Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 JUST to emphasise this titration method is likely to be the equivalent of taking 25 mcg of T3 and then NOTHING for the rest of the day. For you even the 25 mcg may not be enough to create a wave that does anything. So, I'd re-focus on 3 doses of T3 and begin by bringing the 3 doses up to 20 or 25 micrograms each to begin with. Then focus on the first T3 dose and raise it until you begin to get symptomatic improvements. I need to go and read the data you've posted. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 What - stopping the dose one day - what does that mean?????? Yes your temps are awful. Don't know what you mean by stopping the dose one day. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 IRON 20.0 umol/L 10.6 - 28.3 T.I.B.C 62 umol/L 41 - 77 TRANSFERRIN SATURATION 32 % 20 - 55 FERRITIN 31 ug/L 30 - 400 Tranferrin Saturation % needs to be in the 35-45% region to be confident that there is sufficient cellular iron levels. It provides an indication of how much free iron is being carried by transferrin. Ferritin is TOO LOW and yes you do need to be on iron meds. A lot of them. This can interfere with thyroid hormone within the cells - BIG TIME. You need to be on ferrous gluconate or ferrous fumerate in high amounts to correct this. This could easily be your issue and it may take months to resolve. This presents an issue because the T3 dosing schedule you are on is also rubbish. ENDOCRINOLOGY THYROID PROFILE 2 TOTAL THYROXINE(T4) 118 nmol/L 59 - 154 THYROID STIMULATING HORMONE 2.00 mIU/L 0.27 - 4.2 FREE THYROXINE 20.0 pmol/l 12.0 - 22.0 FREE T3 5.0 pmol/L 3.1 - 6.8 How can free thyroxine be 20 if you aren't taking any and you are on 87mcg T3. The T3 isn't actually being absorbed or the T3 you are taking is fake. The TSH and FT4 would suggest that the T3 you are taking is actually not even reaching any of your tissues in a way that it can actually affect anything. TSH should be zero or as close as and FT4/total T4 should be nearly zero or extremely low. Do you have a digestive absorption issue or some other health issue that could affect absorption of T3????????? Do you trust your T3 supplier????? Suggest switching supplier if you can't explain this. I can understand the symptoms not responding but the pituitary almost always responds - yours hasn't. IS THIS WHEN ON 87 mch T3 or before the T3??? If the T3 is genuine and the results are on T3 then I'd say you were beginning to look like a classic truly thyroid RESISTANT patient OR it really is due to low IRON If RESISTANCE In this case you may want to contact Lowe in the USA directly as I believe he still does some consultancy. If this is true then 12.5 mcg T3 doses in 'p**** in the w**d'. You'd be better off with two LARGE T3 doses per day to begin. Then focus on making the first one even bigger until you get a result. You need to be working with someone who is used to dealing with true cellular resistance. If IRON Get decent supplementation levels in place ASAP. This can take 9 months to resolve. In this case driving up the T3 too soon would be BAD. I'd still go to 2 or 3 bigger doses and hold it for a while until the entire iron panel looked better. THIS SHOULD HAVE BEEN TREATED!!!!! > > H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 WERE the full thyroid profile results before or after being on T3?????????????? NOT SURE FROM YOUR POST. IF BEFORE THEN SCRAP THE DEFINITE CONCLUSION OF RESISTANCE OR DODGY MEDS. IF AFTER THEN KEEP IT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi , Sorry that was in reply to something suggested about reducing my dose. It is now irrelevant as I have read your other posts, which I will respond to now. Mark > > Don't know what you mean by stopping the dose one day. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi , They were from BEFORE starting T3 but while on about 30mcg of HC. Mark > > WERE the full thyroid profile results before or after being on T3?????????????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 if copper is low, could that affect whether Mark can get the ferritin higher? (my copper was low and my feritin was low too) chris > > IRON 20.0 umol/L 10.6 - 28.3 > T.I.B.C 62 umol/L 41 - 77 > TRANSFERRIN SATURATION 32 % 20 - 55 > FERRITIN 31 ug/L 30 - 400 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi Mark, So please confirm whether the thyroid panel was on T3 and what T3 dose. You're on iron now - which is good - expect it to take 6 months or more to get sorted. Low iron could be the problem or simply a result of low thyroid levels - what is the chicken and what is the egg? The tiny response to T3 is encouraging at least. If I were you I'd quit all forms of adrenal supplements because I don't believe the adrenals are a root cause issue and if your're on them it is not clear if they are helping or hindering. There are ways of using T3 as I have described to correct cortisol if this is needed. You won't even know it is needed whilst you are on adrenal meds. Regardless of your answers to my most recent questions you still need to be using 3 bigger T3 doses and then focus on raising the first one to see if you can experience any real improvement. This needs to be done slowly and carefully - with attention to BP, temp, heart rate. If you do down this route then you can email me with specific questions as you go along. Cheers, > > Hi , > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi , Posts coming in thick and fast - thanks! What you say on dosing and the need to create waves makes so much sense! The dosing schedule I gave to is only a recent example since I read that T3 needs to be split up during the day. However I see you are saying " almost " the opposite - that they need to be relatively concentrated and focused in the morning. When I was on 75mcg I was taking it as 25, 25, 25. That did nothing. NOW! The first day I started on 87.5mcg I dosed 25,32.5,25 and I have to say that on that day, a few hours after the 32.5 dose, I THOUGHT I noticed an improvement in energy. So let me conclude that I think it is safe to assume that doses of 25mcg don't do anything, but 32.5mcg might well be doing something, so for the next few days I will cut my current dose (87.5mcg) down to 75mcg and dose as 32.5mcg early morning (say 6-ish) then another 32.5mcg say at lunch. There's no point in an extra 12.5mcg. I see what you're saying - focus on that first dose to find the level needed and forget about anything smaller. This idea of yours is great. I always wondered why people say split your dose up when Lowe says he takes his 100mcg all in one go! Cheers! Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi , I think replies are being lost in the maze of posts. I am responding to your queries one by one rather than in one big reply. My thyroid panel was BEFORE starting T3. Thanks for allowing me to email you, but I think I have the gist now (see my other reply which should appear before this one if it is not lost in cyberspace). Mark > > > > Hi , > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 OK - Thank goodness - you've now turned form a nightmare case to a mildly difficult case. You need a new thyroid panel - just to be confident that the T3 is actually absorbing and the pituitary can see it. This confirms what we think. Chris's point is good about copper - get this checked also. The iron will take bloody months to resolve and may then need a maintenance dose. It could be low due to the low thyroid hormones though and so the maintenance dose may not need to be that high if the thyroid hormones are sorted. Really don't think adrenal hormones are a smart idea - get in the way of sorting this out. THREE BIG T3 doses of 25 to begin with would be what people with your sort of issue might be using: 7:00 am, 11:00 am and 5:00 am might be typical for people like you. With impaired cellular response to thyroid hormone the next step would be the most important. Slowly and carefully people like you might increase the first T3 dose by 5 mcg every few days until symptoms and signs began to improve. When improvement was detected then the interval between changes would increase to perhaps a week to two weeks and the change might drop to 2.5 mcg when the first dose appeared to result in something a little more acceptable. Attention would then switch to the second T3 dose, only taking this once the first T3 dose had definitely run out of gas i.e. adjust the time of the second dose and then begin to increase it. This is an iterative process. Use symptoms and signs and record them each day in a log with T3 dosage recorded in detail with times and levels. Is this OK ? Questions? I think you'll sort this out - seen problems like this resolved on a large number of occasions. Just use the T3 properly. Sort the iron out and get the copper tested like suggested. Also please do take a strong B complex (50 mg of each of the main Bs twice a day with meals, vitamin C in 500 mg doses multiple times a day - say 4 or 5, a multi-mineral to cover all the remaining bases). If this begins to help then a twenty-four hour urinary cortisol is in order to assess real adrenal status (but do suggest you get off the adrenal meds - you probably don't need them). Take care and thanks for being such an interesting problem! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 This is a very real issue . If all our blood tests show that our pituitary, hypothalamus, thyroid glands are functioning fine and secreting the hormones at the levels they should, yet we are suffering with peripheral thyroid hormone deficiencies etc., just what ARE the tests doctors can do to find this out. There must be something that we can point them to, to help with this, otherwise, this is going to continue to be missed, and denied even, that such a condition actually exists. Luv - Sheila Not only do I totally believe this last statement based on what I know but years ago I went through some of the same quests for information as you are doing in the hope that I could just 'find the answer' and 'unravel the solution' - you won't be able to do this. All the good stuff happens within the cells and we can't measure any of the really interesting things. We can identify based on medical research all the various things that can go wrong but this only gives background info - it doesn't help resolve anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 I had thyroxine and TSH tested after being on 12.5mcg of T3 for 1 week and my TSH had come down: THYROID STIMULATING HORMONE 0.97 mIU/L 0.27 - 4.2 FREE THYROXINE 17.1 pmol/l 12.0 - 22.0 so I think the pituitary is responding. I heed all of your other advice and am already on half the dose of B's you suggest but will up it. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi Sheila or anybody who can remember -I did a post a while ago to find out the highest dose of T3 anybody was taking -the largest was a member from Florida who if I remember correctly was 300T3 which was a lot bigger than anyone else - her doctor did a test which showed she was not hyper [how much enters the cells ] Do we have that test in the UK? If not why not ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 There aren't any at the moment Sheila. It needs researchers to make some massive breakthrough. It can only be done currently by careful assessment of symptoms and signs and having ruled out all other causes you are left with the only remaining possibility - hypothyroidism at the tissue level. As I refer to it 'impaired cellular response to thyroid hormone' As Mark Starr calls it 'Type 2 Hypothyroidism' As Lowe calls it 'Peripheral Tissue Resistance' - it is all the same thing and at the present time it is virtually undetectable by any laboratory test. The exception to this is if you know exactly what the particular underlying cause is and then can persuade a research lab to test for it - NOT MUCH OF A CHANCE OF THAT. So, we wait for a breakthrough and we hope that the doctors and endos learn that by being a lot smarter they can actually figure out that it is occurring and then treat people. Look, I'm not a doctor but I've now worked with loads of people and got them from near invalidity in some cases to complete recovery - sometimes after having been ill for 10-20 years. So, it can be done but it requires far more subtlety and a lot of close 1-1 time. So, it may require specialist centres in the interim until a breakthrough in research allows proper diagnosis and some tests that can help the titration of thyroid meds (since TSH, FT3 and FT4 are near useless in this case). Happy days eh? Cheers, > > This is a very real issue . If all our blood tests show that our Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Let me be clear, There is no one answer for everyone!!!!!!!!! In general people do better on 3-5 divided doses of T3 - in order to keep the peak levels down. In your case you clearly can't do much with the smaller doses. So, if I was someone like you then I'd simplify things and try larger doses. Horses for courses - no one solution. > > Hi , > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Hi Mark, Good. The iron is clearly a problem. In terms of the T3, someone like you with a clear almost non existent response to T3 should have everything else evaluated first to exclude all possibilities prior to dropping down from 3-5 doses and aiming for two or even one really much bigger ones. Anyone who is soldiering on with 12.5 mcg doses with no response should have their head examined because these are tiny doses for most people. I spoke to someone only last week who takes 80mcg in the morning and 60 around tea time. A lot of folks I've talked to take totals of up to 200 mcg and I know people exist on a lot more than this. Many do fine on a lot less T3, including me. Being safe, being thorough is critical before increasing as you may decide to do. It is essential to have the understanding of how T3 works and what the problems can be though - in order to be able to work out what may be the issues. This is why so many GPs and endos struggle to use it right. They have parked their brains a long time ago and come to rely on laboratory testing to tell them what to do. Please post back when you start to improve, which I am reasonably confident you will. > > Hi , > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 I don't believe a lab test exists other than the BMR. You can test this to a certain extent by doing biopsy but not through blood or urine. Anyway, entering the cells is no measure. You need to know: 1. Do the nuclear thyroid receptors have enough T3? AND 2. Do the mitochondrial receptors have enough T3? AND 3. Has the resultant chemical processing resulted in correct regulation of cell function? Even after binding to the thyroid receptors in 1 and 2 problems can still occur. So, this is extraordinarily hard to test for. The old fashioned BMR was ideal because it showed out real basal metabolic rate - a real, unequivocal measure of how our metabolisms were being regulated. So, I don't know what tests the doc that you referred to did but they cannot be anyway close to definitive. It really does not exist - honestly!!!!! 300 is at the high end of my experience with people also. But there has been at least one case of someone needed 500 mcg - with no symptoms of excess. > > Hi Sheila or anybody who can remember -I did a post a while ago to find out the Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Mark, As you get into this your questions will be less general. These will be better handled by email so feel free to do so. To repeat one more time - most people do well on 3-5 doses per day of T3. Very few do great on doses as small as 12.5 but I'm sure a few do. Only when the response has been poor, everything else has been excluded should doses in the neighbourhood of 30 -100 mcg per day be investigated and then it is common to drop down to only a couple of doses to day to minimise the total T3. Increasing one dose first before the other is also common - to work out how much T3 is required to begin to see improvements. Once this has been established it is common to then titrate the size of the second dose and adjust its timing to only take it when the first dose 'begins to run out'. Cheers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Hi Sheila , -the message referring to a test was63306 and your reply was 63327 .I'm not sure how good this test is but in many things we are well behind the States . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Hi Sheila, The test that Myhill has used, developed by McClaren-? is the nearest to finding out the energy available from the mitochondria (as ATP and ADP/ATP ratio), it's the best we've got so far beyond the BMR. Bob > > This is a very real issue . If all our blood tests show that our pituitary, hypothalamus, thyroid glands are functioning fine and secreting the hormones at the levels they should, yet we are suffering with peripheral thyroid hormone deficiencies etc., just what ARE the tests doctors can do to find this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Hi , so long as one sticks to a particular subject heading and doesn't go off posting about the same topic elsewhere under another heading, other replies on the topic are easy to follow, e.g. to follow all the responses in this particular topic, go here thyroid treatment/message/87119 where you can read the original message, and underneath, read also all other 39 responses. Luv - Sheila I've posted a bunch of other replies - good luck finding them - these threads are hard to follow. Please post your iron results - these can be significant regardless of who tells you they aren't. Check all the other replies and then provide the info in a single message if you can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Hi What are you thoughts about this - see message No. Message #63327 of 87329 - and read all the messages there (subject " T3 dose " ). The test in question is SHBG. http://www.diagnose-me.com/treat/T248809.html Luv - Sheila Hi Sheila or anybody who can remember -I did a post a while ago to find out the highest dose of T3 anybody was taking -the largest was a member from Florida who if I remember correctly was 300T3 which was a lot bigger than anyone else - her doctor did a test which showed she was not hyper [how much enters the cells ] Do we have that test in the UK? If not why not ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Do you know what the test is called Bob? Luv - Sheila Hi Sheila, The test that Myhill has used, developed by McClaren-? is the nearest to finding out the energy available from the mitochondria (as ATP and ADP/ATP ratio), it's the best we've got so far beyond the BMR. Bob > > This is a very real issue . If all our blood tests show that our pituitary, hypothalamus, thyroid glands are functioning fine and secreting the hormones at the levels they should, yet we are suffering with peripheral thyroid hormone deficiencies etc., just what ARE the tests doctors can do to find this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Hi Sheila, No its rubbish - no correlation between high SHBG and T3 thyrotoxicity. Been there and done that. Yes, I've heard this view even from Colin Dayan. SHBG is produced by the liver and if this is high then supposedly the liver thinks the thyroid hormone is too high. It isn't true. From practical experience I know it isn't true and I have heard this from others also. Apart from the fact that I know of at least two people who one would assume are hyper based on this test and aren't there are other things against it. Partial peripheral resistance may mean that different tissues have different levels of resistance. What if the liver is less resistant than many other tissues - the test then fails. There have been no real scientific studies on people who take T3 only who have the T3 perfectly titrated so that their BMR is ideal and they have no symptoms of over-stimulation of thyroid hormone. These studies have never been done - so how can the endocrinologists expect to pull a rabbit out of the hat and say if SHBG is high then the patient must be hyper - total BS I'm afraid. As soon as I went on thyroid hormone my SHBG was high. It was high for a few years when I was on T3 also. I did have some issues that might be associated with high SHBG at the time, which I'm not going to discuss here. I got these sorted by taking a low dose of another drug to cut the SHBG in half. AT NO TIME DID I HAVE ANY HYPER SYMPTOMS. I was not thyrotoxic and I was only taking between 35 and 45 mcg of T3 then!!!!! When my autoantibodies began to lower I realised that I no longer needed the drug to reduce the SHBG and I haven't used it for 6 or 7 years and have no issues no. I haven't had SHBG re-measured at all but it could still be high. You could discount my data. But I don't. There is a total lack of decent research using populations of perfectly titrated T3 patients. The data doesn't exist. I've seen this mentioned a ton of times and yet again the endos are trying to find a laboratory test that they think can make their lives simple - and yet again it just doesn't work. Cheers, > > Hi > > > > What are you thoughts about this - see message No. Message #63327 of 87329 - > an Quote Link to comment Share on other sites More sharing options...
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