Having trouble monitoring thyroid

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I've been off thyroid medication for 8 months now with the help amino acid supplements. 

I have advanced thyroid disease and after cycling through a myriad of medications, gave up on them because they made me horribly sick.

I don't bother even testing anymore. What's the use?

So, now, it's turned quite cold and things have progressively gotten worse with the cold, including brain fog. So you see, it's difficult to self monitor, as I don't realize until I've become so foggy, cold and plagued with migraines...

It seems I should test, except the lag on deppped thyroxin levels makes even testing useless, since by the time it shows up, I'm pretty much completely incapacitated.

I've tried asking my close friends to watch for signs that I'm getting low, but after several years, I've yet to have anyone point out that I might be low, even though I've asked them to watch for signs.

Once I realized, I immoderately took more aminos and other supplements, got a space heater while I sleep, and feel a thousand times better. 

Does anyone have an early detection method to recognize and head off thyroid dips before they're so bad you can't function?

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21 Replies

  • Posted

    Hi

    Not exactly a method but I too monitor symptoms. Mine is when I experience extreme fatigue, pain and stiffness along my sternum, changes in bowel movements, sluggish digestive system. Feeling deadpan. 

    I have heard you can monitor it by taking your basal body temperature daily upon waking. When it dips below a certain temperature, that’s when your levels are probably out. People keep a chart

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    • Posted

      I saw my PCP last Monday due to a sinus infection and my temp was 96.9.  As I told Catherine, below, I have hyper levels but hypo symptoms. The bone chilling cold is the worst for me right now. 
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    • Posted

      I had my levels checked two weeks ago. They are way out of range. So had my dosage upped. Feeling the cold has been bad for me too lately. I walk round the house in t shirts and jumpers wrapped in a dressing gown and scarf. My nose feels like it is going to drop off!
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    • Posted

      Jay- I had hypo symptoms while on the Levo and it didnt work for me at any dose. It actually made my cyst grow larger and fast. The Levo made the cyst grow REALLY fast! 

      I was able to eventually reduce the cyst with a combination of therapies: acupuncture, borax, essential amino acids...

      I went from the Levo to a non prescription bovine glandular before going onto the aminos. Not sure how much of a roll the dedicated glandular played, if any, in reducing the cyst.

      Now off the Levo, I've got the cyst much smaller and a lot more stable. 

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    • Posted

      I was also on bovine when hypo and trying to shrink big nodule for 10 yrs or so. It shrank a bit but not enough.  Now on Methimazole, my nodule is smaller but it's hot, spewing excess hormone causing hyper. I can't seem to stabilize. Endo wants me to have surgery but I can't go through another surg due to anesthesia. Glad you're more stable off Levo. This road has been too long and seems never ending. 

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  • Posted

    I flipped from hypo to hyper and was put on Methimazole. 10mg daily made me sick with weakness and a depression I've never felt before and hope I never feel again. That's when my T's dove to lowest range.

    I'm down to 2.5mg of Methimazole because a nodule turned hot and is spewing excess hormone. I gauge my levels by dizziness, lightheadness and mood swings. I went off Methimazole a couple months ago and shortly thereafter, couldn't walk without holding onto walls so I had to reinstate the med. I take tons of supplements: vitamins and amino acids too.  

    I don't have hypo readings but I am always freezing. Right now I'm bundles in sweats/sweatshirt/2 blankets and sitting in front of a heater and I'm still chilled to the bone.  But I can't go off Methimazole because my TSH dumps.

    What were your levels when you tested?  

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  • Posted

    Catherine and Jennifer.  Do you get blurred vision when your levels are low? I also have history of migraine. When I was hypo, I had sluggish digestion too and could never lose weight. Part of my "hyper" routine is daily vitamins and minerals. I take Magnesium and L Carnitine and acidophilus which take care of the digestion. 

    I never had the usual symptoms of hyperthyroidism like heart palps or tremors or loose bowels. Just fatigue and depression/mood swings. 

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    • Posted

      Yes! Blobby blurred vision. So annoying. I was diagnosed with hemiplegic migraines a year a go. Haven’t had one in a while, just tension headaches. Think these are down to emotional stress though. This will probably be the cause of throwing my thyroid levels out of whack won’t it?? I’m not taking anything at the moment except thyroid meds. I’ve recently started drinking apple vinegar cider for digestive problems.

      I’ve been having palpitations for two years now. Seem to be getting worse

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    • Posted

      Thanks everyone for the input. Yes, my vision is affected with the hypo, but then I also have migraines, so it's hard to tell what's what. Really, I've been so out of sorts for so long that monitoring symptoms doesn't really work because I'm pretty much sick all the time. I do my best to ignore them, rather than notice anymore. I tried the body temp thing but didn't feel the thermometers were reliable and gave up on that. The synthetic thyroid medications actually worsened the hypothyroid symptoms, and I'm not on meds even though I have severe thyroid disease because I can't tolerate the meds. I keep even my supplements to a minimum because I don't want to risk overtaxing my system, and I'm often so overwhelmed that I don't remember to take the supplements when I do need them.

      One indicator that is separate from my symptoms is my surroundings. When I'm feeling well, things are quite organized and it's easy for me to reorganize, keep things up, make changes, etc. Things just seem to find their place more easily when my thyroid stuff is on track. However, when I'm not, things tend to get disorganized and chaotic as well as overwhelming. And before I know it, I have giant stacks of laundry, the trash doesn't get taken out, basic yard work doesn't get done... and worst of all, I can't find anything. I feel depressed and feel like I'm drowning. So that's a giant red flag. Also, I guess when I feel like I keep losing things or keep forgetting my keys or other things...

      I just wish I could head things off earlier in the process and save myself the wallowing depression and backlog before it happens.

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    • Posted

      Oh no. I'm sorry about the migraines. I have occular migraines with aura which throw me for a loop, more visual than pain. Last year it also affected my speech and we thought I was having a stroke so I was rushed to the ER for tests. Turned out to be another type of migraine. 

      Glad you have the migraine under control. Do you take meds for the palps?  I've had palps my entire life -  all kinds of testing didn't diagnose any problems. They stopped after my hysterectomy, which tells me it was all hormones. Migraine got better after that too. 

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  • Posted

    I think it's hard to tell most of the time for myself.  I mean, my temp is always low and I'm always freezing cold, despite my levels normal.  I would imagine it's because I'm anemic and also very thin, with like no body fat?  I would like to mention though, that what I have noticed, when my TSH starts to get off, I get depressed and my anxiety gets worse.  For myself, that's the first sign.

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    • Posted

      Thanks Melissa, I get ready and all crying for sure. Also very irritable, and it seems I tend to run into more crazies while out and about, than usual. Would be nice to hear things off before I get to that point.
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  • Posted

    Catherine this may not seem like much of a helpful reply, but it’s well intentioned.

    Let’s look at the facts: you have been off thyroid meds for 8 months. You don’t get tested anymore so presumably have no idea what your levels are.

    Now let’s review what you believe based on your experiences: thyroid meds make you sick, amino acid supplements are beneficial.

    The bottom line here, viewed objectively, is that here is a person who has lost faith in the widely successful approaches that medical science brings to thyroid disease, and is going her own way, self medicating, and is getting sicker.

    Catherine, it’s time review your mental model of what’s really going on with you. It’s time to get tested and at least get sense of where your levels are at. If, as I suspect, they are way out of line, try the medication again and establish a working relationship with a competent physician.

    Because going it alone, smart and analytical though you are, is just not working for you.

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    • Posted

      Dave, yes, of testing were helpful, I would. If the meds helped, I would. Testing is so delayed by the time it shows low levels, I'm like, yup, uh huh. Knew that. So it's a waste of my limited time and resources.

      Thyroid ranges are so broad that testing rarely shows out of range other than when I was on the meds. Then, you're chasing the numbers trying to get them "perfect", when there's such a lag, that you can't possibly use that as a basis for treatment. What use is a three month lag time? By then, I've figured it out on my own, and have implemented steps to improve things. 

      If I had waited this time to get tests before acting, I'd have only delayed my own misery. The symptoms show well before the blood work. I guess you could argue that I should get tested regularly, but really, the symptoms show before the blood work.

      Remember, I'm one of those who even with advanced disease, never had a TSH above 3. I just haven't gotten much of a benefit from running back and forth to the doc's office, getting the order, etc. 

      My point is that my blood work has never been an obvious indicator of symptoms to come. No point in trying to use it as such. It just doesn't work that way, because of the lag time.

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    • Posted

      Oh, that’s new news that you’ve never had a TSH above 3. Even after going off the meds? And I assume your T’s have been normal as well. Out of curiosity I have to ask: how were you diagnosed in the first place with a “normal” TSH. How long ago?

      Probably a dumb annoying question, but are we totally sure this is Thyroid and not something else?

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    • Posted

      I was thinking the same thing..  There should have never been a diagnosis with a TSH under 3.00..  Very odd..
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    • Posted

      Yes Dave, you missed that bit, huh? Yes, I'm sure it's thyroid disease. After decades of struggle... and more than ten years with a nodule. No, the blood work never showed particularly unusual until you start looking at rT3 and some of the less run tests. The NDT was helpful but never really worked quite right and the meds went downhill from there.

      I'm a perfect example of why thyroid disease is so difficult to diagnose and treat. Viryually ALL diagnosis and treatments is based on TSH levels. Unfortunately Hashimotos doesn't always work with this model. Graves, it seems, is more easily treated with this model.

      In fact, you could totally dismiss thyroid disease for me except the giant cyst and classic hypothyroid symptoms are unavoidable.  When you add on my history and other factors, it's the ONLY reasonable diagnosis.

      Since my TSH doesn't spike, suppressing it is worse than useless and just causes more problems. Honestly, with all the research I've done, I'm pretty sure I deserve a pHD in thyroid health. Thank god for my molecular biology and chemistry backgrounds. I don't know how other people could navigate this sort of nightmare. Glad to put all that hard work to use, I suppose. 

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    • Posted

      Graves tends to have very high TSH. Hashimoto's frequently does not present with a spiked TSH. 

      I can tell you, when my TSH is  up to 2.5, I'm nearly unable to move.

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    • Posted

      I'm a bit confused..  So you were never actually diagnosed with hypothyroidism by a doctor?  You self diagnosed based on all your research?

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    • Posted

      Melissa, heavens no. The thyroid disease was diagnosed when the cyst appeared. They just didn't call it Hashimotos. They did nothing to treat it or to deal with symptoms, as at that point, I was unfamiliar with thyroid symptoms. So I didn't bring my thyroid symptoms up to the endo and I was not asked. Get it? I was sent to an endo because I had a mass on my thyroid. It was examined, a TSH test was done. I was told to monitor it. Period, nothing more.

      Fast forward 15 years and the problem rears its head with a vengeance.  I eventually get to an endo who happens to be exceptional. What a stroke of luck! 

      Unfortunately, when I moved, I've still not been able to find a decent endo. I drove the 700 miles to my old endo when I was in really bad shape a few times. But ultimately had to work with what's available where I am, which wound up to be more damaging than anything. Everything here is these giant HMOs, the docs don't do clinical exams, and they don't look at the whole patient, they just read the computer and pass you around to different departments. If you tell them you have side effects from the meds, they ignore you, tell you that isn't possible, dismiss. It's been ridiculous.

      Meanwhile, while I was recovering from my crushed foot and all, I ended up looking after my mom with all her hospital drama, and saw objectively how medicine works. This was an education! I saw how her improperly treated thyroid disease eventually turned out, the train of meds that caused more side effects than anything, that all cause the disease they're supposed to treat, I read all the drug labels and made informed decisions for my mother. The more I weaned her off drugs, the more her health improved. I'm talking, you name it, she was on it. Name the old age disease, she had it. Name the drug, read the side effects. She was on hospice so we weaned her off her heart meds expecting her to die, but instead she improved drastically.  The hospice nurse told me this pattern was very typical. 

      I thought, is thyroid medication like the rest of the meds? No way, I thought. You die without it. Right? I mean, I have severely advanced thyroid disease. And after the Levo, my cyst had grown to the point that it cannibalized most of the right side of my thyroid gland. The other side wasn't in great shape either.

      At that point I was on an OTC  which eventually changed their formulation. I was allergic and I was fed up. Well, I did more research and found something that made biological sense. I tried it. It worked. It isn't perfect. 

      Oh, it's likely the cysts produce additional thyroxin, though dysfunctional, which could be another reason my TSH never spiked.

      Yeah. I worked in pharma back in my early days. Very different research than what you get at NASA. I can tell you that first hand. You can't legislate good science.

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    • Posted

      Okay.. so you were diagnosed with thyroid disease when the cyst appeared...   It's all kind of making sense now.  Perhaps you feel so bad on the medication because you never really needed it?   Up to 75% of the population has cyst on their thyroids.  It actually very common.  Just because a cyst is found or any type of thyroid nodule, does not mean you have hypothyroidism, nor does it mean a diagnosis of Hashimoto's.    Perhaps your doctor was wrong.  It's just a suggestion anyway.. I'd hate to see that your actually hurting yourself with all the stuff you take trying to treat yourself.  I really think you need to get your levels checked.   When you get your blood taken that day, that is what your level is at that time and should reflect with how you are feeling... sure, you have the lag time from the treatment itself, but once you find your optimal dose, it would be consistent.  Anyway..  like I mentioned, it's just something to think about, as you could actually be causing yourself more damage, if a change in your thyroid hormone's isn't even necessary.  I just hope you feel better...

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