All Aboard the Autimmune Train

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I have autoimmune hepatitis and was diagnosed with Hashimotos 1 month ago with TPO of 295. I have just been diagnosed with Sjogrens Syndrome as well. My rheumatologist is ruling out Myasthenia Gravis ( which often comes with Temporal Vasculitis).

I do not get her opinion until another 6 weeks however my labs look like I’m negative for M.Gravis.

My concern is heart pounding. I have been getting intermittent mild palpitations for the past 1.5 yrs. My family dr wants to send me for heart testing however I really think it has to do with my thyroid or meds. I also have been spending my life going to specialist appointments and tests so I have held off on the heart stress test/ monitor ( but did the EKG). The pounding ( loud palpitations) started increasing when I started Synthroid  Levothyroxine). I am on the lowest dose of Synthroid possible and was told the heart palpitations would subside - they are not going away - has anybody had this problem or have any ideas?

Any one else with 3-4 ( or more) autoimmune conditions?

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  • Posted

    Yup. The levo causes the anxiety, heart palpitations, RA, lupus, fibromialgya. The autoimmune diseases and heart problems are listed in the manufacturer’s list of side effects along with many others. Of the side effects listed for levothyroxin is Hashimoti’s hypothyroid disease.  You’d think maybe the docs might catch on that this crap doesn't work, and in fact makes the disease worse.

    My opinion after taking it for several years is that it does not satisfy efficacy requirements- meaning, the side effects outweigh whatever curative properties it has. 

    Sounds like you've gotten nowhere with your docs. Get a new one who listens to your concerns and offers solutions. Start by changing your meds to NDTs or ThyroGold.

    Hope that offers some insight. I have tons more: Been through hell with the meds.

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    • Posted

      Thanks your reply MtViewCatherine.

      funny how levo causes the symptoms that it’s treating! ( plus some)

      the only thing it helps with is fatigue (only because it’s making me hyper)

      i will ask about NDTs and Thyrogold.

      Have you found either of these work for you?

      I just left my family Dr of 20 yrs because I was hypo for 1.5 years but he wouldn’t treat. I felt he was outdated. Now I’m with a new dr who is young eager to do any and all tests ( the opposite) but I feel like I am the one educating my dr. Some listen, some don’t. Perhaps I need to see another specialist?

      Hopefully one day there will ne an ‘Autoimmune Clinic’ so that there is not all this running around to diff. specialists in different locations. Somehow I doubt it though $$$$$

       

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  • Posted

    So, in the meanwhile, ask your doctor if you could skip a.dose when you get these paplitations. Levo can also help reduce antibodies from 1000s to 10. But, unfortunately, lots of people have gene polymorphisms that cause a great lack in enzymes that are needed to convert T4 to T3. Which really confuses unknowing doctors because the T4 could be high and TSH really suppressed but.conversion to FT3 is lowered. Also high serum T4 doesn't always mean high tissue T4. Could even mean the opposite that it's pooling in the serum. This is why FT3 testing and RT3 testing need to be done and their ratio shouldn't be above .20. And why Levo alone doesnt always work well in. a lot of people.

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    • Posted

      Thanks Mar7090 I’ll ask about  FT3 & RT4- testing

      Hopefully it  is covered....

      It helps to know this kind of info so that I can be on top of my Dr. 

      Are you at a point where your Hashis is somewhat under control or is it still an ongoing struggle for you?

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    • Posted

      My Hashis is and has been under control but I am still hypothyroid and would.never stop meds. I want to increase my FT3 at the cellular.level.it's just at the cutoff FT3/RT3 at 20 with a pituitary that is very suppressed.not.because of really high thyroid hormones.but because it is getting plenty of T.hormones but pituitary doesn't mean cellular level.so it's deceiving bc if a doctor didn't understand this and most don't they would think I was overmedicated which I am not.

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    • Posted

      Sorry but I made an error FT3/RT3 should be GREATER than 20 or .20 or double not lower. You want more than 2x FT3 than RT3. Optimal RT3 is less than 15pg/mL. T3 lowers RT3.

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  • Posted

    Hi Trudy,

    Do you have labs with ranges you can post? It will allow for better advice to what could be happening. I get palps whenever my levels are in their so called normal ranges. Tsh testing doesn't show the whole picture. You do need to get free t3 and free t4. There are other tests as well. Why some doctors only monitor tsh is just nonsense as I have had a tsh of 15 but both t4 and t3 were in the upper end of normal range. So I really never go off of my tsh results. I have hashimotos but having one auto immune disorder can open the door to more. My endocrine dr described hashimotos like a sunburn to the skin because that is inflammation on the skin from getting to much sun. Hashimotos is inflammation to the thyroid. Numerous things can cause it. I am assuming mine is more of something that has run through my family for many generations however I was the only one in my family to have thyroid cancer. I have two brothers who dont have thyroid problems at all and two that do plus my mom does. My dad did not have thyroid problems either. Look up inflammation diets. Most of the inflammation in our bodies can be helped with proper nutrition and exercise along with hydration. I have seen many times that drs sometimes themselves will keep from taking certain medicines and go to nutrition to cure their ailments.

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    • Posted

      Hi Melissa, yes I’m on a good diet... I switched my diet drastically after developing erosive OLP ( oral lichen planus), which is an autoimmune condition which results in bouts of ‘ inflammatory periods’ where I am left with painful mouth sores. So I have been doing my best to keep in check with diet, reducing stress and excersise (yoga). Inflammation is a daily struggle throughput my entire body. No, thyroid problems do not run in my family... i had a virus for a very long time which was removed 1.5 yrs ago. The inflammation problems began at this point. This is what wreaked havoc on my immune response ( or when the autoimmune train left the station)

      So far I have only been tested for TSH (went from 6.7 to 5 then 7.10). Then I was tested for TPA which were + (295). At this point my dr called in a prescription for the lowest dose of Levo. 

      Yes I agree, the next test should be for T3 & T4 . I’m have a follow up appoint next week. Is this when I’ll be referred to an Endocrinologist?.... I wonder

       

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    • Posted

      When you had high TSH and high normal T4 and T3 that was probably from pooling of T3 and T4 meaning at the cellular level.thyroid hormones were not being transported into the cells. where they are needed. This is where a TSH is a lot more revealing. SHBG and FT3/R3. would give a more accurate picture of the cellular level. Those TSHs were VERY revealing. that something was not right.
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    • Posted

      Hi mar it was the free t3 that was tested. I will have to look at my labs to see what the rt3 was at the time. I had no symptoms of underactive thyroid so the dr did not increase my dose at all and then there was times that I had a tsh of 6 with low normal ft4 and ft3 and she did increase my dose only for me to develop hyperthyroid symptoms. Drs should not base everything around a tsh solely
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    • Posted

      Also I tend to be more toward the hypoglcemic side of things my dr has said. She said some of my labs came back low for glucose. But all my recent tests show that my glucose has been good. But I am going to look into the ft3 as I am curious where mine are at. I am supposed to be having more screening again to make sure my cancer is still gone and to check where my antibodies are at so that is always such a stressful time. Thanks for the advice!
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    • Posted

      Sometimes hypo people feel hyper on thyroid meds but that could be from having either too high or too low cortisol where too much adrenalin is released causing anxiety, nervousness, palpitations this isnt hyperthyroidism it's just too much adrenalin because of cortisol levels. I never felt any sides like this on Levo even on high doses or where it looked like I was overmedicated on labs which couldve been just pooling in the blood and not getting into cells. A above normal TSH should be treated undertreatment or no treatment can cause brain dysfunction and cognitive decline including memory disorders and worse. Unfortunately I've read that blood levels of thyroid hormones do not show what is in the brain/cerebral spinal fluid. It seems that T4 only meds do not get T3 into the brain/CSF where it's seriously needed..not good, but a good reason for doctors to add T3 and T3 be made easier to obtain. Or maybe Levo makers start adding T3 to assure that the brain/CSF has T3. The pituitary does not have this problem it can easily convert T4 to T3 when only T4 meds are taken. So a high TSH really shows a problem because if the pituitary is crying out for more then the tissues are surely deficient even more so...that's every cell in one's body.

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    • Posted

      Yeah most of the time my tsh will go up if I have an infection but then it will go back into the normal range as soon as I am better. It's very odd. So if my dr frys to treat the high tsh but normal ft4 and ft3 then i get the hyperactive symptoms. I did have a cortisol test done once but it was only the blood cortisol test and not the 24 hour test. Have you done the test? What is your thyroid regimen. My dr said that if I have hyper symptoms when she adds more t4 then she didn't want to add t3. I have been nervous to try t3 due to not wanting any of those symptoms. They have checked my estrogen levels and u just went through all kinds of tests at the hospital had an echo done on my heart and all is good there but would really like to figure out what will make me feel 100% again.

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    • Posted

      Hi trudy,

      I would ask for a referral. If your in the US I have seen family drs try to treat the disorder themselves. My mother and my brother have never been offered a referral to an endocrine dr and even my other brother who has nodules is still being treated by his family dr. I told him to get a referral.

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    • Posted

      That is not odd when you're sick the body tries to slow things down especially your thyroid. Your brain needs T3. When they checked cerebral spinal fluid / brain they found T3 very lacking even though the blood levels were normal this was done on people with hypo taking T4 only. Good reason for adding T3 and maybe lowering T4 a little. This study really worried me. I'm on 150mcg levo but only 5mcg T3. I want to up my dose of T3 and lower T4. I always have a suppressed TSH but my T4 and T3 are far from high. Yeah my pituitary is getting enough but could use more for tissue and now brain after reading that study. Wish CSF wasnt so hard to test. It's bit risky if the needle jabs wrong place and damages nerves etc.

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    • Posted

      I am on 150 mcg of tirosint. I dont have my thyroid at all anymore. I also have hypoparathyroid from the surgery so sometimes my symptoms can be hard to tell which one is causing what. I do agree about not knowing exactly how much is just the right dosing for our bodies. Do you still feel any symptoms from hypothyroid? Do you take vitamins? I was reading also that you want albumin in upper range because it transports t4 through your body to be absorbed and also reading about selenium and other factors to help absorb and convert.
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