Hi, my name is Kevin im 27 and have been suffering with a under active thyroid for the last 3 years, i started on 25mg through the NHS, went up to 225mg and currently sit at 175mg.
When i first got diagnosed i was really puffy with lots of water retention to the point i could see the water slosh in my thighs, i was depressed and slowly speaking and my shins burned alot. I thought this was due to me working nights. It got to a point i could literally sleep 24hrs + over the weekend and id wake up with my left arm all numb. This is the point i gave up and asked my mum to take me to the doctors.
3 years on, My weight has gone out of control and i cant loose weight this makes me seriously unhappy, i still sleep heavily at random time slots and i really am energyless. 3 months ago i went to ask my gp about T3 and she said there is not enough evidence and i dont need it. They did a blood test, the T3 was borderline and my VitaminD was low. Currently taking 175mg levo and 1000UI vitD. They wanted to up my Levo again but i couldnt do it as when i go past 175mg i get dizzy, cant walk straight and my areolas get really puffy. Im at a point i am so desperate because i cannot continue a normal working life. I know just cannot do it.
I was recommended to come on here via Kitti on the FB ITT page, as id like to add T3 to my T4, i dont want to waste time begging the GP who will refuse me or finding a endo as theres none where i live in Northampton that i can find.
Has anyone, who is on perscribed Levothyroxine sourced and added T3 themselves?
How do i go about getting my T3, DIO1 & DIO2 genes checked properly and where? and where can i get T3 to add in small amounts, slowly to my T4?
please help, Kevin
First thing is can you post your most recent results for thyroid- TSH, FT4, FT3, TT4, plus TPO and TG antibodies
Do you know if you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies. If you have Hashimoto's then looking at food intolerances is likely, most common is gluten.
Essential to test vitamin D, folate, ferritin and B12, these are often too low when we are on Levothyroxine.
Private tests are available
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 be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Link about antibodies
Link about thyroid blood tests
DIO2 gene test is available
Or more comprehensive tests just been launched
Some typical posts about vitamins
This one Low vitamins due to under medication
Low vitamins causing low TSH high FT4 and low FT3
Hi there, thanks for your time to reply, This is all i got on my copy...
Serum TSH level (XaELV) - Above range - 30.3 mu/L [0.4-5.5]
Outside reference range
Serum free T4 level (XaERr) - 13.0 pmol/L [11.5-22.7]
When are these results from?
They show you are very hypothyroid. TSH way above top of range
Strongly suggest you get full private testing
1000iu vitamin D supplement is likely not enough
How low was it before starting supplementing and has it been retested
If under 25nmol you should have had loading dose
Looking to get level to around 100nmol
Look up your local CCG guidelines
Low vitamin D linked to insomnia
You will need to get vitamins optimal and, if have Hashimoto's, very likely need to be gluten free. Then if FT3 remains low, is time to consider adding T3. But the other steps need sorting first.
If we take too much Levothyroxine, it can get converted into Reverse T3, this in inactive and blocks T3 as well. Sounds like that might have been happening when they put your Levothyroxine up beyond 175mcg
Going strictly gluten free helps gut heal
Do you get any gut symptoms
Results from september 2017, not got hasimotos as far as i know, no gut problems however i used to get constipated really badly when my levels were off. Been taking my vitD since that test in september and im due a routine test soon, to add when i first got diagnosed my kidney and liver were in the red zone and were heavily watched i was told
So in September you were severely hypo
You don't need any gut symptoms to still find you can be severely gluten intolerant, especially if you have high antibodies
Over 90% of primary hypothyroidism is due to autoimmune thyroid disease (high antibodies)
Get tested and find out
Your GP is not currently managing you very well
My GP said ill be on Levo life long as i still have antibodies
So you already know you have Hashimoto's (autoimmune thyroid disease)
Almost everyone on levothyroxine is on it for life. Only in very rare exceptions is it temporary
Hence prescriptions are free. It’s a serious and lifelong condition
Going absolutely strictly gluten free diet helps a large percentage of Hashimoto’s patients.
Low vitamin levels are a result of the Hashimoto’s affecting the gut, causing low stomach acid
Read up as much as possible about Hashimoto’s
We need to address the cause
The Thyroid Pharmacist
Ah ok, i thought hashimotos was something different to hypothyroidism, please bear with me as all the info i really know is from my GP, Kev
You are very, very hypothyroid with a TSH of 30.3 mu/L.
The aim when we're on Thyroid Hormone replacements is a TSH of 1 or lower with FT4 and FT3 in the upper part of the range.
No wonder you feel so ill. You are on an insufficient dose of T4 and I am not surprised you want to try some T3.
Your FT4 is near the bottom of the range so it is clear that you cannot convert T4 to sufficient T3.
In reality your FT4 should be nearer 20.
You need B12, Vit D, iron, ferritin and folate tested.
Your doctor has been negligent in allowing your TSH to be so high.