I am having nightmare trying to keep my temps up and I do feel worse when they are low.
My t4 is normal and TSH suppressed but my T3 over the top: 8.1
It seems my hormone replacement only lasts a few hours then I just plummet. Symptoms include burning up after exercise, very exercise intolerant, roaming pain and stiff sore muscles and mega brain fog is back. I'm evening wondering about some adverse reaction and my body just can't regulate the hormone.
Second visit with my new endo today...he works with NDT but looks like he is only interested in the numbers, and thinks he will be able to reduce my dose again in 6 weeks.. I am actually feeling like ice at night, like, real core cold. I'm on 3 grains in the morning but I do have some T3 by me. I took 6 mcgs this afternoon, the hit was a bit fast but it jumped my temp up and the soreness, stiffness and lead weight feeling eased up. So, there is defo a tie up between feeling well and body temp which Wilson's theory is based on. Be grateful for any shares or thoughts.
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helbell
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Have you tried to split up the dose? Maybe the T3 from the NDT goes very high and then by later in the day it goes too low and you are getting fluctation. Or it's not necessarily going too low but it's the amount of fluctuation causing trouble. Other people would know more about this than I do. But from what I've read here people take this in various ways to achieve a more steady blood level of the T3.
It does seem that the problem is fluctuation in blood level through the day, so, maybe I should try that. I have tried splitting to two in the morning and 1 or two-half grains later. More trying, I guess. Thank you
Dr. Lowe dosed his patients 1x and if at 4 grs you still had symptoms, he put his patients on 1x daily t3 only. Sometimes temps just don't go up for whatever reason. He didn't believe in Wilsons protocol and i don't either. Here is why:
That is a great page Faith. Further down he answers a lady who complains of her endo wishing to stop her t3 because her figures are same pattern as mine. I could also identify with her very brief...mine is minutes ...periods of feeling overstimulated. That was incredibly useful, thank you.
HI When I was overdosed on NDT by a doc my tremps was still low and I had all the hypo symptoms but meds had made me hyper. This can happen. your T4 should be lowish on T3. It is important that the FT3 stays in range.
Thanks Jackie. All I know is that I have this dramatic drop in temp and hypo symptoms like my body has run out of hormone. I don't get that because I thought t4 had a long life, yet my figures don't translate to tissue resistance...I don't think. And I can certainly feel the hit from t3. I'll look again. Maybe I just need to clean my act up a bit more re dosage method. I get this fear that now I have started thyroid hormone replacement I have completely knacker ed my thyroid hormone function. That said, I was grinding a halt with a zillion symptoms before t hormone replacement. I will invest in adrenal stress profile too.
HI You really should not feel like that. Do you see a good Endo? research carefully before asking for a referral and check with sec that they believe in T3.
Jackie, I am seeing an endo that works with, or willing to work with NDT and T3 as well. Sadly, he is only going by figures not symptoms. But, I guess the symptoms are as illusive to them as us. What I am getting out of it is blood tests form my GP which would be dearer than the endo consult fee. I wonder if I am pooling. Lowered doe and went on as little t3 as poss. My first with T3 and some of the symptoms have cleared up. I need to get back onto the NDT dose he asked me to stay on so he could assess on next blood test. If we arrive at the point where he is happy with blood levels and I feel properly out of whack...we will part.
Hi I see a real problem for you. Yes, lots of Endos are not very enlightened. I hope things improve for you. When I was overdosed by a private doc my symptoms were exactly like hypo but in fact I had become Hyper. My Endo did sort me out very well.
If you really want to get into the details of using T3 only,how to use signs and symptoms rather than bloods etc to get your cellular level right Paul Robinson's book on recovering with T3 and the fb group associated with it are the most informative and supportive help you will get. It's well worth a read. I have been diagnosed with M.E for four years and after 5 months working with the support of the admin of that group I am finally glimpsing normality. Good luck
I have it and must go over it again. Thanks for the reminder. A great resource for staged dosing.
Interestingly, I was dxd with Fibromyalgia and my symptoms greatly improved on thyroid replacement...for a while. So many are lumped into that CFS area.
I have to say the biggest breakthrough has come from taking ldn and finally accepting that I needed to self medicate with hydrocortisone whatever the NHS tests said because two saliva stress tests showed hardly any available cortisol. Of course t3 only for five months gives me a clear shot at it too with no rt3 or t4 clogging things up at the mo.
It saddens me to think I've list four years of my daughter's life but I am hopeful that if nothing else I can stop feeling like death evey day.
Sulamaye, is there a no-sugar version of LDN. I have some but it's so syrupy and I do have trouble with blood sugar control since HypoT? And are you saying that using t3 only will clear any T4 pooling? Cos I am wondering if I have issues with this.
I wish you all the luck with your progress. Are dxd with anything else or is ai all down to hypo/autoimmune/adrenal triumvir...such as swine. I mean how does one come off thyroid replacement to get adrenals back up. I think I'd die without it now! Some say that with natural replacement adrenals will rise anyway but I don't know.
I used Paul Robinson's book 'Recovering with T3' and very supportive fb page - they are fab, really knowledgeable called recovering with T3. I started T3 only late Sept, building T3 levels up slowly for first few weeks while majority of T4 still clearing. It is meant to take aprox 12 weeks to get rid of all T4 and Reverse T3 which alos can pool. You prob know this but T4 knocks off one iodine molecule to make T3, and different one to make Rt3 - so if you take only T3 you can't pool T4 or RT3 - but Paul is excellent on the science and how to use T3 safely taking Temps, Heart rate and Blood pressure to monitor before and after doses. Some people find this a pain, but of you're really ill you''l do anything to get better won't you?
PS yes LDN does come in capsules or if you can get your hands on the high dose there are ways of diluting it yourself - which is all the pharmacy does - and suspend it in water rather than syrup.
Sulameye, I got worse and knocked off t4 altogether today - started on a low dose of t3, very small doses as soon as temp drops. After posting tis I was getting unbearable sweats...that feel the ice hot..weird, every time my NDT peaked. I've read a bit more about pooling etc so I think this may be my problem. I hope I am on the right track anyway.
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