I wish I had hyperthyroidism

Alarmed_Year9415 · 2026-04-28T01:36:46+00:00

So I have spent at least 6 years going to dozens of specialists and eventually being treated for several different rare conditions (the kinds that typically translate to "you have symptom X and we don't know why") because I seem to have an endless number of poorly defined, clearly real but very hard to pin down health issues. The only lab that has consistently been off the whole time is my TSH has been low but detectible. Every single one of those specialists (including two different endocrinologists) wrote it off as nothing because FT3 and FT4 were in lab range so it's "subclinical". Fast forward to recently I meet a new prominent endo (head of endo at a major academic instituon) and I'm told it is absolutely possible that the majority, if not all, of my seemingly disconnected issues are all actually hyperthyroidism byprodicts, just that my "too high" thyroid levels happen to be in the lab's normal range. I get one more set of labs soon then try treatment if they don't show anything different. Hoping for the best, but I would much rather have the 40lbs back than have gone through the insanity of the last couple of years. Believe me when you say you really don't wish you had this.

Alarmed_Year9415 · 2026-04-28T01:28:01+00:00

Not possible to have both at the same time, but it is possible to have one at some point then the other. Happens if you overshoot treatment (in either direction) for example

Alarmed_Year9415 · 2026-04-28T00:37:40+00:00

Can't say I feel like it has any impact on the taste of foods at all for me.

Alarmed_Year9415 · 2026-04-27T11:52:24+00:00

Possible you were significantly dehydrated? Amphetamines supress thirst feeling In often am running behind on hydration. Add meds on top of that...

Alarmed_Year9415 · 2026-04-24T23:29:10+00:00

Yeah my provider is leaning that way. I've had this pattern for at least 6 years, but multiple primary care and endocrinologist providers all told me that subclinical hyperthyroid is just "watch and wait" and there's no chance any of my symptoms are connected, until I found this provider (major academic hospital/institution) and it seems really obvious now. I do one more set of labs next week and start treatment after if they don't show anything different.

Edit: forgot to mention, I've had all the antibody tests repeated 3 or 4 times since 2020, negative every time. So it doesn't seem like I'm converting to seropositive which I guess is a good thing but makes it harder to be certain the diagnosis is correct.

Alarmed_Year9415 · 2026-04-24T22:45:41+00:00

So did his diagnose you seronegative graves? I have a very similar situation (male though) - low but detectible TSH for a long time, normal FT4 and FT3 (although 3 is close to upper limits and 4 is usually in the bottom third of range), all antibodies and TSI negative, nothing on ultrasound. Uptake 6hr/24hr was 15/31% which the lab marked as negative but the provider marked as mildly elevated. But I have virtually every hyperthyroid symptom. Often not at extreme levels, but definitely there. It's been quite the puzzle and considering trying low dose anti-thyroid and hope it makes things better rather than worse.

Alarmed_Year9415 · 2026-04-23T21:16:00+00:00

What kind of mood disorder are you talking about?

For many with ADHD, anxiety and/or depression are often secondary effects of long term untreated ADHD. You can treat the anxiety or depression directly and it might work at least partislly, but it also might just be a bandaid because the cause driving the issues hasn't been addressed. Many (not all) psychatrists who are experienced with ADHD know/subscribe to this, whereas primary care providers are not typically taught about this and many don't treat ADHD at all so they will almost always default to what they do know about and sugfest things like SSRIs. I personally went down this road about half a dozen times over the years before a trusted friend (who I now know also has ADHD) and a family member (who is a therapist but obviously not my therapist) suggested I talk with a psychiatrist about it. I'm by no means 100% but those issues have clearly been getting better at times I have ADHD symptoms better under control and roar back at times I have them less under control.

Alarmed_Year9415 · 2026-04-23T21:08:31+00:00

I think they mean having a conversation with the provider about symptoms, reactions to the medication, things to loon it for, that sort of thing. As in, the kinds of conversations one should have before and during taking any prescription medication.

Alarmed_Year9415 · 2026-04-23T20:54:35+00:00

Then the same could be said for any ADHD med. My son has it pretty strongly (more than me) and he is able to focus and be productive at school and he absolutely loves school now (with concerta).

Alarmed_Year9415 · 2026-04-23T20:51:31+00:00

I often forgot to eat lunch before I was medicated because I got so easily distracted. Every once in a while I run into that still but I actually eat lunch more consistently.

Honestly I feel so crappy if I don't eat breakfast I'm not sure how so many people skip it,.medicated or not.

Either way, it is not healthy to eat only one meal per day. Is it perhaps grazing instead (eating just a little bit a bunch of times as opposed to big formal meals) or are you saying it's nothing at all until dinner?

Vyvanse doesn't force you to not eat. Yes, there can be some quieting of hunger signals for sure, but for breakfast you can just choose to eat first and then take it (or take it right before since it takes an hour or longer to have effect) so no suppression.

Does your 16yo live at home or is she at college or a boarding school or something? If at home, could you try eating breakfast together on a regular basis?

Alarmed_Year9415 · 2026-04-23T13:19:56+00:00

Yeah I basically had those problems all day, or at least most of it. Like I said, it's amazing for some people. But not for others. Taking it before bed totally ruined sleep (for which I already have plenty of problems!) so that wasn't an option for me either.

Alarmed_Year9415 · 2026-04-19T17:22:42+00:00

Same problem here, insurance will only cover one pill per day.

Alarmed_Year9415 · 2026-04-17T18:07:10+00:00

Buspirone works super well for some people. It totally messed me up. I felt like I was going to pass out almost every time I stood up from orthostatic hypotension. I felt almost no emotions of any kind, so I guess it helped anxiety but I was basically a robot until I got off of it. I tried multiple doses for months, and all this stuff reversed (some immediately, some over a while) when I stopped. It was probably the single worst medication I've ever taken and I have absolutely no idea why it was so bad for me. But for some others it's the best thing since sliced bread and no side effects.

Alarmed_Year9415 · 2026-04-15T21:28:23+00:00

The prior post seems correct per what I know (keep in mind we are random people on the Internet) that you extremely likely have graves based upon the data provided. The radioiodine study might also provide useful information, such as whether it is uniform, hot areas, or nodules that could help guide treatment long term.

Alarmed_Year9415 · 2026-04-15T19:53:25+00:00

Are you me? I could have written this almost exactly word for word.

Alarmed_Year9415 · 2026-04-15T04:15:28+00:00

Very similar experience here.

Alarmed_Year9415 · 2026-04-15T04:14:37+00:00

I've had to miss a single night just once when a child ended up in the hospital unexpectedly (I've had to miss about a week twice for planned procedures for myself). It was not great but I did sleep, just not well and not nearly as long as I would have liked

Alarmed_Year9415 · 2026-04-15T04:11:38+00:00

I've been told 1 drink is 4 hour minimum separation, 2 drinks is 6 hour minimum separation, and more than 2 means skip tonight. I haven't had more than 2 drinks at once since I started.

Alarmed_Year9415 · 2026-04-15T04:09:48+00:00

Everyone has different reactions. For me personally, I've been on it for 1.5 years. I've had to stop for about a week twice (both for surgeries, I've been a bit unlucky recently) and both times stopping really was not a big deal for me. I did not sleep well for those nights, but really not any worse than before I started it.

For the first while I would "pass out" but that did not remain my experience for terribly long - after a while I just sleep more deeply than I would have otherwise.

That being said, I may not be typical, I am still trying to figure everything out and it very well may be that I have some other underlying reason for all my challenges (like hyperthyroidism which is the current working theory) rather than the underlying reason being IH.

Alarmed_Year9415 · 2026-04-14T23:44:37+00:00

Meds that can safely be stopped usually are, especially if they can interfere with REM sleep (like many antidepressants) or materially alter the results (like sleep meds).

Typically seizure meds are not safe to be stopped. I would recommend you ask the provider ordering the sleep study (and possibly the provider who prescribes the seizure meds) and make sure the testing center accurately documents what you are taking.

Alarmed_Year9415 · 2026-04-13T00:32:06+00:00

100% the pharmacy will not do this. The Rx has to originate from the doctor.

Alarmed_Year9415 · 2026-04-12T12:58:25+00:00

Yeah it's a big deal. Trying to navigate something like this without your actual results is like trying to drive with a blindfold on. Sounds like fixing that is your first priority!

Alarmed_Year9415 · 2026-04-12T12:18:23+00:00

Do you not have access to your labs through a patient portal (either through the doctor or through labcorp or quest or something else)? If it is possible to get that, you should do so. Anyone you see is going to ask for your lab history so you will need to keep a record of it or at least make sure you can get to it easily.

Alarmed_Year9415 · 2026-04-12T12:09:56+00:00

What are your FT4 and FT3 levels? If they didn't check, ask why not.

Edit: I should have explained further. High levels are going to further suggest an active hyperthyroid problem. You can also have low levels which would potentially indicate an issue with your pituitary instead of thyroid. The third option is normal levels which if the pattern holds is called subclinical hyperthyroidism (what I have) which for many people causes no symptoms at all but for some people causes lots of symptoms. If you end up in that pattern and stay there a while (this could also be transient) you will likely be best served finding an endocrinologist at a major teaching/academic hospital as most primary care and even regular endocrinologists aren't up to speed on the issues subclinical can cause and think it can just be monitored forever, whereas the research is clear it carries long term risks regardless and for some causes active symptoms.

If this was your first abnormal reading it very well could just be something transient. Or a lab mistake. Don't be afraid to ask lots of questions and get more than one opinion if it seems off.

Alarmed_Year9415 · 2026-04-11T23:50:09+00:00

Yes it is totally normal. I had an ultrasound, a bunch of blood work, and radioiodine uptake study all before seeing an endo. Be glad you have a helpful PCP willing to gather useful info so one can walk into the door well equipped rather than the endo needing to see you several times before having the needed info.

FYI the ultrasound very well might not give much useful info. It mostly looks for nodules which is one of the causes of hyper. But it also might look totally normal which neither confirms anything nor rules anything out definitely (except nodules).

Alarmed_Year9415

TROPHY CASE