Is anyone on T3 only and experiencing anxiety a... - Thyroid UK

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Is anyone on T3 only and experiencing anxiety and symptoms of worrying lots? Wondering if this is a menopause or thyroid issue..

Angie33 profile image
19 Replies

I was currently taking metavive for my under active thyroid, but due to self dosing it wasn't working as I was on too high a dose. When working out (seems a life time ago!) my heart rate was 200bpm. I therefore came off metavive and now seeing an endocrinologist. I am now on T3 only as thyroxine didn't agree with me due to the lactose in it. My body doesn't convert T4 to T3.

Wondering if I still need T4 albeit without lactose, to balance these hormones or if it is a menopause issue. Such a mind field! My hairdresser also pointed out how my hair is a very fine texture these days and her other clients on HRT don't have this issue. Trying to make sense of it all and finally live a 'normal' life again..

Any advice would be grateful. I am so close to reverting back to metavive and getting my GP to monitor me despite her not agreeing with metavive as they can't guarantee how much of a dose I am on each day due to the nature of metavive coming from pigs thyroid.

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Angie33
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19 Replies
tattybogle profile image
tattybogle

:) please add:

what dose T3 you are taking.

for how long.

blood tests results from that dose / or results on previous dose .

Angie33 profile image
Angie33 in reply to tattybogle

Thank you for replying! Much appreciated.

I am taking 40 mcg of T3 (Thybon Henning) Started taking these in Nov last year and slowly worked up to this dose.

My T3 is currently at 3.5 (range of 2.4 - 6.0)

T4 - 5.4 (range 8.0 - 19.1) endo not concerned with this. I am a little due to hormonal imbalance.

TSH - 0.06 (range 0.35 - 4.94)

tattybogle profile image
tattybogle in reply to Angie33

How long have you been on 40mcg ? (last post said were about to go up from 15 to 20mcg )Was that blood test done after being on 40mcg for at least 6 weeks ?

Angie33 profile image
Angie33 in reply to tattybogle

I've only been on 40 mcg for 6 weeks. Last test I was on 35 mcg for 4 weeks but out of desperation as going on holiday, endocrinologist gave the thumbs up to up it to 40 mcg. Therefore, last test I had been on 40 mcg for t weeks.

Yeah keen to take some T4. Although my body doesn't convert T3 to T3 so not sure if I will benefit from T4. I will speak to endocrinologist. Just a shame I have to wait another month. A month seems a long time just now.

tattybogle profile image
tattybogle in reply to Angie33

ok , if that test is only 2 weeks on 40mcg ? then fT3 is possibly a bit higher than 3.5 now. But obviously fT4 will still be low since you 're not taking any.

It makes sense to me to have some T4 too, and try to get FT4 into range at least, unless every brand available makes you feel worse .

Even 'poor converters ' still covert some T4 to T3.. they just don't do it very efficiently ..... but some systems in the body prefer to get their T3 from converting it from T4 inside their cells.. so it seems daft to deny them this opportunity if you could let them have some.

a month feels long , yes.. but i find even a month is too short a time to know how you will feel on a new dose once it's properly settled .... personally if i change levo by just 12.5mcg , the first 5 weeks are a not a true representation of how i will be feeling after 6-8 weeks , 8-12 weeks is a much better time to asses how it's working.

I have come to the conclusion that taking bloods and making dose decisions before 6 weeks is asking for trouble... which in the long run makes finding the best dose take MUCH longer than waiting a couple of months for a dose to settle would have .

Angie33 profile image
Angie33 in reply to tattybogle

Thank you so much for your informative reply. Very interesting and makes perfect sense! I will request a non lactose T4 as well as my current T3 and be patient! :-)

SlowDragon profile image
SlowDragonAdministrator

Day before test did you split T3 into 3 doses and take last 10mcg dose approx 8-12 hours before test

Ft3 result looks low

Important to regularly retest vitamin D, folate, ferritin and B12

Presumably you are on lactose free diet

Why not try adding 25mcg lactose free levothyroxine or even liquid levothyroxine

Discuss with endocrinologist

Teva, Glenmark or Aristo (100mcg only) are all lactose free

Angie33 profile image
Angie33 in reply to SlowDragon

Thank you, good advice! Do you feel T4 may help my hormone imbalance?

Yeah I always split my T3, 10 mcg 4 times daily. I also take my last T3 12 hours prior to being tested following morning.

Yeah on a lactose free diet. Advised as I have underlying ME. Thankfully overcame that illness. Thank you for the advice on the T4 brands lactose free!!

Buddy195 profile image
Buddy195Administrator

I’m not on T3 only, so unfortunately I can’t advise on that. I just wanted to say that my anxiety is worse if my thyroid medication and key vitamins (ferritin, folate. B12 and VitD) are not optimal. I also found that I needed to change my HRT to include micronised progesterone. There’s great information on HRT on Louise Newsom’s Free Balance App.

FancyPants54 profile image
FancyPants54 in reply to Buddy195

It's Louise Newson. (Not Newsom.) balance-menopause.com

Buddy195 profile image
Buddy195Administrator in reply to FancyPants54

Typo sorry!

FancyPants54 profile image
FancyPants54 in reply to Buddy195

It happens a lot on here. And the link makes it easier for people to find so I wanted to add that. The info there is superb.

greygoose profile image
greygoose

I'm on T3 only, have been for years. I cannot tolerate T4, for some reason (and I've looked into all the reasons). Anxiety is the first symptom to hit me if my dose is slightly off - and it only has to be a very tiny bit off. Worrying goes with the anxiety.

The hair is a thyroid thing, thing, I think. I have very thin, fine hair and I'm not on HRT. But could also be affected by low nutrients. Iron is very important for hair. :)

limonene7 profile image
limonene7

By the looks of it, you're T3 is only about 30% through range. I find i have apathy when my T3 is very low in range but conversely, I seem to have more anxiety when my T3 is not high enough in range. 🙂

Angie33 profile image
Angie33 in reply to limonene7

Ah! That is very interesting!! Thank you!!

I did up my dose to 50mcg for 2 days but my heart rate jumped to 153 bpm when just sitting. I am also constantly very light headed and that is on 40 mcg. It's all so confusing. Takes so long this trial and error malarkey.. 18 months in..

DippyDame profile image
DippyDame in reply to Angie33

Good grief...that was far too big an increase and far too soon.It is absolutely essential that you wait at least 6/8 weeks to allow the body to adjust.

There is no quick fix as in paracetamol for a headache and trying to rush an increase is asking for trouble because your system will become out of kilter and you will suffer.

Been there....got the Tshirt!

It took me about 2 years to get even close to my therapeutic T3 dose.

I had to start from knowing very little about T3 despite being on levo for over 20 years!

I'm in the relatively rare position of needing high dose T3-only to function, because I discovered that I have a form of Thyroid Hormone Resistance...so have done the hard yards!

Increases must be low too ( a quarter tablet - either 20 or 25mcg) so that you do not miss the therapeutic dose and become overmedicated

T3-only is the last resort and not the panacea of all ills.

Did you exhaust trials of T4/T3 combo before trying Metavive, then T3-only?

Poor conversion is not a reason to use T3-only, most people do well on a combo.

And...if lactose is the problem then ask about lactose free levo.

Bottom line we really need to see (if possible) full thyroid labs but this needs to be done after 6 weeks on a steady dose to give an accurate reading

This includes- TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Have you optimised the above nutrients in order to support thyroid function?

ME/CFS, a group of unexplained symptoms, not a disease, can be a symptom of low T3

frontiersin.org/articles/10...

"The most remarkable finding in this CFS case–control study was a higher prevalence of the “low T3 syndrome,” attributable to a subgroup of CFS patients"

When undermedicated my hair became fine and had what my hairdresser called " a light waxy coating". He suggested " maybe thyroid related". It has now recovered!

Anxiety can be a symptom of undermedication as well as overmedication.

You are absolutely correct, it is a minefield, and one we should not be left to find our own way through!

Suggest you enquire about lactose free levo

Then work towards a T4/ T3 combo...you will need to be referred to an endo.

And be patient....I know how frustrating that can be but it is vital for success.

Good luck!

Angie33 profile image
Angie33 in reply to DippyDame

Hi DippyDame,

I appreciate you taking time to reply. Thank you for all your great advice.

I agree re ME. It is usually a group of unexplained symptoms. I thankfully recovered, albeit 10 years later.

I have been seeing an endo for 4-5 months now. Her latest suggestion was to either ditch T4 and stick to T3 only (the route I am now on) or do the combo with a non lactose T4. I will suggest the latter as it was previously suggested that even if my body can't convert T4 to T3, I should still definitely be within the range to give my body the chance to do what it can. Valuable advice!

I do eat a very healthy diet so I am assuming the hair issue plus anxiety etc is linked very much to my thyroid!

I'm really glad you are in a good place with your thyroid now. I will try to be a little more patient but it is wearing thin after just having recovered from ME few years ago, now 18 months of this (with covid thrown in for good measure) However, I won't give up and revert to metavive quite yet. Although it did seem to agree with me! Option B!

My GP and endo are not keen on me reverting back!

I read through some other chats and see that Teva isn't great for many. I will suggest taking Aristo or Glenmark first.

Thank you again! :-)

Hashimotosucks profile image
Hashimotosucks

just wondering why you have chosen to take a glandular rather than a natural dessicated thyroid hormone? I tried metavive and got terrible heart palpitations and changed to Levothryroxine oral solutions ( as very sensitive to tablets ) which is not working very well either. it is challenging to find the right solution to good health with a thyroid issue in the UK. I may just have to go private as my quality of life is not where it should be

Angie33 profile image
Angie33

The first pills I tried was metavive as my GP's antiquated tests didn't pick up on my under active thyroid. Therefore, my naturopathic physician prescribed metavive. It was life changing. However, as I didn't get regular tests, I was having to gauge my own dose.. I then had an incident when my heart rate leaped from 74bpm to 220bpm. First incident! This was understandable though.

However, I still decided to come off these meds, went back to GP where she then agreed my thyroid was under active. I was then on thyroxine for a year. Didn't agree with me at all! I am now on T3. This is working better but I am still living on restricted energy. I am getting desperate and want to revert to metavive as it seemed to work fine, I just needed a lower dose. I was on a very high dose. However, I will persevere a bit longer and get my iron levels etc tested! Maybe I am sensitive to these meds too. I am wondering!!

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