Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 , why did you start T3 only ? Was it advise from a website / doctor etc ? Or just that the T4 wasnt helping at all. Are you being given T4 by the NHS ? Do you have any blood test results while you were on the T4 I feel we all need some T4 and T3. How much of the two we need depends on the individual. Some need more T3 than T4, others need a greater amount of T4. > > Hello all, > > About 4-5 weeks ago, I stopped T4 altogether (was on 100mcg's a day together with Cytomel T3), so guess it's now more or less out of my system. I am now (self-medicating, alas)on 37.5mcg's Cytomel a day - 7am 1pm and 6pm. Thing is, about a week ago (maybe a b Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 Sounds like low adrenal reserve . Do the Adrenal Questionnaire in our FILES SECTION on this forum, and also ask your GP to test your levels of iron, transferrin saturation%, magnesium, folate, copper, zinc, vitamin B12, and vitamin D3 and when you get these results, post them here on the forum with the reference range so we can help with their translation. If any of these are low in the range, no amount of thyroid hormone can be properly utilised at the cellular level. Luv - Sheila About 4-5 weeks ago, I stopped T4 altogether (was on 100mcg's a day together with Cytomel T3), so guess it's now more or less out of my system. I am now (self-medicating, alas)on 37.5mcg's Cytomel a day - 7am 1pm and 6pm. Thing is, about a week ago (maybe a bit more) I started to have a recession. No way as bad as when I was on T4 alone, but still, some symptoms are returning, such as shaking inside, night sweats, persistent sinus infection and getting worse day by day. Some symptoms, such as dry skin, exhaustion, weight gain, brittle nails, dry eyes, never improved at all. So I'm pretty sure I need to adjust my dose - but to what? I don't know whether to re-introduce a small amount (say 50mscg's?)of T4, or up the Cytomel to (say) 50mcg's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 Hello , thanks for replying. I was on T4 for a year and just became more and more ill, but my 'specialist' refused to try anything else, and I became so desperate I ordered Tiromel (Turkish Cytomel, much weaker) from the internet and started taking a v small dose (6.5 mcg's twice a day)together with 125 mcg's T4. Some symptoms (and boy! did I have a lot! I Dreaded going to bed at night, as I felt as if I was dying)started Then I went and confessed all to my lovely GP who immediately prescribed me Cytomel and told me to 'experiment', which I did. I very slowly, during a few months reduced the T4 (which I'm convinced was pooling in the blood) and increased the T3 and more and more symptoms either disappeared or got slightly or much better - until about a week ago, as mentioned. So now I'm winging it and don't know what to do. I certainly don't want to go back to how I was feeling on T4 alone. But what would be best, adding some T4 (dubious) of upping the T3? I'm leaning towards the latter (up it to 50, for a trial period) but could do with some advice! I'm panicking a bit because I DON'T want symptoms to come back which actually went away on T3 alone - last night for example I spent hours 'shaking' inside, which hasn't happened for quite a few weeks now, I was even able to stop the meds I was given for it. Also, I was MUCH less disorientated, dizzy and brain-foggy, but that's reappearing slightly too... I'm in the Netherlands by the way (although British by birth), so as you can see, we have our fair share of dodgy docs too Oh, forgot to mention - when I was on T4 alone and so ill, my bloods were 'within range' so specialist told me my thyroid problem was 'under control' (he even write that to my GP who, luckily, didn't believe him). > > , why did you start T3 only ? Was it advise from a website / doctor etc ? Or just that the T4 wasnt helping at all. Are you being given T4 by the NHS ? Do you have any blood test results while you were on the T4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 Ok, this is what i have found out. Taking T4 at bedtime helps " feed " the adrenals. When we go to sleep our TSH goes up and the body starts to make T4/T3. At the same time the thyroid hormone starts to help the adrenals generate cortisol. the two go together. IF you are low in T4/T3 you will be low in cortisol. It sounds like you are not taking enough thyroid meds and not generating enough cortisol. We can combat this problem by the way we take T4 and T3. As i said get on some T4 and take it at bedtime. This will give you a basic level of T3 coverage (T4 will be there to convet to T3). Now focus on taking the T3 at a specific time. If we wake up at 8am, the adrenals will have been making the cortisol about 4h's prior to this wake up time. So give your body some T3 at the start of this process. This means waking up at 4am to take a dose of T3. Stick with your current doses, but move them to 4am/10am/3pm. We cant talk about dosing here, so if you want to email me about more specific stuff i will help you out. > > Hello , thanks for replying. I was on T4 for a year and just became more and more ill, but my 'specialist' refused to try anything else, and I became so desperate I ordered Tiromel (Turkish Cytomel, much weaker) from the internet and started taking a v small dose (6.5 mcg's twice a day)together with 125 mcg's T4. [Ed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 , You say you have found out how to take thyroid hormones. Â Â I am wondering where you have found this out. Â It sounds like you have access to some medical research so could you please tell us where we can find out this information for ourselves. We can then decide whether it is good advice or not. Â Â In fact nobody here is qualified enough to give advice, as our disclaimer says. Lilian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 , please be aware that none of us here are medically qualified and what might sound like advice should be taken as suggestions only. Lilian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 Oh yes, I know Lilian, absolutely! > > , please be aware that none of us here are medically qualified and what might sound like advice should be taken as suggestions only. > > Lilian > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 I have found out from my own experiences using thyroid meds. It is pretty comprehensive. > > , > > > You say you have found out how to take thyroid hormones. I am wondering > where you have found this out. [Ed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2011 Report Share Posted November 28, 2011 Hi Sheila, I did post my latest blood result in early Nov and you very kindly replied. I'm due another blood test next week, but only for the ferritin and iron sat % (it's for the HH not the Hashi this time), I'm hoping my ferritin is higher than last time (42) as I've left more time between phlebs. Here's what I posted: I wonder if anyone could help me some blood results? GP sent me off for vit and min tests which endo had refused to do and as of 4th Oct they were as follows: Natrium/sodium = 140 (135-145) Potassium = 4.70 (3.8 – 5.0) Calcium = 2.30 (2.15 – 2.55) Magnesium = 0.76 (0.7 – 1.0) Vit B12 = 370 (150 – 800) Folic Acid = >45.3 (7) Vit D (250H) = 102 (50) Zink = 16.37 (8.4 – 24.4) Copper = 20.4 (12.5 - 24.3) Ferritin = 42 Iron Sat % = 15 I know my ferritin and iron sat is too low, so am leaving more time between phlebotomies, which should bring it up pretty quickly as I'm a fast loader. The norms (as seen in the Netherlands) are in brackets, but I have to say I don't understand the 'norms' in the Folic acid and Vit D results. Other than that I would say I look a bit low in magnesium and B12, assuming I should be at top of the range, but can anyone advise me on this? I have been taking a vit B12 supplement and an (iron free) multi vit for months now, as well as a Vit D3 and calcium supplement. I'm now also taking extra magnesium and zinc. Just wondering if anyone had any words of wisdom? Thanks so much for reading. > > Sounds like low adrenal reserve . Do the Adrenal Questionnaire in our > FILES SECTION on this forum, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2011 Report Share Posted November 28, 2011 Hi I take it that the protocol you are recommending is 's protocol that he writes about in his Book which is about to be published. We have requested that this protocol is not discussed either on the forum or privately until after the publication date, because without the precise information to hand, we have nothing to refer to. We do not know the precise details about this protocol yet, and therefore, please will you wait for the publication of the 'new' book (which has been changed a lot since did the first draft), before discussing this either on the forum or privately. I would remind members that none of us are medically qualified apart from our medical advisers, so should not be taking 'advice' from other members about their treatment protocol without first having consulted with their medical practitioner before changing treatment. Luv - Sheila Now focus on taking the T3 at a specific time. If we wake up at 8am, the adrenals will have been making the cortisol about 4h's prior to this wake up time. So give your body some T3 at the start of this process. This means waking up at 4am to take a dose of T3. Stick with your current doses, but move them to 4am/10am/3pm. We cant talk about dosing here, so if you want to email me about more specific stuff i will help you out. ,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2011 Report Share Posted November 28, 2011 Thats fine sheila, but it is much more than pauls protocol. I have found out that taking T4 at night is much more effective for instance. I have been on T4 only, T3 only, armour, and T4/T3 plus Hc so i know how these protocols work or why they wont work in certain situations. All this information is on this site, but it is just not very accessible. I take T4 and T3 and the two are needed. The way we take them is the key (timings and quantities). If my experiences dont tally with your own or the moderators then you are starting to act like the BTA is currently doing. I dont post that often, but if i see someone struggling then i feel i should help. I would have appreciated it yrs ago. > > Hi > > I take it that the protocol you are recommending is 's protocol that he writes about in his Book which is about to be published. We have requested [Ed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 Hi , we are all different, and each of us has to find our own particular treatment protocol that suits our body best. However, you are wrong when you say that both T4 and T3 are needed by everybody. Many people are doing very well on T3 only and have no need of extra T4 at all, and is one example of this. The brain needs a little bit of T4, and for those who still have a thyroid, they can get that from the thyroid gland. For those without a thyroid, then they may well need the addition of a small amount of levothyroxine i.e. 25mcgs, but there are still high numbers of folk who survive very well on T3 only. We never make such bold statements telling our members that they need both - because this is actually wrong. This is like telling them that one size show fits all - and we know it doesn't. Your personal experiences are not supposed to tally with mine or the moderators, or anybody else for that matter - why would they? and why would you conclude that if your experiences were different to ours, that makes us no different to the BTA and what they are currently doing? That's a very strange thing to say. Don't you know that TPA is a million miles away from what the BTA and it is the BTA diagnosing and treatment protocol that we are campaigning against - so think again - you should know better after being a member here for years. Perhaps you need to be more specific. This whole forum was set up to help those struggling, and I spend the whole of my days pretty much trying to help where I can and so do others - and , when you say that you would have appreciated help years ago, I hope you are referring to the time before you found TPA because you got a tremendous amount of help when you joined us and became a patient of Dr Peatfield's. You would also get help again if ever you needed it here. Perhaps I am being a little super-sensitive here, but what you have written is probably coming over in a way that you did not intend. Incidentally, you may not be aware of it, but there was a study done that is in our links showing that taking levothyroxine when you go to bed helps with a good nights sleep and makes you feel better on waking. This is not a new thing. It was , I believe on the US About.com/thyroid forum who found this out about 5 years ago and a study was arranged to test her theory. We often post about this on the forum here and recommend our members try taking their thyroxine at night. Sheila Thats fine sheila, but it is much more than pauls protocol. I have found out that taking T4 at night is much more effective for instance. I have been on T4 only, T3 only, armour, and T4/T3 plus Hc so i know how these protocols work or why they wont work in certain situations. All this information is on this site, but it is just not very accessible. I take T4 and T3 and the two are needed. The way we take them is the key (timings and quantities). If my experiences dont tally with your own or the moderators then you are starting to act like the BTA is currently doing. I dont post that often, but if i see someone struggling then i feel i should help. I would have appreciated it yrs ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 Hi I totally agree with Sheila. I cannot tolerate ANY T3. I almost died on T4 only therapy and having tried T4/T3, this made no difference to me - I remained near death. It was only when I increased my T3 and the T4 was completely out of my system did I start to feel near human again. 's protocol of taking T3 in the early hours (between 4 and 4.30am) also made a world of difference. It is obvious, in my case, that the amount of T4 my thyroid produces is more than enough for me and adding extra T4 in my case would be pure folly.It was through the members of TPA and all the scientific evidence provided, as well as Sheila, and Nick of the T3 group's constant care and invaluable advice, that I am finally feeling 70% better, and slowly getting better and better!Jacquie > If my experiences dont tally with your own or the moderators then you are starting to act like the BTA is currently doing. I dont post that often, but if i see someone struggling then i feel i should help. I would have appreciated it yrs ago.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 I agree with you completely, . It sounds like the NHS is in charge here, not people who are giving correct and helpful advice. More and more I see problems with incorrect information being given out and although I try to correct this as much as possible, I'm not around that much to do so. Things move forward, protocols change and new information comes on board which needs to be updated and addressed. This is part of healing and a part of the need for medical updates and research. We need to move forward, not stay in the old familiar territory, regardless of who approves of the info or not. I think many of us who help with thyroid, and nutrition wish only to help those who are suffering. It is why we are so often called upon off forum to help. Why put someone down the wrong path when the right path will do the trick? Why delay the suffering if you can help? Cheers, JOT > If my experiences dont tally with your own or the moderators then you are starting to act like the BTA is currently doing. I dont post that often, but if i see someone struggling then i feel i should help. I would have appreciated it yrs ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 , The maximum dosage of T3 according to the british national formulary is 60 mcg a day in a split dose.... so you have room to manouvre. However, your problem could be adrenals as T3 will tax them. Why don't you take your temperature three times a day as per www.drrind.com and then plot the averages on a chart? If the temps are low but steady then it's thyroid, if they are erratic then it's most likely adrenals... Also, if you aren't sure about the dose that you are taking, what would your doctor do? Ideally he would order a blood test to see where you were with it... so.... why don't you have a free t3 blood test.... you can go privately to Genova, or one of the others........ x > > > > , please be aware that none of us here are medically qualified and what might sound like advice should be taken as suggestions only. > > > > Lilian > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2011 Report Share Posted November 30, 2011 Yes, I remember now , trouble is, so many of our members post their results I cannot remember who has and who has not, so I play safe, and if I am unsure, ask for them again. Hope this time the ferritin is much higher (but not too high in your case) and that the iron saturation% is OK. I guess we will have to wait a couple of weeks or so before you can get them. How are you feeling now by the way ? Luv - Sheila I did post my latest blood result in early Nov and you very kindly replied. I'm due another blood test next week, but only for the ferritin and iron sat % (it's for the HH not the Hashi this time), I'm hoping my ferritin is higher than last time (42) as I've left more time between phlebs. _,___ Quote Link to comment Share on other sites More sharing options...
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