Wise to reduce from 50mcg to 25 without consulting doc?

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Hi, i hope you can help me.  I was diagnosed with Celiac disease 2 years ago and this year was diagnosed with borderline hypothyroidism.  I've been on 50mcg of leveroxyine and before summer my levels were great.  I was re-tested this week and am now 0.008. This worries me as my doseage is so low and i dont really understand why I've ended up on the Hyper side ?!  Any ideas?     I cant get hold of my usual doc and am wondering if its wise to change asap from 50 to 25? ...  Any tips or advice would be most welcome.! 

Thanks

LKR

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6 Replies

  • Posted

    I am not qualified enough to suggest what dosage you should take ? But what I would advise is for you to have another blood test to see what your levels are?, as there may be another cause attributing to your condition ?.

    Hope that has helped a little?.  Best Regards. Carole

  • Posted

    Hello- Noooo!o NOT ower te dose!  Is the re-test you're refering to at 0.008 for TSH? If so, this is not a good indicator of your thyrod levels. The TSH measures the signal from te brain that tells the thyroid to produce thyroxin. It's pretty noral for the TSH to go very low when taking thyoid medication, so no need to lower your medication. It takes about three months for the blood work to level out, so that may be all it is. My doctor does a full panel every three months and looks at T4 and T3 as well as TSH, but does not use the TSH detemine the dose. You aso need to consider how you are feelng when determining the dose. If you are feeling well on the dose you're on, stay with it. 50mcg is a fairly low dose, so  I wouldn't worry too much. Good luck.
    • Posted

      thanks for your reply.  yes it was the re-test.  i started taking the medication in May and by july i was within the perfect range & my endocrinoligist was very happy.  I was then re-tested this week and my TSH is 0.008 which is very low - my T4 is 11.47.

      im told that a TSH at such a low value can affect fertility which is really why im keen to address the problem asap.  i do feel more fatigued, heart palpitations, etc... im sure its to do with the low levels.  

    • Posted

      I understand the fertility thing, but I got differing opinions on whether the TSH was important.  The most important thing to consider, is how delicate your system is. If your entire sytem is thrown out of kilter easily, it tells you that 1) you likely have had a thyroid problem longer than you think, and 2) your immune system has problems. Hard to tell which because they generally go hand in hand.  So keep this in mind.

      Rather than TSH, it's more important that the T4 and T3 are in range. It isn't an exact sciene. The ranges are generally determined by the labs who take the results from all the lab work done each year and use the everages to determine ranges. Not a great system because most people getting blood work done are sick. Keep this in mind for all bloodwork. Really progressive doctors use their own ranges (hopefully based on healthy people) in addition to the lab ranges. This is why even if you aren't in range, you may be fine. Fortunately, you are in range. Looking at my range chart (from my lab) anything up to 13.3 is still in range, so I certainly wouldn't be alarmed.  I found a sounce online that says up to 11.2 is in range.  Ranges are not static and are changed constantly, so I wouldn't be concerned about it. If your T3 is substantially lower (in the mid to lower end of the range), that may give you a clue that you don't have enought T3, which could be what's causing you to be tired.  The fact that your are still feeling tired indicates that some levels may be too low. Many people on thryoid medication need the levels to be in the higher end or just above to feel normal because, keep in mind that we're working with an artificial delivery system. We can only measure what's in the blood, not what it's doing, or whether it's actually getting into the cells and working. Big difference.  One difficulty with medicating the thyroid is that the high and low symptoms are very similar.

      Levothyroxin is a synthetic T4. In addition to T4 levels, ou should also be measuring freeT3 and total T3. T4 is converted into T3 in various cells in the body. 80% of the conversion happens in the liver and GI tract. If you've had stomache problems from the celiacs, this (along with the auto immune disease attacking the thyroid, since most thyroid disease is auto-immune, either Graves or Hoshimotos, which can be exaccerbated by gluten because the thyroid, stomache and other cells have surface proteins similar to that of the gluten molecule), well, if  your GI tract and liver are not in good shape, the conversion of T4 to T3 can be limited. The current belief is that T4 stays in the body about 2 weeks and is not particularly strong as far as it's activity, and T3 lasts only about 4 hours but is a lot more active form of thyroxin. You need both to work because they regulate the body's functions. You can see how, if the body needs a burst of energy, the T3 is necessary and T4 is converted as needed, etc.  My point is that if  your liver and GI tract are not fully recovered from the gluten exposure prior to your celiacs diagnosis, you may not have enough T3. If your T4 is high and your T3 is midrange or low, you may not be feeling well. My experience is that if either the T3 or T4 are not in the higher end of the range, I don't feel well. Unfortunately not everyone has the same pathology and there is no one size fits all, as doctors like.

      I also tried the fertility thing and spent nearly two years unable to get out of bed, while the "experts" told me where my blood levels should be and dropped my meds down to 20% of what was actually working to try and get the TSH in range. Anyone who is basing your meds on TSH numbers and ignoring the T3 and T4 values is not someone you wnat regulating your meds. Here's the really important point, I was so sick, there was no way I could have possibly gone through a pregnancy. So you need a doctor that can help you evaluate your symptoms and determine what will actually work. The tiredness and heart palpitations are likely symptoms of low thyroid. So your meds may actually be too low, rather than too high. Once I gots the meds high enough, my heart palpitations stopped, as did the tiredness.

      Depending on your immune system and how severe your celiacs symptoms have been, you may need to switch to a compounded formula, to assure that there are no corn products, dies, acacia or other additives that could aggrivate your immune system unnecessarily.

      Lastly, there are pretty much three kinds of meds: synthetic T4, synthetic T3 and natural dessicated thyroid (NDT-contains both T4 and T3). I tried the whole route with the levothyroxin, took a year and a half to get the dosing right, and in the end realized it didn't work properly for me because even when the bloodwork showed it was in the top of the range, I still didn't feel well. I finally got fed up with it and put in in the category of "this just does'nt work."  A friend of mine has also tried all the meds and went back to the NDT for the same reason. So the synthetic doesn't work everyone. The doctors seem to like it because there's more data on the use of synthetic meds with pregnancy.   The synthetic seems to work best for people who don't have any other heralth problems, but that's just a poll from talking with people, not anything scientific. Also, consider how your body reacted to the medication when you first started taking it. DId you have severe headaches or other symptoms?  If not you're probably OK with the synthetic. You hopefully are fortunate to have caught the celiacs early enough so that it hasn't taken down your immune system.

      If all that was not extraneous information and you do have advanced autoimmune disease, keep in mind that you may need to switch to a NDT. Do a compounded one if you can because even the NDTs have fillers and dyes that can irritate a sensitive immune system. The natural ones seem to trigger the immune system less for those people who are highly sensitive.

      I've gone to many "experts" and have already gone through dietary tribulations, etc. I had one "expert" who was convinced I needed a paleo diet, $1500 more in bloodwork, blah blah, blah. I wasted my $650 cost of the office visit because I've been limiting my foods for 20 years. If that were the answer I'd be cured by now. For me, the winning combination was the high levels of NDT (I'm on 150mcg), a great doctor, acupuncture, gluten-free diet, and clean, organic foods.

      I've found the best way to keep the body on track is with the help of a great acupuncurist. This can also help with the fertility, as this practice has been around for thousands of years. If  you are short on money, as can be the case with illness, many of the acupuncture schools have clinics with superb overseeing practitioners, and you can get excellent treatment for a minimal price. It's worth the time and money!

      I know that was probably a lot, but I thought I'd do my best to give you the benefit of my experience so you don't have to reinvent the wheel. Hope it was hlepful and good luck.

    • Posted

      Wow thank you SO much for your lenghy detailed reply.  Its lovely youve taken so much time to inform me more.  There's so much to take into consideration and im still trying to process it all.  I'll speak with my endocrinologist and seek the best way forward.  

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