T3 Swings & Roundabouts ?: I have posted before... - Thyroid UK

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T3 Swings & Roundabouts ?

Pinkpeony profile image
40 Replies

I have posted before about my delight at being given a trial of t3 .

The Endo said 10mcg a.m. and 10 p.m. and not to reduce Levo.

I felt absolutely dreadful , and on Clutters advice I stopped it for a couple of weeks and then started to introduce it again 5mcg for a couple of weeks , then 10 then 15 until a couple of weeks ago 20mcg . For the last week or so I have begun to see the light at the end of the tunnel BUT!!!

I am itching scalp and body

My stomach has the " collywobbles" all the time

My lips have been full of cold sores which I haven't had for years.

I didn't associate this till someone posted the other day about cold sores.

I have lost a few pounds in the last few weeks, and added to the significant weight loss when I was Hyper , before RAI I am not looking good .

Apologies to those of you who are desperate to lose weight . Even the last few years on Levo alone didn't put any weight on me.

Question is , shall I throw in the towel as far as T3 is concerned ?

I feel so depressed , I don't know what to do.

I see the Endo in 5 weeks. He will take it off me if I tell him this.

Sorry for the moan

Pp

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Pinkpeony profile image
Pinkpeony
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40 Replies

Hello Pinkpeony,

I recently started adding T3 to my T4 as well.

It can take a while to find the right dose...you have had too much..I didn't have enough!!...My endo HALVED my thyroxine!!

Don't give up yet as for long term health adding T3 to T4 has to be a good thing...you just need to work on the dosage.

If I was you I would leave T3 off for 2 days and then begin again on a starter dose..and maybe reduce thyroxine a little. How much thyroxine are you on?

I expect Clutter will give you solid advice sometime later.

I lost weight starting T3 too even though I was under medicated...wierd isn't it?

Flower007

Pinkpeony profile image
Pinkpeony in reply to

Thanks for the reply Flower007

I am on 100mg Levo and at the moment 20mg of t3 .

When I first posted with the query that the Endo said not to reduce Levo it was suggested that was because I was under medicated.

Other was also a suggestion that he was setting me up to fail .

NHS Endo surely not ? 😱

Cheers Pp

in reply toPinkpeony

Pp,

Lol.....

I also am on 20mcg T3 a day.

I WAS on 100mcg Levo previous to T3 but endo cut it to 50mcg and I have felt just awful. After labs Endo increased Levo to 75mcg so now my dose is;

T3 mcg 20 a day

T4 75 mcg a day

I think this is what you should try but let some of that T3 in your system decrease for two days. Cut T4 today as well and start 75mcg tomorrow.

Good luck app,

F

Pinkpeony profile image
Pinkpeony in reply to

Lot to think about Flower.

Will decrease and see how I go .

Pp

Clutter profile image
Clutter

PP, Go back to 15mcg for a couple of weeks and, if necessary, try increasing to 20mcg again. 15mcg is possibly sufficient. There's no reason for the endo to stop T3 if you get benefit on 10-15mcg but feel overmedicated on 20mcg.

Pinkpeony profile image
Pinkpeony in reply toClutter

Clutter thanks for the reply.

I forgot to mention Tinnitus has ramped up also. I believe Gabkad mentioned once that too much T3 made her Tinnitus worse .

Do you think this is what is causing the niggles?

Pp

Clutter profile image
Clutter in reply toPinkpeony

Pinkpeony, it may be. Which dose did you feel best on?

Pinkpeony profile image
Pinkpeony in reply toClutter

Clutter I probably felt best on 15mcg t3

I wondered if it's better to reduce Levo or T3?

Pp

Clutter profile image
Clutter in reply toPinkpeony

PP, reduce the T3 to 15mcg. It's not the T4 which has caused problems.

Pinkpeony profile image
Pinkpeony in reply toClutter

Ok thanks Clutter

Pp

Parbrook profile image
Parbrook

I went through a similar process and found that 10mcg T3 was better for me than 20mcg along with increasing T4 from 75mcg to approximately 86mcg (6 x 100mcg tablets per-week).

Pinkpeony profile image
Pinkpeony in reply toParbrook

Thank you yousurname

It's trial and error isn't it?

The trouble is it takes so long for T4 to take effect.

Pp

Parbrook profile image
Parbrook in reply toPinkpeony

Yes and yes.

Patience and perseverance are required.

Pinkpeony profile image
Pinkpeony in reply toParbrook

Thanks for your replies yousurname. I will see how it goes .

Pp

Tallboy profile image
Tallboy

The problem could be the type of T3 you are taking? I can't get on with any form of T3 in tablet form. I've tried French/Italian versions and recently a Mercury Pharma version prescribed by a consultant in the UK. Within two days of starting the medication I get tired, very tetchy, no motivation and ache all over basically a real pain the bum to live with. Once I stop taking the tablets I get back to 'normal' within two days. I put it down to the inactive ingredients in the tablets because there are certain types of T3 I can take. Notably an Italian liquid version and an unbranded capsule version supplied by Boots in 10mcg strength. Hope this helps.

Pinkpeony profile image
Pinkpeony in reply toTallboy

Thanks Tallboy

I have only had the Mercury Pharma from the chemist which I believe is the only show in town as far as the NHS is concerned .

Where do you obtain the Italian liquid version. PM if necessary.

Interesting about the Boots 10 mcg , I will l have to follow it up.

Cheers Pp

Tallboy profile image
Tallboy in reply toPinkpeony

The Italian liquid is called Liotir comes in 20ml bottles. It comes with a dropper so you can adjust the dose easily. You can buy it (13euros)over the counter in Italy but they will only sell you one bottle without a prescription or letter from a doctor. So the problem with this is getting a regular supply unless you have a friend in Italy.

Given that I tried the NHS, again, and they prescribed T3. I went with it prepared to try the meds dispensed but knowing they probably wouldn't agree with me. However this round the chemist(Boots) came up with T3 in 10mcg capsules, unbranded. And they worked just fine.

I reported back to the consultant and she wanted to up the dose. This time the meds were 20mcg MercuryPharma which knocked me sideways so stopped taking them and am awaiting a new prescription.

Pinkpeony profile image
Pinkpeony in reply toTallboy

Thanks Tallboy

Unfortunately my Italian holidays are a thing of the past , but will certainly enquire about the capsules from Boots.

I hope you get sorted soon .

Pp

Razzar1977 profile image
Razzar1977 in reply toPinkpeony

I have liothyronine 10mcg capsules from boots in brown bottle. I was told when I was given 8 weeks worth by endo I would have to throw away 3 weeks worth away or give them back to boots as they have a short shelf life of 5 weeks. So I have 8 weeks of med's but will only be able to take 5 weeks as the rest will go off by the time I get to take them. He said they should have ordered me 20 mcgs tablets instead as they last longer and all I would have to do is cut them in half. He was very insistent on getting the remaining pills back as he said they were expensive. I did think to myself what would it matter if they have to be destroyed anyways. !!

Pinkpeony profile image
Pinkpeony in reply toRazzar1977

Hi Razzar1977

I find that very weird. I can't understand when the countdown begins . If Boots have them in stock , are they starting to go out of date then?

What is the point of giving 3 weeks back if they are no good.

Why did the Endo give you those instead of the Mercury Pharma 20mcg?

Sorry about the questions but I can't get my head around it

Cheers Pp

Razzar1977 profile image
Razzar1977 in reply toPinkpeony

I can't either I have no clue they said they have never needed to order them into boots there before as no chemist in monmouth Wales would not keep them in stock. Controlled drug or something sounds like bs to me .

helvella profile image
helvellaAdministrator in reply toRazzar1977

I think that things like 10 microgram liothyronine capsules are made to order. Boots get them made by another company and they are delivered to the shop.

"Specials" often have a 28-day life for one simple reason: no-one has the resources to test them properly. You can't make multiple batches just to see how fast they deteriorate. Absolutely no-one keeps such products in stock.

I suspect the pharmacist read "10 microgram liothyronine" and interpreted that as how they were to be supplied. That would force them to be specials. If the endo had written "20 microgram liothyronine - take half a tablet each day" they could have supplied ordinary 20 microgram tablets.

I too have seen a specials order where the number of days of life left was not sufficient for the order. That was only 28 capsules, but it took several days from manufacture to patient.

Razzar1977 profile image
Razzar1977 in reply tohelvella

I see where ur coming from there are exactly 168 caps in this bottle. Now u say it like that it really make a lot of sense now. The pharmacy did questions why he requested so much . The reason is he is really booked up he prescribed me what the thought would be enough for 10 weeks. But 3 weeks of them have to be thrown as they will go off before I can take them . I think my doc is going to be funny to prescribe them she said before that she wasn't allowed to prescribe them and a consultant would have to . X

Pinkpeony profile image
Pinkpeony in reply toRazzar1977

Crikey!

Its complicated

Razzar1977

Regards Pp

Razzar1977 profile image
Razzar1977 in reply toPinkpeony

It's baffled me hun lol don't need the drama no I'm joking. I should be thankful he gave me a chance to try this new hormone I know so many don get the chance x

Pinkpeony profile image
Pinkpeony in reply toRazzar1977

Hi

I hope you find something that works for you!

Xx Pp

Razzar1977 profile image
Razzar1977 in reply toPinkpeony

Me too ty ppxx

helvella profile image
helvellaAdministrator in reply toRazzar1977

He could so easily have given you two prescriptions - with half the quantity on each one - couldn't he?

GPs who may be restricted as to what they can prescribe by local rules are often able to continue prescribing once started by a consultant. But that cannot initiate that prescribing.

Razzar1977 profile image
Razzar1977 in reply tohelvella

I see what u are saying . It would have been better as 2 scripts and tabs. I know they can only prescribe what is specifically on the script.

helvella profile image
helvellaAdministrator in reply toRazzar1977

Up to a point. But they always have the option of contacting the prescriber and discussing the issue. :-)

Razzar1977 profile image
Razzar1977 in reply tohelvella

This is very true will make sure I tell him when I go back they were a pain to get I had to take then to late as they had trouble getting them. X

Pinkpeony profile image
Pinkpeony in reply tohelvella

Thanks for that Rod.

Pp

Scazzoh profile image
Scazzoh in reply toRazzar1977

How strange? The doctor is getting way beyond his remit, it sounds as though he is paying for them out of his own pocket. Why would the 20mcgs capsules last longer?Could you ask Boots who makes the capsules, or is there an information form with them. Contact the makers and ask them about the shelf life and show the reply to the endo.

Razzar1977 profile image
Razzar1977 in reply toScazzoh

Funny thing is no info sheet and all I was told it had to be shipped in especially as no chemist within area will stock it.

helvella profile image
helvellaAdministrator in reply toRazzar1977

There will never be a standard Patient Information Leaflet with a specials order.

Razzar1977 profile image
Razzar1977 in reply tohelvella

Well I definitely think u have a point there as u said they are special order. Makes perfect sense.

Razzar1977 profile image
Razzar1977 in reply toScazzoh

I found it a very odd thing for him to say not the short shelf life but how expensive they were and to make sure I bring the remaining lot back to him. If he has to destroy them why would it make a difference taking them to him or me chucking them in the bin. Which I think is a total waste I would post a pic but not sure I'm allowed an I? ?

helvella profile image
helvellaAdministrator in reply toRazzar1977

You are perfectly free to post pictures - but you can only do so on the original post in a thread. So it has to be a post you make.

The alternative is to place the picture somewhere such as DropBox or another online "cloud" storage loation, and post a public link to it. There are at least dozens, if not hundreds or more photo-hosting sites available and many of them are free.

LAHs profile image
LAHs

When I was on Levo T4 only I was aware that I needed T3. But since my Endo hadn't realized this for 2 years I was afraid of trusting her to get my proportions right - so I got another Endo and got on Armour (an NDT) because that has pretty good proportionality (well, it's not human ratio it is pig ratio but it's closer than I would trust my Endo #1 to work out).

Pinkpeony profile image
Pinkpeony in reply toLAHs

Hello LAHs

My Endo seems to be primarily a Diabetician. I think I know more than him thanks to the people on this site .

I wish you could get NDT in this country without the hassle and I would try it maybe.

It seems people who order thyroid meds from abroad , frequently have supply problems.

Thank you for your reply

Pp

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