To those hypothyroid: insist on med dosage that makes you feel normal!

yirara

I've had hashimoto for ages, left untreated for a very long time, managed to lose weight because the influence on energy expenditure is rather low.

Since about February I've not been feeling well. Exercising failed, the bit of weight I wanted to lose didn't happen because I didn't log and ate tons of sweets. Note: weightloss did not not happen because my body clinged to the weight, but because I was feeling constantly hungry and I forgot to log. Add to that massive constipation, which made exercising and sleeping well more difficult.

After realizing what went wrong (it's difficult to realize you forget thing if you forget you forget things, right? 😅) I went back to my gp about 6 weeks ago and said I think thyroid meds need to be increased. He did it without blood test and said to come back when I feel restless or unwell. We're treating symptoms, not numbers. Woohoo! Anyway, passage is working properly again, head is working, exercising is working. And adhering to my (not extreme) diet is also working, I'm not hungry. Basically I'm losing at the expected rate. And yes, logging is so easy again.

What I want to say: if you're hypothyroid and you think you're not feeling fine then talk to your gp. I know many of them treat numbers, not symptoms and it might be an uphill battle. But there's totally no reason to feel sick or tired when being hypo.

Note: please don't upvote hugs. I'm fine, and happy.

FibroHiker

I wa diagnosed hypothyroid 14 years ago. I've found little correlation between how I "feel" and my thyroid levels. One year I went back to my MD three times to have my levels checked because I was exhausted every day. With each check, my levels were within the typical range.

I also found that I could lose weight while my hypothyroidism was untreated. My first big weight loss happened when I didn't realize I had a long term problem. I had an appointment with my MD and with the blood work he found my thyroid levels were low. He advised me to go see an endocrinologist but I brushed it off. Then when I went back 18 months later and when he found out that I didn't go to the specialist, he made an appointment for me. The endocrinologist's labs showed that I was still hypothyroid and started me on medication. Meanwhile all this was happening, I lost 55 lbs. and maintained the loss.

My weight has more to do with my eating habits and how much I move than my lab results.

Increasing medication without checking thyroid levels is dangerous for the body. If the levels are too high (hyperthyroid) it can stress and damage the heart.

Over the last 14 years there were times I had great energy and times I was really fatigued, but that was usually due to my food choices and my lifestyle.

yirara

No worries, I'll get a blood test next week to see where I am. I feel fab not with my levels in range (which is a TSH of up to 4.5 here) but with a TSH below 2, plus lets be honest: the free values don't get tested in most places, and they are probably a lot more important than TSH. And straining your body constantly because not enough hormones is as bad for you as too high. So far my dosage is not too high I'd say. I'm much more relaxed than before, my HR goes down at night as expected instead of leaving me in stress mode all night because dosage is too low, and I'm able to do my work.

cmriverside

hm. I'll hug you if I want.

But I didn't cuz you asked. . .and I'm not a hugger.

I've been on levo for 30ish years. I feel over-treated most of the time, but my heartrate is low. Restless is my constant state. Still okay on bloods. It's not a very exact science, in my opinion. As far as weight, I lose weight pretty easily and I eat waaaaaay over the amounts suggested by online calculators. Like 30% over. I wish I could cut back on the meds. It seems to be a delicate balancing act.

yirara

No, not hugging please! @cmriverside 😅

Yes, it's totally not an exact science. I start to feel absolutely miserable when my TSH is above 2. Try to explain that to a GP who thinks a TSH of 12 is still normal (that was a long time ago in a galaxy far far away). My HR does speed up and I do get the sudden urge to clean my flat when I take too much. Thus yeah, it's a very fine balance between being over and under.

I'm currently looking at whether I can use HRV from my sports watch during sleep as a rough indication of where I'm at. I know my HRV remains super low all night when I'm hypo*. When I'm fine it seems to go up in the second half of the night. When I accidentally take a double dose, because forgetful my HRV also remains flat throughout the night. Thus maybe there's something useful here.

I'm certainly glad my gp is happy to see what happens. It's not like he gave me a huge dosage increase. It's just 12.5mg more, and we'll do some blood tests next week. For now, for the past 6 weeks I've been feeling great and my flat is still a mess.

*as well as when I had alcohol, when I'm sick, or when I'm traveling and not sleeping in my own bed.

cmriverside

uh...like...uh...inspiring...uh...insightful.

yirara

🤣

AnnPT77

I absolutely notice a difference if my thyroid medication dose needs an increase. And I feel and perform best if I'm medicated to the point where TSH is very, very close to the low limit of the so-called normal range, or even a bit below. I support this message.

FWIW, my lab's reference range (i.e., normal) is 0.350 UIU/ML - 5.500 UIU/ML. I get retested every 6 months ever since diagnosis, but can ask for retest in between based on how I feel. If my TSH gets much above 1.0, definitely if it approaches 2, I start feeling sub-par. Last test was 0.701 UIU/ML, but it's been as low as 0.277 UIU/ML on the current dosage. My PCP is fine with that, because she is a "treat the patient, not the numbers" doctor. Sometimes they just test TSH (having established that my T3/T4 conversion seems to work OK), but periodically full panel.

Symptoms of hypothyroidism can vary among individuals, in my understanding.

For me, subtle fatigue was in the mix of symptoms, but the biggest noticeable symptom set before diagnosis was major morning stiffness. (I didn't notice the fatigue quickly because I was recovering post-chemotherapy/radiation, so in severe fatigue from that. It was more that I hit a wall in recovery before getting close to my pre-chemo normal energy level.) I wasn't trying to lose weight at the time, but don't think it would've stopped weight loss. I do notice that when my TSH creeps up, any small gain gets a little more "sticky". The caloric magnitude of that doesn't seem to be huge, but it's mildly annoying. But I'm talking about values creeping up in the reference range, not about severe thyroid deficiency, at this point.

I do share concern about adjusting meds without testing levels, but understand that testing may have difficulties or even dangerous delays in other places. (If I get re-tested, we have results in a day or two at worst, sometimes same day.) I'd point out, though, that being dangerously over-medicated does bring noticeable symptoms. Also, it takes time for a new dosage to take full effect - that's why the gradual increase of meds right after diagnosis is test, medicate, wait a few weeks, retest, etc. Being at too high a dose, just one jump up from current dose, isn't likely to be instant doom.

I agree that it's appropriate to be assertive with a physician who wants to treat the numbers only, particularly if they've only tested TSH and haven't done the full panel any time recently.

PAV8888

But I want a man hug! I am feeling the need to hug. Not hugging is causing me mental dissonance! All unwanted @yirara hugs are welcomed here! Thank you! 😎😘👍

yirara

Hahaha @PAV8888

On the note of not testing: My GP can only do so many blood tests per period, and won't test me several times per year as it means people who don't trust their feeling but only what their doctor says won't get tested, and come back several times and block up the health system this way. It's a bit ridiculous overall. But that's fine with me as I'm having tests next week to see how things are now.

AnnPT77

yirara wrote: »

Hahaha @PAV8888

On the note of not testing: My GP can only do so many blood tests per period, and won't test me several times per year as it means people who don't trust their feeling but only what their doctor says won't get tested, and come back several times and block up the health system this way. It's a bit ridiculous overall. But that's fine with me as I'm having tests next week to see how things are now.

I kind of figured there must be a difference in national standards, testing availability, testing timeliness, or something like that, based on location.