hi I wondered if anyone is on liothyronine only and tried to reintroduce levothyroxine and it made them feel really ill

[poppppy]

I was diagnosed hashimotos hypothyroid about 4 years ago and was put on levothyroxine over the years it was increased to 100 mcg . I did not feel 100% so from this site I read that some people don't convert t4 to t3 very well . so on the off chance I had my t3 tested and it was subnormal .so I began with the help of my gp liothyronine and thyroxine . I got paul Robinsons book on t3 only and eventually about 6 months ago stopped levothyroxine . I began slowly to feel better than in years .my t3 was in range also. I began exercising not too much but I felt good most of the time though found it hard to wind down at night , I was on 60 to 80 a day . because my gp knew little about treatment with liothyronine I ended up seeing an esteemed endo consultant who took my bloods and when he got my results ;

tsh less than 0.1 which I expected thanx to this site

t4 less than 1 which again from this site and from pauls book I expected

t3 15.4 which as the consultant said was double the top of range

he advised in a letter to lower t3 to 20 bd from my 60 to 80

but he wanted me to reintroduce levothyroxine 100 mcg also

because I did not want to alienate him and because he is an expert I did this . within 9 days I felt really ill . legs wobbly ,feeling faint , aching thighs , uncoordinated . fortunately I was on 3 days off because in work I had to kneel down as I could not stand . I rang the consultant s secretary and my gp and the secretary spoke to the consultant who said it was ok to stop the levothyroxine which I gladly did . but 12 days later I am still ill . headaches , aching thighs , wobbly legs , slight cognitive problems , feeling faint and nauseous . I sleep most of the day on some days . no way I have energy to walk far . I thought it would have wore off by now . can anyone tell me if tis is normal to take this long to wear off. or is it because 40 liothyronine is not enough for me . am I feeling ill because the levo interfered with lio absorption which I think I read in pauls book . I have been given a blood form by my gp but he said don't have my bloods done for another week . but I thought coz lio is fast acting then any changes would show by now . I also wonder whether my levels were high when I saw the consultant because I had taken query 40 lio that morning and it was about 3 hours after when the blood or maybe two . sorry I was not recording things well enough . I hope someone can help and thankyou ,as you have reached this point in my rant, for your time and consideration in reading this

caz

[PinkNinja]

Your blood tests were the way they were because of taking your T3 before the test. You really need to not do that for the next test.

I suspect the main reason you are feeling so ill is the sudden reduction in T3. When you get your results make it clear that you feel awful and see if you can increase by another 20mcg T3 and reduce your thyroxine. Some people just don't get on with thyroxine at all. Some can add in small amounts. In some cases it just needs to be reintroduced slowly.

Sorry I wasn't able to really help but I hope you get it sorted out.

Carolyn x

[poppppy in reply to PinkNinja]

you did help by suggesting i don't take t3 before the next blood test . i have stopped the thyroxine and have told the endo via his secretary and he was ok with that . i had taken it 9 days with the reduced dose of t3. is it bad for my heart if my t3 levels go that high at times though . would it be better if i took t3 in smaller more frequent doses so there are less peaks? i have started having 10 mcg every 3 and 1/2 hours . 10 at 630 am , 10 at 10 am ,10 at 315 p.m and 10 at 430pm . i thought if i stop earlier i would sleep better . i was also hoping if i had my bloods done on no liothyronine or 2 hours after 10 mccg and they were in the low end of range the endo would say i could increase to 60 like you say and then we would both be happy . it seems strange to me that other consultants in other specialities want to see you sooner and bring your appointment forward when you have abnormal bloods but mine just sent my gp a letter and myself to try this dramatic change . then when i tried it and felt really unwell he still has not asked to see me or for my bloods to be taken now i am on a lower dose of t3 to see if i am under dosed now . its disheartening but i feel lucky to have found an endo who approves of t3 as the first endo i saw took me off it spouting government guidelines and did not want to follow me up after one visit .

[shaws Administrator]

These are two excerpts re T3 -

web.archive.org/web/2010103...

go to date November 9, 2005:-

1.

Dr. Lowe: The improvements you describe are typical of what we hear from patients using high-enough doses of Cytomel. Because of your improvements, and because your symptoms of possible overstimulation are occasional, taking you completely off Cytomel seems to me radically improper.

For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

2. Most endocrinologists subscribe to the practice guidelines of the American Association of Clinical Endocrinologists. When a patient such as you sees one of these endocrinologists, he’s likely to take her off T3 and switch her to T4-replacement. As many patients have told us, when an endocrinologist switched them to T4-replacement, they became ill and dysfunctional again. These reports are consistent with studies that show the ineffectiveness and potential harm of T4-replacement. The studies show that T4-replacement leaves many patients suffering chronically from hypothyroid symptoms[1][2][3][4][5][6][7] and gaining weight they can't lose through dieting and exercise.[8] The patients are also likely to use more drugs and develop one or more of several potentially-fatal diseases.[9]

[poppppy in reply to shaws]

thankyou for your swift reply . I tried to access the ink but it says it cannot be found but will try other routes . I did try copy and paste . could I ask you how do you test your metabolic rate so I can convince the endo that I need a higher t3 perhaps by showing him my metabolic rate is low . also do you suggest I take no t3 before my next blood test as iwould have usually taken 20 or 40 before it or is that just cheating myself . I have changed my tablets to 10 every 3 and 1/2 hours of t3 . I was on 60 to 80 of lio only when I had bloods done with the endo. thankyou again you are all so helpful

[shaws Administrator in reply to poppppy]

Always take your blood test before you have any medication. If you take meds beforehand it skews your test.

You should be able to access the link now, as I hadn't separated it from other words.

I don't test my metabolic rate, if you feel well the meds are working for you.

[Hennerton]

I am in much the same position as you are, having just a week ago started to introduce T4 to my T3 only. Had been on it since Feb via Paul's book and a somewhat reluctant Dr S, who would prefer me to be on NDT. (have tried it but cannot tolerate it). I felt jittery at 60 mcg and reluctant to go higher, so wondered if it was time to change to the combo. I have had no recent blood tests, as fear what my GP would say at the T3 result but I am therefore working blind as it were and just hoping to manage it myself. I started by taking a week of 25 T4 and I reduced my T3 to 45 but then had a day of a high temperature, so dropped to 40 mcg. Today I increased to 50 T4 and kept on the 40 T3. Have felt OK but a bit achey this afternoon, which is always my symptom of things not right. I think I shall try and stick it for another week but tend to change my mind drastically if things appear to be going wrong. My BP is very low on T3 but better with the addition of T4. My temps are low as usual. Have never managed to get those nice normal temps we all want from reading Paul's book! My feeling is that the endo made you do it too quickly. However esteemed they are, they never seem to understand the potency and contrariness of these hormones and how even small changes can be drastic. I suspect also your body is missing the instant lift of T 3 in what was probably the right dose for you, between 60 to 80. Can you just go back to T3 only since you did so well on it? I didn't ever feel perfect, hence my decision to try the combo but I would never have changed if I had been well on it all the time and I still may return to it if things do not work with my new doses. I do hope you get the right help soon. xx

[poppppy in reply to Hennerton]

thankyou for your reply . I hope your new combo does make you feel better . so sorry that your bp and temperature did not improve on just t3 . i think you are right about the endo making me do it too quickly . i developed a cold and cough soon after starting levothyroxine again and started itching after 9 days . no hives or rash just itching for 30 minutes at a time . i never want to go on it again to be honest as i need to keep my job and could not go in in the end . i hope to go back this week but being off work will affect my record and has implications . i did feel hyped up on t3 at times and often could nt sleep but i could function normally and forgot i was ill at times . woop woop so so sad now . i hope u achieve what i achieved . that well feeling . if you start to feel bad on levo and lio combination get back in touch and i will tell you how i am now off it again and hopefully by then i will be able to give u good news that i feel well again and that u can too

[Hennerton in reply to poppppy]

Thanks, will keep in touch. Yesterday was not a very good day, so I may be joining you again soon! x

[Hennerton in reply to poppppy]

PS Have you tried T3 at bedtime? Take dose and immediately turn off the light. It is one of the reasons I love it. Makes me sleep better than ever before and I am still keeping to that routine on combo.

[Jackie]

Hi When I was too ill to remember I took 10mcg T3 before my test. It was exactly double normal. I nevver normally take T3 or Armour or Beta blockers before a test as false result. Did you introduce the T3 very slowly, ie max 10mcg daily or even every other day, then gradually after a week or 2 go up to the script ( split in half, over 12 hours retest TSh, T4 and FT3, 6 weeks after the prescribed dose.?Also did you go on T3 when test for FT3 showed below range? Not sure if you do but you need to always have blood results + ranges ( differ) to keep, receptionist GP or Sec consultant, your blood ,your right.I hope that you have also had the other relevant tests, if under an Endo, they should have been done, first visit.

Best wishes,

Jackie

[T3sortedme]

Just a reminder that the body cycles take a long time to adjust to change. Other cycles have to adjust to the changed regime. I keep things consistent and wait at least a month or two before I make another adjustment. Your body has had a real shock change from a nicely settled rhythm based on T3. Suddenly T3 disappeared and new T4 appeared. T4 stays in the body a long time and, if you have t4 conversion problems, you will have reverse T3 to clear from the system. If I had the choice I would go straight back to what worked before and give it a month while things settle down. Don't read too much into day to day changes (colds, exercise, emotion, stress, adrenaline all cause short term changes). I chased children playing tig at church for 45 mins the other day as I was feeling energetic and it took me out for 5 days (4 of then on the couch)!