Hi folks,

[rosiegoescrazy]

so I'm on the last day of my Liothyronine trial (only 14 days) and feeling weepy. Not sure if its the medication that's making me weepy or the doc telling me the price of it per month and a guilt attack taking place. I'm desperate for it to work so badly but I'm feeling low. Is 14 days really enough time to gauge this. I've convinced her to give me another months supply (I was feeling great when I did a few days ago) but i'm worried now about wasting money especially if it's not the answer. Has anyone else been in a similar predicament and how long did you give it before deciding (if at all) that thyroxine could be the right answer after all

[ROMM53]

Hi, I wouldn't be surprised if you are going more hypo on your new dose hence why you are feeling weepy etc.

You were on 150mcg thyroxine and have been switched to 20mcg t3 +50 mcg thyroxine; the 20mcg t3 is very roughly the same as 50mcg levothyroxine ; so you've effectively had your dose reduced to 100mcg thyroxine.

I think you should have had your thyroxine cut to 100mcg (instead of 50mcg )to take with your 20mcg T3. I don't think you'll see any weight loss with an overall dose reduction in thyroid meds, in fact you may gain weight.

I think you would feel some improvements quite soon after adding in T3, but I would think on your dose you'll be feeling worse......?

Stuff the GP making you feel guilty about the cost; I've just started on T3 only, fortnight in, and am certainly not guilty......still feel extremely traumatised about how ill I was made on thyroxine!

[rosiegoescrazy]

I've to have a blood test soon for the TSH levels so wondering what that will show but yes I thought that was quite a dramatic cut. Maybe the thinking was to make me feel worse so I wouldn't then think it was a good idea - money talks eh! Ridiculous. The thing is if this proves to work for me I'd happily buy it myself (I know I can probably get it cheaper too), it's about my health after all.

[shaws Administrator in reply to rosiegoescrazy]

When you have your blood test, get it as early a.m. as you can as TSH is highest then and that's what most doctors take notice of. Take your medication afterwards, leaving 2 hours either side if you've eaten. Rarely do they consider how you are feeling.

[ROMM53 in reply to rosiegoescrazy]

am pretty sure that you're TSH will be suppressed on T3; I think that is just pretty standard with T3. So based on that, your GP will say you are medicated correctly and T3 just doesn't work for you....and you don't need it etc.

Whereas in fact, the GP has under-dosed you by the equivalent of 50mcg of levothyroxine! One hefty reduction!

As I said earlier I've been on T3 for 2 weeks, 20mcg daily to split into two 10mcg doses according to my endo professor this is the equivalent of 50mcg levo. He thinks I'll need to go to 30mcg split into two 15mcg doses, which is the same as 75mcg levothyroxine, with which my TSH was 0.9. I was on 100mcg thyroxine before that and TSH was 0.09.

I'm certain you're 50mcg T4 down over the past 14 days, your forthcoming blood tests will tell you nothing useful, and this will be used against you to withdraw your hard won T3 trial. I don't know how to set up a link to some literature,for your GP to read, but maybe Clutter could? x

[Clutter in reply to rosiegoescrazy]

Rosie, as the others have said, your T4 was reduced too much so you aren't feeling any benefit from 20mcg T3. ncbi.nlm.nih.gov/pubmed/204...

Your GP's error is wasting money, not you.

[faith63 in reply to rosiegoescrazy]

TSH shows gives very little information.

[Hidden]

You may not want to hear this but it's taken me 2 years of tinkering with T3 to get the dosage right in conjunction with a good vitamins and minerals regime/amalgam removal.

It's a shame that some think it's a wonder drug and the answer to all their prayers but it's really not as simple as that, in my experience obviously!

I'm sorry but a 2 week trial is a joke and just proves how ignorant some GPs are.

[shaws Administrator in reply to Hidden]

It's probably down to cost as MP charge £130 approx for 1 months supply.

[Clutter in reply to shaws]

My sister's just bought me 4 packets of Tiromel OTC in Turkey, 100 x 25mcg per pack. The cost? 70Lire, just over £1 per pack!

[shaws Administrator in reply to Clutter]

It is absolutely disgusting that the NHS is having to pay out such a sum. We could all benefit from T3 being added to levo, or T3 alone if the NHS or Mercury Pharma (how can they possibly justify £130 for 28 days meds). There should be an investigation.

Maybe the BTA like it that way, as they are reluctant to change their guidelines which, if they did, may benefit many thyroid sufferers as GPs wont have to jump through the hoops if they prescribe.

[Clutter in reply to shaws]

I doubt the BTA guidelines have anything to do with the cost of Liothyronine but I suspect cost is a huge factor in CCG guidelines to GPs re prescribing.

[helvella Administrator Thyroid UK in reply to shaws]

The problem is even worse for those on high doses. Here, to get to 120mcg, we would need six of those extremely over-priced tablets. In Germany the Thybon Henning product could provide the same in just two tablets - a 100 and a 20.

Add to that, a hundred of the Thybon 100mcg can be had for about half the cost of 28 Mercury Pharma 25mcg...

Rod

[shaws Administrator in reply to helvella]

It is beyond my comprehension. Members having to purchase and self-medicate for a life-giving hormone. It will be interesting to hear the views of some doctors at the Conference. As Dr Skinner said:-

This arises from the inexplicable refusal of the medical profession to recognise that patients can suffer from hypothyroidism when the thyroid chemistry is deemed to be ‘normal’ if the free thyroxine or the thyroid stimulating hormone lie between 95% reference intervals. There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.

This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.

worldthyroidregister.com/Go...

[ROMM53]

is there any way you could see your doctor again before the blood test, explain that you are a member of a thyroid support group, and that lots of members are on t3/t4 combo and a number of them have pointed out that their endo consultants all use the ratio of 10mcg t3 to replace every 25mcg T4?Especially, if you're starting to feel more hypothyroid in the past 2 weeks. Ask your GP if maybe could she just check/review the dose to set your mind at ease.

Any normal GP wouldn't mind if the request was polite and not a barked demand. (I hope!).BTW have you been ever been referred to an endocrinologist, 'cos it sounds as if you should be. x

[rosiegoescrazy]

Hi Rach, the endo prescribed the dose so wondering what's going on really. Not sure how to approach it, i will be polite but I need to make sure I don't end up a doormat. I am scared I put on weight as I've fought so hard to lose what I have so far. I can remember the days before I was diagnosed when I was doing spin classes and walking ridiculous miles but piling weight on. I've left a message for her to call me, whether she will or not remains to be seen.

[rosiegoescrazy]

My doc just called, out of hours, feeling guilty about mentioning money to me and letting me know i'm entitled to a full trial and if it works for me I can stay on it. I discussed the dose and she'll evaluate the bloods after my test next Friday to see where we stand. Thanks for listening folks

[Hidden in reply to rosiegoescrazy]

Oh my do you think she has been on here and seen the replies you got? He he

[rosiegoescrazy]

haha, who knows

[galathea]

Maybe the t3 has stressed your adrenals? DonT suppose that you have had a saliva adrenal test have you? If they are low, t3 can make you worse.

Wrth you having a look at Paul's site and at posts on here about the t3cm method... ( does anyone actually have the link please)

Xx g

[Meltedwellies in reply to galathea]

what link?

recoveringwitht3.com/

[Muffy]

T3 is around 4 to five times the equivalent thyroxine level, so the T3 you are now taking is say, say around 80mcg of thyroxine.

[shaws Administrator]

This is from a past post and maybe your GP can give you a private prescription,

healthunlocked.com/thyroidu...