Investigating T3: Hi all I am new to this site... - Thyroid UK

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Investigating T3

Dee959 profile image
30 Replies

Hi all

I am new to this site - I have been taking Levothyroxine for 14 years or so, during that time my body has gone through various stages, ten years ago I managed to lose a lot of weight and kept it off for a long time but then my circumstances changed and my job changed so the weight piled on. Ever since I have been struggling to lose anything - I record what I eat every day to control how much I eat and I go the gym 5 or 6 times a week and do strength exercises as well as running, weight loss is very difficult and not just that I feel exhausted and my muscles and joints hurt all the time.

I have seen three Endo’s - the first one told me I was fat because I was lazy and eat too much!

The second one said he didn’t think I had a Thyroid problem but thought it was Addison’s disease, tests proved I didn’t have that but he didn’t offer any other explanation, the third one simply said I was old! I am 50 - so my “old age” was the reason for all my symptoms.

To be blatantly honest I am at my wits end and feel very low about all of this - my biggest issue is Energy levels and my weight, I have just ordered from T3 supplements to try, I have had numerous tests for vitamin and ferritin levels all were normal apparently. Anyway sorry for the long post - I will be reading all the posts with interest!

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Dee959
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SeasideSusie profile image
SeasideSusieRemembering

Dee959

Have you had TSH, FT4 and FT3 tested all at the same time? If so what were the results, please post them with their reference ranges.

The only way you can know if you need T3 is if you have these tests done. You shouldn't take T3 if you don't know whether or not you need it.

Also, T3 is not a weight loss drug. It is a hormone replacement if your body can't convert T4 to T3 well enough.

I have had numerous tests for vitamin and ferritin levels all were normal apparently

What are the results, with reference ranges, for these tests? Normal just means that they are somewhere within range but that's not necessarily optimal. So if you post thoser we can comment.

Also, have you ever had thyroid antibodies tested? If so what were the results?

Dee959 profile image
Dee959 in reply to SeasideSusie

So I have just requested my results be emailed and they did test T3 this time - first time ever - I will try and post my results

SeasideSusie profile image
SeasideSusieRemembering in reply to Dee959

You can edit your first post in this read and add a picture or you can type them in with their reference ranges.

How to edit a post: support.healthunlocked.com/...

SlowDragon profile image
SlowDragonAdministrator

Before even considering adding any T3 it's absolutely essential to get FULL Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto's?

Ask GP to test vitamin levels (and antibodies if never been tested)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test.

(taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

It's common for conversion of FT4 to FT3 to get worse, especially after menopause

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 primary 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 .

If you have results and ranges add them here

If not got full test results yet, come back with new post once you get them

Vitamins need to be optimal for good thyroid function

If you have Hashimoto's, many need to be on strictly gluten free diet too

Dee959 profile image
Dee959 in reply to SlowDragon

Hi

I have had my vitamin levels tested and take Vitamin D daily - my GP won’t test T3. I have asked several times about Hashimotos - my sister has this but Drs and Endo just take no notice - I am at the top of the range for T4 yet still symptomatic and I have a low heart rate, hoarse voice and dry skin. I have had enough.😏

SlowDragon profile image
SlowDragonAdministrator in reply to Dee959

Vitamin levels need to be optimal, not just within range

Can you add actual results and ranges

So the first step is to get FULL Thyroid and vitamin testing privately of anything not done yet

Literally thousands on here forced to do this

Medichecks may have an offer on tomorrow (Thyroid Thursday) to get full testing. £99 - reduced to £79 plus option to pay for private blood draw instead of DIY finger prick test

Bloods should be done as early as possible in morning before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test

It's essential to get vitamin levels optimal first. Neither Levothyroxine or T3 will work well unless they are.

Highly likely you have Hashimoto's then, as your sister does

So getting thyroid antibodies tested is essential

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

Dee959 profile image
Dee959 in reply to SlowDragon

Hi I have been tested for coeliac disease at least three times and have always come back as negative. I had a full blood work done before I came out here - I am back in the UK in two weeks so when I get home I will pick up the Drs letter which has all my actual results on it .

SlowDragon profile image
SlowDragonAdministrator in reply to Dee959

Only 5% of Hashimoto's patients are coeliac but about 85% find strictly gluten free diet helps or is essential.

As you have already been tested for coeliac you can try gluten free diet straight away

You won't know if you will benefit unless you try it for 3-6 months

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

High intensity exercise will deplete T3

Dee959 profile image
Dee959 in reply to SlowDragon

Thank you - I definitely have a gluten intolerance and I have a lot of food allergies- I will cut out gluten and see if it helps - also going to cut down on HIIT and focus on weight training

SlowDragon profile image
SlowDragonAdministrator in reply to Dee959

Can you add the actual results and ranges on

Vitamin D

Folate

Ferritin

B12

How much vitamin D are you supplementing?

Supplementing daily vitamin C can help support adrenals

Selenium supplements can help improve conversion of FT4 to FT3

Until Thyroid levels are optimal heavy exercise just makes situation worse

Some regular gentle walking or swimming or yoga may be more beneficial.

Dee959 profile image
Dee959 in reply to SlowDragon

Hi - so I have asked my friend to scan across my letter and have lots of results here - I wish I could post them all

Ferritin - 109 Ug/L (10.0 -291.0)

Ferritin <20 Iron Deficiency

Ferritin 20-30 - Depleted Iron Stores

Folate

8.4 ng/mL (3.9-26.8)

B12 555 ng/L (190.0 - 910.0)

No result for Vit D but I take 1000IU daily and sit in the sun every day for a minimum of 15 minutes- I also take Magnesium with B6 daily

My previous levels in August which I hadn’t seen because the letter came while I was away are

TSH 0.15 (0.4 - 5.5)

Outside reference range

Free T4 17.6 (11.0-26.0)

Although TSH is low the free T4 does not suggest over replacement with thyroxine

Free T3 (never had this done before)

3.8 pmol/L (3.0 - 6.0)

🤔

jamjar67 profile image
jamjar67 in reply to Dee959

Your results are not dissimilar to mine, I’m by far no expert but your T4 level looks like you could increase your levo, your T3 is low - I’m not too sure about iron but they say midway in range or just slightly higher.

T4 needs to be converted to FT3 as this is what our cells uptake and if not sufficient why apparently we don’t feel well - I know iron needs to be optimal to aid conversion but also if you have the DIO1 and DIO2 Gene mutation this can prevent good conversion.

We also lose up to 25% of T3 from the loss of or destruction of our thyroid due to Hashimotos.

I used to go to the gym a lot and also felt pretty fit for in my 50’s but I don’t have the energy to go now... I however have lost weight, I understand this is due to my low cortisol (hence my energy).

I am seeing an Endo tomorrow and really have mixed thoughts about this appt..... I have bought Paul Robinson’s books which are very good, however difficult for me to read as I find it hard to process and retain information these days!!

If the Endo doesn’t see the need for me to have T3 and my levels are still low I plan to try T3.

Some of the much more experienced will no doubt respond to your results but if they don’t perhaps do a new post with your results.

Good Luck

Dee959 profile image
Dee959 in reply to jamjar67

Hi, thanks for your reply - interesting 🤔 please let us know how you get on - if you can’t get T3 prescribed where do you get it from ? I ordered some

Off Amazon which I have been told will

be bodybuilding supplements and not suitable so I don’t think I will

Entertain that .

I find it very hard going to a professional and telling them what I need 🙁.

SlowDragon profile image
SlowDragonAdministrator in reply to Dee959

So your FT4 is only 40% through range

FT3 even worse at only 26%

Useful calculator for working out % through range

chorobytarczycy.eu/kalkulator

B12 and folate on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

Suggest you get vitamin D test when back here

vitamindtest.org.uk

Dee959 profile image
Dee959 in reply to SlowDragon

Maybe I have a problem with absorbtion? I will visit the GP here when I get my letter in my hand and see if they will do anything for me - I live out here for the foreseeable so Will be these Drs in the main that look after my ongoing care

SlowDragon profile image
SlowDragonAdministrator in reply to Dee959

Many many hypothyroid people have poor gut function and low vitamins

Absolutely strictly gluten free diet and supplementing vitamins to optimal can all help

But you may (probably ) need dose increase in Levo

Once FT4 is near top of range, vitamins optimal and gluten free..... if FT3 remains low then you may need addition of small split doses of T3

SlowDragon profile image
SlowDragonAdministrator in reply to Dee959

Vitamin D is often surprisingly low ....getting tested recommended

Getting vitamins optimal and trying strictly gluten free diet

How much Levothyroxine are you currently taking?

Is it always the same brand?

Dee959 profile image
Dee959 in reply to SlowDragon

Hi - I take 125 daily usually TEVA but I have also been given NorthStar

Dee959 profile image
Dee959 in reply to SlowDragon

Hi SlowDragon - I posted my results last week as a couple of people had asked - my results which were on the hospital letter I hadn’t seen had my free T4 and free T3 results which hadn’t been done before in the UK - along with the results from the Med Centre here - I wonder if you and SeasideSusie have any observations from these ? I haven’t heard anything since posting them

geegee888 profile image
geegee888

Hi, I used to exercise till exhaustion and couldn't understand why no weight loss, I found that it's beneficial to back off on cardio just lift weights, stretch exercises, planking, press ups etc. the kinesis machine at my gym is invaluable check it out on you tube.

Only exercise when you have had sufficient rest and for me I benefit from having a banana approx 2 hours prior to work out.

Balance gym work with other activities such as swimming walking etc,use different muscle groups, it's working for me.

Eating clean and gluten, sugar and caffeine free, also count your carbs and spread them through the day.

Good luck and be patient🌻🌻🌻🌻🌻

Dee959 profile image
Dee959 in reply to geegee888

Hi and thanks for your reply, it’s interesting because I had decided this morning to focus on weights and cut down on cardio, because I figure that if I am building muscle that will burn fat and if I cut carbs my body should also draw on the fat 😩 I will keep you posted on my progress !

geegee888 profile image
geegee888 in reply to Dee959

I found backing off from high intensity exercise really hard.

But it worked and I feel better stronger and toned too!!

Yes, please keep me posted maybe we could share ideas to keep our routines mixed and fresh. Be strong sweetie🌻🌻🌻🌻

Too much exercise can apparently make things worse if you are hypothyroid as it uses a lot of T3. If you are already low on thyroid hormone and are unable to make more this may make you more unwell.

Dieting too hard can also cause problems as it tends to suppress your metabolism even more.

Exercise yes, but don't get too tired

Hi Dee, sorry you are feeling bad. I can’t see your TSH, T4 or T3 results in this thread so might be good idea to post them and mention how much levo you take. Just to add to the other posts, T3 can be very helpful but it’s not a supplement it’s a powerful hormone that’s only useful if you can’t convert T4 to t3. So probably worth checking that out. I am prescribed T3 and still have mixed feelings about whether it’s helpful for me. It energises and gives me a clearer head but while trying to get the dose right it gave me palpitations, increased appetite, feelings of being high and out of it. Biggest long term review of T3 users in Scotland published last year found little sign of increased cardio risk but increased use of psychiatric medication. For me too high a dose tips me towards being agitated and hyper. My own experience is that it’s very powerful but not always a miracle cure and can take many months to find the right dose.

Best thing I learned on this Site was to go slow and be patient changing either levothyroxine or t3.

Michael

Dee959 profile image
Dee959 in reply to

Mike thanks for your post - please don’t take this the wrong way as I know you are giving me sound advice - but this is disappointing to read and I feel worse than ever - also - I had genuinely hoped taking T3 would improve my health all round and has no idea it could carry these side effects. For goodness sake - I bought it from amazon - why on earth is it allowed to be sold, as for taking the slow road ? I can’t continue as I am - I am depressed because my weight is high and I often have no energy. It’s not good to have fat around the organs and I am desperate to lose it. Whenever I go to a gp I feel like a burden because it’s always about my Thyroid 😞

in reply to Dee959

Hi Dee, not sure if the prescription stuff is the same as Amazon sell so can’t really help with that. T3 can be useful but I don’t think it’s fair to give an unrealistically positive view of it. Sorry you feel so down, this thyroid thing really knocks it out of us emotionally at times. I lean on people close to me when I need some support. I also read a great book called ‘living with the enemy’ to help cope with the emotional side of a long term health problem.

Michael

RedApple profile image
RedAppleAdministrator in reply to Dee959

Dee959 "I had genuinely hoped taking T3 would improve my health all round and has no idea it could carry these side effects. For goodness sake - I bought it from amazon "

Please clarify... Are you saying you are taking T3 purchased through Amazon?

Dee959 profile image
Dee959 in reply to RedApple

I haven’t started taking it yet

RedApple profile image
RedAppleAdministrator in reply to Dee959

Any T3 offered for sale on Amazon is likely to be body building supplements. If your need is for the thyroid hormone replacement liothyronine, commonly referred to as T3, then these non-prescription supplements are unlikely to be useful.

Liothyronine is a prescription medicine and sites such as Amazon do not allow prescription only medicines to be offered for sale.

Dee959 profile image
Dee959 in reply to RedApple

Thank you for your information- they will be going back when I get back to the Uk!

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