Thyroid UK

Celebrations!!! I feel fantastic! If I can get there then anyone can!

I have written my story in 3 parts so I won't bore you all but after reading about so many of you struggling I think it would be easier to write this blog in the hope that it will help some of you.

After 4 years of feeling very ill, spending months in bed or on the sofa and just existing I am finally starting to return to the real me, I feel so good!

The answer for me is 200mcgs of purified levothyroxine (which I have been on that dose for 9 months) and 1 grain of naturethroid at lunch-time. My TSH is -0.02 and my Free T4 is 25 (12-22) and my Free T3 is 5 (range up to 6)

I have just had a wonderful Christmas as I was able to shop for it, I felt cheerful and could easily cope with entertaining, partying, late nights, noise etc. Imagine the opposite to know what the last few Chrismas's have been like.

I have lost friends but hey ho, I have gained lots more. I have a new hobby and the smiles on my husband and children's faces say it all when I get excited about being able to live again. I have been able to walk our dog all around our local park instead of riding my mobility scooter.

I am in the process of writing to the GP's and 8 specialists that I have seen in the hope that it will help others. I would also like to start a support group (I live in Solihull).

I think that I will always appreciate feeling well and feel for all of you that are struggling as I certainly know how you are feeling.

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great to hear such positive news

x

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Hi Suze,

I am so pleased for you, it gives us all hope.

Thanks for posting such positive comments.

Lin x

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That's so great Suze! It's good to see you back on the boards btw - you've been very busy I see! :-)

xxxx

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It's so good to read of positive results. Whilst it is undoubtedly appalling that it's taken over four years for you to reach this point, it does at least prove yet again that there isn't a 'one size fits all' solution to thyroid problems.

I'm very interested to know how you got prescribed the purified thyroxine - did you ask for it yourself or was it suggested by an endo?

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Fantastic, really, really pleased for you and yes it does give me hope too. Long may it continue. What is purified thyroxine?

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This is what we are aiming for at Thyroid UK! I'm so pleased to hear this Suze!

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Levothyroxine is a tiny spec so has to be put with something and usually different ingredients are put with it to act as a binder/filler, there is often talc in some tablets. Purified levothyroxine is basically just the levothyroxine with (in my case) calcium phosphate. They are in capsules (the ones that you can pull apart). They are very expensive as they are specially made by Martindale's.

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I had heard of purified levo as a cousin of a friend has been taking it for 27 years after his GP looked into it. It was when I saw my Endo who I see now that he suggested taking them. It was quite ridiculous when I had to collect the prescription from Sheffield until I convinced my GP that she should prescribe them, and then it was me who liaised with the local Pharmacist. I have a repeat prescription every 3 months as they will not supply more at one time.

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Thanks for the hope Suze, just need to get believed first x

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Hi Suze,

Thats so good news. You give me hope for the future Im so glad you are feeling better xxxxxxxxxxxx

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Had you tried armour before the purified levo ?

I'm so glad your feeling better x I'm seeing my endo soon and would be intrested to know .

Thanks Jan x

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thank you all for your lovely comments.

Nanniejan, yet I had tried armour, I have also tried T3 and standard levothyroxine and nothing made any difference. I just felt much worse when I took the standard levo.

<b>Updated on Jan 11 2011 10:51AM:</b> If you look on the left there are a list of bloggers and I am the 8th one down, click on my name and you will see my previous blogs - my story is in 3 parts.

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Thanks Suze for your reply ,one more question do you get this from your GP or endo ? and what else do you take with it ? what were your symptoms before you started on these meds ? sorry so many questions but would love to feel human again and would give most anything to stop my hot flashes and get slim again, if only , thanks Jan x

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Hi Suze

Congratulations and well done!

Would you mind saying what is your new tablet called?

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It is simply called levothyroxine with calcium phosphate as it is specially made at Martindale's in Brentwood. Endo's refer to it as purified levothyroxine

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Hi Suze,

I'm very pleased to hear that you are feeling so great, you have waited a long time and deserve it, keep well.

Lv, wakeham.

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Hi Suze

Glad to hear such good news from you I can imagine the joy you feel getting your health back on track.I am v interested in the purified thyroxine- do you have to order it yourself or do you get on NHS ?

Alli

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Thank you all for your comments.

Alli you cannot buy purified levothyroxine, it is made up by martindale's on prescription

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So how does it work then? Do you get a levo prescription in the usual way from the GP and then send it to this particular pharmacy to be made up?

Alli

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Doc prints prescription stating levothyroxine with calcium phosphate in the dose sizes and then the pharmacist orders them with the account they have with martindales and then they take two weeks. They are very expensive too

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do you know how much?

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yes, double the cost of ndt

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I know this post is five years old now but wow! What a wonderful post it is. I hope you're still feeling great x

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Elven yes I just wrote a follow up last week .....

healthunlocked.com/thyroidu...

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Interesting post. I have finally received liquid thyroxine, a small bottle that costs the nhs £170. The pharmacist said it was 20 times more expensive than standard levothyroxine.

Day one on 75mcg I felt so much pain. I think the dose is too low, but also the headaches. I can’t imagine being patient enough to find the right dose when thyroid -s doesn’t give me such problems.

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We know our own bodies - the rubbish that is in standard Levo tablets is awful!

Yes thyroid-s works out a lot cheaper than the ndt brands from USA.

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What "rubbish" would that be ?

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Talc for one thing - you can find out exactly what the exipients are with drugs, like maize starch too.

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Luckily I'm not bothered what's in them, if it works then 👍

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Dear Sue, I am almost in tears reading this. Today I have been lying in bed recovering from doing too much yesterday— that is, cleaning the fridge, making a menu for the week, shopping list and doing the weekly shop. Pre-Hashimoto’s this would be just part of my day’s activities! Now I need a day to recover.

So today I’ve been searching and reading old posts to keep me going. It is absolutely lovely to read this after reading your travails in getting to this point of feeling great! Thank you so much for documenting and sharing your story. It really helps, while I am very very very slowly improving.

Wishing you good health and happy days!

BBxx

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I actually need to to make another update. Truth be told I would actually do things differently as I have learnt so much more in the past few years.

I have met so many people running the midlands thyroid support group. I used to think that we needed to search for the right doctor, the right tablet, the right dose is the answer to get better. Now I would find the right Nutritionist or functional medicine doctor and work through until I found a way of lowering my thyroid antibodies.

I have worked through getting rid of as many toxins as possible. I got rid of the microwave, the toxic air fresheners, cleaning and laundry products. No more toxic toiletries, hair dyes; perfumes etc. I now have pure filtered water.

I follow a gluten free diet and almost dairy free. I make my own sourkraut, I have learnt so much reading books and listening to documentaries. I am still learning and improving.

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Thanks for that insight Chippysue. Glad to hear you’re still going well and obviously taking good care of yourself and health. All the best!

BBxx

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