why do i have bad days?

I have changed my meds to liothyronine only . i used to take levo 100 mg and started lio . i took the leap to just lio beginning of april . i have been increasing my dose gradually . i am now on lio 60 mcg . morning lunch then about 4pm. 20mcg each time. i bought Paul Robinsons book . It is very good and helped but I still have unanswered questions. I guess I always will lol. I was hoping someone could advise me please. They are the following;

The book advises taking first tablet at times before your natural waking time then you can go back to sleep till that time . I have to get up for work at 530a.m some days . some days 10 a.m and my natural waking time is probably 12 noon at the moment lol.

So do I take say an hour before the time i have to get up each day i.e 430 a.m /9a.m/ an 11a.m when i am off for the day or what ?

I have terrible night sweats . I am 49 so is this just menopausal or related to hashimotos or the treatment?

i Have good days and then i have a day every 3 days or so when i cannot wake up , ache all over ,especially hips and cognition is fuzzy and hands feel shaky . legs weak etc . i cant do anything without a struggle . does this mean my dose is not right ? but i can be o.k the other days just bad when wake up for first few hours . i could be referred to an endocrinologist who has been recommended but i am scared he may not believe in lio only and although my g.p is letting me trial my dose and i know i am very very lucky for that as he does not care re the cost . he believes my health is more important . he admits he knows little . he has offered to read paul Robinsons book from me. its just i get scared if he doesn't know enough am i doing the right thing . so i crave an endo who does . i know prob being silly .

what is the max dose of lio ?

paul only takes 35 in the book and not being a man he prob does not know how female hormones and menopause etc can effect lio dose etc

sorry to go on . i guess i am scared of the unknown territory of this drug and the fact i cannot work out if i am taking enough and the correct times

thankyou in advance for your help

10 Replies

oldest • newest

greygoose

5 years ago

Hi Popoppy, firstly, stop worrying! And don't be scared. Lio is not a drug, it is a hormone that your body can no-longer make enough of to meet your needs. It is nothing to be afraid of if treated with respect.

I'm afraid I don't know anything about Paul Robinson's book or his method but from what I've heard of it, I don't think it would suit me. And that's the most important thing to take on board - not everything suits everyone! We are all different, there are no hard and fast rules. No-one can say what the max dose is because it depends on the person. And it's all a case of trial and error. But it's also important to understand that the errors aren't going to be all that drastic. If you feel you've gone up a little too far, you just come down again, that's all. The thing is to listen to your body and to increase very slowly. And by the sound of your symptoms, it's possible that you do need an increase. Try it and see.

For myself, I take all my lio at night à la Dr Lowe, just after midnight. It's what suits me best and it's what I feel best on. At one point, I got up to 225 mcg (I know, I know) but now that the adrenal treatment is kicking in a bit, I'm slowly bringing that down again. Tonight I will take 175, stay there a bit and see how it suits me. If still too much, I'll come down a bit. If not enough, I'll put it up a bit. It's all a question of feeling. But my method wouldn't suit everyone, I know.

So all that to say, don't be afraid. And if I had a doctor like yours, I wouldn't bother with an endo. I've never met an endo that knew the first thing about thyroid - and I've seen three. So, smile and stop worrying, you're on the right track, I'm sure.

Hugs, Grey

poppppy

in reply to greygoose

thankyou Grey your reply is so so helpful . I will stick with just my g.p and i think i will get Dr Lowes book . Do you agree ?

Could I just ask you how your sleep is? o you take your tab after midnight and then wake up at what time ? It sounds a good idea coz i take hours to wake up and feel better late afternoon and sometimes only at about eight p.m and then cant sleep till 0200a.m etc . So a dose at midnight sounds good for being at my best earlier in the day . I will try it and increasing my dose .

i am concerned because I had normal free t4 blood tests on levo 100 mg but below range t3 . it was only just out of range but only went in range with lio and went out again without it . so my doc agreed i needed it as i may not convert to t4 to t3 but then endo sed as t3 varies thruout day then going below range at certain times of day is normal and coincidential . i thought though as why should it ever pulsate below range when i am on levothyroxine . surely if it is a fluctuating level in the bloodstream it should fluctuate only within normal range .

so sometimes i feel a fraud because my tsh was never extremely high like a majority of people on here . i think its highest was 8 . and my t4 was about 3 below range when i was commenced on levo as i had loads of symptoms and my dad was hypo and found late when he was totally confused and rushed to hospital .

i have a positive antibody result for hashimotos though tested 2 years after levo commenced .

It was thanks to this wonderful site that i thought about non conversion to t3 and had free t3 tests .

Thankyou thankyou thankyou Grey for your kind words . I wish you well in getting your treatment right I really do .xx

in reply to WildDeer

Well, you know what? When I first read about it I thought the same thing! But I have always had great respect for Dr Lowe so I thought well, he must know what he's talking about - after all, it's what he did himself.

So, with great trepidation, I tried it. And... nothing. No hyper symptoms what so ever. I was a little unsettled the first few nights - nothing drastic, mind - but after that I started sleeping much better.

As I said, I read Dr Lowe's explanation, and I thought I understood it, but there's a huge difference between understanding something and being able to explain it. Especially when a bit of brain fog gets in the way! And, possibly due to the brain fog, I didn't bookmark the article. Which I regret. But I'm sure Shaw's has a link to it. She is our Dr Lowe expert, so to speak. Perhaps she will be good enough to post it again.

I don't know how much stamina one can hope for at 66. I'm now 68 and have a lot less than I had at 66! But clear- headedness, yes! I don't see why we shouldn't have that. I've lost a lot of my muscle mass due to low HGH, so I don't expect much stamina or bodily strength anymore, but I've still got my entire brain! (Only thing that is entire now. lol)

I don't know if taking all your dose at night would work for you. It doesn't work for everyone. We're all so different. I just know it works for me (at the moment!). I'm not saying everybody should try it. But I am saying that that's what I do and I'm surviving, so maybe there's a little less reason to be afraid.

I think Dr Lowe's book would be a very good idea - as would be sticking with your doctor (if it ain't broke don't fix it!) - you should be learning as much as you possibly can about your disease.

My sleep varies, usually very good, but tonight I'm up with itchy feet. They are so bad that I want to rip the skin off! And sometimes it's foot pain that keeps me awake. But if my feet are happy, I sleep like a baby! I did fall fast asleep a few hours ago but was woken by severe cramp, and then the itching started. Sigh.

Taking hours to wake up, only feeling good late in the day, and having trouble getting to sleep sounds to me like adrenal fatigue. It might be a good idea if you can get your cortisol tested somehow. That could also account for your convertion problems.

The endo is right about levels fluctuating through the day - and if the level is very low, why shouldn't it fluctuate out of range? That's why its best to always get your tests done at the same time, as early as possible in the day (8.0 am?) because that's when the TSH is highest and the frees at their lowest.

And there's absolutetly no reason for you to feel a fraud with a TSH of 8! Especially when you consider that a truly euthyroid person has a TSH of 0.8!!!