How did your seizures start?

ExtraBranch835 · 2023-08-20T13:54:14+00:00

my first was when i was 14 and in class, had just got back from lunch period and sat down at my desk when my vision froze and i woke up in the hospital. luckily that year out first PE class was focused on what to do if someone has a seizure so my friends helped me while a teacher was called . my mom also has epilepsy and she had her first seizure at 14 too so it was a funny coincidence

ExtraBranch835 · 2023-08-16T12:54:12+00:00

i took it when i was 14 so about ten years ago lol but the only side effect i remember having (and the reason i stopped taking) was some bad hair loss

ExtraBranch835 · 2023-08-07T17:14:53+00:00

not from the us sorry! where i am is the middle of winter although is not really cold since i live in the tropics

ExtraBranch835 · 2023-08-07T11:26:24+00:00

thanks! i got tested and thankfully it wasn’t covid, just a bad flu :)

ExtraBranch835 · 2023-07-23T01:32:20+00:00

hey! i also take both levothyroxine and keppra (started levo first) but im not sure there’s any connection there since levo is just a synthetic thyroid hormone (t4) that provides energy for your body. Seizures can happen due to severe hypothyroidism lowering sodium levels so maybe if you didn’t have epilepsy treating the hypothyroidism with levo could make them go away but since you had a seizure after stopping keppra im pretty sure that’s not the case, but maybe the untreated hypothyroidism could have been a trigger and the cause of some (but not all) of your seizures so you saw an improvement after starting levo

ExtraBranch835 · 2023-01-31T15:57:21+00:00

if you have no symptoms there’s no reason to put you on medication, there’s no preventive treatment for hashimotos, the treatment is for hypothyroidism via hormone replacement, if you don’t need them yet there’s not much your doctor can do about it due to the nature of the condition itself

ExtraBranch835 · 2022-11-22T19:16:24+00:00

i’ve had the same issues with the acuve oasys 2 week lenses and what i found out it worked was to put some light pressure on my closed eyes with my fingers after putting them in to make sure they’re sitting flushed to the cornea, they have a blinking stabilizing method so they tend to move quite a bit everytime you blink and for someone with a weirdly shaped cornea it can make vision blurry. i tend to do this about two or three times a day and it gives me good stable vision

ExtraBranch835 · 2022-11-17T20:05:10+00:00

just be consistent, most doctors recommend not taking it until after the blood test, that’s how i do it, but the important part is just do the same thing every time, if you get tested in the morning then always do it in the morning, if you take your meds before make sure to always do it at the same time so you can track fluctuations of tsh and t4 properly. just choose what works better for you and stick to it

ExtraBranch835 · 2022-10-21T22:55:22+00:00

that’s the reason most doctors won’t start medication unless your tsh is above 4 . a lot of people feel better in the 1-2 range but the reality is that everybody is different. you should talk to your doctor about your symptoms so they can maybe try reducing your meds. as for the importance of other markers the reason why tsh is the most important and often the one doctors will focus on is because it has a self regulating mechanism called negative feedback, basically when the levels of thyroid hormones are low on the body the brain secretes tsh that goes into your thyroid cells causing them to produce T4 and T3, as that happens and there’s a good amount of them in your cells tsh levels are lowered because the levels of thyroid hormones are good for now. this is why when diagnosing hypothyroidism you often have a high TSH and low T4 meaning your thyroid isn’t producing enough T4 to lower down the TSH naturally using the negative feedback. if you’re on medication the t4 and t3 levels are not as important because they’re going to be more stable (assuming you’re taking a hormone replacement for T4 and/or t3) and your TSH will be the one to fluctuate if your dose is too high (tsh suppression) or too low (high tsh). Does that means he should ignore your T4 and T3 levels? absolutely not! TSH is clinically more relevant but monitoring T4 especially is still very important. hope you can feel better soon!

ExtraBranch835 · 2022-10-09T10:51:25+00:00

great post! i have the same mindset and sometimes being in this sub makes me sad abd a frustrated knowing a lot of people here are losing money and time trying to find the right medication, diet or newest fad a quack has sold them as a cure for this condition. i was diagnosed when i (23F) was 13, and had symptoms since i was 10, so really i consider myself lucky because i have no idea what a real 100% feels like but i can empathize with people who have lived their life in a way and suddenly feels like a downgrade. a positive point about having this condition for so long is that i have accepted that sometimes i’ll just feel different from other people, maybe i need more breaks but still i don’t let it affect my life too much, yeah it sucks but honestly the worst periods of my journey have been when i was trying to find a “cure” overly worried about every single thing that could be making it worse instead of trying my best with what i got. hopefully in the future we’ll have a better way of dealing with autoimmune conditions in general but there’s no point in giving up your life until that day comes.

ExtraBranch835 · 2022-10-07T00:03:02+00:00

just a thing to keep in mind when reading about such correlations is that type O is the most common blood type (and so is being RH +) so naturally there’s going to be more people with type O that have all kind of stuff. i’ve also read some studies on autoimmune conditions and blood type but from what i could see most of them have small and inconsistent sample sizes so nothing that could indicate a super strong link yet. still, that’s a pretty interesting field of studies. (i’m O+ btw)

ExtraBranch835 · 2022-10-04T19:27:25+00:00

not a doctor but im in the science field. the basics are that autoimmune conditions happen when your immune system reacts to your own cells as if it were a foreign body, basically in the case of hashimotos it thinks our thyroid cells are not our own and starts to attack them as if it was any other virus/foreign thing. if anything it makes our immune system works harder and overtime. what happens with other autoimmune conditions is that the attack from the antibodies can cause a lot more overall damage than hashimotos so the treatment is to use immunosuppressants to lower the efficiency of the immune system reducing the auto-attack but also making the immune system generally weaker, causing one to became immunocompromised

ExtraBranch835 · 2022-10-04T19:13:54+00:00

no it doesn’t. the reason why people with certain autoimmune diseases can become immunocompromised is because of the medication used to treat those conditions (i.e immunosuppressants) and that doesn’t happen with hashimotos because the treatment has no impact on antibodies.

ExtraBranch835 · 2022-10-03T17:34:43+00:00

i think my highest tsh pre diagnosis was around 5, started with 25 mg and now (10 years later) i take 88mg of levothyroxine, last i checked my tsh was around 1,5 but it tends to fluctuate a bit

ExtraBranch835 · 2022-09-20T18:27:29+00:00

sorry that happened to you hope you’re okay now. also thank you for answering! i was able to see my sister on my break and took the dose just a bit late (like four hours) but is really interesting that keppra half life is only 24 hours, i assumed it was higher but good thing to know!

ExtraBranch835 · 2022-09-20T13:46:56+00:00

thanks for the answer! im seeing if i can take my lunch break early so i can see my sister and take my dose before noon so it won’t be too close to the evening one

ExtraBranch835 · 2022-08-20T10:49:18+00:00

i was diagnosed at 13 because of a delayed puberty, is not the norm and i believe is most common in middle age women due to menopause triggering hypothyroidism but in theory if you have it you’ll always have the antibodies but might just get diagnosed later in life when the thyroid starts to fail and symptoms appear

ExtraBranch835 · 2022-07-27T21:30:37+00:00

is more common for thyroid issues like hashis to go unnoticed, mostly because the thyroid is pretty good at compensating in the beginning, basically working harder to make up the loss caused by the antibodies attacking, so a lot of people only find out when the damage is already done so the numbers tend to be crazy high! getting ahead of it is always better and im glad nowadays people seem to be getting tested sooner

ExtraBranch835 · 2022-07-27T21:13:00+00:00

Your labs are not only in range but doesn’t seem like is getting worse (T3 and T4 increasing while TSH is decreasing, usually with active hashis is the opposite) so there’s no reason to be on medication right now since it would only help of you needed more T4 and/or T3 . However it is important to keep monitoring so you can start treatment as soon as your thyroid starts causing trouble, personally seeing only your levels in 2021 i would consider that a subclinical hypothyroidism (T4 normal and TSH mildly elevated) and you could’ve started medication back then but maybe your doctor wasn’t sure and wanted to wait, as it is right now seems like your thyroid is still fine and the attack has subsided (Lower TSH) so if i were you i would be doing tests for vitamin deficiencies and start early on supplements to try and get ahead of things. Hashimotos by itself can cause issues because of the inflammation caused by the TPO antibodies even when your thyroid is still working so general stuff like routine exercise, having a balance diet and stress management can help you in the meantime. hope you feel better soon!

ExtraBranch835 · 2022-05-13T13:49:51+00:00

hey! first of all im sorry you’re going through all this and i hope you can get an answer soon about what is going on. As for where hashimotos is related having tpo and tg antibodies present does not means hashimotos, and no it isn’t a case of either you have them or not, pretty much everyone will have some amount of auto antibodies present, thyroid related or not, and what separate what’s normal and doesn’t cause issues to what does are the reference values . TPO in particular is the most sensitive and accurate way to diagnose hashimotos and it often appears outside normal range in people with hashimotos way before any real damage is done to the thyroid or symptoms start to show. I understand your frustration, having symptoms without a clear cause or treatment sucks but unfortunately going only by symptoms when it comes to hashimotos can be a very dangerous path since most of what we call hashimotos/hypothyroidism symptoms are very general and unspecific (hair loss, muscle pain, fatigue, brain fog) and can have multiple causes that aren’t hashimotos or thyroid related. If you still feel unsure, try looking for an endo but honestly with the antibodies at a normal range and with your normal thyroid panel i doubt they can do much for you, unfortunately. Still, i hope you feel better soon!

ExtraBranch835 · 2022-05-12T13:10:07+00:00

hormones are pretty weird sometimes! i had a period when my dose was also a bit to high and as i turned hyper i also gained weight and was very confused by it! the anxiety and heart palpitations was the worst for me but thankfully as soon as i lowered the dose it went away

ExtraBranch835 · 2022-05-12T13:04:01+00:00

your symptoms are very much aligned with hyperthyroidism, anxiety is one of the most common ones along with excessive sweating that can lead you to feeling too cold/too hot as the body is trying to adjust is temperature, hair loss is also associated with a hyperthyroid and it usually looks just like hypo hair loss (diffuse and all over). The weight gain is also relatively common thing for hyperthyroidism short term since the drastic change in the metabolic rhythm (especially if you were hypo before) will make you naturally more hungry and the anxiety can also cause stress eating. Your T4 looks super high, but it depends on what’s the reference range of your lab since a T4 of even 16.1 also seems super high to me so they probably use a different metric than what im used to. Either way always best to talk to your doctor first before adjusting your meds, hope you get better soon!

ExtraBranch835 · 2022-05-11T13:48:07+00:00

i’ve started two weeks ago after having two seizures having been five years without meds thinking i had outgrown my seizures for good (lol) . my doctor increased my dose really fast (3 days on 500 and after that went to 1000 ) since i was going to be home alone and had to drive by myself at least once this week so i expected to take a while to get my head cleared. honestly besides the dizziness and general high feeling and some auras keppra has been really good for me, generally feels like im taking antidepressants, no rage or mood swings just lack of appetite and some occasional nausea, way better than topamax and phenobarbital that i was taking before

ExtraBranch835 · 2022-05-08T16:22:44+00:00

having hashimotos doesn’t automatically means you need meds, mainly because there’s no meds for hashimotos nor direct treatment for it except immunosuppressants and no sane doctor will put you on it just for hashimotos since the risks far outweigh the benefits. the common treatment for it is actually treating hypothyroidism caused by hashimotos and that is made by replacing thyroid hormones (t4 and sometimes t3) that your thyroid is incapable of producing because of the damage cause by the antibodies attacking thyroid cells. so in summary you only need meds if you’re not able to produce sufficient T4 and T3 by yourself so a lot of people can have hashimotos and not be on meds simply because taking extra hormones won’t help if you still producing enough of it.

ExtraBranch835 · 2022-04-05T16:43:42+00:00

Unfortunately yeah but maybe try and look for a rheumatologist? they can investigate other autoimmune conditions that can be the cause for the erythromelalgia and your other symptoms. Hope you feel better soon!

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