Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 A difficult one . The problem that I have always found from different people who couldn't regain their normal health on levothyroxine, even when on high doses, and their need to change to T3, is that the method where they are recommended to keep reducing the thyroxine by 25 mcgs and adding a small amount of T3 every six to eight weeks, reducing the T4 by another 25 mcgs and adding more T3 - that this goes on for ages and ages before they finally finish their T4 and just take T3. I should imagine it is the same for stopping synthetic T4 and T3 and changing over to natural thyroid extract. To my mind, I cannot see the point of all this and feel that surely, it would be better to first stop the levothyroxine completely, because it is a mainly inactive hormone and it takes 6 weeks to get completely out of the system. By taking less and less every 6 to 8 weeks, this is just prolonging the agony. The T3 she is taking is going to help her tick over until the T4 is out of her system, and then she can swap the synthetic T3 for the thyroid extract. T3 has a short half life and only lasts for about 2 days in humans. At least, that is the way that makes sense to me. Because Erfa has other thyroid hormones, apart from T4 and T3, i.e.T2 and T1 (both of which are active hormones), I would play safe and start on 1 grain Erfa for 7 days, and then increase by half a grain, and stay on that for 2 to 3 weeks, and increase by another half grain and carry on increasing in this way until I found the dose that made me well. Luv - Sheila ..... BUMP .... any suggestions, please? I've got a question for an acquaintance in Germany, who wants to try a switch to Erfa..... but she is already on a combination of T4/T3 and on a relative high dosage as such. I could not find any instructions in our files for such a case.... She is currently taking 275 mcg Levothyroxine plus 20 mcg T3. Her doctor is proposing to first reduce the T4 to 225 mcg & the T3 to 5 mcg and add 1 grain Erfa .... and depending on how it goes -following it up with 200 mcg T4 , no T3 , but add 2 grain Erfa. I have no experience on how someone should best switch to NDT when somebody is already used to receiving T4 and T3, but still feels very ill on it. My personal preference would be a clean break - stop the synthetic one day and carry on with natural thyroid the next.... but would that be the right thing to do in those circumstances, and if so - with which dosage should she start ? She is terrified of experiencing a crash if she opted for a dosage lower than her combined thyroid meds at present. Many thanks, No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.435 / Virus Database: 271.1.1/2694 - Release Date: 02/18/10 19:34:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 ..... BUMP .... any suggestions, please? [#-o]I've got a question for an acquaintance in Germany, who wants to try aswitch to Erfa..... but she is already on a combination of T4/T3 andon a relative high dosage as such. I could not find any instructions inour files for such a case.... She is currently taking 275 mcgLevothyroxin plus 20 mcg T3. Her doctor is proposing to first reducethe T4 to 225 mcg & the T3 to 5 mcg and add 1 grain Erfa .... anddepending on how it goes -following it up with 200 mcg T4 , no T3 ,but add 2 grain Erfa. I have no experience on how someone should bestswitch to NDT when somebody is already used to receiving T4 and T3, butstill feels very ill on it. ----------- Since she is already taking a combo T4/T3, as I was, she can make the switch to NDT easier. Erfa has 8 mcg of T3 per grain; I would not have her start at more than 2 1/2 grains, which would have in it the equivalent of her current T3 dosage. As she's on a large amount of T4, she could keep taking some T4, perhaps 100, until she sees how the 2 1/2 grains of Erfa hits her. She will then need to decrease about 25-50 mcg of T4 for each half grain of NDT she adds. I personally went from 137.5/37.5 levothyroxine/Cytomel to 3 grains directly, then upped 1/2 grain every 6 to 8 weeks, taking 8 months to reach my optimization. I now take 5 grains of NDT. Going slow is better. Most recommend 6-8 weeks between increases to allow the T4 to get into the cells. Going by temperature, blood pressure and symptom relief necessary. Best of luck, Fibrojay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Many thanks, Sheila. This makes sense to me, and if I were in her shoes, I would do it like that. I'll forward your reply to her. Love, xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Many thanks Fibrojay, this is very interesting how you handled your switch. I don't think there are many folks on here on high-ish doses of T4/T3, who have done this. So your experience is invaluable. How did you feel during the time of swap-over? Mind you, I have just received a very rude reply in response to the suggestion that Sheila made, that I have now told this woman where to get off. I think she is a lost cause..... but just for arguments sake, I would like to hear all your "verdicts" on this lady's case history. She's 45 yo German woman, and had been diagnosed with Hashimoto's in 1998. For the first 9 years her GP kept her on 50 mcg Levo, told her all was well, although she never had any relief from her symptoms. Then she allegedly suffered thyrotoxicosis in 2007 out of the blue, lost 8 kg and a few months later she started piling on the pounds. By then she had educated herself and thought she now knew how to treat her condition.... she started upping the Levo every few weeks in tiny increments. Sometime in between she realized that she had adrenal symptoms and started taking HC.... some clever clogs on the German Forum persuaded her to increase her HC to 100 mcg/day (without stopping her Levo, of course).... she got so ill that she could barely walk - realized it was a mistake and weaned herself off the HC, damning all steroids and decided she did not have adrenal fatigue after all, and all HC was poison and she would never touch it again....her only salvation lies in Levo with a bit of T3. Her motto: a lot helps a lot ....so she kept upping the Levo and adding T3 in. By now she is on 275 mcg T4 plus 20 mcg T3, and in all seriousness heading for an increase to 300 mcg Levo. Her current symptoms include: bad shaking when under stress, breathless, easily frustrated, salty taste in mouth, enormous (!) weight gain, white triangle around the mouth, pain in breasts, low blood pressure (95/60), excessive sweating under physical stress - to name just the major ones..... Her last blood results were: Medication : 262,5mcg T4 & 20 mcg T3 FT4 2,51 ng/dl (0.90 – 2.00) 146,36% FT3 5,81 pg/ml (2.2 – 4.9) 133,70% TSH < 0,05 Yet ... she is still absolutely convinced that those symptoms are hyPOthyroid symptoms and it is just a matter of upping the Levo until they disappear and she'll be well ... - though in between she had doubts and thinks perhaps ERFA thyroid would be worth a try (hence my enquiry) ..... but under no circumstances whatsoever would she accept that she can live even for a few days - let alone weeks - without her precious T4 input .....Her argument is that hypo symptoms and hyper symptoms can be identical, and she is certain that hers are of the hypo variety.... I have exchanged over 100 emails with her, and got a mix of verbal abuse and friendly curiosity in reply. I think in true Germanic fashion (I'm allowed to say that, since I am German myself <g>) she wanted to teach granny how to suck eggs. On the whole I was very patient with her, but today, when she said that Sheila didn't understand the use of hormones (amongst other things), something inside me snapped and I gave her a piece of my mind without mincing my words. I guess that's the end of our short cyber relationship, but this woman was giving me a headache and my adrenals aren't up to that <g>.... What are your thoughts? Is it possible (bearing in mind her above current blood results) that she could be right and by upping the Levo all her symptoms might miraculously disappear? Apparently her doctor goes along with her idea of treatment, but tbh, I rather think the doc must have resigned himself to just nod. She seems unstoppable. love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 What are your thoughts? Is it possible (bearing in mind her abovecurrent blood results) that she could be right and by upping the Levoall her symptoms might miraculously disappear? ----------- My own thoughts are that she is overdosed on medication and that her symptoms are as much from being HYPER as HYPO. If you read the checklist of symptoms there is an overlap. Any doctor that would allow her a more than replacement dosage of HC is dangerous. I would guess that she might be among those who are "thyroid resistant" and needs to do a cure with all T3 drugs for several months, as well as getting all her other numbers where they should be, that is cortisol, ferritin, B12, etc. The hormones are sitting in her blood and not getting into her cells. I went up to 250 mg of generic levothyroxine (in France), then found a French endo at the American Hospital who let me start adding Cynomel (Cytomel elsewhere). I went down to 137.5 levothyroxine and up to 37.5 Cynomel and still didn't feel myself. And this despite the fact that many of my fibromyalgia symptoms, such as aches and pains and some stiffness, did start to going away, but not all my fibro fog and not fibro crashes. My fibro crashes were being wiped out when doing just a little too much, even though much less than before being diagnosed with fibromyalgia and Hashimoto's. Only when I started on NDT (back in the States) did I start getting back to where I was when this journey began a dozen years ago. I know now that I might have gotten well faster with HC, but that wasn't an option at that time. I switched from my combo to NDT, as I explained, and then kept increasing until I felt well. With 5 grains of NDT, my T4 is over 75 percent, my T3 is slightly over the top of the range. But the range was lowered some years ago. My only problem now will be keeping a good source for NDT, now that I'm back in France. I have yet to see the French endo who let me go onto the combo. I'm not sure what he'll say about NDT. You can't help someone who isn't interested in listening or being helped. Give yourself a pat on the back and then let it go. Stay well, Fibrojay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 I find with people like this lady that a time comes when you have to leave them to get on with what they have decided to do and let them find out for themselves whether their treatment will work or not. All we can do is give them the facts in the hope they will sit down and study them to find out if there could be another associated condition going along with their hypothyroidism. Is she yet another mortal that actually believes that levothyroxine sodium is the active hormone? Levothyroxine sodium will work for many people with hypothyroidism and will alleviate some of the symptoms. However, many hypothyroids will not respond well to levothyroxine sodium. I wonder whether she is taking selenium and zinc because many hypothyroid sufferers are deficient in these. These two minerals are critically important for converting the thyroxine (T4) into triiodothyronine (T3),the hormone the body uses at the cellular level. Thyroxine is known as a " prohormone " because the body has to convert it into another hormone for use. Therefore taking levothyroxine sodium or is the same as taking a prohormone. The body has to convert it into the active hormone (T3) for the effects to be felt. If the hypothyroidism is due to a breakdown of the conversion of T4 to T3, the person will feel little benefit from taking T4. Perhaps suggest to her that she gets tested to see whether she is suffering from reverse T3 (rT3) and send her a link to the information that Nick's has put together about this on his web site http://thyroid-rt3.com/ If she does increase her T4 yet again, and still has continuing symptoms, she might start to listen. Has she had her ferritin, B12, vitamin D3, magnesium, zinc, copper and folate tested do you know? Luv - Sheila Many thanks Fibrojay, this is very interesting how you handled your switch. I don't think there are many folks on here on high-ish doses of T4/T3, who have done this. So your experience is invaluable. How did you feel during the time of swap-over? Mind you, I have just received a very rude reply in response to the suggestion that Sheila made, that I have now told this woman where to get off. I think she is a lost cause..... but just for arguments sake, I would like to hear all your " verdicts " on this lady's case history. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Hello Sheila, ***I find with people like this lady that a time comes when you have to leave them to get on with what they have decided to do and let them find out for themselves whether their treatment will work or not. All we can do is give them the facts in the hope they will sit down and study them to find out if there could be another associated condition going along with their hypothyroidism. That time appears to have come with her, Sheila. She's one of those people who "knows best" and has extremely strong views, and is 200% convinced she's got it right.... ***Is she yet another mortal that actually believes that levothyroxine sodium is the active hormone? Levothyroxine sodium will work for many people with hypothyroidism and will alleviate some of the symptoms. However, many hypothyroids will not respond well to levothyroxine sodium. Sort of, yes. She asked me if I was *sure* that *only T3* and *no* T4 was used in the cells...and even after I gave her references about that, she still contradicted me and said that this can't be so. Her reason: Many people take T4 only and have a high FT4 yet low FT3... and if it were only T3 that goes into the cells, then those people would have extreme hypo symptoms because their FT3 is so low .... but she *knows* that this it not the case; many people feel very well with high FT4 and low FT3 and this proves that T4 is also working on a cellular level - end of !! The sad thing about it is that this woman knows actually an awful lot about Hypothyroidism. She has studied the subject in much detail... but then has drawn "her own" conclusions - many of which are taking on a new direction and heading off into lala-land.... ***I wonder whether she is taking selenium and zinc because many hypothyroid sufferers are deficient in these. These two minerals are critically important for converting the thyroxine (T4) into triiodothyronine (T3),the hormone the body uses at the cellular level. Yes, she knows about the importance of the minerals and vitamins and watches her values and keeps them topped up ... ***Thyroxine is known as a "prohormone" because the body has to convert it into another hormone for use. Therefore taking levothyroxine sodium or is the same as taking a prohormone. The body has to convert it into the active hormone (T3) for the effects to be felt. If the hypothyroidism is due to a breakdown of the conversion of T4 to T3, the person will feel little benefit from taking T4. Well, for that bit she has her own interpretation ( ***Perhaps suggest to her that she gets tested to see whether she is suffering from reverse T3 (rT3) and send her a link to the information that Nick's has put together about this on his web site http://thyroid-rt3.com/ Too late for that, Sheila. I was so angry about her impudent response yesterday, that I told her she can insult me all she likes, I am beyond caring - but that I draw the line at her insulting someone who has already forgotten more about endocrine disorders than she will ever be able to learn..... - and I have a feeling that this might have done the trick of her no longer talking to me..... <g> ***If she does increase her T4 yet again, and still has continuing symptoms, she might start to listen. Has she had her ferritin, B12, vitamin D3, magnesium, zinc, copper and folate tested do you know? Yes, she keeps her vitamins and minerals always topped up. As for continuing symptoms.... she claims that every time she increases her T4, another of her "hypo" symptoms disappears - but in the same breath she told me that she is at the end of her tether, can barely walk any more, feels hot like she's inside a sauna, water is running down her body, she also has oedema, her knees are giving in, her hands and legs are shaking, her muscles are weak etc, etc....- yet - she wants to give 300 mcg Levo "another chance" ... maybe this will be her long awaited break-through. ly, it could well be her 'break-down' . But as the saying goes - there are none so blind as those who will not see. love, xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Hi , I would agree with you, those who have tried to change over a bit at a time seem to have run into problems- feeling hyper due to the excessive T4 in their system which could not be used ( this also often causes joint pain). If you can't use the T4 then there is no point taking it! As she has been taking T3 already then she can probably do the changeover more quickly than if she was on T4 alone. Probably something like starting on 2 grains- which is 18mcg T3 straight away without a break then increasing a half grain at a time, following the 'how to take Armour' doc from there on. thyroid treatment From: christina@...Date: Thu, 18 Feb 2010 23:32:01 +0000Subject: Switch from synthetic T4/T3 combo to Erfa - How ? I've got a question for an acquaintance in Germany, who wants to try a switch to Erfa..... but she is already on a combination of T4/T3 and on a relative high dosage as such. I could not find any instructions in our files for such a case.... She is currently taking 275 mcg Levothyroxin plus 20 mcg T3. Her doctor is proposing to first reduce the T4 to 225 mcg & the T3 to 5 mcg and add 1 grain Erfa .... and depending on how it goes -following it up with 200 mcg T4 , no T3 , but add 2 grain Erfa. I have no experience on how someone should best switch to NDT when somebody is already used to receiving T4 and T3, but still feels very ill on it. My personal preference would be a clean break - stop the synthetic one day and carry on with natural thyroid the next.... but would that be the right thing to do in those circumstances, and if so - with which dosage should she start ? She is terrified of experiencing a crash if she opted for a dosage lower than her combined thyroid meds at present. Many thanks, Do you have a story that started on Hotmail? Tell us now Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.