Aa
Ready to give up
In dealing with an rT3 issue, I seem to have thrown myself back into hypothyroid symptoms, GERD, and myxedema. I'm feeling horrible and have gained a large amount of weight in a short amount of time..for instance 11 lbs in the last 6 weeks. I stayed off T4 for 3 months and bumped my T3 from 30 mcg up to 80 mcg and still felt hypo...at Christmas they myxedema was so bad that I had triple folds at my ankles and my stomach looks 8 mos. pregnant. My labs show that while my TSH remains suppressed, my circulating hormones are way low. To make matters worse, my cholesterol and glucose have soared and my blood pressure is elevating. After 3 months, the rT3 was reduced to an acceptable level, but as soon as I went back on a low dose of T4 the rT3 immediately went back up.
The endo I saw right before Christmas was hopeless. In the face of below normal FREE T4 and FREE T3 at the very bottom number, he said I need bi-polar medication and heavy metal testing. My PCP was outraged, and NO therapist I've seen has ever suggested I am bi-polar. At this point I'd WELCOME a manic mood, trust me.
My PCP can see both in my labs and in my person (hair loss again, 20 lb weight gain ABOVE the extra 25 lbs I've been carrying around above my usual weight, rash, dry skin etc.) that I'm hypo, she's concerned about my labs but doesn't know what to do. I found a local Osteopath on the top thyroid doc list and my PCP said I should see her. I went a couple of days ago.
Now I'm more depressed than ever. For one thing, throughout the interview she kept saying I had auto-immune problems and I kept saying I didn't, that I've had 4 tests (with both types of testing) and they've all been negative. At the end, when she was writing up her recommendations, she once again said "auto-immune" and I asked why she kept saying that. She said "Well you SAID you were." and when I said I would never say such a thing since it had never been proven, she insisted that I'd mis-led her. Vehemently insisted. I think it's really inappropriate for a doctor to do that rather than saying perhaps she mis-heard. I HAD the tests with me, she could have looked for herself but said it was "unnecessary" how I had tested in the past, that she preferred to deal with me "as you are now." She refused to discuss myxedema and instead insisted I have gluten, dairy, and sugar allergies even though I've been tested up the yin-yang in the past with zero results. When my abdomen was this distended before I was put on thyroid meds, I was sent for an endoscopy that showed I had a slight amount of erosion in the esophagus from reflux but not full-on GERD. Guess what ? As soon as I went on T3 it all went away, so I'm assuming my stomach acid and digestion were off because of low hormones just like now. I didn't change my diet for it to go away. I eat little bread anyway and when I do, notice no unusual reaction.
The D.O, insisted I needed IgG testing for 93 foods and another expensive test for heavy metals. I shelled out $190.00 for the allergy testing (not covered by insurance) and another $13.00 for melatonin, which she insisted was the solution to my waking up every night at 3AM instead of investigating my cortisol levels with a 24 hr. test. She did say that cortisol would be tested by serum along with the food allergies...which she insisted would be the source of my stress. I don't think so....I think prolonged stress (lawsuits, car accidents, several prolonged viral and bacterial infections with multiple doses of antibiotics included the verboten-for-thyroid-patient's CIPRO) is the cause of cortisol imbalance (if any) and probably the source of the rT3. Some research today about the 93 food IgG test seems to imply it's bogus, and I saw my immunologist yesterday for the blistery rash and HE said the test is bogus. Of course, the AACE says T3 is bogus, so who knows what to believe anymore, right ? The D.O. also tried to get me to sign up for HER form of "bio-identical female hormones" even though I've been taking them already and need help to continue to get them through my insurance, since progesterone is complicit in the conversion of T3 as well as adrenal function. I went to my gynecologist and had HER test my hormone levels.
Bottom line, I'm under-medicated, don't know which thyroid hormones to take or in what balance, and the D.O. said she wanted to leave them where they are and "deal with the food allergies and then you might not need to take very much." I'm dying here, and to me it seems straight forward......test for adrenals, give a course of hydrocortisone if they're low, maybe assume the 3-4 month illnesses and the fall that broke my elbow last year resulted in rT3, that my perennially low TSH indicates a dysfunction in the hypothalamus/pituitary/thyroid loop (multiple whiplash and concussion accidents) and the low levels of circulating hormones means I have a conversion problem....as does my sister, who does have Hashimoto's. But how to treat ?
I have the feeling I'm now hooked up with another one of those people who's going to push all kinds of expensive "alternative" testing and supplements and I won't be any closer to wellness than I am now. (I've gone the alternative route before) She seemed annoyed when I pled poverty as the reason for not buying estriol instead of the bio=identical estradiol my insurance covers. My insurance covers HER....but not her alternative treatments. SO lost.
In any case, this
The endo I saw right before Christmas was hopeless. In the face of below normal FREE T4 and FREE T3 at the very bottom number, he said I need bi-polar medication and heavy metal testing. My PCP was outraged, and NO therapist I've seen has ever suggested I am bi-polar. At this point I'd WELCOME a manic mood, trust me.
My PCP can see both in my labs and in my person (hair loss again, 20 lb weight gain ABOVE the extra 25 lbs I've been carrying around above my usual weight, rash, dry skin etc.) that I'm hypo, she's concerned about my labs but doesn't know what to do. I found a local Osteopath on the top thyroid doc list and my PCP said I should see her. I went a couple of days ago.
Now I'm more depressed than ever. For one thing, throughout the interview she kept saying I had auto-immune problems and I kept saying I didn't, that I've had 4 tests (with both types of testing) and they've all been negative. At the end, when she was writing up her recommendations, she once again said "auto-immune" and I asked why she kept saying that. She said "Well you SAID you were." and when I said I would never say such a thing since it had never been proven, she insisted that I'd mis-led her. Vehemently insisted. I think it's really inappropriate for a doctor to do that rather than saying perhaps she mis-heard. I HAD the tests with me, she could have looked for herself but said it was "unnecessary" how I had tested in the past, that she preferred to deal with me "as you are now." She refused to discuss myxedema and instead insisted I have gluten, dairy, and sugar allergies even though I've been tested up the yin-yang in the past with zero results. When my abdomen was this distended before I was put on thyroid meds, I was sent for an endoscopy that showed I had a slight amount of erosion in the esophagus from reflux but not full-on GERD. Guess what ? As soon as I went on T3 it all went away, so I'm assuming my stomach acid and digestion were off because of low hormones just like now. I didn't change my diet for it to go away. I eat little bread anyway and when I do, notice no unusual reaction.
The D.O, insisted I needed IgG testing for 93 foods and another expensive test for heavy metals. I shelled out $190.00 for the allergy testing (not covered by insurance) and another $13.00 for melatonin, which she insisted was the solution to my waking up every night at 3AM instead of investigating my cortisol levels with a 24 hr. test. She did say that cortisol would be tested by serum along with the food allergies...which she insisted would be the source of my stress. I don't think so....I think prolonged stress (lawsuits, car accidents, several prolonged viral and bacterial infections with multiple doses of antibiotics included the verboten-for-thyroid-patient's CIPRO) is the cause of cortisol imbalance (if any) and probably the source of the rT3. Some research today about the 93 food IgG test seems to imply it's bogus, and I saw my immunologist yesterday for the blistery rash and HE said the test is bogus. Of course, the AACE says T3 is bogus, so who knows what to believe anymore, right ? The D.O. also tried to get me to sign up for HER form of "bio-identical female hormones" even though I've been taking them already and need help to continue to get them through my insurance, since progesterone is complicit in the conversion of T3 as well as adrenal function. I went to my gynecologist and had HER test my hormone levels.
Bottom line, I'm under-medicated, don't know which thyroid hormones to take or in what balance, and the D.O. said she wanted to leave them where they are and "deal with the food allergies and then you might not need to take very much." I'm dying here, and to me it seems straight forward......test for adrenals, give a course of hydrocortisone if they're low, maybe assume the 3-4 month illnesses and the fall that broke my elbow last year resulted in rT3, that my perennially low TSH indicates a dysfunction in the hypothalamus/pituitary/thyroid loop (multiple whiplash and concussion accidents) and the low levels of circulating hormones means I have a conversion problem....as does my sister, who does have Hashimoto's. But how to treat ?
I have the feeling I'm now hooked up with another one of those people who's going to push all kinds of expensive "alternative" testing and supplements and I won't be any closer to wellness than I am now. (I've gone the alternative route before) She seemed annoyed when I pled poverty as the reason for not buying estriol instead of the bio=identical estradiol my insurance covers. My insurance covers HER....but not her alternative treatments. SO lost.
In any case, this
Best Answer
I am going to chime in here only because some of your symptons are identical to what i suffered for 11 years before finally getting a great Dr and a correct medical diagnois.. I too suffered with dry skin, rash, hypothyroid, I was told for years by every specilists i went to I had eczema dry skin and I just needed to diet, I had tons of bloodwork done and no one could hit on what was really wrong, i continued to get sicker, the rash i had spread it almost looked like i had been burned on the parts of my body where it was but i continued to go to the Endo DR and the Dermontoligist and use the steriods meds and creams they provided which did not really help ... finally I decided that this was not all in my head and I was going to get help or this was going to kill me, so I looked up a Allergist Immulogust Dr and she saved my life, she tested me for all food allergies, a full tyriod bloodwork, a saliva test on my hormones i am only 40 and have all my female organs .so noone thought to check those.. guess what, I am now on bioidentical hormone thearpy, low dose of thyriod meds-synthriod and found out i cannot tolerate any Gluten products for the first time in 11 years my rash is gone, my body & joint aches are gone, i feel NORMAL. dont give up keep fighting it takes one caring Dr i went to 10 different Dr in those 11 years for help none helped me... I am not a celiac sufferer I just cannot tolerate the protein in gluten, it was causing the itchy skin rash....
Update : Gynocologist ran both thyroid antibody tests. Negative.
She and my immunologist both told me they think IgG testing for food allergies has no validity, nor does a random serum cortisol test. Ripped off for $190.00
She and my immunologist both told me they think IgG testing for food allergies has no validity, nor does a random serum cortisol test. Ripped off for $190.00
Thank you for the validation of my own opinion. I think it's a combination of injury and a familial/genetic conversion issue....and that because of the stressors my adrenals should be suspect as well. If I were a doc, I think I'd try me on a 2% OCT topical hydrocortisone cream 2X a day for starters and watch the rT3 for reaction. It makes me insane, too, when doctors think that I somehow can't tell them what my own body feels like. As to my PCP...she's basically just doing what I've asked her to do based on my research and the fact that cholesterol etc. normalized according to my prediction when she first prescribes T4/T3, so she trusts me. And she's been my doctor for almost 20 years. Now that my meds aren't working and I have rT3, cholesterol and glucose and blood pressure have all gone back up rather rapidly since I lowered the T4. It's ME insisting on generic levothyroxine from one manufacturer only....which everybody should do to avoid fluctuation in strength and different fillers. I chose Mylan because they were the first to get the contract to produce the generic, and they keep a "batch library" that is monitored by the FDA and to which they can refer if there's ever a problem with the manufacture. My doc is really nervous about her lack of expertise and the risk she takes to her medical license by practicing outside her specialty.
Just to be clear.....I'm only on this low dose of T4 because I was reintroducing it after going off it to clear the rT3. Just hell. I think it's rather unusual for someone to go hypo on 80 mcg Cytomel and generic T3 combined, per day. I was afraid to take more without supervision, but I had no hyper symptoms at all. In fact, myxedema became extreme.
Thinking deductively, I think I need to be on SOME T4, because on the same dose of T3 I'm on now (30 mcg), but on 3 TIMES the amount of T4 (on 50 mcg now, was on 150 mcg when the worst of the rT3 symptoms became unbearable but with my T4 level right in the middle of the range) my FREE T3 levels are 30 now, and 38 when I was on the higher dose of T4. So that, to me, speaks of inadequate but partial conversion. top of the lab range is 4.2
Myxedema (non-pitting edema) has been a problem all along. On the Cytomel corporate website, they say the dose for that (NOT coma) is usually 200 mcg per day !
Just lost. Thinking maybe ERFA or Naturthyroid with perhaps added Cytomel could be the thing, but I just don't know enough and frankly it's getting to the point where I can't AFFORD to be well. It's too exhausting and can't find adequate medical care anywhere near me. and the price of the medications is too exoensive.
OH, and as to the TSH, haven't tested it for years, don't care. We only tested it now because I thought it would be interesting to see a baseline reading being off meds. But I think, now, that even though the T3 clears the blood stream rather quickly, the suppressive factor on TSH probably takes longer to clear. But I really don't know.
Thanks again FF, I always value your input. And whenever I leave one of these posts, I assume we all contribute information for readers who may search in the future. That's why I try to be so detailed, not to take up so much space.
Just to be clear.....I'm only on this low dose of T4 because I was reintroducing it after going off it to clear the rT3. Just hell. I think it's rather unusual for someone to go hypo on 80 mcg Cytomel and generic T3 combined, per day. I was afraid to take more without supervision, but I had no hyper symptoms at all. In fact, myxedema became extreme.
Thinking deductively, I think I need to be on SOME T4, because on the same dose of T3 I'm on now (30 mcg), but on 3 TIMES the amount of T4 (on 50 mcg now, was on 150 mcg when the worst of the rT3 symptoms became unbearable but with my T4 level right in the middle of the range) my FREE T3 levels are 30 now, and 38 when I was on the higher dose of T4. So that, to me, speaks of inadequate but partial conversion. top of the lab range is 4.2
Myxedema (non-pitting edema) has been a problem all along. On the Cytomel corporate website, they say the dose for that (NOT coma) is usually 200 mcg per day !
Just lost. Thinking maybe ERFA or Naturthyroid with perhaps added Cytomel could be the thing, but I just don't know enough and frankly it's getting to the point where I can't AFFORD to be well. It's too exhausting and can't find adequate medical care anywhere near me. and the price of the medications is too exoensive.
OH, and as to the TSH, haven't tested it for years, don't care. We only tested it now because I thought it would be interesting to see a baseline reading being off meds. But I think, now, that even though the T3 clears the blood stream rather quickly, the suppressive factor on TSH probably takes longer to clear. But I really don't know.
Thanks again FF, I always value your input. And whenever I leave one of these posts, I assume we all contribute information for readers who may search in the future. That's why I try to be so detailed, not to take up so much space.
I had something similar happen. I was ill with a sinus infection and my doctor prescribed an antibiotic and steroids. Nothing happened. Then she gave me a stronger dose of antibiotics, again nothing but getting worse. She then prescribed Cypro with steroids and I finally got relief from Bronchitis. My bottle had a sticker that clearly stated not to take within 4 hours from my synthroid. I have been working with the same pharmacy for a while. They know to watch for stuff like that and try to catch it for me.
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No, I didn't take it 4-6 hours apart from my T4 med. But Cipro has a whole laundry list of side effects and we're all affected differently. It may have adverse effects on one person and hardly any effect on another.
That's nice Barb. glad to hear it. Perhaps you took it 4 - 6 hours apart from taking T4 ? I, on the other hand seem to be suffering ill effects with my thyroid meds....no doctor told me to take Cipro and levothyroxine that far apart while I was on it for 10 days (I took it at least an hour apart from my thyroid meds) and I took 2 courses of azythromycin and 1 course of amoxicillin as well before taking Cipro.
None-the-less, a clinical paper in the EMJ cites 2 cases of Cipro-related hypothyroidism and online information such as the following cautions that Cipro causes poor absorption of levothyroxine.
http://www.worstpills.org/public/page.cfm?op_id=420
None-the-less, a clinical paper in the EMJ cites 2 cases of Cipro-related hypothyroidism and online information such as the following cautions that Cipro causes poor absorption of levothyroxine.
http://www.worstpills.org/public/page.cfm?op_id=420
That seems a more holistic approach in metal testing. It jumped out at me because in the course of my own research, I have had to take into account that I have a metal on metal hip and high metal ions can be an issue. In my case its cobalt and chromium ions released into my system. In my reading, I have seen where those two things can give an increased RT3 among other things. It really is hard to find good info on RT3 issues. One school of thought says it plays no factor, has no effect on things but others, like you, beg to differ.
A chiro I saw last June wanted to run a metal test like yours would be, seemed obsessed with it and then wanted $3200 for a treatment, this amount was given even before any testing, and I never did it. I was not yet informed about just what my own hip could do to me then.
I have since had cobalt and chromium testing, it has to be done a certain way so as not to contaminate the blood with metals that are already in some test tubes. Higher than normal levels are expected in patients with a metal on metal hip, so even though mine are elevated (over range) the surgeon said it was ok. I have asked endos about said effects on the thyroid and other systems and NO ONE seems to know anything. My RT3 is still too high...my thyroid levels would suggest that I am hyper but I feel hypo and have gained weight. I do have to wonder what effect high levels of metals does to our thyroids.
It may not be the answer for you, but I didn't want you to rule it out completely. I do feel that heavy metal testing is a part of some doctors rackets, but I also think that in your case, it bears some investigation. Whether or not you come into contact with any of these thpes of things, I have no way of knowing. Just wanted you to know that I myself am suspicious about the part metals are playing in my own health. If I get any answers anytime soon, I will surely let you know.
A chiro I saw last June wanted to run a metal test like yours would be, seemed obsessed with it and then wanted $3200 for a treatment, this amount was given even before any testing, and I never did it. I was not yet informed about just what my own hip could do to me then.
I have since had cobalt and chromium testing, it has to be done a certain way so as not to contaminate the blood with metals that are already in some test tubes. Higher than normal levels are expected in patients with a metal on metal hip, so even though mine are elevated (over range) the surgeon said it was ok. I have asked endos about said effects on the thyroid and other systems and NO ONE seems to know anything. My RT3 is still too high...my thyroid levels would suggest that I am hyper but I feel hypo and have gained weight. I do have to wonder what effect high levels of metals does to our thyroids.
It may not be the answer for you, but I didn't want you to rule it out completely. I do feel that heavy metal testing is a part of some doctors rackets, but I also think that in your case, it bears some investigation. Whether or not you come into contact with any of these thpes of things, I have no way of knowing. Just wanted you to know that I myself am suspicious about the part metals are playing in my own health. If I get any answers anytime soon, I will surely let you know.
Dear Marie,
Thanks for your response. I did less well on Synthroid than I do on generic levothyroxine, however my prescription is written to be filled from Mylan labs and no other to avoid the fluctuations common to various generics. I did not do well on T4 only and ONLY feel a difference with the administration of T3, and I cannot take a generic for that, it made my labs go crazy until I went back on Cytomel.
I lobbied my health group to be sent to the Pituitary Center at Cedars Sinai Hospital in Los Angeles after seeing 2 other endos who dismissed my complaints because of my low TSH. I have had multiple car accidents where I was hit from behind with whiplash and concussion and therefore multiple x-rays and I also had a bicycle accident where I landed on my head and had a cat scan, so I thought it was very probable that there was some kind os disruption in the axis as well as the issue of no protection for the thyroid during radiation. I was dismissed from the pituitary clinic and treated as though I had some kind of body dysmorphia, even though I had obvious physical signs of hypothyroid...say for instance hemorrhaging with my period and radical hair loss, light and sound sensitivity, tinnitus,sudden weight gain, dry skin.......but no, I couldn't have hypo and was told I was going to give myself a heart attack even though I had no markers and passed a dye-enhanced stress test, and that I was going to have osteoporosis even though my bone density test was better after thyroid meds and my calcium levels (and others) normalized. I was sent to 2 other endos, all of whom looked at my low TSH and said similar things. So my primary doctor (who had been my doctor for a long time and saw more than any of them what happened to my body when endos cut my meds) took over my care. But with rT3, she has no idea what to do, and she won't even give me a cortisol test because she says she doesn't know how to interpret it. She has sent me to the latest endo and now this osteopath because of it.
All endos in LA are slaves to the TSH test, the head of the endocrinology department at UCLA headed the clinical trial upon which the AACE and the ATA base their opinion and guidelines that state T3 is not a valid treatment for hypothyroidism. And you are right, the inability to find a good doctor is definitely affecting my mental and physical health, and bankrupting me as well.
@Jackie419........no, she didn't exactly specify or explain, but on the scribbled list she gave me she wrote : "RBC heavy metals testing" and "provoked urine." She didn't say WHY she thought I might have a need for such tests........I would think the more usual testing for adrenal, parathyroid, and pituitary/hypothalamus involvement would have been a better first choice. But of course they would be covered by my insurance and then she couldn't charge the Big Bucks for them, or sell me supplements. Furthermore, from March through May last year I had a pseudomonas bacterial infection in my lungs that was mis-diagnosed. Viruses and serious illnesses in general are known to affect thyroid levels, but I was also given 4 courses of various antibiotics including CIPRO. I was given the CIPRO (instead of Keflex, which would have been more appropriate for my illness anyway) even though I told the pulmonologist I was on thyroid medication and that class of antibiotics is verboten for thyroid patients. I'm sure this must have something to do with the rT3 and my medication not working.
Sigh.
Thanks for your response. I did less well on Synthroid than I do on generic levothyroxine, however my prescription is written to be filled from Mylan labs and no other to avoid the fluctuations common to various generics. I did not do well on T4 only and ONLY feel a difference with the administration of T3, and I cannot take a generic for that, it made my labs go crazy until I went back on Cytomel.
I lobbied my health group to be sent to the Pituitary Center at Cedars Sinai Hospital in Los Angeles after seeing 2 other endos who dismissed my complaints because of my low TSH. I have had multiple car accidents where I was hit from behind with whiplash and concussion and therefore multiple x-rays and I also had a bicycle accident where I landed on my head and had a cat scan, so I thought it was very probable that there was some kind os disruption in the axis as well as the issue of no protection for the thyroid during radiation. I was dismissed from the pituitary clinic and treated as though I had some kind of body dysmorphia, even though I had obvious physical signs of hypothyroid...say for instance hemorrhaging with my period and radical hair loss, light and sound sensitivity, tinnitus,sudden weight gain, dry skin.......but no, I couldn't have hypo and was told I was going to give myself a heart attack even though I had no markers and passed a dye-enhanced stress test, and that I was going to have osteoporosis even though my bone density test was better after thyroid meds and my calcium levels (and others) normalized. I was sent to 2 other endos, all of whom looked at my low TSH and said similar things. So my primary doctor (who had been my doctor for a long time and saw more than any of them what happened to my body when endos cut my meds) took over my care. But with rT3, she has no idea what to do, and she won't even give me a cortisol test because she says she doesn't know how to interpret it. She has sent me to the latest endo and now this osteopath because of it.
All endos in LA are slaves to the TSH test, the head of the endocrinology department at UCLA headed the clinical trial upon which the AACE and the ATA base their opinion and guidelines that state T3 is not a valid treatment for hypothyroidism. And you are right, the inability to find a good doctor is definitely affecting my mental and physical health, and bankrupting me as well.
@Jackie419........no, she didn't exactly specify or explain, but on the scribbled list she gave me she wrote : "RBC heavy metals testing" and "provoked urine." She didn't say WHY she thought I might have a need for such tests........I would think the more usual testing for adrenal, parathyroid, and pituitary/hypothalamus involvement would have been a better first choice. But of course they would be covered by my insurance and then she couldn't charge the Big Bucks for them, or sell me supplements. Furthermore, from March through May last year I had a pseudomonas bacterial infection in my lungs that was mis-diagnosed. Viruses and serious illnesses in general are known to affect thyroid levels, but I was also given 4 courses of various antibiotics including CIPRO. I was given the CIPRO (instead of Keflex, which would have been more appropriate for my illness anyway) even though I told the pulmonologist I was on thyroid medication and that class of antibiotics is verboten for thyroid patients. I'm sure this must have something to do with the rT3 and my medication not working.
Sigh.
I have had hypothyroid for 28 years. Last year I went form 145 lbs to 220 lbs in six months. I have a great family doc. She checks my thyroid panel every 3 to 6 months depending on problems. I have found that not all replacement drugs are the same. I can only take Synthroid due to other meds variations to much. They aren't as stable and make my levels erratic. That being said. I was diagnosed with very low levels of T3 last year and found I had a tumor on my pituitary gland at the same time! Simple blood test found them. Cytomel is four times stronger than Synthroid type medications. I take 175mcg of Synthroid, 5 mcg of Cytomel, and Bromocriptine. My levels evened out perfectly and my weight dropped 30lbs over the last three months. It takes three months minimum for your levels to balance out with Synthroid type products. Anything you check sooner than that are not very accurate. It must be checked every six months until stable then yearly. I personally would look for a doctor you trust and are comfortable with. That is very important for your mental health. Good luck with everything. I do know how frustrating it can be.
Thanks for your concern. I've been dealing with this disorder since at least 2005, but probably for longer than that. I WAS on 150 mcg. levothyroxine in addition to 30 mcg Cytomel. However, over the course of a year or so I had a return of symptoms even though on those doses my FREE T4 and FREE T3 levels were in the recommended upper part of the normal range.
The reason I stopped T4 was because rT3 was high out of range with a low ratio to my FREE T3. While I was off T4 I supplemented with additional Cytomel and the rT3 dropped. Spastic feet and leg cramps mostly subsided and non-pitting edema subsided for about a month, but then the edema got worse than ever and I gained a lot of weight very quickly. However as soon as I went back on T4, the rT3 immediately rose.
I agree, my levels are way too low. But if the rT3 is blocking the receptors, as seems the case, then T4 is not my friend.
I have seen 6 endocrinologists and now this Osteopath. Diagnostically I am difficult because of my low TSH, which has never been elevated.
The reason I stopped T4 was because rT3 was high out of range with a low ratio to my FREE T3. While I was off T4 I supplemented with additional Cytomel and the rT3 dropped. Spastic feet and leg cramps mostly subsided and non-pitting edema subsided for about a month, but then the edema got worse than ever and I gained a lot of weight very quickly. However as soon as I went back on T4, the rT3 immediately rose.
I agree, my levels are way too low. But if the rT3 is blocking the receptors, as seems the case, then T4 is not my friend.
I have seen 6 endocrinologists and now this Osteopath. Diagnostically I am difficult because of my low TSH, which has never been elevated.
mess. Sorry about the change in post. I made a mistake and pushed the post button. Also I've learned that doctors practice medicine. They don't have all the answers even though I truly wish they did. All of your numbers seem pretty low. I might try to reconsider t4 medication with the addition of cytomel to at least get your levels up. This might correct some of your other issues. When we are out of balance hormonally it can mess up a lot of functions in the body. I truly hope you feel better. I know how hard this can be. Lastly, your not going to die anytime soon. Think of it this way, your body is chemically off balance. The key is getting it back in balance. One way to do that is to walk one mile a day. This is like a car jump. It will get your blood circulating so that the chemicals can flow. This will also help your meds to flow through your blood easier. I have to walk just to keep my blood flowing. I have kinda of given up on docs. Most don't have a clue. Keep your head up. It will get better and be your own best advocate.
Hi
Just curious why your t4 medication was stopped. Your thyroid levels are way to low. It takes a long time to balance out on thyroid medication. Cytomel won't do to much good without t4 meds. I'm on 12.5-15 of cytomel and 88 mcg of levoxyl. I still have symptoms but t know I need to raise my t4 meds even more. While you are going through this up and down process your hormones will be out of control until your body find its therapeutic balance. The first key is to try and calm down. I know your saying " but you don't know how I feel". I do. Last year I thought I was going to die as well. Stress is your enemy. It will turn the chemicals in your body into a
Just curious why your t4 medication was stopped. Your thyroid levels are way to low. It takes a long time to balance out on thyroid medication. Cytomel won't do to much good without t4 meds. I'm on 12.5-15 of cytomel and 88 mcg of levoxyl. I still have symptoms but t know I need to raise my t4 meds even more. While you are going through this up and down process your hormones will be out of control until your body find its therapeutic balance. The first key is to try and calm down. I know your saying " but you don't know how I feel". I do. Last year I thought I was going to die as well. Stress is your enemy. It will turn the chemicals in your body into a
The heavy metals testing jumped out at me....what was her reasoning for that? Did she specify WHICH tests?
The way doctors are treating patients these days is shameful.
The way doctors are treating patients these days is shameful.
http://www.sciencebasedmedicine.org/index.php/igg-food-intolerance-tests-what-does-the-science-say/
Most recent labs :
in five weeks
cholesterol has risen from 189 up to 192 (135 - 200 ) before meds it was 240, before rT3 it was 164
glucose has risen from 94 to 99 (65 - 99 ) was 99 before meds before rT3 it was 78
blood pressure has risen from 120/72 to 147/96 . before meds (and w/ extreme non-pitting edema) it was 196/98
(No dietary changes, just lowered T4 because of rT3. Raised T3 to 80 mcg, then lowered back to usual 30 mcg )
December 7 2012
no T4 for 3 months, no Cytomel for 48 hours
TSH <0.01 (.40 - 4.50 )
FREE T4 direct .3 (.8 - 2.7 )
FREE T3 2.4 (2.3 - 4.2 )
rT3 <5 (11 - 32 ) ratio 48
January 17 2013
50 mcg levothyroxine 30 mcg Cytomel daily for 5 weeks
fasting, no thyroid meds for 24 hours
TSH 0.01 (.40 - 4.5 )
FREE T4 .8 (.8 - 1.8 ) higher with new reagent
FREE T3 3.0 (2.3 - 4.2 )
rT3 19 (11 - 32 ) ratio 16
Suggestions ?
in five weeks
cholesterol has risen from 189 up to 192 (135 - 200 ) before meds it was 240, before rT3 it was 164
glucose has risen from 94 to 99 (65 - 99 ) was 99 before meds before rT3 it was 78
blood pressure has risen from 120/72 to 147/96 . before meds (and w/ extreme non-pitting edema) it was 196/98
(No dietary changes, just lowered T4 because of rT3. Raised T3 to 80 mcg, then lowered back to usual 30 mcg )
December 7 2012
no T4 for 3 months, no Cytomel for 48 hours
TSH <0.01 (.40 - 4.50 )
FREE T4 direct .3 (.8 - 2.7 )
FREE T3 2.4 (2.3 - 4.2 )
rT3 <5 (11 - 32 ) ratio 48
January 17 2013
50 mcg levothyroxine 30 mcg Cytomel daily for 5 weeks
fasting, no thyroid meds for 24 hours
TSH 0.01 (.40 - 4.5 )
FREE T4 .8 (.8 - 1.8 ) higher with new reagent
FREE T3 3.0 (2.3 - 4.2 )
rT3 19 (11 - 32 ) ratio 16
Suggestions ?
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
ESPECIALLY with your track record.
Also RT3 is related to stress. Not just mental stress but also any stressor on the system. Your repeated accidents and infections are ALL VERY stressful on the body which can all contribute to RT3 elevation.
you have PROVEN positive response with T3 and low T4 medication. How anyone would not see that clinically and follow that route is totally beyond me. I believe this is where you must continue to focus based off of your own personal results.
Your PCP seems to understand some of this. Also your PCP and yourself have narrowed down the list of drugs that work for you specifically by manufacturer. That is pretty significant.
There are a very few people who are nearly 100% T3 only. You may be one of those people who need that.
If I were you, I'd be leaning on your PCP to up your T3 medication in a small dosage increase. Test in say 3 weeks. I wouldn't even bother them running the TSH test. All it does is confuse matters, cost money for something you know will be suppressed or will be suppressed with the increase in T3 medication. So why bother testing for it? The only reason I can think if is to have a documented evidence in your medical records of continued need to have TSH suppressed fully and that you are not Hyper when that occurs. Again related I think back to potential pituitary issues caused by the head injuries.
This is just my opinion.
I just don't see how you felt better and all your labs (other than TSH) improved significantly when you were on none or very low T4 dosage and higher T3 dosage. So go with that trend.