The fight goes on to stay on Liothyronine

[Sharcott]

After fighting my way back to good health, the fun as started my the drs are refusing to sighn the percription for my Thyroid Lio Medication, they had signed and sent over the Levo. I have worked for months nearly a year reducing it, at one point coming off the medication, my thyroid swelled like crazy and I couldn't function, I have lost most of my hair, tests show free T 4 very hight TSH suppressed but free T3 barely in range. I have written at lengh about 2 months ago to my Dr and said I wish to remain on the Loi my consultant put me on 18 years ago, they are not responding to me. They will soon be saying I have Fibromyalgia and have me back on painkillers and sleeping tablets. Any advice welcome please because they say they cant prescribe it any more but they didnt the consultant did

[Mary-intussuception]

Could you insist on an urgent referal back to the Consultant? Is the same one still there - have you tried phoning Endocrinologists' secretary to ask? Explain your situation ??

You have symptoms following your medication bring stopped - politely insist on Endo referal.

Write another letter asking for reply to last one ??

Write to Endocrinologist? ?

Write to the local Health Board ??

Write to your MP ??

Hope you succeed in getting your medication back. xx

[Sharcott in reply to Mary-intussuception]

Thanks, yes I can go and see the consultant, but my drs said she didnt want to take me off it on her own she needed his say so aswell lol

[SlowDragon Administrator]

Which CCG area are you?

When originally prescribed/diagnosed as clinical need for T3 was this by an NHS endocrinologist?

You MUST be referred back to endocrinologist to review, GP can NOT just stop T3

british-thyroid-association...

Getting yourself as well as possible

Do you have Hashimoto's? If so are you on strictly gluten free diet?

What are your most recent results for vitamin D, folate, ferritin and B12 ? Add results and ranges if you have any

What supplements do you take ?

[Sharcott in reply to SlowDragon]

Sorry just seen these, yes was edro, I am totally Gluten free and Dairy, B12 was really bad pretty much corrected with Diet. Thank you

[Maggie0652]

endocrinology.org/endocrino...

This is an article from The Endocrinologist written by Mark Vanderpump, former president of the BTA. In it he clearly states that T3 should not be suddenly stopped as clinical need comes before financial considerations. It may help you in arguing for your prescription.

[Hidden in reply to Maggie0652]

Thanks for the link, that’s the clearest I’ve seen this set out.

[Sharcott in reply to Hidden]

Thank you so much I have only just seen this

[Blot in reply to Maggie0652]

I nearly had an appointment with Mark Vanderpump. If he is willing to re-prescribe T3 Liothyronine then it could be worth seeing him. But the price of it was £140 4 years ago. What could it be now.

[Blot in reply to Blot]

monthly prescription that is.

[pffft2017]

This is appalling. Complain, loudly to the practice manager, NHS England, the GMC, anyone and everyone. The squeaky wheel always gets the oil. GPs have no right to overrule an endocrinologist's recommendations. Contact other surgeries and see if they will accommodate your urgent requests. I've had doctors question my use of lio and I always fend them off with the fact that I'm intolerant to thyroxine. I gained 4 stone on that useless stuff. Good luck.

[Sharcott in reply to pffft2017]

Thank you

[Hpbr]

I've fought to get my lio back. This forum has been essential in helping me.

Been off work for 8 weeks now. Still unwell. My system was really shocked. I'm incredibly pissed off with this whole liothyronine scandal. They made me very ill to prove a point.

Anyway I had the temerity to request an increase in liothyronine as I'm still symptomatic. (I'm probably a bit premature here as I've been advised to wait and see a while longer from one of our admins here). Anyway, the GP suggested I come in for a consultation to discuss fibromyalgia. I said no thank you. Can you please refer me to endo. He possibly won't see me, according to GP.

What a mess.

I feel your pain Sharcott. I think letters are in order and copied in to endo, Chief Exec of your trust, your MP, Lord Hunt, Lord oshaughnessy, health minister .... everyone! They are keeping you unwell.

Good luck xx

[Sharcott in reply to Hpbr]

Fibro did you say fibromyalgia you mean symptoms of hypothyroidism

[Hpbr in reply to Sharcott]

Well that was my feeling. I think fix the thyroid first before looking for something else, by getting the medication sorted properly. The symptom list is huge for hypothyroidism. Why wouldn't that be the first thing. I'm wondering because I mentioned potential increase in liothyronine, that the fibro word was mentioned. Better go see what she's got to say. I am slowly improving but the nerve discomfort is getting on my nerves !!!

[pffft2017 in reply to Hpbr]

It sounds like your GP believes lio takes as long as thyroxine to take effect, ie 10 days. In my case I took my first tab of lio in the morning and six hours later I went from sloth to the Incredible Bulk in one fell swoop. Find a GP that will refer you to an endo.

[Hpbr in reply to pffft2017]

First referral kicked back. Endo said along lines, she's on original dose there's nothing more I can do. So asked another GP who's rereferred along with my DIO2 homozygous result. Won't know till 18 Dec whether this one has been accepted. In the meantime, still realky sluggish and not myself and still off work. This is month 3. I'm fed up of all this.

[pffft2017 in reply to Hpbr]

So sorry to hear that, I can sympathise having felt like that for 2 years on thyroxine. Try to find another endo. To say thyroidism is a life threatening condition the docs treat it as with less importance than an ingrowing toenail. Keep trying, good luck.

[Hpbr in reply to pffft2017]

Thank you. If I don't get any joy at GP tomorrow, I'm back to private sector. I want to get back to my job and my degree. I can't afford to be away from work and I don't want to jeopardise my job any longer. I was well enough before liothyronine was reduced to try to wean off. I'm not better and the pain in my joints makes me irritable. All new symptoms. What a complete waste....grrr

[pffft2017 in reply to Hpbr]

Have you considered changing your GP? It sounds like your bloke is more interested in saving NHS funds than your health, like most of them. They should be ashamed of themselves.

[Hpbr in reply to pffft2017]

Yes. I'm seeing a different doctor tomorrow. And yes it was totally and only about cost as I was clinically well. And yes, it was shameful. Further who would have thought it would go on so long with these persistent symptoms, despite the original dose being reinstated on 3 November.... anyway we will see tomorrow x

[pffft2017 in reply to Hpbr]

How did you get on? Good news me hopes.

[Hpbr in reply to pffft2017]

Hanging in there. Any dose change seems to take a while to kick in. Gradually getting bit better. Thanks

[Hpbr]

Not heard from you for a while Sharcott. How are you going?

[Mary-intussuception]

Why did you come off the medication at one point?

Replacement medication for treatment of Hypothyroidism is for life.