Could it be low FT3?

[Thyro100]

Hi all, sorry to dive in straight with a question, but I’m really stressed out!

I was diagnosed with Hypothyroidism in September and put on a dose of 50mcg Levothyroxine. Had first blood tests after 3 months and both TSH and T4 levels are in the middle of normal range according to my doctor.

The only problem is that my symptoms are still there; hair thinning, weight gain, rubbery skin and worst of all pretty bad muscle weakness. As a very keen gym goer before this it’s really frustrating.

I asked my Dr if it could be low T3 and although the blood tests didn’t show T3 levels, he didn’t seem to think it could be. He has sent me for more blood tests for vitamin D deficiency and something to do with creatinine.

What do you experienced people think? Sorry again, any advice would be appreciated.

[SeasideSusie Remembering]

Thyro100

It is very early in your thyroid journey and it can take months to feel well.

Normal protocol is to retest 6 weeks after starting Levo, increase by 25mcg, retest 6-8 weeks later, another increase, and repeat until your levels are where they need to be for you to feel well.

The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

So if your TSH and FT4 are mid range, you are undermedicated and need an increase in your dose of Levo immediately and retest 6-8 later.

Optimal nutrient levels are also needed so besides Vit D you need to check

B12

Folate

Ferritin

The Vit D Council recommends a level of 125nmol/L so if your level is lower than that come back for members to comment.

[Thyro100 in reply to SeasideSusie]

Thank you SeasideSusie, I’m just not sure where to go from here then.

The Dr said it was bang in the middle of normal so he wouldn’t up the dose of levo again, just said do another thyroid test in 3 months!

There was no test done for T3, just TSH and T4 and that is why he is looking for those other tests in the meantime.

[SeasideSusie Remembering in reply to Thyro100]

Unfortunately, your GP is like so many who don't know how to treat hypothyroidism. Bang in the middle of normal is not where TSH should be. It needs to be where you feel well, and if that is lower the middle of normal you need an increase in dose. Maybe ask your doctor if he intends to leave you feeling ill, or does he want to help yo get better.

Use the following to support our request for an increase in Levo

pathology.leedsth.nhs.uk/pa...

Suggested monitoring schemes

Thyroxine Therapy

Newly commenced

•Measure TFT ~ 6-8 weeks post commencement of thyroxine therapy and adjust the dose accordingly in order to bring TSH into the range of 0.2 - 2.0 miu/L

•Repeat TFT ~ 6 months after normalisation as metabolic clearance of T4 may increase with correction of hypothyroidism.

•Note that TFT should not be repeated until at least 4-6 weeks post alteration of thyroxine dose.

and from the same link

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level ........ This Indicates

0.2 - 2.0 miu/L ........ Sufficient Replacement

> 2.0 miu/L ........ Likely under Replacement

Also,

Dr Toft - past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

TSH isn't normally measured in the UK, but FT3 can be and needs to stay in range.

You can obtain a copy of the article by emailing Dionne at [e-mail] print it and highlight question 6 to show your doctor.

[Thyro100 in reply to SeasideSusie]

Again, thank you so much!!

I will do this and hopefully my Dr will follow the guidance.

Fingers crossed!! Thank you.

[Mary-intussuception in reply to Thyro100]

Ask for a referal to an Endocrinologist. That's the only way to get FreeT3 tested where I am.

You need the Thyroid Antibodies blood tests also to confirm / eliminate Autoimmune Thyroiditis (Hashimoto's ).

It's good to hear that your GP is testing for Vitamin D though. At least he's listening. You probably have deficiency.

[Thyro100 in reply to Mary-intussuception]

Hi Mary, your right it is good he is listening, it is easy to be frustrated because I am convinced it’s still a thyroid issue.

All the symptoms I described get marginally better after I started Levothyroxine and now it’s within the normal range it’s being discounted atm, it will take time to go through all this again and maybe convince my GP to think about it differently.

I think asking to be referred is a good idea, thank you.

[chriscross66]

I would get private bloods done by Medichecks if you can afford it. They do discounts on a Thursday for thyroid profiles. Then you will have a full picture and also will get an on line dr s advice. You can then take these to your doctor for further discussion. It is extremely important to have your T3 levels so you can have a full picture. Good luck x

[Thyro100 in reply to chriscross66]

That also sounds like a good idea, but wouldn’t the doctor just tell me T4 and FSH is in the middle so it’s ok.

I have booked another appointment with my GP to talk to him about this, will take that article in and then go from there. Hopefully he at least looks a bit deeper.

[chriscross66 in reply to Thyro100]

As we sadly know the GP s and the Endo s don’t know enough about our thyroids but I ve always found it best to go in armed with the most info I can get and Private bloods are a really helpful complete picture of what’s going on.

[Thyro100]

Thank you for you reply.

I am going to ask my Dr if I can have the T3 levels tested, if (for whatever reason) that can’t happen I will get private bloods done.

I asked what level it was from the recent one and he didn’t know, but said if it was a concern then it would have showed up or the lab would have told him?!?! There was about 30 things in the profile including TSH and T4, I don’t understand why T3 wouldn’t have been detailed if it was tested for.

[Thyro100]

Meant to post an update, just getting around to it.

Thank you to everyone who has given me info, the doctor has upped my Levo to 75mcg (from 50mcg) and have more bloods with T3 tested in 8 weeks.

I have notice a slight improvement in mood and skin is slightly better, and better some days than others, libido has re-emerged slightly too. I reckon there is still a long way to go though.

Interestingly the Levo guidance leaflet states that it should be upped every 3-4 weeks... why are doctors not following this? It felt like a struggle to get mine from testing at 3 months to 8 weeks.