Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 hi Matt Do you have any other symptoms of other hormone deficiencies? Ignoring test results, what do your symptoms match? (Do the hertoghe questionnaire: thyroid treatment/files/MEDICAL%20QUES\ TIONNAIRES/) When you say you tested adrenals, how did you test? What were the results? If you've posted the results before can you send me the link? have you checked other things like Vitamin A, pregnenolone, testosterone, growth hormone/IGF-1? >I think however, having had 'normal' tests as recently as May in these areas, and free T3 quoted as 4.9 on their scale of 4 to 8.3, it seems my levels are all within range. Within range isn't optimal, though? >> Question to you all too, what SHOULD I be feeling with taking T3 and T4? The goal of any hormonal treatment is to restore a patient to 'normal', a state of well being, not just going by lab tests? Chris > > > > > Question to you all too, what SHOULD I be feeling with taking T3 and T4? > > Any thoughts? > > Matt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 i just found some of your old posts, Matt, and see you've had cortisol tested and testosterone. But did they test SHBG and CBG at the same time? High levels of either can reduce the amount of free cortisol and testosterone. Have you tried NDT such as Erfa? Do you have adrenal symptoms, ignoring the test results for now? Chris > > Those of you who've read my posts over the last month or so, may have a idea of what's been going on. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 When I was first started on T3 I was told to stop taking thyroxine completely for 4 weeks. Then he started me on 10mcg of T3 in the morning. If I was fine on that for 3 days he increased it to another 10mcg mid day. This was for another 3 or 4 days. Then it was increased again with another 10mcg in the late afternoon. Again OK with that for a few days the morning one was increased to 20. Finally I found I was fine with 20mcg in the morning and 20mcg in the day but not with any in the late afternoon. So we found 40mcg was the best amount of T3 for me. He then added in thyroxine. 50mcg for 6/8 weeks. I was fine with that so he added another 25mcg for a further 6/8 weeks. Again still OK then it went to 100mcg and I was fine. As I was getting really well on 100mcg thyroxine and 40mcg of T3, that was the dose I needed. It was a long laborious journey. I would feel fine one day and awful for the next 6, then as time went on I felt fine for 2 days in the week and awful for 5. The one day I woke up and thought, not only do I feel great today but I think I have been feeling great for the whole week. As I was now settled in what I took and didn't need to see him so often, and as it was a private prescription for T3 (thyroxine I already got from GP on NHS), which I had to pay for anyway, I decided if I was going to buy my medication I might as well buy Armour. So I changed to Armour near the equivalent of the T4/T3 I was taking. This was fine. If I need to tweak it at all I always leave 6 weeks after any increase because of the T4 in it. I say if you were sitting in a stationary car and another car came crashing into you at 20mph there would be less damage done than if it crashed into you at 50mph. Lilian So, having fought for T3 for years, I tried (on the advice of my consultant endo) first the recommended dose of 60mcgs and no T4. Having felt rough on that Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Matt don't give up on T3 , i had this at the beginning of T3 and it wasn't until i started supplementing my natural vits and minerals it all fell in place. I was on T4 for years and i felt awful. you will get there on T3 love sha xxxxxxxxxxxxxxxx > > Those of you who've read my posts over the last month or so, may have a idea of what's been going on. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Hi Mat, look in our files for one that explains what can go wrong if thyroid meds don`t work well. get the adrenal salivary test done. if the adrenals are not optimon then neither will your thyroid. you can order the tests at a discount- in our files. Angel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Matt you should listen to the people who maybe have the most knowledge with T3 and T3 dosing... is one of them. If you dont want to listen to him thats fine, but you will most probably carry on going around in circles. In your previous posts (who paul has worked with regarding early morning dose of T3) knows alot about T3 and he gave you some really good advice about how to dose your T3 and a few related things here thyroid treatment/message/92008 Read and understand what he is saying then maybe decide on your dosing ? I am pretty sure 175mcg of T4 + 20mcg of T3 is WAYY too much. T3 is up to 8 times stonger 8x20 = 160 ... I know this is not how it works but imagine if you were taking 175+160 mcg of T4 = 335mcg of T4.. i hope you see my point. Cheers Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Getting T3 to work takes time because the receptor sites are just not that sensitive to it. Then you have all the T4 buzzing around blocking up these sites. So what do you do practically ? Point 1 = Move onto a much lower dose of thyroid meds to start with and then build slowly. This goes for T4 as well. Point 2 = Monitor the body regulary each day for temps and blood pressure and HR. You want to see how the body improves Point 3 = In your case i would move to a very low dose of T4 and stay on that for the next 3mths without changing. I think your FT4 is very high as well so you could easily not take any for a month and just use T3. However, i would just try using a dose of 25 or 50mcgs per day of T4. Plus (and i have found this to be very important) take the T4 at BEDTIME. The reason is the body wants some access to thyroid meds when asleep in order to make a good level of cortisol at night. I have recently found this out for myself and moved my T4 dose to the morning and i really went off it. I do so much better with the T4 there for the body when it is sleeping. The rest of the time you are feeding the body with T3. T4 is a storage hormone and if you have some in your system then you shouldnt miss a T4 dose. However, i really do so i think T4 can have action on the body when ever you take it. Point 4 = How to use the T3 as your main source of energy for the day. You have had some problems with it and i think this is down to using too much T4 and starting on to much T3 initially. Go for 40mcgs of T3 for your first 3 days. 20/10/10. Also dose at these set times = 5am /10.30am / 4pm. See how you go for 7 days. Write down if you feel worse at lunchtime or in the evening for example. If feeling half good stick with this level for a bit longer. Then increase the second dose by 5mcgs = 20/15/10. Again give it 3 days or longer if possible. Keep increasing the doses by 5mcgs until you are on 20/20/20. If you feel very bad you could increase a bit faster. You then may need more, i dont know. So you would increae the first dose to 25 etc. BUT all this should take a long time. I myself have sat on 52.5mcgs for most of last summer and autumn and i am now taking 62.5mcgs per day of T3. I am still finding i need to increase the T3. This is a good sign if you do it slowly because the body is putting out a lot more energy due to feeling fitter etc. So it now starts to use up more T3 (receptors doing better) and so you can find yourself slipping back a little. So you increase again and you find you have moved onto the next higher level of metabolic activity. I am finding i am staying good for long periods now and it is superb. I have also just increased my T4 to 50 from 25 and was on this 25 dose for the last 5mths. Prior to this i was on 12.5 T4 per day. So you can see i am increasing my meds very slowly and i think this is the bioggest key out there. SLOW DOSE INCREASES ALLOW THE BODY TO ADAPT AND RECEPTORS TO COME ONLINE AGAIN. In your case and all other thyroid patients something has happened to stop the receptors from sucking up the T3. Why this is we dont know, but i am sure we can all nurture these receptors back to life if we go slowly and have a systematic approach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Hi Matt, It's been ages since I've written on this newsgroup but I was so drawn by your experience. Your endo asked you to do this: > So, having fought for T3 for years, I tried (on the advice of my consultant endo) first the recommended dose of 60mcgs and no T4. 60 mcgs are way too much for anyone to take! And then switched you to this:175 T4 and T3 10 in the morning and 10 in the evening - basically breaking one 20mcg pill in half each day. > > Now, having taken that prescription for just over a week, as with the T3 only, it seems to build over that week or so, similar feelings - feeling a bit strange, heart palps etc etc. > One week isn't enough time to know that T3 isn't for you. and I was shocked at the initial prescription of 60 mcg of T3 per day, goodness that must have been horrible. You've messed your body around for a bit and now it just needs to settle. Don't give up, taking T3 can be initially difficult but it will be worth it I promise! Kind regards nna If you can bear it, just go with some 5 mcgs (quarter of a pill) of T3 in the morning plus your normal dose of 175 T4. Do this for a couple of weeks minimum then see how you feel. Initially you should start feeling a bit warmer, colours will seem brighter and emotionally you feel a bit more stable. Give yourself time to get used to it. This positive effect should appear after three weeks but may take up to six weeks. If you don't feel much you can move to 10mcgs in the morning. After this initial increase you will know if you need another increase when negative symptoms appear. Feeling sluggish, tired, sore throats, or whatever sent you to the doctor in the first place. Increase by only 10 mcgs and take that at lunch time. Some people only need a little bit of T3 and are really sensitive to it, usually the ones that were lacking the most in the first place. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 The idea of taking T3 twice daily Matt is because it has a very short half life and after 6 to 8 hours, the effect starts to leave your system, so we recommend taking it when you wake in the morning and around 2.00p.m. to 3.00p.m. in the afternoon, to 'keep the engine topped up' and this stops you having the afternoon 'slump'. I personally think that it is not necessarily the T3 building up over the week, but the fact that you are taking so much Thyroxine with it. It can take up to 6 weeks for thyroxine to be fully utilised and for your body to get the full benefit. You may be one that is not able to convert the T4 into T3, and if that is the case, there is no point in continuing to take T4. Why would you need to do this if it isn't taking away your symptoms. I would find a doctor who KNOWS about how the thyroid hormones work and one who regularly uses T3 (either synthetic or natural) on those patients who don't do well on T4-only. I am not sure whether there was anybody on the list that I sent you reasonably local to you, but it is very obvious that the endocrinologist you were sent to knows little to nothing about this. My answer is NO, do not say goodbye to T3.Wait and see what the results come back and post them here on the forum, but we need the actual figures and the reference range for each of the tests done. We do not want to know that the doctor said that all your results were 'normal'. This applies to your thyroid function tests and your minerals and vitamins. AND - by the way, a free T3 of only 4.9 on their scale of 4.0 to 8.3 MOST DEFINITELY IS NOT NORMAL. Free T3 when you are on thyroid hormone replacement should be in the upper third of the reference range, and yours is right at the bottom of the range, which shows that your T4 is NOT converting to T3 and it is T3 every cell in your body and brain need and NOT T4. To answer your question, what you should be feeling on a combination of T4/T3 if your body is able to utilise this properly is pretty brilliant, with all your symptoms disappearing and you starting to get back your normal life. However, if the 4 isn't converting, the T4 will be lying in the blood with nowhere to go, and you will get symptoms of toxicity, as well as a continuance of your hypothyroid symptoms. On the other hand, if you had a trial of T3-only, starting at a low dose, i.e. in your circumstances 10mcgs when you wake, another 10mcgs in the middle of the afternoon - staying on that for 7 days, and if no adverse reactions, add another 10mcgs daily, as evenly as you can, and again, if no adverse reactions (i.e. palpitations, sweating, dizziness, dire rear, agitation, feeling over stimulated and 'strange) after 2 to 3 weeks, increase again by another 10mcgs. T3 can be increased in this way (without the need for any thyroid function blood tests) until you reach a dose when, after an increase, within a couple or so hours, you DO start to experience some of the symptoms of hyperthyroidism. When that happens, you know that you have reached the level of thyroid hormone your body needs daily. It will take a little while for those symptoms to calm down, so just rest up until they have (up to 4 hours) and the following day, you stop the latest increase and go back on to the dose you were taking before. That is the dose you will probably need for the rest of your life. BUT - you should not start taking T3 if any of the specific minerals and nutrients mentioned above come back low in the range, and you must start to supplement these as soon as you can to get your levels up where they should be. Also, make absolutely sure you are not suffering with systemic candidiasis, adrenal fatigue, mercury poisoning etc. Before you check for these, go to our web site www.tpa-uk.org.uk and click on 'Hypothyroidism' in the Menu, and on the drop down Menu, click on Associated Conditions and read all about these there. Luv - Sheila So, you fellow hypo's, do I throw in the towel, do I lose the T3 for good, do I accept the way I felt on T4 alone and make the best of it? Yesterday, I had a complete load of blood tests again - as kindly advised by both Sheila and another kind forum member - all the vitamins, B12, D, potassium, zinc, magnesium, copper, etc, adrenal function, receptor do dah's, etc etc. I think however, having had 'normal' tests as recently as May in these areas, and free T3 quoted as 4.9 on their scale of 4 to 8.3, it seems my levels are all within range. So there we go, give up and accept the way I feel on T4, or persist with T4 /T3 mix for a while and see if things level out. Question to you all too, what SHOULD I be feeling with taking T3 and T4? Any thoughts? Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Sheila imo that dose is VERY high you should not stay on 175mcgs of T4 whilst adding in some T3. is suggesting to go on T3 only and then to add in some T4 would this not be a safer more sensible idea ? Also there is alot of contradciting information in this thread, no wonder matt is confused. Lastly i do not agree with saying do not take T3 if you have systemactic candida, systematic candida lives and thrives in a low body temperature and a run down body so no matter how hard you try to get rid you may not be able to. I see no problem in taking T3 if you have candida, and alot of people report their yeast starts to clear up when on the optimal dose of T3. Steve > > Steve, from reading 's message, he appears to be talking about dosing > with T3-only. This is not Matt's problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 I can't believe the incredible support, and encouragment, I am receiving from this site - both from you Sheila, as well as other forum members and contributors. Thank you all. I have responses I need to print, re-read and try to understand better, and I'm looking forward to doing that. Sheila, I have one question at this stage. You mentiponed you had sent me a list of Consultant Endo's, but I haven't seen one. I am prepared to travel to receive top quality advice, and I have full BUPA cover, can you recommend one or two, who you know to be able to discuss, explain and prescribe, in an informed manner? To date, the two private consultants I have seen, seem to really be shooting in the dark, and I am left amazed by the lack of direction of their advice and prescription. Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 I have sent you the list of Doctors just now, check your spam folder. >> To date, the two private consultants I have seen, seem to really be shooting in the dark, and I am left amazed by the lack of direction of their advice and prescription. what did they do ? chris > > I can't believe the incredible support, and encouragment, I am receiving from this site - both from you Sheila, as well as other forum members and contributors. Thank you all. > > I have responses I need to print, re-read and try to understand better, and I'm looking forward to doing that. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Hi Thanks for your message. Where do I find the spam folder? As in 'they', do you mean what did the consultant's and the GP do? Well, I've been fighting with my GP for the last four years regarding alternative options other than T4, simply saying that I still didn't feel right, as compared with pre-hypo diagnosis. Eventually - the GP having been proved incorrect about T3 availability in this East Anglia region, they made me see a private consultant endo, who prescribed 60mcg T3 straightaway - but with no other advice or rationale than " let's see what happens " . As I said in previous forum messages, I felt awful on that dose, and dropped it quickly. I then waited until it was out of my system, before insisting on a T4/T3 conversion blood, which I had to ask for three times, as each time the lab said because my T4 and TSH were within normal ranges - circa 25.4 and 0.05I seem to recall (don't have my chart to hand), they wouldn't do the conversion test. Eventually they did one, and it came back at 4.9 - again apparently within perfectly normal range. So, having then visted the consultant endo again, I am now on the 175 T4, and 10 + 10 T3 mix. Bottom line is though, that my GP, by his own admission is out of his depth, and both the two consultant endos I've seen, well, one was totally disinterested, and charged £200.00 to BUPA for simply saying that T4 was the only treatment and tough, I had to get used to the illness, and the other more recent guy, speaks in a strange incoherent technical manner, and basically rambles on about not much before pretty much letting me try what I like dose and ratio wise. What I'm basically saying, is that for professional consultant endo's, there lacks any real detailed explanation, nor reasoned rationale behind my treatment, and the dose I'm given of T4 and T3. What I have gained from chatting in this forum, is so, so much more informative, and what I really want, is to sit down in front of a consultant - not to be prescribed what I want because I've pressed for it, but to give me a proper 'service', investigate my symptoms and blood test results, and prescribe accordingly, monitoring and making rationale judgement on changes to dose. Mat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Hi Matt I am referring to the 'junk' or 'spam' folder in your email account. I sent a message to your email address with the list of doctors as an attachment and sometimes private messages end up in there.... > As in 'they', do you mean what did the consultant's and the GP do? Yes :-) > > What I have gained from chatting in this forum, is so, so much more informative, and what I really want, is to sit down in front of a consultant - not to be prescribed what I want because I've pressed for it, but to give me a proper 'service', investigate my symptoms and blood test results, and prescribe accordingly, monitoring and making rationale judgement on changes to dose. Have these drs you've seen checked you for other problems? If so, and you are happy that it's just your thyroid that's wrong, then could you perhaps see Dr Skinner - unless someone can reccomend a good endo locally? I realise you're with Bupa - I don't know if Dr Skinner is on Bupa Thyroid treatment does seem to be trial and error, you need to go by how you feel as much as a lab test - that's my view anyway. I think it needs to be a collaboration between doctor and patient. *but* you need a doctor who knows what he's doing and has a vague idea of what the right dose'd be for you to start with, then you can tweak it if necessary. Hopefully there'll be someone on the Doctor's list who can help, if not , there is Dr Skinner. chris Quote Link to comment Share on other sites More sharing options...
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