It stops now..: Long story short, started out as... - Thyroid UK

Thyroid UK

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It stops now..

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Long story short, started out as hyper, on carbimazole for nearly 3 years, no change, was advised that radio iodine was my best option, so had that 3 years ago. Been on Levothyroxine alone in varying doses since 2013, and not felt anywhere near better. Three years of basically talking to brick wall after brick wall, changing g.p., pleading with endo and nurse practitioner, nothing, won't entertain the idea that I could well have conversion problem, g.p keeps sending me away with more antidepressants.

I have had enough, no-one will listen to me, my health is continuing to suffer, so I have decided to stop taking the Levothyroxine. I have been off it 2 days, so not really long enough yet to notice any change.

Whatever happens will happen, I'm well and truly past caring. I will consider paying for NDT but that won't happen for a while.

I just can't believe how badly people in this country are treated regarding thyroid treatment.

Yes people will think I'm stupid for doing this, but would you continue to take something that was not helping, and making you more ill?

I am not trying to encourage other people to do this either, this is purely my decision!!

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15 Replies

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Jazzw9 years ago

Chelle1, hi and welcome.

Don't know how many posts you've read on this particular forum on HealthUnlocked, but if it isn't many, please get reading! You'll only have to read a couple of pages of them to see that what we do here is listen to people just like you and try to advise what to do next. Usually that advice doesn't include stopping levothyroxine cold turkey, but I can see why you've got to where you are. No judgement here, only concern.

Back to basics. How much levo were you taking? Do you have copies of your most recent blood tests to share? If your FT3 and FT4 weren't in the top 25% of their respective ranges and your TSH wasn't under 1.0, you probably weren't on enough levothyroxine. Have you been referred to an endocrinologist recently? A real one, not just someone who knows about diabetes and thinks thyroid blood tests in normal range are fine?

Nathalie70• in reply toJazzw9 years ago

Hello,

I'm on Carbimazole - 9 months 2.5mg - with clear signs of hypo despite normal results. I had to leave the NHS madness last month as I was unable to work due to muscle pain and fatigue. My GP had let me down and I couldn't get a sick note. My endo despite explaining in his letter that I was showing signs of hypo and was probably going hypo scheduled the next blood test in 3 months.

I went private to a physician that is specialised in thyroid disorders and metabolic bone and muscle disease and disorders. He was difficult to find as he's the only one in Kent with both specialities.

Of course, it's expensive, £170 for a consultation and £200 for a blood test every 6 weeks but my condition has improved by cutting my dose to 2.5mg. He monitors my antibodies which are almost normal to decrease slowly over the next 2 months to reach a low regime of Carbi to avoid a relapse - once a week.

I found his approach crystal clear and I feel at least in control of my disease.

I don't know if you can get private but that's the best thing I did in a while.

Take care.

• in reply toJazzw9 years ago

Hi Jazzw I was taking 200mcg but they wanted to increase it to 225mcg, I haven't taken the 225mcg, just carried on with the 200..latest blood test results were TSH 1.20 and free T4 18.0 apparently I should be feeling on top of the world, as the comment says these results show that your thyroid blood levels are completely normal.

You only have to look at me to see how wrong all this is and has been, for the past 3 years. I look 90, have no energy, can't sleep, can't eat properly, my hair is falling out, my skin is beyond dry, I look and feel like a zombie.

My endocrinologist as with all of them where I have to go specialise in diabetes, nothing further I can do there.

The nurse practitioner claims there is no alternative to levo, (I think she thinks I'm pretty dumb)

I asked about a trial of T3 but no, not interested. I quite literally have nothing left to give, and am not going to continue leaving my doctors surgery in tears (due to frustration at them not listening), and being given more bloody antidepressants..

Sorry I've gone on a bit, but this is kind of therapeutic..

Clutter9 years ago

Chelle,

With no thyroid function of your own you will become very hypothyroid without replacement. You can overcome poor conversion by sourcing Liothyronine (T3) on line and adding a little to the Levothyroxine you are taking. Alternatively order some NDT. Whichever option you choose you should continue taking Levothyroxine until it arrives.

I'm thyroidless and have stopped taking replacement on 3 occasions. By the end of the 2nd week fatigue was very bad. On each occasion it took 6-8 weeks after resuming replacement for thyroid levels to normalise, and then another couple of months for hypo symptoms to resolve. Hairloss and dry skin shedding took almost 6 months to resolve. I gained 3-4 kg which dropped off when I resumed replacement but some people find it very difficult to lose the weight gained.

• in reply toClutter9 years ago

Hi, I think I now understand why gp and endo were so reluctant to trial the T3, could be because it is so expensive!!

Thank you for sharing your journey, sounds like you went through a tough time..

lc1973• in reply to9 years ago

Hi Chelle1

I was in a similar position to you of not feeling any better and given more levothyroxine which wasnt making me better. I had a blood test which showed i needed an increase but i wasnt happy taking more levo as it wasnt helping. I ordered some T3 on line as my GP at the time was having none of it..they say they dont prescribe it but i think it is cost driven as you have picked up upon. To cut a long story short we moved and the new GP i saw listened to me and felt that i have given the levo long enough and because i said i was going to take some of the T3 i had bought on the internet she agreed to a trial of T3 as she said she would rather i got it from her than an unknown source which i am now in month 2 of trialling, it has lifted some of the symptoms i was still getting. The levo i was on has been reduced to 150mcg and i am now taking 20mcg of T3. Personally i think the levo was pooling because it was not converting to T3. I might even reduce the levo further and try increasing the T3. Has your GP tested your FT3? This would be a good starting point but like others have said i wouldnt drop the levo until you have a substitute otherwise this will likely set you back even further in trying to feel better. I understand your frustration though..i threatened my last doctor that i was going to stop taking levo and she said up to you but i wouldnt advise it. You will get lots of good advice on here and have probably come to the conclusion that you need to deal with this yourself either by trialling some T3 or NDT and ensuring your vitamins and minerals are optimal. Hope you find the right answer.

• in reply tolc19739 years ago

Hi lc1973, thank you for sharing, I thought that by changing my surgery would help, but I just keep getting door after door shut in my face, every way I turn.

I bought some Thyroid S online a few weeks ago, but have since read that there are batches being sent out that aren't safe, making me too scared to try it. So even when I do try to help myself, there's always something.

This may come across as me feeling sorry for myself, but that couldn't be further from the truth. This is just sheer and utter frustration at the whole system.

I learned only yesterday, that sometime in the near future, there will be no more T3 available on prescription, where does that leave people?

I for one can't afford to buy it online, or the NDT, there's the safety issue to consider in doing that too.

So I ask again, where does that leave people?

The questions aren't aimed at you lc1973, thank you for taking the time to respond, and sharing your experience.

lc1973• in reply to9 years ago

Hi Chelle1

I had anticipated that i wouldnt get a trial even of T3 on the NHS so am grateful to be trialling it; however i am well aware that this could be stopped at anytime which is very worrying and i am not comfortable with sourcing myself but a lot of folk on here have to because they dont get a trial even and its too expensive to buy on a private prescription here. Therefore if mine were to be stopped which is a possibility i would have no alternative than to source myself as i cant afford to pay privately. I believe i have read on here that some people have written to their MP's but im not sure what effect if any this has made, it seems that the clinical commissioning groups make the decision. Personally i think it is a disgrace that people are being denied the opportunity to get better and i am just grateful that at least i can tell if T3 is working for me or not. My GP told me that she had been told off by the pharmacy for prescribing it for me, i asked who was in charge? The GP's or the pharmacy to which i did not get a reply.

Clutter• in reply to9 years ago

Chelle1,

There are many forum members taking Thyroid-S and there have been no posts suggesting there are, or have been, any issues with batches.

There are constant rumours that NHS will stop prescribing T3. Some health authorities have banned it. Unfortunately, unless or until such decisions are overturned patients will have to buy their own T3 online and self medicate. Greek and Turkish T3 is very affordable unlike the extortionate price of UK T3.

• in reply toClutter9 years ago

That's a relief, and yes I guess they have been to-ing and fro-ing with T3 and whether or not it should be available on prescription. The fact that it can be sourced from outside the UK, and cheaper, is even better.

Maybe there is hope for me trying NDT and T3 if needed after all. Thank you for the reassurance.

9 years ago

I just wanted to say I am sorry for being so full on last night, i'm not usually like this, and the anger and despair just seemed to come out of nowhere really..

Thank you so much to those of you who took the time to read and respond to my original post, and for continuing to do so.

Hope you are all as ok as you can be..?

Thank you once again..

Jazzw• in reply to9 years ago

Not at all - that's why this forum exists. So many people here have felt exactly like you did last night. If you can't vent here, where can you vent?

Sorry I went to bed before I saw your reply - it was my first day back at work after a week off, so thought I'd better try to get in a good sleep...

How many Thyroid S pills did you get? Might be worth giving them a go. Do you need any advice on how to get started with them?

• in reply toJazzw9 years ago

Hi Jazzw Hope work went ok? I bought a pack of 1000 Thyroid S, and also some Nutri Adrenal Extra, I'll be getting some vitamin and mineral supplements in due course, cost permitting of course.

I understand that Levo needs to be stopped for at least 7 days, before starting NDT, and you start off at half a grain, and gradually build up dosage, is this right?

Jazzw• in reply to9 years ago

I don't know why some folk say stop the levo for 7 days. There's no need. And as you've already taken levo in the past, you'd probably be ok starting on a grain - I did. Stay on a grain for a fortnight - and if after that you feel you need more, raise by half a grain and stay on that dose for a fortnight. Then if you feel you need more, raise by another half grain... Etc.

I don't know anything about taking Nutri Adrenal. You may need to start a new post to ask advice about that one. If you get on with NDT you may not need it.