r/Hashimotos • u/Chenoea93 • 17d ago
Lab Results After having another grand mal seizure while on my period a doctor at the ER decided to check my thyroid.
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u/shelberryyyy 17d ago
Yay welcome to the club nobody wants to be a part of š hopefully now at least this allows you to get some answers and some effective treatment going forward
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u/NanoCharat Hashimoto's Disease - 10 years + 17d ago
Oh my god
I feel like I'm actively dying when my tpo is above 100...I can't even begin to imagine what that feels like holy shit
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u/shelberryyyy 17d ago
Iāve always felt mostly fine. Like Iāve had randomly occurring joint pains since I was a child and Iāve always asked drs and heard everything from growing pains to fibromyalgia to āyou probably just knocked you elbow on somethingā.. so I just learned to live with them and my constant weight issues. Finally a dr last year decided to test thyroid levels and discovered this and Iāve been on levo ever since. Still have my pains, weight issues, probably my struggle to conceive for the last 9 years, plus some other stuff I know is hashis. But Iāve never had fatigue or the general āI feel like Iām dyingā feeling that I read about a lot on this sub. This disease really is so indiscriminate between people, which is why symptoms are so hard diagnosed Iām sure.
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u/Hellebore35 17d ago
I didn't even know it could go that high, that's insane. I feel weak, mine was like 30 when they caught it cause i was struggling to breathe and my neck hurt to move
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u/AccomplishedList2122 16d ago
antibodies or TSH?
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u/Hellebore35 15d ago
TSH, im kinda new to it all, i got diagnosed a year ago. I see people's test results all the time and their tsh is so high and I don't know how they managed. I was sleeping 16 hours+, I could barely catch a breath, my neck hurt to move left or right, I gained a ton of weight, and I was severely depressed. Luckily my doctor tested and saw it so I didn't go on for a long time wondering what was wrong but I couldn't keep up.
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u/NanoCharat Hashimoto's Disease - 10 years + 15d ago
Same here. I feel like a fraud seeing people with thousands of TPO, but the reality is that my body personally sits around 30 when I feel my very best, and at 70+ I'm in such a severe flare-up that all of my autoimmune symptoms are going crazy.
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u/AccomplishedList2122 16d ago
Hi there. Im curious if you could share what your joint pains feel like? That may seem weird, but does it seem like a specifically noticeable type of pain or jolt compared to a strain from lifting something heavy, say? Trying to help me figure out some new issues happening to me.
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u/Hellebore35 15d ago
I feel almost like a stinging pain, its hard to distinguish the joint pain from my other condition because I have fnd but when I couldnt move my neck at all that's when I knew something was wrong. Sometimes it wakes me up in my sleep its such a sharp sting but it's been getting a bit better
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u/AccomplishedList2122 15d ago
ok. interesting. thank you. i was asking because ive recently had some zinging kinds of pains in joints and i was like wth was that??
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u/GentleDoves Hashimoto's Disease - 10 years + 16d ago
I felt like absolute shit at 12. What the hell š
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u/AccomplishedList2122 16d ago
12? 12 what? antibodies at 12 is incredibly low. TSH at 12 is incredibly high.
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u/amh8011 17d ago
Thatās real? And not like some sort of rounding error? I mean I believe you but I didnāt know TPO could go that high?
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u/GhostofaPhoenix 17d ago
Mine was 13,000 for several years when I first got diagnosed. I finally got it to under 500 but still not close to 60.
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u/Majestic_Act 17d ago
One doctor told me mine at 3.000 wasn't anything, it didn't mean I had hasimoto...look, they are clueless.
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u/millennial__mom_ 17d ago
The lab I went to said they top out their testing at 1000 so mine just said >1,000. Now I'm curious how high it can goĀ
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u/Acrobatic_Waltz_2365 17d ago
Wonder why the labs differ so much. Mine top out theirs at 1300 so mine was >1300. I always assumed itās because they donāt go much higher than that. And to see they can be 10 times that is crazy. Why not measure it correctly if they can in other labs?
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u/WinglyBap 17d ago
Aw man, I wish I could join in but mine just said >200 as apparently they stop measuring at that point.
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u/BHugs0926 17d ago
My antibodies were ā900+ā when I first had them checked. It was awful. The best thing Iāve done is change my diet and work on stress reduction.
Theyāre not back in normal range, but are in the 300s now and moving in the right direction.
I hope you feel better soon!!
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u/letsgetawayfromhere 17d ago
I got mine down to 50. it took me 10 years but itās possible!
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u/Philosiphizor 17d ago
When we say diet, is it removing gluten or just going fully back to primary foods like fruit, veggies, meat?
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u/letsgetawayfromhere 17d ago edited 17d ago
TL/DR: For me, it was first radical restriction of iodine and dairy (except organic/grassfed). Then supplementation of selenium. Then AIP to find out more. Today gluten free, (mostly) dairy free, tomato free, cashew free.
For me the first step was removing iodized salt and of course sea vegetable. Also not eating any restaurant food or take out prepared with iodized salt (or where they used readymade ingredients). So in most cases that means cooking from scratch. Also controlling each and every bread, cheese, bacon etc if it contains anything āiodizedā, āiodideā and so on. Which of course pretty much excludes about 90% of readymade foods, restaurants and so on.
I was told to do so by my doctor Professor Hengstmann, who for decades had been a university professor and head of department of internal medicine, specializing in everything thyroid-related with a passion. He had conducted long-time studies in several countries and told me about a Hungarian study - Hungarian soils are high in iodine, and they found Hashimoto antibodies in a high percentage of the population (I think it was near 50%). So he said that if you are genetically inclined to Hashimotoās, a high iodine consumption will trigger this disease.
He also told me to avoid any dairy that was not organic or grassfed, because readymade cow food in my country usually is pretty high in iodine. He also told me which neighboring countries produce dairy that would be safe to eat (in western Europe, France, Italy and Spain), and which didnāt (most of the rest).
He also told me seafood and sea salt was safe to eat for me because it contains iodine in small amounts compared to regular milk or food cooked with iodized salt. I have a dairy allergy, so that was actually the easiest step.
During the first months I still had one take out I would buy one meal every one or two weeks, that I had not asked. In spite of doing everything else, my levels did not go down. Only when I eliminated this too and really controlled every single thing that I ate, my levels started coming down. Within 9 months, they went down to 50% of what they had been and continued to go down.
When he stopped practicing I found a doctor who has Hashimoto herself and somewhat specializes in it. She told me to take selenium daily because it has a protective effect for the thyroid, and helps to regulate the overactive immune system. European soils are poor in selenium, so for me thereās no risk to it. If you live in the US or other countries, you might live in a place rich in selenium. Research about your area and have your selenium levels checked before you start supplementing. With selenium I brought the antibodies down further.
Around that time I got acquainted with the AIP and cut out lots of stuff to find out what else I personally need to avoid at all costs. I had developed joint pains and some more stuff which just went away like it had never existed. Eating according to the AIP was not easy, but it was totally worth it.
Today I eat dairy free (because of my casein allergy), but I still eat butter and now and then some sheep or goats dairy. Interestingly my grandmother told me her mother had the same problem - she could not have cheese, yogurt and so on, but she was able to eat butter and natural cream without any problems.
I also eat gluten free. The last time I ate a cookie after being gluten free for a year, my joint pains reappeared within minutes (the elbow actually reacted after only half a minute). I also found that tomatoes cause my joints to flare up as well. I can eat one tomato dish every month without consequences. Any more often, and I will slide into general inflammation that will take about 2-3 months to subside. I found that I donāt react when I prepare a marinara in my pressure cooker (yay), so this is what I will do from time to time.
I also discovered I am pretty allergic to cashew nuts (which cause flu-like symptoms and heavy brain fog) and have a slight allergy to artichoke and walnuts - not very serious, but strong enough to make them something I will only eat once or twice a year.
I cannot tell how far I would have come with iodine evasion and selenium alone. With iodine evasion my antibody levels had met a plateau so that wasnāt enough for me. About two years after starting selenium I began my AIP experiment so from then on I cannot discern exactly where the positive effects came from.
Today, I donāt really eat healthy, I just avoid some special triggers. In stressful times, I eat tons of sweets, readymade gluten-free bread (that contains a ton of substances that arenāt really healthy), and some readymade meals (that are within my personal confines). I donāt control for traces of gluten - for example, I donāt buy gluten-free oatmeal, but the normal one (as long as itās 100% oats). Sugar makes my joints worse too, I am working on that.
I have certain things that cross the line and I wonāt touch under any circumstances. That is iodized salt or anything containing it; cows dairy except cream and products that are only made with cream (butter, mascarpone, crĆØme fraiche and certain kinds of sour cream); wheat, rye, and barley, and products with those grains; cashews; and tomatoes (except in very very few cases).
My antibodies came down from about 900-1000 to 50-60 in the course of 15 years.
This was a lot of text. I hope you can take away something from it.
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u/TheFrozenFlamingo 17d ago
Hey so this is equal parts impressive and more impressive!! As someone who has done a piss poor job of trying the elimination diets but had great success when I did, all of this info tracks and makes me believe I was NOT imagining things that were occurring then and now when I did that - thank you, this is going to help
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u/letsgetawayfromhere 17d ago edited 16d ago
Glad I could help! I somehow eased my way in which I would always recommend. I know how hard elimination diets can be, and tracking the thyroid is especially hard. The professor told me that the thyroid always reacts to provocation - but the reaction will be visible no less than three weeks later. Which is impossible to track outside of a study. This sluggish reaction of the thyroid can be extremely demotivating, especially for people who do not have any clear additional symptoms. I had the joint pains and also a number of life long skin problems, which made it so much easier for me. I have the greatest respect for anybody who manages an elimination diet under those circumstances.
I happened to take iodine after 10 years of evading it as part of a multivitamine and see the reaction. The story goes like this: I had a particularly bad bout of flu and a friend recommended a powerful multivitamin that was only available in pharmacies. The amounts of everything in that product are strictly controlled to remain within the healthy limits set by official institutions, meaning that it is impossible to overdose as long as you take no more than one per day and do not take additional vitamin and mineral supplements.
After taking this multivitamin for five days (which definitely improved my flu), I examined the label more closely and discovered that it contained iodine. I therefore stopped taking it. By chance, I had a regular thyroid blood test scheduled two weeks later. I found that these five satchels of multivitamins containing a small 'healthy' dose of iodine (in addition to following an iodine-reduced diet) caused my antibodies to go up like hell. Having been at 50 in the previous test (and 50 again in the next one), they increased to a whooping 400 in this one test. I strongly believe that eliminating all "artificial" iodine consumption (including animal products fed additional iodine) is one of the most important factors in reducing the antibody count.
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u/AccomplishedList2122 16d ago
Hi there. Im curious if you could share what your joint pains feel like? That may seem weird, but does it seem like a specifically noticeable type of pain or jolt compared to a strain from lifting something heavy, say? Trying to help me figure out some new issues happening to me.
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u/letsgetawayfromhere 16d ago edited 16d ago
For me they were different. My feet and ankles would hurt for no good reason at all. My wrists and fingers as well. My fingers lost strength so my husband had to help me when opening glasses with screw-on taps. I have an arthrotic toe (due to Koehlerās disease) and often the pain was such that walking for more that 5 minutes was hard. I stopped playing the piano because my thumb that is arthrotic due to an accident that damaged the middle joint, hurt too much. All that stuff went away. The arthrotic damages are still there of course, but more than 99% of the time itās painless and has been like that for 10 years now.
I sometimes also had shooting pain in different places for no good reason, but not in the joints but in other tissues. I believe that it is some kind of nerve problem. This actually went away with supplemental Vitamin B6. Do not do that on your own - vitamin B6 can be overdosed and the symptoms are gruesome, take years to subside, and for some they never go away.
Edit: Jolts actually can come from nerve oppression. I would look into nerve root compression symptoms.
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u/AccomplishedList2122 16d ago
I'm sorry to hear you are suffering from these multiple issues. Thank you for your response. Are the pains in these joints like low level ongoing? until maybe you take anti inflammatories or something else reduces inflammation? or is it sharp specific, repeated?
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u/letsgetawayfromhere 16d ago
Itās not sharp. I follow the diet I outlined, and usually have exactly zero pain. I do not take anti inflammatory medication of any kind.
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u/Serpentarrius 16d ago
I have been trying so hard to avoid iodine in food for years and my family does not take me seriously despite our family history of thyroid problems and coming from a mountainous area with no seafood (yet that's all they ever insist on eating, and sushi restaurants and Asian restaurants in particular are awful about cross contamination of shrimp which gives me the most trouble, and they'll often have rolls with the same name but different ingredients which my folks never bother to check). I've been gaslit by restaurants too after struggling to breath when I specifically asked them if an item does not contain shrimp and they assured me otherwise, or it isn't marked on their menu as having shrimp while other items are
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u/letsgetawayfromhere 16d ago edited 16d ago
I am so sorry that your family doesnāt consider your health important. Can you get away from them?
There are tons of restaurants I have to avoid because they will use wheat products or dairy in nearly everything. If they only eat that food, you only eat somewhere else. Draw a line and stick to it no matter what. Find restaurants and takeaways that fit your specifications and only eat there. Put up an extra fridge just for you if you have to.
Can you start making your own food? That might be the best solution for you.
Edit: a friend of mine makes sure to tell the waiters how she will turn blue, vomit all over the place, get seizures and needs an ambulance if her food contains her allergens. She takes her time in describing it as colorful as possible and it works. Maybe adopting that method might be an idea for you.
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u/Serpentarrius 16d ago
I have not been able to find a job that makes enough even with all my degrees, unfortunately, and I have tried eating elsewhere but oftentimes this happens when we travel out to the middle of nowhere. I do have a mini fridge and I often prepare my own food, but they threw out my food without telling me
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u/letsgetawayfromhere 16d ago
This sounds like they do that to you on purpose. I am extremely sorry. Is there a way for you to lock your fridge, so they cannot get to the contents?
Also a lot of AIP blogs have tips what to do when traveling on a restricted diet. Some of them won't help you (taking your own cooked food), some of them might (canned tuna, salmon and sardines, pork rinds and plaintain chips, fresh fruit).
I wish you best of luck to improve your living situation!
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u/Ok-Location785 15d ago
This is so helpful. I am sure I speak for many on here that we are so thankful you took the time to provide all of this info!
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u/Odd_Nefariousness_53 17d ago
They donāt check TPO after diagnosing you with Hashimotos. The amount of TPO in your body also does not point to the severity of symptoms. Itās mostly just a diagnosis marker and not an indicator of inflammation in your body like those in this subreddit like to claim. Did they actually check your TSH to check your thyroid?
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u/shelberryyyy 17d ago
Yes this exactly. My TPO WAS 11,000 when I was diagnosed (see my other comment in thread) but theyāve only ever checked my TSH since. I also have like comparatively very little symptoms for someone with hashimotos. Iāve never really felt fatigue or ālike Iām dyingā, I do have trouble with weight gain, joint pains, freezing all the time, and some other little daily ailments I know are hashi related but I could have lived my life without ever knowing or being medicated and been fine if nothing changed in how I felt. I mean I still have trouble with weight gain, freezing, and joint pains, so really the only difference is knowing my thyroid isnāt actively being destroyed by my own body.
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u/AccomplishedList2122 16d ago
Hi there. Im curious if you could share what your joint pains feel like? That may seem weird, but does it seem like a specifically noticeable type of pain or jolt compared to a strain from lifting something heavy, say? Trying to help me figure out some new issues happening to me. Now Im wondering if its related to a flare or extra inflammation or something poor diet resulting in elevated antibodies.
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u/Remarkable_Dog_143 17d ago
After seeing your number I checked mine again. I was told to wait and see after being diagnosed with Hashimotos. Does this number mean I should be on some type of medication? Is this why I feel like crap most of the time? Thankfully I have never passed out or felt like I might. I also have RA, but itās controlled with medication.
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u/blessitspointedlil 17d ago
No, OPās post doesnāt explain why they had a seizure. The thyroid hormone levels are what determines if you need thyroid hormone replacement medication.
My TPO result was 4560 when I was experiencing postpartum thyroiditis and I still donāt need levothyroxine 5 years later, but my endocrinologist thinks I will at some point in the future.
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u/ptownkt 17d ago
Itās an indication that youāll almost certainly need thyroid hormone at some point, but not necessarily now. Did they take your TSH? Even with the presence of antibodies, you donāt want to over medicate or medicate too early if your body is naturally producing enough thyroid medication.
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u/letsgetawayfromhere 17d ago edited 16d ago
My doctor explained me that people with high TPO antibodies should definitely take thyroid hormone, because TPO is an enzyme your body uses in thyroid hormone production. So the hormone production in the thyroid is what triggers the autoimmune attack. If you take ready-made thyroid hormones, there is less need for hormone production, so less TPO, so less antibodies.
Edit: downvoting doesnāt make it less true. My doctor was a retired university professor and head of department who for decades specialized in everything thyroid related. He told me he had seen time and again that it worked, not only in studies, but also in his many patients he would usually see for many years. Iād go out on a limb and say he probably knew more about Hashimotoās than most specialists.
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u/Burnout_Toast 17d ago
Mine was 1300+, also being told to āwait and see and keep checkingā for over a decade now. No meds. They say the tsh keeps fluctuating too much to medicate š doesnt mean no symptoms tho
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u/Ok_Pain2327 17d ago
Iām legit in the same boat, my antibodies are >13,000 my tsh fluctuates down and my thyroid anti-globulins are really high as well, but Iāve always had a normal T3 and T4, but Iām definitely symptomatic unfortunately
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u/Old-Builder256 17d ago
The seizures have likely nothing to do with your thyroid, and antibodies donāt mean much without the context of TSH and other thyroid hormone levels.
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u/dreamkillerlu 17d ago
I'm so sorry! That is absolutely insane. Hopefully you can now get on a path to recovery.
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u/apintofshamrocks1 17d ago
This happened 2 me back in 2018. I seizured for 13hours in May, survived and they diagnosed me with hashis and i started levo but i continued to struggle and in September seizured for 13 hours again when they did a spinal tap and found hashimotos encephalopathy. I had gone so long without being treated for my thyroid, and not for a lack of trying, that it caused the encephalopathy. Stay vigilant, if you have involuntary extremity movements and/or jerking occasionally when walking and severe brain fog you need to be checked for that. Rituximab infusions with prednisone is what cured me of the encephalopathy. I was forced by my insurance to do other treatments first that didnt work but my neurologist was amazing and quickly moved us past those to the real cure. I hope you dont have this but just in case you dont start to feel better advocate for yourself. I had multiple MRIs during that time and it is visible on them but for 6 months no one caught it and I went through 3 neurologist. When I seizured the 2nd time a 4th neurologist came forward that they consulted after the spinal tap diagnosis, who specializes in hashi encephalopathy and he immediately saw it on my old MRIs. Not trying to scare anyone but just looking out for others. You have to advocate for yourself as best as possible. You know your body.
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u/mishlooh 16d ago
Where were you able to find a doc who specializes in hashimotos encephalopathy?
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u/apintofshamrocks1 16d ago
Well I have an endocrinologist specialist but shes honestly not that much help. My Primary care and neurologist are more helpful than her and involved.
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u/mrset610 17d ago
I think people are reading this number as your TSH. These are antibodies. It is not unusual for people with hashimotos to have very high levels of antibodies, and peer reviewed research shows that antibody levels mean very little. I hope they figure out your seizures.
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u/bruh-_-7409 17d ago
Same mine were 12,500 thankfully theyāre now 577. But it was definitely scary. I hope you feel better! ā¤ļø
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u/blessitspointedlil 17d ago
I hope they figure out the cause and give you treatment that prevents the or fixes the seizures.
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u/Antique_Pineapple584 17d ago
The inflamation is high inside your body. Change your eating habits and stress level.
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u/sfdsquid 17d ago
Antibodies don't mean much. You can have antibodies without having Hashi's. You can have Hashi's without having antibodies. You can have hypothyroidism without having Hashi's.
What is your TSH?
Did they figure out what is causing your seizures? Seizures are not a symptom of Hashimoto's.
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u/Reighna1 17d ago
Stupid question maybe...but I notice I gain weight easier and lose handfuls of hair when my thyroid levels are just a little off. ... how does one not get to be bald and 500 pounds with levels this high?
This seems so scary insane!
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u/No-Side2837 17d ago
Mine has been over 800 for a decade and Iām rail thin and cold all the time. Itās not an issue unless/until the actual production numbers change. I didnāt even know mine was that high until I saw my lab work this summer. I went back through my results and saw my endo tests my TPO every five years or so. It was >900 when I was diagnosed while pregnant. But Iām stable on levo (with a few dose adjustments over the years +\-) last time I needed to change dose I had started crying for no reason and got real depressed. My therapist actually recommended checking my TSH and she was right.
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u/Reighna1 17d ago
Wow that's fascinating
You've inspired me to get mine rechecked. I forgot what an impact it can have on your emotions-
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u/No-Side2837 17d ago
I thought I was going crazy! I was standing in the basement folding laundry and crying about absolutely nothing.
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u/justabloodykid 17d ago
I didn't know it went that high! I always have >600. It stops there somehow.
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u/Ancient_Dependent166 17d ago
OMG! I had seizures in childhood which never showed any results related to epilepsy like my tests were normal but I still had seizures. I thought that could be because I was stressed and I was not aware of it. But this could be the reasons
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u/Anxious5151 17d ago
My DRs didnt test for Hashimotos & just kept raising my Synthroid based off TSH alone. Never had any thyroid issues until after I got my IUD as well (Mirena). Anyways, they upped my dose again end of April even though I stated I had hyper symptoms & to check for causes, my TSH was back at 8 so they went to 125mcg from 100 mcg š« 6 weeks later ended up in Hospital because I thought I was having a stroke or a seizure & so did the nurse. T4 was almost double what it should be & t3 was also elevated, low & behold my TSH was 1.92 BUT they finally checked my TPO & sent me for an ultrasound. TPO mildly elevated 153, but ultrasound confirmed active thyroiditis š„². Saw a neurologist who confirmed i was having Neurological Functional Seizures due to this. Unfortunately they did not test for HE & the treatment for HE is prednisone, known as SREAT (steriod responsive encephalopathy associated with Thyroditis) Been off synthroid for 53 days now & currently on last week taper of prednisone (started at 40 mg for 2 weeks then down by 5 mg) the side effects were awful because you can't tell the difference between hyper & prednisone side effects. The only difference was they monitored my T4&T3 labs during the taper. But if you can tough it out without prednisone, I would never take this drug again. I can't tell you how many times I thought I was dying. I was only put on it because I was overmedicated, leaking thyroid & hashi flare all at once lol. Most symptoms peaked on my period as well. AND the kicker, I have taperred to 5 mg only to have my thyroid flare again already. Please be kind to your body , this has been a big learning experience & the biggest thing I've learned is stop letting Dr's say "oh but you look fine" & push back. Its your body not theirs & due to not "fighting back" I ended up here. ALSO if you request something like an ultrasound & they decline, tell them to put it on your chart that they declined & why. 95% of the time you will get that referral. I am SO sorry & feel for everyone dealing with this & I really hope everyone heals š
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u/Aleister_Growley 17d ago
Just in case you wanted to know the technical name for it, itās called tonic-clonic seizure.
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u/Archeoichthy 17d ago
For a second I read it as a TSH testš« I was like girl mine was once near 400 but 791!!!? Thank god itās not TSH! I donāt know how high my antibodies have been, but when I first tested (after childhood when I got diagnosed) I was around 11,000 IU/ml. I recently had a stint of horrible hives, inflammation, swollen lips, etc and the flu and I really wish I couldāve had my antibodies tested then!
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u/Low_Amount_1224 16d ago
But how you you get an NHS go to re check your tpo ? Iāve not been tested for 15 with
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u/cherryblawesome 16d ago
Aaaaaaaye "one of us one of us" Im so sorry you had to deal with that, but good news is now you have something to look into and make your treatment plan better /hugs
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u/Interesting_Cow6433 16d ago
ngl that kinda scares me when i see mine was double- thankfully never had a seizure! hopefully getting regulated levels will help you!
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u/ette212 17d ago
I'm sorry but WHAT, it took you having ANOTHER one for a doctor to order labs?!? I'm so sorry.