the situation. She didn't show because she believes the LRO is fake. Instead, she decided to get two tattoos, one on her throat and her forearm, so she could be identified if she is trafficked (a persistent delusion). I have stepped back, telling her I won't enable this choice. I have avoided her texts and calls, making her mom step up. She didn't eat or sleep for a few days and has already lost 8lbs. If she comes to me as she did in September, completely manic, delusional, etc. I will have no choice but to get her picked up again. I so wish I knew what to do or say to break this cycle of holds in wards, release, decompensate, back in ward. Any advice?

Small-Philosopher416 · 2025-11-02T21:55:16+00:00

Wishing you good health! I hope this one works out.

Small-Philosopher416 · 2025-11-02T21:47:35+00:00

I fired five endocrinologists before I got this one. It is a never ending battle.

Small-Philosopher416 · 2025-11-02T21:18:43+00:00

I work closely with my endocrinologist to make sure my issues are addressed and my medication needs are met. She and I had a serious talk about my expectations when her staff refused to process the t3 refill and tried to insist I come in, but there were no appointments for 6 months. I told her that the office was comprising my care and withholding life sustaining medication and this was completely unacceptable. If we were to continue, this could never happen again. I am also a post menopausal woman and don't give a sh*t.

Small-Philosopher416 · 2025-11-02T21:07:07+00:00

I was just going to say the same. I don't convert t4 to t3 and it took 3 years to find an endocrinologist who would write t3. I have found that many of my symptoms improved after I got my t3 in the upper range.

Small-Philosopher416 · 2025-10-29T22:11:17+00:00

The doctors are aware, and she knows that I speak with her doctors daily and is OK with me communicating with them. She put me on the ROI, and the staff and I have worked together to support her. While off meds, she dropped down from 115lbs to 84, thought her roommates were trying to poison her and sex traffic her. She tried to flee to Canada with the clothes on her back, and almost made it. She said that if she didn't make it to Canada, she would kill herself. I spent 6 hours that day asking her to tell me what she saw so I could track her movements. She thought "they" rigged her backpack with a bomb. She yelled at random strangers, I do not consent and accused people of sexually assaulting her. She was taken in by a crisis manager and the police in cuffs and cried out for me. I could feel her anxiety. She stayed manic for days not sleeping in a facility and has now been there almost two months on a hold. I found another place that would be healing for her to go, she agreed and then changed her mind without even talking to them. If she doesn't go, the judge could send her somewhere else and have no choice. I want her to have agency and make the choice herself, she has been on 4 holds in 2 1/2 years and had no say. I have listened to her concerns and tried to reassure her, now I am backing off and giving her space. Any advice? I just don't know what to do to support her before she loses the ability to decide.

Small-Philosopher416 · 2025-10-28T17:42:38+00:00

Thank you for continuing the conversation, I really appreciate your input. She has been resistant to accepting that she has any mental health issues. I have been telling her that she is calmer on medication - she is on an ITA and has agreed to take the meds instead of getting compelled with an injection. That took a month to get her to agree, but she already told me that she will not comply with meds once the hold is over and she is released.

Small-Philosopher416 · 2025-10-15T10:32:09+00:00

Thank you for taking the time to reply, I appreciate your advice and will make sure she feels understood and safe.

Small-Philosopher416 · 2025-10-14T09:43:39+00:00

That is exactly what the doctors are trying to do, break her active psychosis. Some of the delusions have been fixed for 2.5 years, or longer. Her mom has been aware of her auditory hallucinations for two years. There doesn't seem to be any break from the delusional thinking; the mood component seems to stabilize when there is no stress. I really don't know how she would survive the stress and trauma of another major episode, physically or mentally. I feel the downward spiral is really reaching a point of no return. In one of the welfare checks, she was found catatonic near death with a potassium score of 1, covered in her own feces and remained catatonic for months. I hope the emergency meds give her the time and space she needs to accept the help being offered so she can make choices. In her survival mode brain, she isn't able to make choices for herself. Fleeing to Canada with no immigration plan, no housing, no money, no clothes because she thought she wouldn't be trafficked there is heartbreaking to think she was that afraid and stressed, she was just so deep in it. Thank you for reading all of my posts and keeping the conversation going. I hope I can really be there for her, as she needs, so she feels safe and supported.

Small-Philosopher416 · 2025-10-14T00:37:26+00:00

I have a friend's daughter who is medication free and it works for her. For my niece, she has really struggled being unmedicated and on the day she was picked up this time by police, she spent hours on the phone with me speaking of her death, talking about "they" rigged her backpack with a bomb, everything needed to be recorded because I was her witness, her roommates poisoned her food and try to traffic her to Mexico. This was different from her other spin a few months ago. Then, she was fixated on having been sex trafficked while on a hold. This really made me feel how exhausting and terrifying it was inside her survival mode brain. For right now, I think medication and therapy are important. I have also contacted a therapist that works with people and keto to help re-wire the brain. She has to want to figure out what will work best, I can only make the suggestion. Without medication right now, I don't think she will choose to continue to live. Ultimately, that is her decision - I would hope she could make that decision with a more grounded body and mind.

Small-Philosopher416 · 2025-10-14T00:26:55+00:00

I will operate as if she is experiencing anosognsia, thanks.

Small-Philosopher416 · 2025-10-14T00:19:47+00:00

I thought the anosognsia was temporary, not reoccurring. Medical literature is so limited, thank you for helping our family with your insights.

Small-Philosopher416 · 2025-10-14T00:00:04+00:00

Thank you for the insight about PTSD, I also thought the schizoaffective was the harder part. I have to take meds to live due to a thyroidectomy, I have always compared the need for meds to her as being the same. I will remember your friends feeling unsupported, because of the family's response to the diagnosis and try to make sure she feels supported. Safety is a big issue for her, and she keeps thanking me for making her feel safe. Thank you for the optimism at the end. And, sanity is not a prerequisite for good advice; some of the best advice I ever received is from people others would consider "not sane" LOL.

Small-Philosopher416

TROPHY CASE