Levothyroxine prescribed- How long did it take for you to feel better and what did you notice first?
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gaelicstorm26 wrote: »I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.
Surgery & radiation have inherent risks, so it makes sense to me that we take meds until the highs & lows of Hashimoto's are unbearable.0 -
Yes, mine is autoimmune and medication has not changed the fact that I test positive for antibodies with every blood test. Unfortunately, one autoimmune disease can lead to others, and I have recently been diagnosed with Vitiligo (your body attack the melanin in your skin). Fortunately, when caught early, topical steroids can help stimulate pigment regrowth. I'm also monitored closely for developing lupus, as I have begun to show allergic reactions to sun exposure.
My endocrinologist's best guess for my trigger was that I had mono about 3 years before being diagnosed with Hashi's, and that if this was caused by the Epstein-Barr virus, it could have triggered the Hashi's. I was sort of accidentally diagnosed, actually! And yes, 11 is not a usual age for diagnosis. Diagnosis usually occurs much later in life, during the middle-age years.
I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.0 -
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Thank you, midwesterner85. I looked it up.0
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Eileen_S and toadqueen - Thanks for your responses. The more I read and the more responses I receive, it seems (not too surprisingly) that our bodies all react differently. I think this is going to be a journey and will take some trial and error to find out what works best for me. I'm grateful that my doctor seems open to various options, which does not seem to be the case for my other people dealing with this.
This is so true about how people's bodies respond differently to medications. It may take a while, but hang in there because eventually you and your doctor will find one that works best and you'll begin to feel better again.0 -
editorgrrl wrote: »gaelicstorm26 wrote: »I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.
Surgery & radiation have inherent risks, so it makes sense to me that we take meds until the highs & lows of Hashimoto's are unbearable.
I suppose that's true. Too bad there isn't more that they can do. It's so crazy that I can have a normal test and 6 months later test and get a 28. It would be nice to be somewhat steady!
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Four days on levothroxine and I'm seeing changes - hoping it's not the placebo effect - but I don't think so. By end of day 1, I noticed changes in my skin color. I have very pale skin but for a while, I have looked like "death warmed over." Now I actually have some color in my skin. My heart rate and blood pressure have come up a bit (they have been very low) so I'm guessing it's due to better circulation. Waking up early - My dog has not had to rouse me out of bed to take her out. I've been waking up before 7:00 a.m. without an alarm clock. My skin has been terrible for a long, long time - so dry and scaly. Noticeable change in feel and appearance (although still a long way to go). Muscle changes - tight muscles are relaxing. Most noticeable is some relaxation in a persistent knot in my neck/upper shoulder that has caused so much pain and tight jaw and forehead muscles that have caused terrible headaches. The muscle tightness and headaches remain but are significantly diminished. I'm less 'puffy' and have lost 3 pounds in 4 days - clearly, it's water weight. So, I'm feeling hopeful! The only negative so far is that taking the med before bed seems to be causing some reflux so I'm going to try to take it earlier in the evening. Thanks again to all of you for your insights.0
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I'm glad you're feeling better! If I remember correctly, it takes about 4 weeks for the dosage to show up in your serum and be reflected on labwork. I think we are all so different with medication. What works for one doesn't work for another!0
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midwesterner85 wrote: »Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication.
I'm not sure how medication is going to reduce antibodies unless you are taking imune suppressants, which you would have to take forever... and that is very high risk because exposure to other viruses and bacteria will be more likely to harm you.
As far as the cause of Hashi's, it is 2 things (you must have both):
-Problems with the HLA genes on chromosome 6
-Trigger for the autoimmune response
You cannot change your DNA... you are born with SNP's that your biological parents passed down to you. It sucks, but that's the hand you were dealt.
You cannot go back in time and stop the trigger for an autoimmune response. Time travel is not available.
Botom line: Once your immune system starts treating cells in your thyroid as a foreign substance that must be attacked, it will always see them that way. Our immune systems are not advanced enough to declare cease fires and stop attacking cells that it thinks need to be removed. The only way that outside substances have been able to get past our immune systems for a little while is by disguising themselves. This is why the influenza virus has mutated so many times.
I don't remember the mechanism exactly, but I do remember there being some studies a while back showing that early treatment could reduce inflammation/autoimmune response and helping to retain as much of the natural thyroid function as possible. So, that's why some doctors were advocating treatment once a diagnosis was made rather than the conventional "wait and see" most were taking previously (i.e. wait until blood tests show up abnormal even if patient was experiencing hypo symptoms -- how many of us were told that we were 'within range' and just had to suffer).
This is purely my supposition, but my guess would be that if you're supplementing with artificial hormones, your body doesn't need to attempt to create as much of your own. So whatever your body is attacking in that pathway in the autoimmune response is reduced because the pathway is reduced because more of the hormones are coming from an artificial source.
TPO and Tg antibodies are the two most common (or at least the two we have a blood test for), but it's my understanding that they believe Hashi's can attack other parts of the process so produces other types of antibodies. That's one of the reasons that the ultrasound showing inflammation is one of the means of diagnosis as someone can have Hashi's (as shown by the inflamed thyroid in an ultrasound) but actually show up negative for TPO and Tg antibodies (leading to the conclusion that other inflammatory response is occurring).
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lindsey1979 wrote: »midwesterner85 wrote: »Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication.
I'm not sure how medication is going to reduce antibodies unless you are taking imune suppressants, which you would have to take forever... and that is very high risk because exposure to other viruses and bacteria will be more likely to harm you.
As far as the cause of Hashi's, it is 2 things (you must have both):
-Problems with the HLA genes on chromosome 6
-Trigger for the autoimmune response
You cannot change your DNA... you are born with SNP's that your biological parents passed down to you. It sucks, but that's the hand you were dealt.
You cannot go back in time and stop the trigger for an autoimmune response. Time travel is not available.
Botom line: Once your immune system starts treating cells in your thyroid as a foreign substance that must be attacked, it will always see them that way. Our immune systems are not advanced enough to declare cease fires and stop attacking cells that it thinks need to be removed. The only way that outside substances have been able to get past our immune systems for a little while is by disguising themselves. This is why the influenza virus has mutated so many times.
I don't remember the mechanism exactly, but I do remember there being some studies a while back showing that early treatment could reduce inflammation/autoimmune response and helping to retain as much of the natural thyroid function as possible. So, that's why some doctors were advocating treatment once a diagnosis was made rather than the conventional "wait and see" most were taking previously (i.e. wait until blood tests show up abnormal even if patient was experiencing hypo symptoms -- how many of us were told that we were 'within range' and just had to suffer).
This is purely my supposition, but my guess would be that if you're supplementing with artificial hormones, your body doesn't need to attempt to create as much of your own. So whatever your body is attacking in that pathway in the autoimmune response is reduced because the pathway is reduced because more of the hormones are coming from an artificial source.
TPO and Tg antibodies are the two most common (or at least the two we have a blood test for), but it's my understanding that they believe Hashi's can attack other parts of the process so produces other types of antibodies. That's one of the reasons that the ultrasound showing inflammation is one of the means of diagnosis as someone can have Hashi's (as shown by the inflamed thyroid in an ultrasound) but actually show up negative for TPO and Tg antibodies (leading to the conclusion that other inflammatory response is occurring).
I'm not sure that the autoimmune response would be any slower to attack less active cells, but I haven't seen any research to study that hypothesis.0 -
midwesterner85 wrote: »lindsey1979 wrote: »midwesterner85 wrote: »Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication.
I'm not sure how medication is going to reduce antibodies unless you are taking imune suppressants, which you would have to take forever... and that is very high risk because exposure to other viruses and bacteria will be more likely to harm you.
As far as the cause of Hashi's, it is 2 things (you must have both):
-Problems with the HLA genes on chromosome 6
-Trigger for the autoimmune response
You cannot change your DNA... you are born with SNP's that your biological parents passed down to you. It sucks, but that's the hand you were dealt.
You cannot go back in time and stop the trigger for an autoimmune response. Time travel is not available.
Botom line: Once your immune system starts treating cells in your thyroid as a foreign substance that must be attacked, it will always see them that way. Our immune systems are not advanced enough to declare cease fires and stop attacking cells that it thinks need to be removed. The only way that outside substances have been able to get past our immune systems for a little while is by disguising themselves. This is why the influenza virus has mutated so many times.
I don't remember the mechanism exactly, but I do remember there being some studies a while back showing that early treatment could reduce inflammation/autoimmune response and helping to retain as much of the natural thyroid function as possible. So, that's why some doctors were advocating treatment once a diagnosis was made rather than the conventional "wait and see" most were taking previously (i.e. wait until blood tests show up abnormal even if patient was experiencing hypo symptoms -- how many of us were told that we were 'within range' and just had to suffer).
This is purely my supposition, but my guess would be that if you're supplementing with artificial hormones, your body doesn't need to attempt to create as much of your own. So whatever your body is attacking in that pathway in the autoimmune response is reduced because the pathway is reduced because more of the hormones are coming from an artificial source.
TPO and Tg antibodies are the two most common (or at least the two we have a blood test for), but it's my understanding that they believe Hashi's can attack other parts of the process so produces other types of antibodies. That's one of the reasons that the ultrasound showing inflammation is one of the means of diagnosis as someone can have Hashi's (as shown by the inflamed thyroid in an ultrasound) but actually show up negative for TPO and Tg antibodies (leading to the conclusion that other inflammatory response is occurring).
I'm not sure that the autoimmune response would be any slower to attack less active cells, but I haven't seen any research to study that hypothesis.
I'm thinking about it from a trigger response perspective. If you have 10 viruses, you'll get 100 antibodies (just using number for sake of argument). But if you have 20 viruses, you'll get 200 antibodies in a response. So if you reduce the number of the trigger (whether it's a virus or an autoimmune trigger substrate), then your antibody response is likewise reduced.
If that trigger is not the end-hormone (T3 or T4) but a protein or other substrate in the pathway and you replace that end-hormone with an artificial replacement (NDT or synthetic T4 or T3), then you'll likewise produce less of that trigger protein because that pathway isn't be activated as often due to lack of need of the body to produce that end-hormone as much.
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Hi. I had Graves. Was finally diagnosed in 2001, but got sick in 1992 - undiagnosed for 9 years. After I had RAI treatment my thyroid is 100% dead so my endo has me on synthroid. For a while I was on generic, but developed a reaction to it that caused my hair to fall out. So I'm on synthroid proper now. Other than that rare reaction there was no difference between the two meds for me.
I am also vitamin D deficient. I assumed its because I'm allergic to milk, and that can happen.
Good luck. It might take a few weeks for you to start feeling the meds in your system, but it's might take a while to find the level that is right for your body.0 -
I had low back pain from muscle spasms that were apparently part of my symptoms (though atypical as a hypothyroid symptom)--taking thyroxine was like taking a muscle relaxant without fogging my head, within an hour of taking it. I noticed general body ache improvement within 3 days, and that was with only 50 or 75 micrograms--my appropriate dose is 125 micrograms and that's what I've been on for a year and a half now.
Hey! I have eyebrows!0 -
Thanks hbpslo and LAT1963 for sharing information. hbpslo - I haven't noticed my hair falling out so much as I seem to have some of it breaking. I read that this can be a temporary side effect. LAT1963 - I too have had the same reaction in terms of relaxed muscles. I have an unrelated genetic form of early onset arthritis (my dad, aunt, and two siblings also deal with it) and it has caused compressed discs, bone spurs and spinal stenosis in my lower back and neck. Within a day my muscles were noticeably relaxing, easing the tightness and related pain. I didn't expect this reaction. I am feeling hopeful that issues that were being attributed to the arthritis were being made worse by the thyroid issues and will improve with the thyroid meds.
General update - After a week and half there is a noticeable difference in my skin and nails. Headaches have been reduced considerably. Less tired. Face and ankles less puffy.
Thanks again to everyone for sharing your experiences and insights!0
