Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Are you sitting comfortably?? I've just been informed that I will need to be tested for the third time in a month because the doctors don't like the results they're getting from my blood tests for TSH, T4 and T3. I've barely taken any thyroid meds in almost a month because I'm one of those in range people who is trying to get recognised as hypothyroid. At some point my TSH just has to rise but as yet it's stubbornly staying extremely low, as is the T4 and T3. So here's to another 10 days completely off meds (no armour for the last 4 weeks, a tiny bit of T3 last few days) in order to convince the docs that I'm suffering. I've stayed fairly clear of the forum lately because I can't trust what I might write at the moment - brain's rather confused. Luv Bella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 HI Bella Tell us what your last results were. You say your TSH was low - ok, but you also say so was your Free T3 and Free T3. Can you tell us exactly what these were, because, never mind the TSH, if your FT4 and FT3 are low, you are in trouble and need treatment. Let me know asap. These should both be in the upper third of the reference range. Luv - Sheila Are you sitting comfortably??I've just been informed that I will need to be tested for the third time in a month because the doctors don't like the results they're getting from my blood tests for TSH, T4 and T3. I've barely taken any thyroid meds in almost a month because I'm one of those in range people who is trying to get recognised as hypothyroid. At some point my TSH just has to rise but as yet it's stubbornly staying extremely low, as is the T4 and T3. So here's to another 10 days completely off meds (no armour for the last 4 weeks, a tiny bit of T3 last few days) in order to convince the docs that I'm suffering.I've stayed fairly clear of the forum lately because I can't trust what I might write at the moment - brain's rather confused.Luv Bella No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1329 - Release Date: 14/03/2008 12:33 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Hi Sheila, This is so completely the wrong way of doing this so please everyone take note and don't do this, ever! My doc doesn't know that I've taken thyroid meds and I went to her about another matter. She then decided to do thyroid tests. Panic! I put off the test for as long as I could, stayed off my 1/2 grain armour and all the T3 but that first test came back with everything suppressed, pretty much as expected. The second test followed because of course the first results made no sense but I'd been off meds for a good deal longer, only supplementing the T3 for a few days before realising that I would need to retake the test - the problem there is that yet again the TSH will have been suppressed. It's like a carry on saga. So now I'm looking at test number 3. I've been off armour for about a month. This is around the time that theoretically the armour should no longer have an effect on TSH so that's looking good. The other theory is that it should be possible to get a baseline after 10 days off of T3 and I am very hopeful that this is indeed the case. I'm going to try to get tested after 14 days off T3 (this will mean 6 weeks off armour)and all being well my TSH should do whatever it's going to do and I'll finally be able to get back to some form of functioning although by then I'll have alienated the last of my friends, lol. Ah, I can't find the info I've been referring to at them moment. I'll post it when I track it down. At present I don't have the test results but will phone and get them on Monday. Luv Bella > > HI Bella > > Tell us what your last results were. You say your TSH was low - ok, but you also say so was your Free T3 and Free T3. Can you tell us exactly what these were, because, never mind the TSH, if your FT4 and FT3 are low, you are in trouble and need treatment. Let me know asap. These should both be in the upper third of the reference range. > > Luv - Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Bella how ever long have you been doing this cos you've underactivated your own thyroid. Luv Chris > > Hi Sheila, > This is so completely the wrong way of doing this so please everyone > take note and don't do this, ever! > My doc doesn't know that I've taken thyroid meds and I went to her > about another matter. She then decided to do thyroid tests. Panic! > I put off the test for as long as I could, stayed off my 1/2 grain > armour and all the T3 but that first test came back with everything > suppressed, pretty much as expected. > The second test followed because of course the first results made no > sense but I'd been off meds for a good deal longer, only > supplementing the T3 for a few days before realising that I would > need to retake the test - the problem there is that yet again the > TSH will have been suppressed. It's like a carry on saga. > So now I'm looking at test number 3. I've been off armour for about > a month. This is around the time that theoretically the armour > should no longer have an effect on TSH so that's looking good. The > other theory is that it should be possible to get a baseline after > 10 days off of T3 and I am very hopeful that this is indeed the > case. I'm going to try to get tested after 14 days off T3 (this > will mean 6 weeks off armour)and all being well my TSH should do > whatever it's going to do and I'll finally be able to get back to > some form of functioning although by then I'll have alienated the > last of my friends, lol. > Ah, I can't find the info I've been referring to at them moment. > I'll post it when I track it down. At present I don't have the test > results but will phone and get them on Monday. > Luv Bella > > > > > > HI Bella > > > > Tell us what your last results were. You say your TSH was low - > ok, but you also say so was your Free T3 and Free T3. Can you tell > us exactly what these were, because, never mind the TSH, if your FT4 > and FT3 are low, you are in trouble and need treatment. Let me know > asap. These should both be in the upper third of the reference range. > > > > Luv - Sheila > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Thanks Sheila, It's always nice to get a bit of sympathy and understanding, especially when things has dragged on like this has. I'm going to plod on and monitor myself carefully. Like you've said though, if doctors would acknowledge that some of us (5%) can be hypothyroid with normal results then I wouldn't have to be putting myself through this. Thank goodness I got myself relatively healthy before this though as I know it's helping me to cope. Luv Bella > > Damn - its the NHS that drive us into doing such things. What is happening to you Bella is what happened to our June last year when her GP refused to consider her need to change her medication change and she wanted to prove to him that going back onto thyroxine was the worst thing that could happen to her - and it was. Why are there people out there trying to tell us that we must listen to our doctor and not go outside his/her recommendations within the NHS, they really do NOT know what they are talking about and obviously have no conception of what it is like to be left without the treatment we need. The people who are getting better are the people who are looking after themselves, or, like me, been lucky in getting an endocrionologist and GP who is happy to recommend the thyroid hormone replacement I need (which is Armour) - and actually going on to recommend it for yet other patients who are not doiong well on thyroxione. > > I hope you are better soon and back on your T3, but it might take you some time to get settled again. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Hi Bella Mine never rose after 3 years of a reduced dose. I dont know how long you have been taking the medication. I would say your screwed and would advise you to come clean with your GP for your own safety. Luv Chris > > Could be but it wasn't that active to start with. What > shouldn't have been affected though is the TSH which should still > rise at some point. Here's the link I promised which will explain > just how long we need to be off meds to get a baseline and how to do > it. > http://www.endocrineweb.com/tests.html > > " Do I need to stop taking my thyroid pills for these tests? > > Since Euthyrox or Synthroid (and most other thyroid pills) behave > exactly as normal human thyroid hormone, they are not rapidly > cleared from the body as other medications are. Most thyroid pills > have a half life of 6.7 days which means they must be stopped for > four to five weeks (five half lives) before accurate thyroid testing > is possible. An exception to the long half life of thyroid > medication is Cytomel - a thyroid pill with a half life of only > forty-eight hours. Therefore it is possible to change a person's > thyroid replacement to Cytomel for one month to allow time for his > regular pills to clear the body. Cytomel is then stopped for ten > days (five half lives) and the appropriate test can then be done. > Usually patients, even those who have no remaining thyroid function, > tolerate being off thyroid replacement only ten days quite well. " > > Luv Bella > > > > > > Bella how ever long have you been doing this cos you've > > underactivated your own thyroid. > > > > Luv > > Chris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Nicely put lol. I'll come clean if I need to but frankly I've been worse than this before I ever got any treatment from anyone so I'm willing to wait a little longer. Bella > > Hi Bella > > Mine never rose after 3 years of a reduced dose. I dont know how > long you have been taking the medication. I would say your screwed > and would advise you to come clean with your GP for your own safety. > > Luv > Chris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 The whole point of her taking them in the first place was because she had hypothyroidism, what is she and the many thousands who remain undiagnosed supposed to do, remain totally unwell and a burden on the state or take their health into their own hands and make themselves well again. Unless people are totally stupid and I can assure you that Bella is not, they would not enter into taking thyroid meds lightly and would know that once they embarked upon them they would have to take them for life. If Bella was taking hypothyroid meds and she did not have an underactive thryroid, she would have made herself hyperthyroid not more hypothyroid. Any amount of T3 is suppressive by the way, you don't have to take loads of it to have your TSH become suppressed, just 1/4 grain of armour does the trick, I know because my bloods showed that within weeks of taking armour. nne I am sorry nne but I beg to differ. Bella has clearly been taking suppressive amounts of unprescribed T3. Once you start thyroid meds it is for life as it suppresses both the pituitary and thyroid rendering them useless. This is why once you start you cannot go back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Actually this is not true, Bella is having trouble getting her levels down because of the medication in her system. Knowing some of Bella's story, I know for a fact that she did not take self medication lightly and suffered for so many years before she did. Her thyroid was inactive long before she took thyroid medication and I don't understand how you can make a statement such as this. nne > Bella how ever long have you been doing this cos you've > underactivated your own thyroid. > > Luv > Chris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Thanks Sheila,It's always nice to get a bit of sympathy and understanding, especially when things has dragged on like this has.I'm going to plod on and monitor myself carefully. Like you've said though, if doctors would acknowledge that some of us (5%) can be hypothyroid with normal results then I wouldn't have to be putting myself through this.Thank goodness I got myself relatively healthy before this though as I know it's helping me to cope.Luv Bella>> Damn - its the NHS that drive us into doing such things. What is happening to you Bella is what happened to our June last year when her GP refused to consider her need to change her medication change and she wanted to prove to him that going back onto thyroxine was the worst thing that could happen to her - and it was. Why are there people out there trying to tell us that we must listen to our doctor and not go outside his/her recommendations within the NHS, they really do NOT know what they are talking about and obviously have no conception of what it is like to be left without the treatment we need. The people who are getting better are the people who are looking after themselves, or, like me, been lucky in getting an endocrionologist and GP who is happy to recommend the thyroid hormone replacement I need (which is Armour) - and actually going on to recommend it for yet other patients who are not doiong well on thyroxione.> > I hope you are better soon and back on your T3, but it might take you some time to get settled again.> > No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1330 - Release Date: 15/03/2008 14:36 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 I am sorry nne but I beg to differ. Bella has clearly been taking suppressive amounts of unprescribed T3. Once you start thyroid meds it is for life as it suppresses both the pituitary and thyroid rendering them useless. This is why once you start you cannot go back. Luv Chris > > Actually this is not true, Bella is having trouble getting her > levels down because of the medication in her system. Knowing some of > Bella's story, I know for a fact that she did not take self medication > lightly and suffered for so many years before she did. Her thyroid was > inactive long before she took thyroid medication and I don't understand > how you can make a statement such as this. > > nne > > > Bella how ever long have you been doing this cos you've > > underactivated your own thyroid. > > > > Luv > > Chris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi nne You obviously know best, I wont say another word. Luv Chris > > > The whole point of her taking them in the first place was because she had > hypothyroidism, what is she and the many thousands who remain undiagnosed > supposed to do, remain totally unwell and a burden on the state or take their > health into their own hands and make themselves well again. Unless people are > totally stupid and I can assure you that Bella is not, they would not enter > into taking thyroid meds lightly and would know that once they embarked upon > them they would have to take them for life. If Bella was taking hypothyroid > meds and she did not have an underactive thryroid, she would have made herself > hyperthyroid not more hypothyroid. Any amount of T3 is suppressive by the > way, you don't have to take loads of it to have your TSH become suppressed, just > 1/4 grain of armour does the trick, I know because my bloods showed that > within weeks of taking armour. > > nne > > I am sorry nne but I beg to differ. Bella has clearly been > taking suppressive amounts of unprescribed T3. Once you start > thyroid meds it is for life as it suppresses both the pituitary and > thyroid rendering them useless. This is why once you start you > cannot go back. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi Bella, Sounds like you may be nearing diagnosis if your results are off. Let's hope you suffering is worth it Fingers crossed for you! Subject: Ongoing Saga Are you sitting comfortably?? I've just been informed that I will need to be tested for the third time in a month because the doctors don't like the results they're getting from my blood tests for TSH, T4 and T3. I've barely taken any thyroid meds in almost a month because I'm one of those in range people who is trying to get recognised as hypothyroid. At some point my TSH just has to rise but as yet it's stubbornly staying extremely low, as is the T4 and T3. So here's to another 10 days completely off meds (no armour for the last 4 weeks, a tiny bit of T3 last few days) in order to convince the docs that I'm suffering. I've stayed fairly clear of the forum lately because I can't trust what I might write at the moment - brain's rather confused. Luv Bella ------------------------------------ Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi , Sheila, nne and Gosh it's all been going on since I've been offline. Thanks , yes I'm still hopeful of a diagnosis of course. I think it's all been said already chaps. I had a definitive diagnosis from Dr Peatfield some time ago and I have every reason to trust him especially considering that every symptom of hypoT that I had - and I had the lot - was reversed or reduced by taking thyroid meds. I sought out this diagnosis for the very reason highlighted here, I needed to know irrefutably that I was hypothyroid. I was on the brink of a real crisis and had swollen up, had a massive neck and was becoming afraid to go to sleep in case I didn't wake up. My poor GP suggested that I get some exercise and lose weight. So no, I didn't self treat lightly. wouldn't know that though because doesn't know my history and doesn't know me. nne is correct, even a small amount of T3 left in one's system will suppress TSH because T3 is how the body gauges thyroid levels. This is also why T4 treatment doesn't have the same affect on the TSH. The only other time that TSH could remain suppressed is if one has secondary hypoT, one is then hypopit. That's something that I haven't even entertained as being my problem. One step at a time! Luv Bella but you can call me 'Ellie' Sheila, lol > > Hi Bella, > Sounds like you may be nearing diagnosis if your results are off. > Let's hope you suffering is worth it > Fingers crossed for you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi Chris Bella knows what she is doing, she is highly read and very educated (unlike me) and she is a great person to go to when you need information. She has been hypothyroid for a long time from her medical history, but is one of the unlucky one's who keeps presenting with so called 'normal' blood results - always in the reference range, albeit borderline - but, here is the crunch - her GP will NOT diagnose her and therefore she is not being treated. She has tried everything, and talked long and hard with her doctor, but he refuses to budge believing that her TSH has to be above 10 and only THEN will he give her a diagnosis. In America, the top of the range is 3.0 - in Germany, it is 2.5 - and there are recommendations to bring this down to 2.0. Bella decided the only thing to do (and she is not alone in this) is to take matters into her own hands, and although she has been diagnosed by Dr Peatfield, gone down the road using adrenal glandulars, Armour Thyroid, cortef, and then changing to T3 only, making herself very well again, she still needs a diagnosis to be put on her medical records by the NHS. She has stopped taking all her thyroid medication (after all, if it wasn't for Dr Peatfield she wouldn't even be on treatment in the first place) but she needed to do everything she could to get her TSH and T4/T3 to a place where the GP would realise she is ill. June went through this last year, and several other members have done this, and it has worked for some people. Both June and Bella built themselves up before they went down this road, and both coped with the situation, albeit they felt pretty horrid for a while. BTW - some people CAN grow their thyroid back and make it start functioning again, there is the wife of one doctor I know who did exactly this after being hypothyroid for years and taking Armour. It was thought about 3 years ago that I was also growing my thyroid back even though I have Hashimoto's and my thyroid had been almost destroyed. There are occasions when even a tiny morsel of thyroid has been left that it will suddenly come back to life. Hope this helps. Luv - Sheila > > Mine never rose after 3 years of a reduced dose. I dont know how > long you have been taking the medication. I would say your screwed > and would advise you to come clean with your GP for your own safety. > > Luv > Chris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 > Hi Bella Thank you for that, my comments were out of sheer concern and nothing else and you really do have my sympathy. I am interested in your comments on hypopit as on a reduction of T4 my TSH did not rise even after 3 years and I felt dreadful (so I do know what you are up against although I have never had weight problems). My dose was dumped after 33 years having had TSH and FT4 tested for the very first time. Prior to this it had always been T3 uptake, T4 and FT index, the TSH box was never filled in and there was never any question about dumping my dose. I have wondered before whether I may have had hypopit. I mentioned it to the endo on my last visit, he said it was highly unlikely as he had only ever seen one hypopit case, then I saw a letter he had written after my first visit addressed to my GP mentioning about the TSH staying the same on either dose. Luv Chris > Hi , Sheila, nne and > >> > nne is correct, even a small amount of T3 left in one's system > will suppress TSH because T3 is how the body gauges thyroid levels. > This is also why T4 treatment doesn't have the same affect on the > TSH. The only other time that TSH could remain suppressed is if one > has secondary hypoT, one is then hypopit. That's something that I > haven't even entertained as being my problem. One step at a time! > > Luv Bella but you can call me 'Ellie' Sheila, lol > > > > > > Hi Bella, > > Sounds like you may be nearing diagnosis if your results > are off. > > Let's hope you suffering is worth it > > Fingers crossed for you! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi Bella, TSH does not "work" in showing hypo if you have mercury problems (amalgam fillings), or this is what Andy Cutler the expert on chelation says. Just a thought. Val Gosh it's all been going on since I've been offline. Thanks , yes I'm still hopeful of a diagnosis of course. I think it's all been said already chaps. I had a definitive diagnosis from Dr Peatfield some time ago and I have every reason to trust him especially considering that every symptom of hypoT that I had - and I had the lot - was reversed or reduced by taking thyroid meds. I sought out this diagnosis for the very reason highlighted here, I needed to know irrefutably that I was hypothyroid. I was on the brink of a real crisis and had swollen up, had a massive neck and was becoming afraid to go to sleep in case I didn't wake up.My poor GP suggested that I get some exercise and lose weight.So no, I didn't self treat lightly. wouldn't know that though because doesn't know my history and doesn't know me.Luv Bella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Thanks Val, I will do some reading on that. Very interesting! Luv Bella > > Hi Bella, > > TSH does not " work " in showing hypo if you have mercury problems (amalgam fillings), or this is what Andy Cutler the expert on chelation says. Just a thought. > > Val > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Absolutely 100%, I totally admire all you ladies (and gents) who are fighting for a diagnosis and Sheila for her diligence in trying to get that help for you - please don't let anyone change your mind Bella, do what YOU think is right for you. nne Dear Bella, Please don't let anybody here cause you to change your mind as you have been through so much to get to this stage and to be honest, received nothing but sheer admiration on my part for your bravery. Don't let what anybody has said here stop you completing your task in your fight to get a diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 I just want to echo what Sheila has written. Posts can come across as very judgemental at times and one's health and the choices they make are very emotive issues. Even if people don't understand why someone is making the choices they are, they should be respected - we are just trying to be well and trying to get there the best way we can. I totally understand where Bella is coming from and why she decided on this route which I imagine was not something she has undertaken without careful thought and consideration. Reeta x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Dear Bella, I just wanted to add that I think you are a very brave, couragous lady to do what you are doing, and the whole point is, that you have proved to yourself that you are right. If you don't have a thyroid problem, thyroid meds will make you ill, not better. I am at the beginning of my journey, but one thing I do know is that it is better to try something, than sit and do nothing living a shell of an existence. Well done Bella, and all I can say is good luck and I hope and pray you get your hypoT diagnosis soon so you can get on with living. Angie xx > I just want to echo what Sheila has written. > Posts can come across as very judgemental at times and one's health and > the choices they make are very emotive issues. Even if people don't > understand why someone is making the choices they are, they should be > respected - we are just trying to be well and trying to get there the > best way we can. I totally understand where Bella is coming from and > why she decided on this route which I imagine was not something she has > undertaken without careful thought and consideration. > Reeta x > Quote Link to comment Share on other sites More sharing options...
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