T3 online purchase: Hi, I've suffered with an... - Thyroid UK

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T3 online purchase

cazzie9 profile image
25 Replies

Hi, I've suffered with an underactive thyroid for 4 years and am now on 175mg of levothyroxine. I have gained 2 and a half stone and still feel terrible! My endo specialist said that he cannot prescribe T3 (privately or NHS) but I can buy it online if I want. Could someone message me with a reliable site to use?

Thanks

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cazzie9
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25 Replies
Marz profile image
Marz

Am wondering why you think you need T3 ? 😊 There's nothing on your Profile about your journey. You are on a good dose of T4 so are you converting well ?

How are your levels of B12 - Folate - Ferritin - VitD ? All need to be optimal for thyroid hormones to work well.

Do you have Hashimotos ? How do you take your T4/Levo ? Sorry lots of questions !

T3 is not a weightloss solution but could be helpful if you cannot convert T4 into T3. Do you have any results with ranges ? Sorry I cannot help with sourcing T3.

cazzie9 profile image
cazzie9 in reply toMarz

Hi Marz,

I'm currently trying to get access to my medical records so I can see all the results of my thyroid function tests but in generally my dose has increased over the 4 years as it seemed to lower my TSH and then plateau out after a few months on the new dose.

At 175mg I am now having fever like symptoms, sweating, headaches and still have all the same thyroid issues on top of that .

My doctor insists that the headaches are not thyroid related but these are side affects of the tablet.

Im not really wanting the T3 to lose weight more just to prevent the current weight gain which is steadily increasing no matter what I try. I'm also worrying about further complications of this as the weight is sitting as round my middle.

I am also wanting to have children in the near future and this concerns me too.

My endocrinologist cannot prescribe it he says whether it's NHS or private.

I have taken my thyroid at different times with and without fasting none of this has worked and the headaches and nausea have gradually got worse the more I'm taking.

Ive monitored my glucose levels to see if it was blood sugar. I've gone gluten free to see if that helped. I'm taking selenium, zinc, tumeric, vitamin d......

My folic acid an iron are fine. I've had an MRI on my head and that's fine.

I have had elevated ESR levels aswell. I think my TSH is currently around 3 but the side affects and symptoms are so dibilitating.

My doctor is now refering me to the ear nose and throat specialist to see if it's sinus related!

I'm at a loss!

pastimz profile image
pastimz in reply tocazzie9

I had a TT 6-10-15. My parathyroid glands never kicked back in so I take lots of calcium and calcitriol (I'm in the US). Sometimes my calcium has been too high and I'm nauseous with a bad headache. Have they checked your calcium?? Just a thought.

cazzie9 profile image
cazzie9 in reply topastimz

Thank you! Definitely worth a try xx

Marz profile image
Marz in reply tocazzie9

You really need those results with ranges so people here can help and support you with some thoughts and ideas. Going by the TSH is not the way forward ... TSH is good around 1 when on Levo.

Headaches could be low iron or Low T3 - or something else - even a combination. Do have those vitamins and minerals tested :-) You say Folate and Iron are fine - so what are the results ? If you were told fine - then that could mean they are just in range when that is far from beneficial. Fine/Normal/OK means your result is in range - but it is WHERE you are in the range that seems to be the key to wellness and of course to help the thyroid hormones to work well in your body.

Apologies if I sound bossy - still recovering from a bad Greek bureaucratic day yesterday :-)

cazzie9 profile image
cazzie9 in reply toMarz

Ha ha no worries. I've got to fill in a form and register for online access so I can see all my historic results and then it has to be approved by my doctor before I can see them. At some point under the specialist I've definitely had what he would call a full thyroid function test but I need to check that. My iron was tested a while ago because originally that was why I went to the doctors because my mum has vitamin b12 deficiency and my nan had pinicious anemia. I think I've been tested more than once though but I'll check when I get hold of my results!

Marz profile image
Marz in reply tocazzie9

So pleased you are on the case. Have often read cases here where thyroid levels have been helped with good levels of vitamins and minerals - with conversion of T4 into T3 ...

silverfox7 profile image
silverfox7

Before you go down this root can you tell us your resultsand ranges on Levo. It's only when on Levo we can tell if we are converting properly. We can't do that once we are taking any form of T3 so if that's a problem it's best addressed first. Also some suffer moving over to adding T3 or taking NDT if there are factors that aren't in place first. Many aren't on the correct dose either and just need an increase though at the moment I don't think that's an issue with you. Loads do very well on Levo though we don't hear about them as they are out painting the town red!

If you haven't any recent results ask your doctor to test and also ask for Vit D, B12, folate and ferritin as they need to be optimal to help your thyroid work better.

carroll998 profile image
carroll998 in reply tosilverfox7

Hi my ft4 is on the borderline of high and have been told to cut down on levo but my ft3 is on lower end of normal mt b12 vitd d and folate is normal well within range. Since my Tt 14 months ago my body aches and my energy levels are rubbish I'm also on Calcium supplements because my para not kicked it. Do you think I should try T3 any advice welcome

shaws profile image
shawsAdministrator in reply tocarroll998

carroll998 do you follow this procedure when having a blood test? It gives us, the patient, the best results.:

Always get the earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps keep the TSH at its highest as that seems to be the only result the doctors look at.

A Full Thyroid Function Test can be done privately and we have several labs that do home pin-prick tests. You need TSH, T4, T3, Free T4, Free T3 and thyriod antibodies.

GP should test B12, Vit D iron, ferritin and folate and deficiencies also cause symptoms. All have to be optimal.

There is also an alternative to T3 (liothyronine) the Active Thyroid Hormone. T4 (levothyroxine) the inactive hormone which has to convert to T3. Sometimes we cannot do so effectively.

There is also the original thyroid hormone replacements - known as NDT (natural dessicated thyroid hormones) in use since 1892 and prescribed due to symptoms alone - no blood tests then. It is still in use although the Organisation has had it withdrawn through False Statements.

NDT contains all of the hormones a healthy gland would, i.e. T4, T3, T2, T1 and calcitonin.

Many members now source their own. Levothyroxine can cause weight gain (especially if we're on insufficient).

youtube.com/watch?v=z96M6bm...

in reply toshaws

excellent video

retrieverk9 profile image
retrieverk9 in reply to

Brilliant Video

cazzie9 profile image
cazzie9 in reply toshaws

Great video I've watched a few of these before! I just wish I could get hold of some T3 or NDT.

Shaza-1970 profile image
Shaza-1970

Mine was the same. More interested in giving me a diabetic tablet. I haven’t have another set of bloods but last post I put on someone suggested Hashimoto and that I not not be converting the t4 to t3 I believe it was that way round.

shaws profile image
shawsAdministrator in reply toShaza-1970

No matter what number the T4 and T3 were, if antibodies are present we should be prescribed levothyroxine due to the antibodies alone. It is these that attack the gland until we're hypo but I think the doctors believe that they have still to wait till the TSH is 10 before prescribing.

Ivorheadache profile image
Ivorheadache

Hi Cazzie9 I also put on nearly 3 stone about 10 years ago. The GP I saw retired so I saw another GP in same practice. I found out the GP who retired had treated my hypothyroidism by keeping my TSH level at around10 because that’s the level he started patients on Levothyroxine. He did not believe in over medicating people!!

New GP changed my dosage and with the help and advice from the lovely people on this site my weight gradually reduced. I needed my Vit D and B12 etc. to be tested and then supplemented for my Levothyroxine to be utilised by my body.

I now never believe anyone who says my results are NORMAL.

shaws profile image
shawsAdministrator in reply toIvorheadache

Considering that a TSH level of between 1 to 10 in the UK are classified as 'normal' it's no wonder so many remain undiagnosed. If we lived in other countries if TSH goes above 3+ with symptoms they will be prescribed.

jamalka profile image
jamalka in reply toshaws

shaws I live in Libya, never been a hypo. 2008 been a hyper medicated for 2 years then off meds Oct of 2010, then after that nothing occurred, but In Sep 2018 I went through hell of symptoms for unknown reason, Doc said it me be infection, augmentin 1g for 5 day, vit C 1000 mg, panadol 500 mg, he never ever though of Thyroid, till I requested it myself, then it turned out that I'm turning into Hypo TSH: 10.75 T3: 1.27 T4: 10.76.. tomorrow I've an appointment with my doc, rather he says it's a sub-clinic cause or point it out straight saying that I'm a hypo for the first time of my life, :) on the other hand,. the other doc said that it's normal for the TSH to raise above due to other infection issues said he considered causes with 20 tsh levels as sub-clinic n must be watched with no try even to prescribe med, :'( they have no idea I assume

shaws profile image
shawsAdministrator in reply tojamalka

No - unfortunately they have no idea. I have just posted a resume of my journey too. It is disgraceful that people who have hypo are left in the lurch and have to get on with trying to resolve their ill-health themselves.

People were treated so much better before the introduction of levothyroxine along with the blood tests. Big Pharma wanted to make some profits and I'm quite sure they've made quite a lot, especially for the 'extras' which we are given if we complain that levo isn't making us feel better.

In other countries people are diagnosed if TSH is above 3+ with symptoms but in the UK it must be the worst as they are instructed to only take a TSH into consideration - nothing at all about clinical symptoms. Also to state that no-one should be diagnosed until it reaches 10 is laughable were it not so preposterous.

You are hypo - not sub-clinical. Maybe give him a copy of the following and maybe it might do some good for other people who consult him.

thyroiduk.org.uk/tuk/testin...

bellk profile image
bellk

First of all, check if your consultant can't or won't prescribe, see what the policy of your local CCG is. Certainly in the last consultation, the government backed down from banning prescription of Liothyronine. My gps have prescribed it for me for over 10 years. I buy it now from Germany with a private prescription from my GP because the new brands licensed in this country did not suit me. The German brand makes me feel better, my skin is actually hydrated and over active bowels(a problem since I started taking Thyroxin over 20 years ago) have settled down. I do have more of the thing where you forget what you are saying mid sentence, which always used to be tied in with lowerthyroid levels, but I can't have it all!

SlowDragon profile image
SlowDragonAdministrator

Is your endocrinologist NHS? If he believes you have clinical need for T3 he can and should prescribe a three months trial.

british-thyroid-association...

Clear legal outline

healthunlocked.com/thyroidu...

Which CCG area are you in?

But before starting T3 it's essential to run full Thyroid and vitamin testing FIRST

Add results and ranges if you have them already

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common and can reduce conversion and are needed for T3 or T4

Ask GP to test vitamins and antibodies if not been done

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you do your tests?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Dunkenb profile image
Dunkenb

Push to get a T3 test. My GP only did it when I suggested that I was going to get my own T3 from the internet.

I now get it on prescription from the NHS and my weight gain has stopped.

cazzie9 profile image
cazzie9 in reply toDunkenb

That is interesting! I think that is worth a try, I was considering home testing anyway xxx

Angep1417 profile image
Angep1417

Lol this makes me laugh, ive been on Levo and Armour/Erfa for years, it doesnt do anything for my weight booooooo... Can someone PM me please as where to get it online as my docs retiring soon, thank uuu x

Burnthill profile image
Burnthill

I would also be grateful for info on an online site. My dear friend has been prescribed triiodothyronine, but it looks like her GP practice won't give it to her. She's devastated, and I'm trying to find info to help her. If someone could message me, I'd be grateful.

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