An update....on T3 since xmas and have now run out of time

An update....on T3 since xmas and have now run out of time

Hi Guys

I was hoping id have some good news for you in this blog but alas i dont.

I started taking T3 under Dr P's care just after xmas (after the saga of it actually getting here!) . Dr P's prescription was to reduce my t4 to 50mcg and commence 25mcg Cynomel in 2 doses......I however had other thoughts...i had read 'Recovering using t3' from cover to cover and decided that the CT3M method was the one to get me back to good health and work in the quickest time and would help my adrenals to heal too.

So thats what i did....stopped my t4 to clear my rt3, stopped adrenal glandular support and divided my doses into 3, then 4. The first time i took t3 i noticed a distinct difference and i remember smiling to myself...this was it...this is what ive been fighting for and look....its going to work just like i told the GP's and Endos it would.

The first week was ok, my vitals were normal, no side effects...great, increased the first dose and so on til i got to the end of the second week. Started to feel quite hypo....tired, cold, jittery, my bp, pulse and temp all dropped. I assumed an increase was required but made a telephone appointment with Dr P to check first.......Oh dear....Am i the first person who has made Dr P hold his head in his hands and look to the sky!! The conversation was uncomfortable for me as i battled with my ever failing memory to justify my actions. "So...why exactly have you stopped t4, adrenal support and not followed my plan?" eeeeekkkkk!!!!

I had to fess up to being in a great haste to feel better for work...i had a final review looming...time and sick pay has run out! But forever the gent...he forgave me...and sent me right back to the beginning....my adrenals are giving up the ghost and aren't supporting my thyroid meds......Oh No!

Its been 3 weeks now...im on 50mcg t4 and now on 38 mcg t3...and on increased adrenal support but i dont feel any better. Im tired all day particulary in the morning, my joints remain sore, my vitals are all over the place....my systolic bp is low 115/72 (in the mornings), basal temp 36.5 , pulse increases in the evenings and i feel slightly jittery. My hair and nails feel drier too. Ive to send my diaries in next friday. The other thing i've noticed is how appalling my memory is...i thought feeding my brain some t3 would of improved things but its worse than ever and im now worrying something else is causing it. :(

Im supposed to be returning to work first week of March but how can i? How can i not? What a mess....im no where near good health yet. I cant even draw and paint, my low confidence wont allow me to put paint to paper...im good for nothing and absolutely sick and tired of feeling sick and tired as you guys are too...So im sorry, no good news yet. Any advice gratefully received as ever

Hugs

Karen x

27 Replies

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  • have you been checked for pernicious anaemia?

    it just sounds like me before I got fixed with weekly b12 injections that's why I was asking....'appalling memory, fatigue worse etc etc'.

    it's a long hard road, but I do wonder here: in your blog it sounds like you were doing better on your plan (ie T3 only and CT3M), were you? or is that just the way I am reading it?

    I'm not trying to make you go against your doctor, I am just 'reflecting' xx

  • Hi NBD thank you,

    The first week of the ct3m I felt ok...a bit brighter but No better no worse, then gradually felt worse as dose increased and has been the same as taking the t3 twice a day. I haven't had b12 or ferritin rechecked since last may. I have been taking 1000 ....you see here.... I can't remember the dosage is in mg or mcg ,name of the type of b12 I'm taking, what tests I'd need what my previous levels were. I'm off to London today and guess where the outfit I was going to wear are? Still in the washing machine wet.... I forgot to put them on the radiator to dry overnight! I will ask for my levels to be rechecked though....but if I tell my GP ... She won't give me a 'fit to return' note.....because I'm not really am I? What a mess x

  • Hi there....

    Have you tried asking for help over on the T3CM Yahoo group?

    Dawn Voltz who is the moderator is extremely helpful, and although I don't use the T3CM method as I am not a candidate, I do read the posts on their Yahoo site.

    Many of the people who try out this method have to tweak & re tweak - especially the early CM a.m dose of T3. I have read though many success stories using this method, especially for regaining adrenal function as Paul did.

    Is tricky as you are under Dr P care, but if it were me, I would at least ask the T3CM group for some advice, you don't have to follow it...... but at least their suggestions might shine a light for you.

    best wishes

    JLTsirius

  • I am sorry things haven't worked out for you so far. I am sure Dr P will do his best. Being human we want to hurry things along but it is not always successful, especially with thyroid gland problems.

    Regarding the T3, I know Dr Lowe patients always took 1 dose per day - excerpt

    re time-release T3 and normal T3:-

    Under normal conditions, T3-receptors aren’t saturated, and the use of sustained-release T3 isn’t likely to provide saturation. Saturation isn’t likely to occur with sustained-release T3 because the T3 enters cells only in small amounts over an extended time. As a result, it’s not likely that large enough amounts of T3 will reach the receptors at one time to saturate them. But plain T3 in single doses enters cells in larger amounts. These larger amounts may provide the saturation needed to provoke transcription regulation by mutant T3-receptors. If so, these saturation amounts of T3 may induce waves of transcription that on the clinical level relieve symptoms of hypometabolism.

    web.archive.org/web/2010122...

  • I wonder about B12 too. You might find this post interesting. I watched the video yesterday and was amazed at the symptoms I had and for so many years and it was never diagnosed. I had to diagnose myself!

    thyroiduk.healthunlocked.co...

  • The B12 hits me too! I was told by the private Dr I saw in South Wales that if B12 levels have been low for a period of time it will often require daily injections to switch the B12 receptors back on. If the receptors are off then this will impair the communication between the hypothalamus and pituitary.

    Also wonder if there are food sensitivities which would prevent optimal absorption and conversion with consequent uptake issues. I can relate to some of what you are saying.

    Since eliminating wheat, gluten and dairy I have lost 7lbs with no effort and my 40 mcg of T3 daily (4 x 10 mcg, single dose is too much for my body) is super stable. I have energy and live my life pretty normally even with a mega dose of stress over the past 3/4 months.

    The more I read the more convinced I am that everyone with any auto immune illness would be best eliminating gluten from the diet......completely 99.9% is not enough!

  • Hi NaamiSue - glad to hear you are feeling so well :) Me too, but no weight lost yet... Xx

  • :) Give up wheat and or dairy for a few weeks and see if that shifts it! I am pre pregnancy weight, before Lucy who is 17 now, a lot of the time. 1 to 2 lbs go on when I eat something I am sensitive to......interesting!!! AND it lowers the morning temp too!!!!!! Is it all thyroid or maybe inflammation......??????????

    xxx

  • I will give this a go if I can't shift the weight, but I've only been feeling so well for the last 10 days since increase up to 2.5 grains, so will give it a bit longer :) I can't bear the though of no cheese :D xxx

  • Reading this made me want to share how difficult weight loss is. I'm on T3 only as you know. Weight is no longer going on but it's extremely hard to shift and whe it does, it's almost unexplainable. Anyway

    I do Slimmers World but for the last 2 weeks I have been following the Intermittent Fasting Plan. At my weigh in today, I have lost only 1lb !! What on earth will it take to lose any more. My Father says . . You never saw any fat people in Belson. I could have very easily been the only one. Sorry if my Father isn't very p.c!

    I exercise loads now too.

  • Thanks :) xx

  • Hi Clarebear. Do you take NDT. Do you also take adrenal support? I'm struggling so badly with the T3CM 4.30 am dosing just want to give up as my tum hurts and I cant go to sleep at night now. Never had that. I did try yahoo group you suggested but they don"t like T3CM. I had heaps energy during day and had no tissue stimulation. Temp was going up to 36.6 after taking one and half grains. Did try to put quarter grain in yesterday but just am so sleepless. Horrible 1.30am still awake.I want to thank this group as you have all been so so helpful even if you dont know than all the groups I go to. I joined Facebook group.I was on NDT and 25mcg HC but love being off that stuff but seems I might have to go back and I could cry. xxx

  • Pleased to hear how well you are doing :)

    It's really interesting what you said about B12 deficiency impairing communication between hypothalamus and pituitary. My TSH is always low, even when my T4 is low. I knew low cortisol could result in low TSH but didn't know about B12! I know I have been deficient for a long time as my MCV has been high for many years and I now seem to have permanent loss of feeling in my big toes. I do seem to be better since taking high doses of B12 but I am now a little worried that I might need to have injections to feel better. The GP is not going to do this if I am now within range and he won't even do a test at the moment so I will have to wait until I can afford a private test.

    I also wonder if I might get on better gluten free but I am definitely not Coeliac. I don't even know if I have an autoimmune disease.

    I am taking sublingual B12 at the moment so I'm hoping this is enough to get back to normal! If I can get my B12 and cortisol up hopefully my TSH will rise and I will then be able to convert T4 better (low TSH seems to relate to poor conversion - an apparently normal response).

    Thanks so much for that bit of info! I feel I am getting a better picture of what has been wrong with me all these years.

    Congrats on the weight loss. I hope you continue to be well and get your life back to normal :)

    Carolyn x

  • Don't think we have to be coeliac, there is so much written about non coeliac gluten sensitivity. Wheat and gluten are such irritants to the body in the form they have now become, even without the 'wealth' of chemicals that are sprayed on them before planting and whilst growing.........

    It may be worth looking on the PA site to see if there is a PA Doctor near you..... You would have nothing to lose having a trial of B12 injections or even an infusion like Edit's sister had.......food for thought. Or you could persuade your GP based on high MCV for years and your serum levels are high because you supplement........ doesn't mean the b12 is in the cells......

    The Doctor I saw was very reasonable and a LOVELY gentleman.....

    I was one of the fortunate ones and the weight gain was not significant, more uncomfortable for me, it is good to be down to 9st and slightly below :)

    I am starting to wonder if the adrenal issues are also due to the toxicity our out of balance bodies create........?????

  • Thank you. I will have a look on the PA site.

    I think you may have a point about adrenals too! It seems so easy for our bodies to get out of balance but so difficult to get them back into balance again!

  • Hi karen - Sorry things are not going so well with the T3. It may just be early days and things will start to improve soon. It has taken me 13 months on NDT to really feel better. In fact I probably felt worse for the first six months and then gradually better.

    I wonder if you would be better with NDT rather than synthetic T3 and T4? I didn't do so well with T4 plus Nutri Thyroid and Nutri Adrenal. For me the breakthrough seemed to come when I stopped NAX and started CT3M. I had low cortisol but (touch wood) this seems ok now.

    I really hope things do start to improve soon.

    Clare xxxx

  • That's interesting. I've been on NDT since November and although I don't feel any worse I don't feel any better. I was resigning myself to the doc having been right and returning to Levothyroxine when my current NDT supply runs out. But perhaps I will persevere.

    (Sorry to hijack someone else's thread!)

  • Do you have any blood tests both before and moving to NDT to post on here? that might help to she'd light on what is going on. Xx

  • No. I shan't get another until Oct 2013-ish. I did post last October's, but it was too vague to be of help.

  • Hi babycatcher ....I started t3 15 months ago and and it took me three months to be comfortably able to say that I was sure it was working and after eleven years of t4 and of feeling sh....t hypo symptoms and ending up in hospital with angina it was the t3 that turned things round for me..and I feel my old self again. So hang on in there and give it another go as the dosage may need a little tinkering about until the symptoms settle down. Best wishes that you start to feel better soon...Janet x

  • Just go back to Dr Peatfield and start again. Do what he tells you. He's the best. It takes time to heal and the longer you've been undiagnosed the longer it takes to recover. Just be patient. Recovering from Thyroid is just a guideline. See Dr Peatfield.

    Eve

  • I see Dr P and started on NDT but after a phone consultation went on to T3 only. I don't add any T4 at all. I'm not 100% but I'm not far off it. Why don't you see if you should just be on T3 now. I can't tolerate T4 being anywhere near my body. It just makes me I'll.

  • High Babycatcher,

    Really sorry to read your T3 experience has not been so good. Don't give up.

    I too am with Dr P but did as you did. Jumped into Recovering with T3 PR style with a lot more success so maybe you can still get there.

    I have not been brave enough to tell Dr P yet!

    I think all the above advice is exactly what I followed first and really welcome, I can only tell you how I started. I'm now on 21mcgs 3.15am, 12.5mcgs twice per daytime 10.30am and 3.30pm. It's going well.

    Dr P asked me to start T3 with very low doses 2.5mcgs three a day and stop T4 altogether but keep up Nax Adrenal support. I had RT3 too.

    Having had a saliva test done in October showing pretty good Cortisol overall. Low am, High pm giving just below normal but virtually no DHEA after 18mths of Nax Support.

    I decided to start the CMT3 method and stop the Nax as it had not helped my DHEA levels.

    This indicated to me that I could use CM method as my adrenals were not so bad. CM is not a good idea if Adrenals are very bad.

    I don't know much and am very new to T3 but going by me (we are all so different) your starting dose of 25mcgs of T3 seems a bit high to start with per dose given lots of us starting T3 are only up to 50-70mcgs in first few weeks.

    I started with 5mcgs for CM does and 2.5mcgs for daytime, no effect. Paul Robinson had me jump CM dose to 10mcgs, saying anything less at the CM will not help but daytime dose's have to be brought up very slowly.

    I quickly moved the CM dose backward to 3am as I get up at 6am. Daytime dose came up every 5/6 days by 2.5mcgs

    Maybe you could re try with much lower slower dosing once you know B12, Iron and all the other Vits etc are up to optimum levels so that you can really absorb T3. I'm sure it can work for you especially with Dr P and 'Recovering with T3' by your side. Good Luck.

  • Big dollops of sympathy. Try not to get stressed - it'll only make you feel even worse. You can only do what you can do. No amount of worrying will make a difference. Try and chill, despite the upcoming review. Good luck! xx

  • Unfortunately it can be a long slow process. Have you tried T4 with a small dose of T3 first eg 5-10ug?

  • Hi ....yes taking 50 mcg Levo and 2 x 18.5 mcg cynomel. My sensible side tells me it can take a long time....I'm just afraid of losing my job ... I'm out of sick pay and time now... It's return to work or else!! :(

    Thank you for your comment

    K x x

  • so I take it you have gone from thyroxine only to high dose T3 without trying a dose that mimics the natural thyroid first? So too little T3 to too much T3, one extreme to the other. That could be the problem?

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