Being started on Liothyronine? ? Any experiences??

[Razzar1977]

Finally got to see my specialist who noticed straight away I was very unwell. He said that my body does not absorb levothroxine so had started me on a low dose of Liothyronine 5mcg for 2 weeks then after that to increase to 10mcgs for 8 weeks until he can see me next. Says he has to increase slowly as he doesn't want my body going into shock. Tried getting my script yesterday but no chemist here stocks it needs to be ordered in especially?? . Specialist said he only treats with this drug if it's really needed so obvs I'm a bit worried. What are people's experiences with this drug as he is taking me off levo completely and only treating me with Liothyronine. He also said my body is not converting any of the levo at all. What I want to know is how has it helped other people and their symptoms as in hair loss, weight gain etc...did it clear up their symptoms. Sorry for the long msg lol I'm just a bit of a worrier xx

[trevg]

I'm being started on 20ug T3 soon so will watch this thread closely!

I hope to take in split doses as per Paul Robinson's protocol as I sense I have Wilson's temperature Syndrome with sleeps of only 4 hours at a spell [years like this] & low waking temps ~96.5 constant.

I'm worried about the effects on me of T3 but moreso of NOT trying it so it's suck and see again..but regime needs to be found for us all as individuals.

[shaws Administrator]

Hi Razaar 1997

I am sorry you've been having problems with your medication.

First thing I will say is that thyroid hormone replacements are not 'drugs' - the are hormones and replace our natural hormones which the thyroid gland isn't producing as it should.

Liothyronine (T3) is the active hormone required in all of our receptor cells and levothyroxine (synthetic T4) is supposed to convert but some of us do not. Therefore your Endo sounds very good in that he will prescribe T3 for you.

I found the benefit immediately some T3 was added to levo but now take T3 only and haven't felt so good for years. There is no need at all to be nervous of liothyronine and I'll give you a link which might explain things better.

I take my dose once daily but some doctors say to split the dose.

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

With levo I was forever in and out of the A&E and the doctors. I assume they thought I was hypochondriac or some other but it was actually the levo which was making me so unwell and as soon as T3 was added my whole system calmed down and I've had no problems since.

When you begin take your pulse and temp several times a day for a record so you can keep some track. Sometimes if I felt quite hot and took temp, it was fine. My pulse was normal again too.

[Razzar1977 in reply to shaws]

Ty I'm so happy he took 1 look at me and prescribes it straight away I been so ill and I'm looking forward to getting my life back. I do feel guilty tho as some people on here have to fight to get this drug or have to pay a fortune to get it from abroad. Just wondered will the weight I have gained start to come back off as I don't eat enough to make me this big. Ty for putting my mind at rest . He is dividing my dose into 2 times a day at the moment as he said he doesn't want my body to go into shock. The chemist has managed to get my script in for the 10mcgs but still waiting on the 5mcg. They said it's not safe to split it in half. Just wondered why there is such a problem getting hold of these hormones. X

[Spareribs in reply to Razzar1977]

I split my T3 in half no problem, took half at 8am half at 4pm and levo at bedtime. I took my first T3 pill with milk 'tho so it didn't work as well - I was worried too! J

P.S as Shaws says - keep a diary

[shaws Administrator in reply to Razzar1977]

They have a problem because in the UK there is only one licenced T3 and the price is exhorbitant to say the least. I believe it used to be about £25 per month and now about £180. So I personally cannot believe how they arrive at that price. There are other T3s much lower in price but aren't licenced although the doctor can put on the prescription 'on a named patient basis'. I'll give details just in case you have a problem. The company above I'm talking about sometimes runs out completely causing a panic amongst patients.

thyroiduk.org.uk/tuk/treatm...

The hormones maybe brand names in other countries but not licenced in the UK.

I hope you feel much better quite soon and if you pass the name of your doctor by email to [e-mail] for her list of sympathetic doctors.

[Clutter in reply to Razzar1977]

Razzar, most UK NHS patients are prescribed 20mcg Liothyronine (T3) tablets which have to be cut down into 10mcg or 5mcg doses. It's not ideal, but it is safe. Buy a pillcutter from any high street pharmacy and cut your 10mcg into 5mcg doses until your 5mcg tablets arrive.

[Razzar1977 in reply to Clutter]

I would but boots won't give me my script of 10mcgs without giving me the 5mcg as well for some reason they are bring funny about it. The specialist wrote the script for both on same script. So all the while I'm not on anything at all . It's maddening as I want to get started already. I just can't understand why my body was not absorbing the levo at all which means I might ad well have been taking fresh air . Xx

[Clutter in reply to Razzar1977]

Razzar, there's absolutely no reason why Boots can't supply the 10mcg they have in stock while they await delivery of 5mcg. Ask to speak to whoever's in charge of the pharmacy.

[Razzar1977 in reply to Clutter]

I rang 3 times they are refusing to give me the 10s until the 5s turn up. The 10s turned up by courier today but the 5mcg were being shipped from else where. Even my hubby went in saying surely she can split the 10s and they said no they did not recommend it. They have given me the run around all day . Guess depends on what pharmacist you get. Feel like shit hope this doesn't happen every time I have to get a script x

[humanbean]

I take a smallish dose of T3. I split my dose, but I had to experiment a lot to get the timing and dose size which worked for me. What works for different people is a personal thing - there is no "one-size-fits-all". Some take all their T3 at once, some split in to anything from 2 to 5 doses. Some take the bulk of their T3 in the morning and take smaller and smaller doses as the day goes on. Some people take it at bedtime, others avoid bedtime like the plague. Don't be afraid of T3.

[Razzar1977 in reply to humanbean]

He said I have to take my doses carefully and have to take them 8 hrs apart . I have been so ill lately I haven't even been able to stay awake at all. X

[mandy-white]

Hi, I am on T3 only and am much better as I couldn't convert. I tried all ways of taking my T3 and have found the best way is splitting my dose into 4 times a day at 4 hour intervals. Everyone is different so just adjust to suit you. hope it goes well.

[Razzar1977 in reply to mandy-white]

Ty hun x

[Hidden]

I have 20mcg T3 and have to cut pill into two in order to split dose.

It is not ideal as I often end up with a pile of powder. My endo said 20mcg was strangely cheaper than 10mcg or 5 mcg so was more freely prescibed (with the intention of it being split.)

In order to keep my GP happy as he's the one paying endo has asked me to persevere with the 20mcg.

Also strangely endo said when I switch to him as a national health patient (I'm private at present until dose is stabilised as expected problems due to heavy iron overload), he would be able to supply me with 5 or 10 mcg. I didn't really understand this as I thought GP still paid the bill.

F007

[Razzar1977]

I have no idea either I'm just shocked I have to waste 3 weeks worth as they will go off before I get to use them. Strangely enough I had more problems getting hold of the 5mcg than I did the 10mcgs he wrote them on 1 script. So when it came to getting the script he would not let me have any of the tablets until they had received all in the pharmacy so I was delayed in taking the pills for 2 days. So the 2 week blood test that he has booked me to have should I change it ?? As I will be out of sink now and it won't be a true reading will it ?? So confused at the mo. The endo seemed to think I would have no problems getting the pills and he said all the chemists will stock it. When boots said they don't stock it and have to order it in especially I said I will take it to Co op and he said there's no point they won't have it either. It's going to be a pain splitting it but it's worth it if I get better. The 10s I can't split as they are capsules. X

[acunatang]

I take T3 only, I'm still not in stable dose as I had to take excessive high dose to beging eith to get rid of RT3 which had built in the system due to me not converting! Anyway I have found it to be very good but like I said I'm still not on stable dose after 6months but I'm almost there, I hope, I have lost all my excess weight, my bowel function improved loads, for first time in my life I was emptying my bowel every day, my nails grew, whereas before they were always brittle, it's definitely the right medication for me, I just need to arrive at the right dose! Good luck, I'm sure will find it helps, you might need to go up to high dose to get rid of all rT3 and toget enough into your cells, which have been deficient for a while creating problems with other disease! It's a long road but don't give up xx

[humanbean in reply to acunatang]

I had to do the same - went up to a high dose because of very high RT3. Once the RT3 had reduced enough I couldn't tolerate the high dose any more, and I now take a fraction of what I was on before. I'm very pleased about this - it's a LOT cheaper!