Lowering Levothyroxine

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Hello, I was hoping someone could elaborate on my levels. I just got my blood results back today and they are lowering me from .112mcg of levothyroxine to .100mcg. They told me my TSH level is .170 and my T4 level is 1.5, I have no idea what this means, but I do know I have been miserable. My resting bpm has been 140 and I have been feeling like I want to come out of my skin. Functioning from day to day has been difficult and I have also been having bad constipation. Thanks for reading.

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  • Posted

    Hell Annamal,  First, how long have you been on this dose of the meds? It takes a full three months for things to completely level out. So if you're changing prior to that, there should be a good reason, usually based on symptoms of being too low. The reason being is that if you retest too soon, especially in less than a month after changing meds, you can get a spike in your T4 levels and falsly low TSH. Those level out after a while longer.

    It may be that they're lowering your thyroid meds based on your TSH. That is innappropriate, as TSH only indicates what your brain is telling your thyroid, not what your thyroid's doing, and it doesn't tell you anything about anything else hoing on or even whether your body is using it. Once the signal is sent from the brain, many other things can happen.

    A quick search for T4 ranges online shows your T4 is well within range. But check the units, just in case. Which would indicate your doctor is basing the dosing on the TSH.

    Thyroid medication for some people will zero out the TSH, so low TSH is not a problem. Unfortunately a lot of doctors don't know this. But it depends on your condition. You didn't say what your T3 is. Was that tested? And was the T4, total T4 or free T4? Do you have a cyst, as seen with an u ltrasound, or that you can feel?

    My guess is that if you are still having symptoms of low thyroid, sluggishness, constipation, etc, the levels are too low. If you are feeling excessively energetic, that can be high thyroid. But, frankly, increasing from 100 to 112 wouldn't cause you to go hyper thyroid enough to notice, so you're probably still low. If you're new to thyroid disease,  you should know that doctors tend to underdose thyroid meds. I swear they act like you're asking for crack or something! Really all we want is to feel well.

    Also, the levothyroxng is a T4 only med, so you need to look at your free T3 levels to see what's going on there. If you have stomache or intestinal problems, you probably have low production of T3 (T4 gets converted to T3 in cells, mostly in the gut, but to a lesser extent in other cells. My experience with the levo has been that when I got the T3 high enough to feel good, the T4 was over range. When I got the T4 in range, the T3 is way too low.

    How do you know your T3? blood tests. Also, if you've had extreme stress, you could also have adrenal exhaustion (typcial with low thyroid), and the adrenal exhaustion can cause your T3 to be lower. So if you're taking the T4 only med, it won't work.

    My point is, that unless you're extremely healthy, except for the low thyroid, you probably need to at least do some research on the T4/T3 medication. People with low thyroid also tend to have food sensitivities, so getting a medication without any additives is also important.

    Now, a point about the meds... The naturals tend to work better than the synthetics (prescription levothyroxin is not natural). I am not a fan of levo because a look at any chatroom, and you can see that the natural (NDT, natural dessicated thyroid) works much better. The natural is generally made from procine thyroid, and has a much higher T3 to T4 than humans, so with this, you get the opposite as with the levo: the NDT has a higher than human level of T3, so the bloodwork results in T4 in the midrange with T3 high.

    If your T3 is low, your energy will be low, if T4 is low, your brain won't work. So they need to both be in range. Thyroid patients usually find that their levels work best when they are midrange or higher. For this reason, it's better to be a  lttle high than too low on either the T4 or T3.

    The levo never worked for me at any dose, and the higher the dose with the levo, the worse the side effects.  I've heard this from other people as well.   The porcine NDT is much better as long as you don't need too high of a dose. If your dose is high on the NDT, you'll get the increases in T3, so it's hard to keep things in range. That said, it's always better to keep the dose a little high, rather than a little low. For example, for me on a high dose (nearly 200) of the NDT, my T4 was ow last week, so my brain wasn't working.That's really bad, of course. So I increase the dose, which results in high T3, which causes anxiety.

    My point is that it's very difficult to regulate thyroid as the dose goes higher/ or as the condition worsens.

    I'll be trying out a bovine natural in a few days because I can't deal with the high T3/low T4 issues I'm experiencing. I'll keep you posted here to let folks know how the bovine works.

    Hope that helps!

    Catherine

    • Posted

      Hi Catherine, as you know I am on the bovine NDT and have been since 23rd June 2015mineralsel way better than I did on levothyroxine probably because it hasn't got the fillers in that levothyroxine has. I'm intolerant to maize starch (aka corn). This bovine NDT is classed as a nutritional supplement. As it is classed as a nutritional supplement there is no regulatory body overseeing its claims and quality. However, I have now used up several bottles of tablets and have not noticed any change in strength (and levothyroxine is allowed to deviate +/- 10% from its stated dose!) So my experience is that quality isn't a problem.

      There is concern that some thyroid supplements have iodine in. Iodine is like many things, essential to health but toxic in too high a dose. So I've looked up the symptoms of iodine toxicity and can report that I have not [yet?] developed any of the symptoms - which i would have thought I would have done by now. I have also dropped a note into my doctor asking if he is able to do a blood test to check my iodine level. I'm awaiting his reply. Good luck with your trial. I hope it works out as well for you as it is doing for me.

    • Posted

      Sorry for the glitch. That was supposed to say' I feel way better than I did on levothyroxine'.
    • Posted

      Thank you for all the amazing information. Sorry I haven't gotten back sooner. They lowered my levothyroxine dose 5 weeks ago from .112mcg to .100mcg and 6 weeks before that they lowered me from .125mcg to .112mcg. I'm having insomnia and panic. I fall asleep for a couple of hours but wake up angry/panicky. I'm still having horrible constipation. This concerns me about my doctor basing me off of my TSH because this is what they told me my issue was. I feel I should go to a specialist because I don't feel like I'm feeling any better. I feel like I'm going crazy and I am also breaking out all over my face. I feel like when I was prescribed .137mcg a year ago I didn't have these issues. It's hard to say if I felt normal or not though because I was on celexa at the time. This month I've had an extremely short menstrual cycle. I started my period like between the 5th or the 8th of December and I just started again today. I feel like I have low energy/motivation but like my body is in fight or flight mode as if I have too much adrenaline. Ugh! I'm so tired of this!
    • Posted

      Hi Barbara,

           How long did it take for you to feel better on your new med? Which medicine are you on now?

      ~Anna~

    • Posted

      Hi Annamal.

      1) Every six weeks is too fast to lower the dose. It takes three months to level out. But it sounds like you should be increasing rather than lowering, by your symptoms. 

      2) Yes. Absolutely see a specialist. You may need to "shop" doctors until you find not that will work with you. A health professional recommended this to me and it was very good advice!

      3) From my own experience, I can tell you that the TSH doesn't always do what they think it does. Especially if you have a growth/cyst or goiter. Abnormal thyroid cells often have greater numbers of insulin receptors and can actually be triggered and controlled by insulin in the body. This totally interrupts the feedback loop, that TSH is used as an indicator for, rendering the TSH measurement useless for dosing our purposes for some people. 

      4) It's extremely important to find a doctor who considers your physical symptoms as an indicator for the dose!!! The way you feel can be valuable information towards helping you get the right dose! Using blood work only can be really horrible!

      5) Get yourself to a really good acupuncturist, trained in the Orient. Go weekly while until you're able to get the meds right. This will help get your cycle back on track and keep the body in better condition while you're getting the meds right.if you cannot afford one, most acupuncture schools offer a low cost clinic. This is super important, as without the acupuncture, it will take months or years to get your cycle and hormones back on track.

      6) sounds like you're also having adrenal exhaustion. There are herbs that can help to treat this. I found bladderwrack and vitex to be helpful.

      7) The last two items,  (5,6) although you're overwhelmed, are extremely important, as when your thyroid is down, all the other hormones in your body also go down, causing pretty much all out system failure. There are books available on how to use herbs to help get most things back on track. 

      8) Be patient with yourself. It's likely brain fog has taken over making it difficult or you to think and find solutions for yourself.  This us one reason this site is so valuable. If you're in trouble, you can always pm me, or someone else for help.

      9) I have also switched to an OTC. I immediately felt better, and feel like I've been detoxing this toxic levo out of my system! Take your power back and find a solution to help you get well again!

      C-

    • Posted

      Hello Catherine, good advice. Just one thing, in point 3 did you mean to write 'thyroxine' receptors, not 'insulin' receptors? Also by OTC I believe you mean Over The Counter Natural Desiccated Thyroid (NDT)? Barbara
    • Posted

      Hi Anna, I'm taking ThyroGold. I bought it over the internet having run out of options because I became allergic/intolerant to maize starch which is in all the synthetic thyroxines provided by the NHS. NatureThroid also made me swell up. As did liquid thyroxine. I followed the advice on tpauk on how to dose with NDT (Natural Desiccated Thyroid), which is to start on a low dose and increase slowly, so it took me about 3 months to get to the right dose, though I started to feel better much earlier, probably about 2 weeks (I can't really remember). I'll PM you the link to the site so you can work out for yourself whether it is right for you. I'm not medically qualified, this is just what worked for me. It was someone on this site who told me about ThyroGold when I was desperate and I am merely trying to do the same. Good luck. I'm happy to answer any questions you have. There is a questons and answers section on the ThyroGold website which is good. Also i found the link to pdfs for 3 free chapters of a book on how to dose with it and how to monitor your symptoms and spot overdosing very helpful. Barbara
    • Posted

      Hi Barbara, on point 3, I did mean insulin receptors. All cells have insulin receptors. The abnormal cells found in thyroid cysts appear to have more insulin receptors in them. The excess insulin seems to trigger cells to metabolize more, and in this case, thyroxin gets produced, this makes the TSH less likely to be an accurate test for thyroid stimulation. The reason these abnormal cells develop is because we aren't producing enough thyroxin, because either we don't produce enough TSH to begin with, or the TSH we produce isn't working right. 

      And yes, OTC- over the counter. Meaning you don't need a prescription. In this case, I am using a bovine glandular. I abs ilutely love it!

      Lastly, I am absolutely convinced that the prescription NDT I was taking contained synthetic thyroxin in part. I've taken the NDT in the past and did not have a bad reaction to it. However, when I went back to the NDT after a year on the levo, I was still having the massive water retention and weight gain, but to a lesser extent. Since I was a stable size 4 prior to all this and ballooned to a size 12 with the levo,  I have to attribute this to the levo. If there wasn't levo in the NDT, I'd have lost some of that weight after a year on the NDT.   

      Im doing much better in the OTC,

       

    • Posted

      Barbara, my research into thyroid cells also yields one other simple conclusion. If these abnormal cyst and goiter and tumor cells have a greater number of insulin receptors, the insulin receptors should be used as a non invasive diagnostic tool. Simply do a needle biopsy and do an antibody test for insulin receptors. 

      It it is known that all tumor cells gave more insulin receptors than other cells.  

      Im just saying, this s a very simple test that could be implemented across many diagnostics, that isn't because there isn't a patent in it. How messed up is that?

    • Posted

      So thats 2 things we know of that could benefit hypothyroid patients that isn't being pursued because there's no money in it. The other being trials of NDT for the 15% of hypothyroid patients that don't thrive on synthetic thyroxine. Hmm.
    • Posted

      Thanks Barbara. Yes. It kind of blew my mind, when I found a bunch of articles about this!
    • Posted

      so you had weight gain from levo? did u have muscle pain too

      were you on t3 cytomel as well?

    • Posted

      My doc switched me from Naturthroid to levo... I started on Synthroid. In less than two months, I went from a 32C to a 36DD, a size 6 to a 10... Massive water retention, migraines so bad, I feared I could have a seizure, couldn't even get out of bed for days. And, yes, of course everything hurt and I had fibromyalgia symptoms, symptoms of heart failure, panic attacks, it was horrible. I tried generic levo, compounded levo, which were progressively better, but the levo really didn't work properly for me at any dose, no matter what manufacturer. Once on the "right dose" it was somewhat better, and the panic attacks decreased, along with some of the other symptoms, but, really, I felt horrible and exhausted all the time, couldn't think straight.

      I was was not on cytomel. 

    • Posted

      I got muscle pain when on levothyroxine and the dose was wrong. Now I'm on NDT I get muscle pain if I eat certain foods (fruit).
    • Posted

      Hello 

      I want your help plz

      I am over medicated with the synthyroid and my current tsh is 0.03

      And doc reduced my dose from 112 to 88

      All the other symptoms are getting better like dizziness , living in fog , panic attacks, and little bit off balance , and insomnia

      But I am not feeling my self. Like no energy at all

      I don't know the difference between sleeping , don't know that I m hungry or not , and anxious all time

      Is these things are normal with dose adjustment ?

      Plzzzx tell me 

      Today is my 5 th week of day 1

      . I want to b my self again

      Every body said u are just making up things and get up to do all the house work .

      No one listing to me they laugh on me when I told them symptoms

      What should I do

      And doc did not give me any anxiety med with that he said anxiety is its symptoms so it went with that .

      Plzzzzzzzzzzz help me

    • Posted

      Hi Sania, I had horrible anxiety on the Levo. It really didn’t work for me at any dose and caused more side effects than the disease.  

      You aren’t lowering it much so you should have a huge reaction. However, the way you describe how you feel makes it sound like you’re really spacey.  It could be that you’re experiencing temporary low thyroid as your body adjusts. It’s posdible you’re experiencing  side effects from the medication, as you adjust it, you may be more or less aware of long term and short term side effects. 

      Can you look at the insert that comes  with your medication to see how much of the stated side effects you’re experiencing?

    • Posted

      Yeah 

      I think most of the symptoms .is it possible to do blood test like I am in 2nd day of 5 th week . 

      Or should I have to wait for 6 weeks?

      Can u plz explain me how tsh works ?

      Is it going worse then gradually getting better?

    • Posted

      One more thing I really really had bad dreams almost every day 

      ?

      Is it normal in this situation?

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