Refused T3 due to cost : Hi could anyone advise... - Thyroid UK

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Refused T3 due to cost

07021963•

8 years ago•6 Replies

Hi could anyone advise, please I have struggled with hypothyroidism for the past two years, without going into a long story ! I started on 25mcg daily without any change from my horrible symptoms the worse being my lovely thick hair was falling out. Severe tiredness, weight gain etc etc I seen my endo who upped my dosage to 50mcg and told me the next time I came which was 4 months if my symptoms had not changed he would look into prescribing T3 medication. Guess what I went to my appointment on the 22/02/17 and was told he could not give me a prescription for T3 due to the cost and was unable to give it to me because he had been told by his bosses he was not allowed to give it to patients any longer. He then told me the patients who had been treated with this drug did well but then said through studies, there is no proof this medication actually works or if there would be any adverse side effects in the future, and then said who knows in the future they may be giving them out like smarties. He then said he thinks I need a further increase in my levothyroxine and to come back in august. He then said he would write to my doctor and ask if he could prescribe this drug, but then said don't hold your hopes up due to cost I would be very surprised if he prescribed this drug for you, just before I left he said if I could I would give you it. I left feeling deflated and totally alone.

I have now been scrolling the internet to see if I could get this drug my self you can in many places abroad but feel nervous incase it's not the real thing can anyone help with a genuine site I can buy this drug myself I just want my life back.

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6 Replies

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puncturedbicycle8 years ago

Do you have copies of your test results? You are taking an unusually low dose of levo and may just need to take more to feel better. Your starting dose of 25 is usually used for elderly or heart patients, and it sounds like you may have been left on too low a dose for too long.

07021963• in reply topuncturedbicycle8 years ago

Hi sorry I may not have been clear, I started on 25mcg then 50mcg now 75mcg although I agree with you I still think this is too low my symptoms have not changed at all apart from my hair has stopped falling out in clumps now just thin and lifeless from very very thick hair about to buy T3 myself online will update if improvements.

puncturedbicycle• in reply to070219638 years ago

Yes, no worries, I understand the dose has been raised, but the starting dose of 25 (if you have no relevant health problems) is kind of a red flag which indicates that levo will be handled overcautiously. Your current dose of 75 is unusually low. That doesn't mean it isn't the right dose for you, but the trend we see here is for undermedication, and your story is starting to walk, talk and quack like a duck.

May I ask how often you've had blood tested in the two years you've been on levo?

It's up to you obvs but it makes sense start at the beginning and ensure you know what's going wrong before you just start throwing extra meds at this. Once you've got two meds in the mix it can become more difficult to get the dose right and you may need the extra t3 test to know if you're on the right dose.

Generally the first thing to try (unless you can't tolerate it at all) is taking enough levo for long enough to get your t3 and t4 in the upper quarter of the range, then if you're still symptomatic you may want to add some t3.

070219638 years ago

Hi apart From the thyroid specialist my gp has checked my bloods once in two years the specialist wrote to my gp but they still did not request bloods I had to ring them all I no the specialist told me on the 22nd of this month that I am on the low end and they need to get me higher whatever that means I have gone from a size 8-10 to a 12-14 in the past year or so still have horrendous symptoms dragging myself through the day I am prepared to try anything to get my health back but am concerned about just taking this T3 without a doctors input. Although the thyroid specialist told me he would give me them if he could. But they were too expensive.

Clutter• in reply to070219638 years ago

07021963,

My thyroid is entirely managed by my endo so GP doesn't test. You should get into the habit of asking your thyroid specialist for your results and ranges so you know whether you are adequately dosed. I recommend you contact your specialist and ask for a copy of your recent results and ranges and post them on the forum for advice before you start taking T3. You could check with your GP receptionist whether your specialist writes to your GP reviewing your consultations and results and dose.

shaws8 years ago

Welcome to the forum 07021963 and thank you for introducing yourself and explaining why you need a source for T3.

This information cannot be posted on the main forum, so anyone wishing to reply must do so by private message.

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