How did you feel whilst lowering a dose?

Posted , 7 users are following.

Hi, I’m currently 4 weeks into lowering my thyroid dose by 25mg as I wasn’t feeling too good and I’m wondering how did most people feel when they lowered their dosage please as I’m up and down and all over the place? 

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  • Posted

    Hi James, for what its worth,  the for changes were pretty tough for me. I feel the body becomes very dependant on these medications, making it very difficult to go off. I’ve tried a bunch if different meds and doses. When i was lowering the NDTs a little, it didn't seem to be much of a problem as long ss they were only lowered a small amount at a time and really did need to be lowered. I was so messed up while on the Levo, I’m not sure I can remember anout loering a little- I just felt horrible all the time (really bad anxiety and brainfog so cant quite recall a consistant response when lowering small amounts). Changing meds was for sure a nightmare.

    I know this sounds very strange, but the meds do suppress your own production of thyroxin.  So if you lower your dose, it takes a while for your body to adjust. 

    Try some essential amino avid supplements. I found them to be extremely helpful when i was getting off the meds. 

    I also found acupuncture helpful in navigating thyroid disease, as it seems to help the body reset and get back to normal more quickly.

    Just curious, did your labs show your meds were too high? Are they iskng TSH or T4 to guide dosing? 

    Are the meds working for you?

  • Posted

    Also... you're up and down all over the place? 

    I feel the meds themsrlves interruptef my own oroduction of thyroxin such that it was impossible to get the dosing stabilized. 

    My end conclusion, for what its worth, is that the endocrine system is too comllex to try to treat at this point in the thyroid feedback loop. 

    I suspect that these meds suppress more than just the TSH production by the pituitary gland. And likely suppress other aspects of the pituitary gland- basically supression of the pituitary function can really mess you up since it controls your entire endocrine system.

    Please try keeping a journal of how you’re feeling and what dose changes youre dealing with. This is the best way to determine whether these medications are helpful or not.

    • Posted

      Thanks for your reply, I have Graves’ disease but I’m on the block and replace mehthod.  My blood results showed I was slightly hyper at 125mg and my endo advised me to decrease to 100mg.  But I’ve been feeling hyper sometimes by having intense anxiety and heart palps and then hypo where I’m just completely exhausted and have no strength have to sleep but no heart palps.  Then there’s the brain fog.  What a nightmare.   Wish my endo earned me about this first.  I just hope this is normal after a decrease and I hope it doesn’t last too long. 
    • Posted

      If you were a Hashi hypo you wouldnt have the palp and anxiety on a decrease...Grave's is a horse of a different color as they say. You still hv your thyroid and Grave's antibodies. Maybe you can ask another question about Grave's block and replace and being allover the place. You need more input from Grave's ppl. You can do a web search on Grave's block and replace and then look at the many videos from Grave's sufferers and the comments under the videos. You are not alone there are many going through the same ordeal and feeling the same varied symptoms hyper and hypo. Keep your doctor informed about what's going on don't wait for next appt.

    • Posted

      Hi MVC: Are you taking Thyrogold?. How have your blood tests been? It sounds like a good alternative if.they.maintain the same dosage. I know glandulars can vary. Any info would be appreciated. I read.reviews.but would like to hear your opinion. PS T3 (generic) is available in USA. at any DReade CVS RITE AID etc. Cytomel is the brand. T3 (generic).5mcg added to 150mcg Levo can.be too.stimulating. Maybe T3 alone isnt that powerful.

    • Posted

      Hi Mar, my mother is on ThyroGold. I haven’t tracked her blood levels too closely, but they have been fine in the scheme of things. She’s had her thyroid gland removed. She’s doing tons better on the ThyroGold. Better in fact than she’s been in decades.

      I had tried a different bovine glandular for myself, which worked well getting off the levo. Unfirtunately, they amped up their manufacturing and I noticed a difference in the product, to my detriment. I stopped immediately and tried  essential amino acids in large doses. I now take essential amino acids as needed to treat my thyroid disease. It works better than any medication. I believe the essential amino acids should be the first treatment for thyroid disease.  Although my mother takes ThyroGold, she also benefits from the essential amino acids and they make a difference for her, allowing her to keep her thyroxin replacement dose rejatively low and still function quite well.

      There is a fear that non prescription meds don’t have as good quality control as prescriptions. Not true. Prescription thyroid meds are allowed a variation of */- 10% of label. Pharma companies don’t care how close they are to the label dose, only that they neet specs- they dont scrap a whole batch because it is only 90% of label dose. So you can get as much as 20% difference in dose between lots. That’s a flippin’ roller coaster for thyroid patients. In addition, pharma companies change their formulations frequently  and are not required to apply for new drug approval. It took literally decades before I finally got thyroid medication. By then, my immune system was so shot that I am very sensitive to formulation changes and I can tell you drug companies change frequently! 

      I actually tend to trust an OTC manufacturer more than I’d trust a pharma company. (I used to work in pharma- don’t trust them for anything niw that I've cycled through ten different thyroid drugs.) Their science and statistics are bad and unethical, done for the most part by money grubbing business people, who’s ethics are driven by invisible investors. The belief that you are protected by the FDA is false.  Once you realize this, you can start truly looking for something that works. That’s the harsh truth of it. 

      I have been shocked at the simplicity of the amino acids. There is biochemical rationale for why essential amino acids are so helpful for thyroid disease. I dont know why it isn't used (well, I do know, there isn't any patent capability.)  If I can figure it out even with my hypothyroid/ levothyroxin induced brainfog, it has to be obvious to ANY biochemist who takes the time to look at the problem.

      Seriously, try the amino acids, their effectiveness is shocking. 

      If you've had your thyroid gland removed, you’ll need some thyroxin replacement. ThyroGold is the best.

      Try a combo of the two. My mother takes a 300mg ThyroGold capsule in the morning and alternates night time doses of 150 and 300mg. She takes two essential ammino acid capsules per day-  its 75mg each of all hhe essential amino acids, two capsules per day soead out- one taken each with lunch and dinner.

  • Posted

    James and everybody else. Im on 150mcg of Levo and Im calm as can be no anxiety at all no unwanted symptoms even at 200mcg. Maybe getting meds at a high TSH and when my antibodies not causing any dumping of excess hormones. Guess bc they start treating at a much lower TSH tht ppl are experiencing sides. My. TSH is suppressed prob bc my pituitary is getting plenty of T4. But it's my TSH that is suppressed NOT my pituitary or other pituitary hormones.

    • Posted

      Mar, are you taking any other meds?

      I’ve  seen a couple others post here that they don’t have side effects from the meds.

      After seeing their many posts, i eventually concluded that there is a huge variation in these meds due to manufacturing practices. The meds you describe can’t possibly be the same as the ten different ones I tried. 

      Keep in mind, the way prescription meds work from a business model. Natural products cannot be patented. Companies take a natural hormone (thyroxin, estrogen, testosterone, HCG, whatever!) and devise a way to produce it synthetically. They’ll never get it exactly the same as the real stuff, but that’s  just as well, because as long as the molecule is slightly tweaked from the original, the company enjoys a blissful 15  year monopoly, free of competition. 

      Keep in mind that our own bodies use basically the same molecule- a  tyrosine (natural is L-tyrosine) molecule with iodine attached and the body removes and replaces iodine and makes other variations to get the various types of thyroxins. The difference between T3 and rT3 is only a very slight variation of the same molecule. Yet the function of T3 and rT3 (reverse T3) are basically opposites. One (T3) is a highly active thyroxin, the other (rT3) binds up the highly active T3. When T3 levels are high, the body regulates by converting some of the excess T3 into rT3. This rT3 then binds up any excess T3.

      When manufacturing, d-tyrosine is used because it is the synthetic version (cheaper to produce than natural). This is a slight variation from natural tyrosine and reacts different in the body than the natural L-tyrosine. The difference is a slight variation on a bond that joins molecules. Under a microscope, the changes in types of bonds are known to affect the way light reflects off a molecule. The manufactured d-tyrosine is cheap and easy to mass produce.

      You’re probably bored to death with all this molecular stuff. The bottom line is that these meds have molecular variations greater than what our own bodies use to regulate thyroxin levels. There’s no way the meds can possibly work properly.

      If as I suspect, the meds you and the two other people take are different, it coukd be that the manufacturer’s process somehow produces a product more similar to the natural thyroxin, they use different raw materials... basically the manufacturing process (in your meds)  is different enough from most of the other synthetic thyroxins, that the product reacts differently in the body. Keep in mind, pharma companies keep their actual manufacturing process a protected secret. Generics can be produced by the original patent company or by other companies. When companies make a generic, they don't get the recipe from the patent company, they have to develop their own formulation by trial and error. Then the company must show that their drug is within a certain percentage effectiveness of the original, theyvcsll this efficacy. Even if a company got the exact recipe from the parent company, the manufacturing process is generally so complex that its highly unlikely that the product would be exactly the same, as so much information about the manufacturing processes are tacit or even built into the facility and may not even be known.

       As manufacturing processes move to third world countries, there are absolutely unavoidable formulation changes. Thyroid patients are sensitive to these changes. Keep in mind the lab tests for quality testing are by nature much less sensitive than the human body. While a company might have ten tests at every step of the manufacturing process, your body might have ten steps for every molecular reaction in the body, each of which has its own quality control mechanism built into the body. When the body produces something (a molecule) incorrectly, it either breaks the molecule down and  reuses the parts, or the immune system constantly attacks and takes “tweaked” molecules out of circulation.  We have many elimination processes in the body and  expel huge amounts of unneeded material daily.

      In the end, my point is that the few people who say their meds are working are more likely taking a different formulation/ variation of the drug than that our bodies are so different that there’s  such variation in efficacy and side effects. Even from a statistical view, (on this site) the few people who say the meds work are the outliers, while the norm (dubjevt) appears to exoerience an inneffective drug with more side effects than benefit.

      But because nothing else is offered by docs, people think they don't have a choice. Simply, if you want choices, shop someplace else. You won’t  find tomatoes at the butcher shop. A doctor’s office is a business that offers a certain range of products. Drug stores that fill prescriptions offer a certain range of products... insurance companies only pay for certain services and products. 

    • Posted

      Mylan levo. I'm sure you have it in UK. But doesn't seem to be the dosage it says and my T values dropped some without any change on my part. I was.on Levoxyl before.with better lab results. I dont feel any sides w these T4 meds but if I add T3. 5mcg feel bit jittery that's the only time.

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