Me again :-? ... what should i do for the best!?? - Thyroid UK

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Me again :-? ... what should i do for the best!??

ThyroidObsessed profile image
21 Replies

So i have now tried 3 times to increase to 100mcg of levo and each time sends me into a severe depressive anxious crazy mess!!

I have tried every brand to no avail..

I was on 100mcg of levo for 8 years with steady levels and i was ok.. what changed??

Vitamins are all great...

Iv bought some t3 but am too wimpy to take it without actually having confirmation from an endo this will be my 3rd nhs endo that i will be seeing soon and hoping he says t3 is needed...

Tsh - 10.1 (0.27- 4.5)

Ft4 - 20 (11.0 - 23.0)

Ft3 - 4.3 (3.1 - 6.8)

Symptoms depression

Up and down moods everyday

Anxiety

Breathlessness

Head pressure

Thinning hair

Energy levels ok

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ThyroidObsessed
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21 Replies
Clutter profile image
Clutter

ThyroidObsessed,

You don't need more Levothyroxine because your FT4 is already high in range. There's no point in increasing it when it makes you so unwell so stop trying to treat your TSH. If you feel undermedicated add 6.25mcg T3 to 75mcg Levothyroxine to raise your FT3.

ThyroidObsessed profile image
ThyroidObsessed in reply toClutter

This is the problem clutter, do i need it?? But then why is my tsh high when it was always below 1 and i was ok then??.. I hear so much on here about people with no energy and aching everywhere and cant lose weight, i do not have these symptoms so thats why i question it..

Clutter profile image
Clutter in reply toThyroidObsessed

ThyroidObsessed,

If you don't have symptoms of hypothyroidism then you don't need more Levothyroxine or T3. You need your endo to investigate why TSH and FT4 are high.

ThyroidObsessed profile image
ThyroidObsessed in reply toClutter

The symptoms i have are as above are they hypo symptoms??

So what would happen if i took a quarter but my body didnt need it?..

Clutter profile image
Clutter in reply toThyroidObsessed

ThyroidObsessed,

You aren't undermedicated so I don't think they are likely to be hypothyroid symptoms and they may be part of whatever is causing you to have high TSH and high FT4.

FT3 isn't high in range so I don't think you'll feel overmedicated if you take 6.25mcg T3 but if you do it will be out of your blood in 6 hours so any symptoms should resolve quickly.

ThyroidObsessed profile image
ThyroidObsessed in reply toClutter

But i thought it was low ft3 that caused hypo symptoms and mine is not even mid range?..

Clutter profile image
Clutter in reply toThyroidObsessed

ThyroidObsessed,

Nevertheless 4.4 isn't low. If you want to see whether you feel better with higher FT3 take the 6.25mcg T3.

ThyroidObsessed profile image
ThyroidObsessed in reply toClutter

Ok thanks clutter x

Silver_Fairy profile image
Silver_Fairy

And what will you do if he says T3 is not needed?

ThyroidObsessed profile image
ThyroidObsessed in reply toSilver_Fairy

I know what will i do?? I will have know choice but to self medicate...

Just scares me without that little bit of confirmation...

3 of my gp have said i need a bit or something with both in, but they havent got the power to prescribe it... unless endo agrees...

Silver_Fairy profile image
Silver_Fairy in reply toThyroidObsessed

But, it’s not the power to prescribe you are scared of, it’s taking the T3 and you already have 3 GPS in agreement that you need it.

We often see evidence on here of rubbish Endos and also of very good GPs (ok not often but..)

6.25 is a very small dose, I haven’t seen anyone who has ended up only taking that much. You will know very soon if it is too much, although I doubt it. Or if it doesn’t suit you, but that’s another post. Go on, give it a try, we’re here if you need help :)

shaws profile image
shawsAdministrator in reply toThyroidObsessed

One of our Advisers and his research team have found that a T4/T3 combination suits many who don't improve on levo.

Some of us have bad reactions to levo, although when first starting you aren't aware that it could possibly be it. As the months past and doctors/endos say you are 'fine - you don't need any adjustment" I think that's when we start to query these statements and search the internet to find many, many questions putting up similar posts.

Research has also shown that a 3:1 (T4/T3) has been preferred by patients.

ThyroidObsessed profile image
ThyroidObsessed in reply toshaws

Why was i ok for 8 years on levo though why now?? Why can i not increase to 100mcg without severe mental side effects after being ok for 8 year? I just dont get it!?

shaws profile image
shawsAdministrator in reply toThyroidObsessed

There could have been changes in the product, i.e. they may add or remove something and it doesn't suit some of the people who used to take it and wonder, like you, why? The pharma companies don't notify us and I know in the past there have been queries asking ' is anyone having a bad effect on ............ as I am having side effects I didn't have before'. Usually you will find more than a few have had similar experiences. We did with T3 in the past with Mercury Pharma T3.

ThyroidObsessed profile image
ThyroidObsessed in reply toshaws

Yeah that makes sense now... i just cannot put myself or my kids through it again i just turn into a wallowing mental anxious mess when i go up to 100mcg and clearly my ft4 says i dont need anymore levo... i cannot even really blame a certain brand now as i have tried them all and i cannot tolerate 100 on either brand!...

Im seeing yet another nhs endo soon and hoping he can see what everyone else can see with my levels that have now been dodgy for a yearand a half...

Is the mercurypharma brand of t3 ok now then, or is it still not suiting people?

I do have some turkish tiromel t3 but havent been brave enough to take it yet!

Im worried my endo is just gonna say im not taking my levo properly it makes me so mad!!! iv gone through hell and back with the higher doses but still taking the bloody things every morning! ..

shaws profile image
shawsAdministrator in reply toThyroidObsessed

It is not the patients who've improved with T3 or some T3 who make statements about T3 - scary statements - but the professionals who don't believe us and want us to take levo alone. They will prescribe or diagnose something unconnected to our hypo but when we read a list of clinical symptoms we will most likely find that we have a number of them. Due to not being on the correct dose or the thyroid hormones that make us feel well.

ThyroidObsessed profile image
ThyroidObsessed

Very true...

But then iv also got my unsupporting partner who says i could be taking anything because iv bought it from turkey online and that it could be made with any old crap..

Even though iv explained people on here take the same one and that iv been given the source by someone on here..

SilverAvocado profile image
SilverAvocado in reply toThyroidObsessed

It is always very scary to start. I was absolutely quivering with fear when I took my first NDT tablet. I continued to feel very nervous for months, especially before it was confirmed to be doing well.

It's now 2 years later and I'm much better than I ever was on NHS treatment. So at this point in not scared anymore because I know I'm doing the right thing.

But there's definitely nothing unusual about being terrified! I think everyone feels that way when they have to buy their own medication on the Internet.

If you bought your T3 from a website recommended byin a member on this forum I'm sure it will be fine :)

ThyroidObsessed profile image
ThyroidObsessed in reply toSilverAvocado

Yeah it was recommended on here bought from an actual person i think their based in the uk though as it was uk bank account i paid into, but the tiromel are from turkey x

ThyroidObsessed profile image
ThyroidObsessed

Thank you that gives me a bit of piece of mind x

Mamapea1 profile image
Mamapea1

Please don't worry ~ just take a tiny smidgeon each time, and once you've established you're ok, increase very gradually. Don't stress about GP or endo 'approval' ~ prescriptions from the likes of them have hospitalised and nearly killed me twice!! I haven't got time now, but will try and reply properly later. I was ok (although hypo symptoms, but not fibro/me) for 9 years ~ back to work, etc., then suddenly, floored again ~ I know your symptoms are different, but still amounts to T4 no longer working.

I know it's daunting, going it alone, but if you don't try...... xx

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