Thyroid UK
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Hi everyone.

I am 20 years old, my endo took away my T3 and so now I am back to feeling unwell. I will be no longer feeling like myself, I’ll just be getting Levo and had my dose reduced from 175mcg to 150mcg Levo. So now looking to source my own T3. Where to get this please? Diagnosed 2011 with hypothyroidism and trouble converting T4 to T3. Thank you

TSH 1.20 (0.2 - 4.2)

Free T4 19.3 (12 - 22)

Free T3 3.7 (3.1 - 6.8)

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healthunlocked.com/thyroidu...

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

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Hi and thank you, currently waiting on referral for second opinion to endo within the hospital my current one works in. GP says I need T3, he cannot understand why it was stopped. GP is very pro T3, he wants me back on it.

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How refreshing

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Why did endo stop it?

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

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

What are you vitamin D, folate, ferritin and B12 levels like

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Hi, my endo stopped it because he is anti T3 and does not believe the benefits of it. My previous endo decided to give it to me as a trial and within a few days of taking it I felt better. Yes I have Hashimotos.

TPO antibody 376 (<34)

TG antibody 266.8 (<115)

I supplement folate, iron, B12 and vit D, they are currently

Ferritin 45 (30 - 400) iron deficient taking 210mg ferrous fumarate once a day

Folate >20 (2.5 - 19.5) folate deficient taking 5mg folic acid once a day

Vitamin D 63.2 (50 - 75 suboptimal) vitamin D deficient taking 3000iu oral spray with K2 MK7 and magnesium (800iu did nothing to raise my levels)

Vitamin B12 293 (190 - 900) before injections, is now probably above 900?

Everything tested back in December 2017

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Definitely see a different endo urgently

Vitamins will get much worse without T3

Your ferritin is not brilliant now. Nor is vitamin D.

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

Are you strictly gluten free? If not have you tried it

Your antibodies are still high

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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Hi not gluten free

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Hi EmmaJ17 - I am pretty new to all of this too and as yet have not got my meds steady - I have my first appointment with an Endo in 2 weeks, however SlowDragon mentioned going gluten/dairy free to me previously as I was reacting to my Levo (the one I had had lactose in it). I also have Hashimotos.

I have done this diet now for 2 weeks and have been very strict with what I have been eating - I absolutely can not believe how different I feel. I was in an awful lot of pain from head to toe/had many, many hypo symptoms and now I feel a million times better. I had a coeliac test that came back negative, however I decided to just go for it as I was feeling like my body was dying a slow, painful death and I just don't want to feel ill any more.

Give it a go - so far I have found it not as bad as I thought, you just have to plan ahead and its all a big learning curve as to what you can/can't have. I find the dairy free element the worst as I have found out I am allergic to milk and so many foods contain it!

Morrisons and the other supermarkets have quite big free from ranges - I haven't found any gluten free bread that I like yet so just decided to stay off it. In terms of lunch at work (this was my biggest fear of what to take) I have found the 'Kirtsy's' range of gluten/wheat/dairy free microwave meals to be superb - they are so nice and really taste like they are home cooked.

In only two weeks I have lost so much swelling its untrue on my face/abdomen/even my feet! People even keep asking me if I've lost weight so it must have done something! Not weighed myself yet - thought I might do that once a month.

Thank you SlowDragon for your advice on gluten/dairy free - in my eyes its a must! :-)

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Best bread in my option is M&S brown seeded or new brown oaty. Good toasted

They also do brown seeded thins that make good sandwiches

Yes I never had any gut symptoms at all. Gluten free diet was astonishing. I only tried it out of desperation too

Medics only consider coeliac (tested negative twice).

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Ooh - not had a look at the M & S free from range yet - will give it a go. Do they have a decent range?

Not sure how accurate the blood test is - doc said you have to eat gluten in 2 meals every day for 6 weeks before a test to be accurate however I had my test after 1 week - maybe they should wait for 6 weeks and tell you to eat gluten every day first before testing?

Anyhow - I couldn't have waited that long - I knew I was reacting to it and to milk so like you say, desperation comes into play. So glad I listened to you!

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Yes M&S really good on gluten free. Not just the "free from" section either

Lots of ready meal options are gluten free

Even ones that you would think wouldn't be - eg lemon chicken with breadcrumb on top of sauce - crumbs are rice based

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I will deffo have to try the lemon chicken - I love that!

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Might have milk in..... I am not dairy free

But there’s a lot of other options if it does

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I'll have a look at the ingredients - hopefully not! ;-) I will go and have a good look at what they have!

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They have a small range of GF but as more buy they probably will increase.

I particularly like their Rich Fruit cake which is quite succulent with cherries etc. You don't feel so deprived.

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Yeah - it does seem that more places are getting more choice now. My boss ordered pizzas for everyone yesterday (I didn't have any though) from Pizza Hut but it wasn't until after we had ordered that we noticed you could have a gluten free base and also select no cheese! We know for next time though! ;-)

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Well, it is something to look forward to and it shows that some restaurants etc are providing gluten-free.

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Leon is brilliant for GF

Only in big cities though

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Feel my pain - I’m now on the Amy Myers which is not only gfree - & dairy free but GRAIN free ! So after 7 years of enjoying that yummy M & S gfree bread I now don’t have that either 😩but the difference has been life changing -

I try not to buy GFree stuff from shops as it tends to have loads of sugar guar gum & stuff added - my advice cook from scratch - make big batches - so plenty of roasted veg - & good quality ( pref grass fed or organic meat ) fish - use coconut enzymes instead of Tamari ( which contains SOY ) .

This can be taken for lunches etc

Home made soup in winter especially good - quick & easy to heat up - again make loads 👍

I know it’s daunting - but once in the habit - it changes Hashimotos lives IME

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I noticed a difference recently while on holiday being grain free. But it's a bit of a daunting prospect long term...something to consider.

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I agree - it’s daunting -

I get very rebellious at times - when I’m

Cutting lovely sour dough bread for hubby !

But for me - I believe the Amy Myers autoimmune diet made the MOST difference ( even before I came

Off Levo onto Nature Throid -

And I was previously very health food conscious - we get a a Riverford organic veg box weekly ( for ten years ) I’ve been Gluten free for over 6 or 7 years -

So it

Must be the cutting out grains

Dairy

SOY THATS MADE the difference -( SOY IS IN EVERYTHING !) but it’s tough - going to parties etc

I take vegetable crisps in my handbag ! I also take some raw chocolate or some dates in bag incase I’m tempted ! ( not supposed to eat the deadly nightshade ) so thats potatoes - crisps - )

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I noticed significant difference cutting soya lecithin out

Had already cut obvious soya months before that

I am not dairy free

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Soy lecithin is in Dsiry Milk ! Once you read the labels it’s shocking what they add. -

I would kill for a piece of blue cheese on a cracker with red wine 🍷 now n then !

Once I have my Nature a throid dose right & have been on an even keel for a while then maybe I can have now n then !

I do have alcohol wine now n then -

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I know it's in virtually all chocolate. Divine is soya free and Waitrose own dark chocolate is too

However discovered just today Cadburys mini eggs are ok, sunflower lecithin and tapioca flour

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Thank you :)

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I was diagnosed with 100% Hashi's curse 20+ yrs ago and have only recently been advised to avoid gluten/ eat FODMAP. Wish I'd known years ago lol

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My GP LOOKED dumbfounded when I gave her my Amy Myers letter to your doctor - & why I’m coming off Levo & on this autoimmune diet - I lost nearly 3 stone in 3 months ( I Mo - not fat but inflammation ) my boots zipped up ! When I eat gluten etc they won’t in a matter of 24 hours

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Snap 20 years of hell. Just told I was not coeliac.

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Thanks yes I have digestive issues with FODMAPs but because there is so much to avoid I ended up starving :(

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Get you kitchen organised. Swap out gluten products for other GF ones

Initially would suggest just gluten free. Some people start with dairy free too, but if you don't suspect dairy, just start with gluten

But everyone needs to avoid soya really

Coeliac UK has great website. Read up about what to avoid - basically anything with wheat, rye or barely.

Masses of gluten free books, magazines, support group websites with recipe ideas

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SlowDragon

Your on the MARK . Going gluten dairy free made a BIG difference for me .

THANK YOU !!!! Keep driving this lesson home .

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Maybe copy him into the letter you send to your MP and anyone else you think warrants a copy plus highlight the BTA's recommendations and Dr Toft's 'counterblast'.

healthunlocked.com/thyroidu...

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Hi Emma

In my opinion it seems it depends on which nhs trust you come under as to wether they give you T3 .it is a far more expensive drug than T4 and therefore in a lot of areas they are reluctant to prescribe it . I had to beg my endo and eventually I received it but in my case not much change . Good luck

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Thanks I have a clinical need for it and my GP says there is no reason why I shouldn't have it.

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EmmaJ17,

Apart from the sheer damn arrogance of withdrawing T3 which BTA said should NOT be done when patient is doing well on it your awful endo has reduced your dose when he should have increased it to compensate for the lack of T3.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

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Sorry to hear this. It's the manufacturer hiking the price to astronomical levels to blame! Nhs looking to try to save money have no idea of the impact on people prescribed T3 and having it withdrawn.

Out of interest experts on here, how does a person who does not convert t4 very well currently on T3 do instead on natural desiccated thyroid. Would that be helpful or not?

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Do you work or are you still studying? If your lack of T3 is affecting your work/studies, you have to put this argument forward to your (hopefully) new Endo. This is awful treatment (or lack of) that you are receiving. Your T3 should be at the upper end of the range.

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Yes I do work and I have been caught crying at my desk

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How long has T3 been stopped?

Get new blood test including vitamins and coeliac test ASAP

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T3 stopped 6 months ago

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So what were your results before it was stopped - or have I missed something ??

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Hi you haven't missed anything at all. I was taking 75mcg levo and 10mcg T3

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.3 (3.1 - 6.8)

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This result was about perfect

Endo was completely wrong to remove T3

Can you add results from before starting T3

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Yes (175mcg levo)

TSH 1.30 (0.2 - 4.2)

Free T4 19.2 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

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Confirms you are poor converter (like many of us with Hashimoto's)

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GP can prescribe. He has to refer to CCG and state your case. There will be no problem at all if you’ve been on it. Guidelines are very clear on this.

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Definitely see if GP will prescribe

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Or self medicate while you get another endo

But will need to check vitamins first and Gluten free very likely to help too

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I have vitamin results will post

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In the UK, Drs will NOT prescribe any amount of T3, no matter how low your T3 reading is (which they very rarely test for anyway). Nor will they increase T4 beyond mid-range for tests. The assumption is that if you take synthetic thyroid, you are 'fixed' and have to put up with very low thyroid symptoms for life. In this country, only a superfit heavyweight sportsman would be allowed a dose as high as your's.

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Some of us have managed to get adequate dose of Levo and T3 on NHS. But it takes persistence and determination to stand up against intrenched incorrect ideas on current totally inadequate thyroid treatment. (And luck if you find a good GP)

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Hi my GP said he will prescribe it

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Brilliant, but you must recheck vitamin levels FIRST

Re introduce very slowly.

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I'm commenting on my previous post.

It seems other people in the UK have been prescribed T3 by Drs and that my being told it is never allowed here is an NHS smokescreen to cut costs. After 20 years I saw my 1st endocrinologist, who ignored my low T3, very low thyroid symptoms and refused to allow me a T3 trial, raise my T4 to previous levels or do any further tests. I do feel we are getting a 2nd rate service compared to diabetics, who are allowed the meds they need.

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Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

Push and don't give up.

As you are gluten and lactose intolerant you clearly have badly affected gut biome. You will most likely need addition of small dose of T3

Do you have Hashimoto's??

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If your were on T3 and well on it they are not allowed to remove it

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