Hi all, I'm 22, been on Levothyroxine for 6 years at 50mcg.
I've always maintained my thyroid and health extremely vigilantly as I am very health conscious and hypothyroidism runs in my family. Without sounding horrible, I have seen the effects of what it can do to you if you don't take care of yourself so I do look after my body well.
Since this time last year my health has been massively deteriorating (perpetual exhaustion, hair loss, bowel issues, stiff body, insomnia to name a few), I've been piling on weight despite a seriously active lifestyle (5x hour long gym sessions weekly and I eat VERY well). I also take thyroid support tablets but absolutely nothing can help me feel better. It's like every aspect of my health is lacking. I've had 3 blood tests now, all of them showed low T3 levels but my T4 is fine apparently, so I don't need to up my Levo dosage. My GP just categorically will not prescribe me T3 because she says it won't help, even though I'm begging her to just try it because I'm so desperate for change. I feel like an old woman despite working so hard to maintain my health.
From what I gather, T3 is impossible to get hold of at a reasonable price. I was recommended an anabolic steroid provider website but I'd rather not die of cardiac arrest next time I'm at the gym because I've taken speed every day for two weeks...
Can anyone help me find T3 without a prescription at a reasonable price? I realise I'm asking the impossible here! Any help/advice is appreciated, please PM me!
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rz145
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Your doctor is being negligent with all those symptoms you have. A more normal dose is usually over 100 mcgs. You may be doing well on levo if you had enough of it. Can you post more results please?
Thank you for the advice. I'm going to go back and be persistent with my GP to refer me to an endo because I was on 25mcg until early last year and I didn't realise 50 was the starting dose!
Actual results would help but you sound as though you have conversion issues and they really need correcting first as often that can go against you adding T3.
You may not be on a high enough dose either as 50 is often just a starting dose. Have you had follow up bloods done?
So to improve your T3 level and to make your thyroid work better you need to get Vit D, B13, folate and ferritin tested. Your GP can order those for you. These 4 help your thyroid to perform better, can reverse conversion problems though it can take time particularly if you are very low and can also rid you of some symptoms so a win win really. Results need to be optimal, not just in range so see SeasideSusie's posts for what you are aiming for and how to achieve it or post when you get them back. Adding T3 is like papering over the cracks so better to start and improve other things first as your body may not accept T3 at the moment.
I was on 25mcg until early last year! I'm going to try to see an endo and also get the vitamin levels tested. It's just a mission getting anything out of my GP I feel like I'm wasting their time! But thank you for the advice x
Your dose is far too small - is there a reason why it has been kept so low ? Please post your results with ranges ?
Do you have Hashimotos ? Have you had B12 - Folate - Ferritin - VitD tested ? They all need to be optimal for thyroid hormones to work in the body - your own and the ones you take.
With gut issues I am suspecting gluten sensitivity which is common with Hashimotos and can also prevent good uptake of vitamins and minerals as well as the T4 itself.
I was on 25mcg until early last year when I was upped to 50mcg after a routine blood test. I'm going to try and get referred to an endo and also get all those vitamin levels tested. Thank you for the advice!
Sadly Endos are often Diabetes specialists and know little about the Thyroid - from reading the 100's of posts here about disappointing Endo visits .... Could you have all the Tests done privately through Thyroid UK - post the results here on the Forum and people will comment and support Link below ...
T3 is way more likely to make you drop dead in the gym than the steroid. Use the nhs. Get to a specialist. The symptoms you have could be from either too much or too little Levo. Make sure you have some iodine in your salt . Try mind body techniques. Try less levo. Try more. Under guidance of a HP. The reason t3 is given so rarely and so carefully is people abuse it and it can kill you quick. You will feel better. People who have no thyroid at all or who have had lost the ability to make any T3 or use t4 might need it. But carefully , cautiously. There is a lot of room to adjust your t4.
Iodine is bad for thyroid sufferers beware of misinformation. First you require a comprehensive blood test. Why not try Blue Horizon ( Thyroid 11 ) this test would give you all of the answers you require. Post the results on here including the ranges.
Take the test first thing in the morning on an empty stomach. Leave off your Levo medication for 24 hours before the test.
This test would give you a good starting point health wise. Most Doctors and Endos haven't a clue when it comes to the thyroid I only became well after joining this site and posting then self medicating I am 71 years of age with no thyroid and have none of the symptoms you describe.
That is simply not true and could scare someone. Without results thyroid adrenals( dhea and cortisol) together with vitamins and the knowledge you have not got hashimotos or an absorbtion issue it’s all a guess. Silverfox7 and marz are right. It would be handy to see those results. It’s unlikely your gp or endo will do everything do personally I believe in finding out information yourself. At least you obtain what you need.
Off the cuff it does sound like a conversion issues but on a tiny amount it’s not a good reflection.
Having just come back from an endo apt with a friend( for her) I can say the lady was v nice agreed with everything I suggested then said off you go and source your own t3! Oh yeh and your friend is probably right you have hashimotos so gluten free may help but I don’t really understand it!!( this was private and a 7 hr round trip)
Please don’t assume all endos know more than people on here.
If you like live with a condition you research and find out what works for you. You will never get t3 on the nhs- unlikely privately with the cost. You should get an increase in t4 tho. Also there is plenty to do in the meantime that will help you.
See Improve Thyroid Treatment campaign on Facebook for full info pack to send to your own MP.
This info pack, letter templates etc put together in collaboration with Thyroid Uk
There is due to be parliamentary debate soon on this outrageous price gouging by pharmaceutical companies causing thousands of innocent patients to be denied essential medication
Like katherine107 my CCG still allows prescribed T3
I empathise with you. I myself have similar history although I am now 58 with Hashimoto’s I was only given 25mcg for the first 10 years & then 50mcg until I was 54. I have suffered dearly as a result. I have since found out from an Endocrinologist that dose for Thyroxine is often based on weight at the rate of 1.66 per 1kg of weight. One of my sisters has recently seen an Endocrinologist and been prescribed T3 with her T4. Go back to your GP and ask for referral to Endocrinologist. Write a letter to your doctor explaining why, then hand deliver. it has to be scanned into your records. Then make an appointment a week later to discuss.
Have you lost any underarm Hair? Or body hair and or is this now lacking too.
The only other thing I can think of is that too much exercise can use up your T3 apparently so take a short break to rest your system then restart gently
This is great advice, thank you. I was also on 25mcg until early last year when I was upped to 50 after a routine check.
I haven't lost hair on my body, I wish!! I actually have a lot of excess hair for which I have laser treatment. But the hair on my head is thinning.
I'm going to go back to my GP and ask to see an endo. I just always feel like I'm wasting NHS time and resources but I need to be persistent I think...
Thank you! I'll try and chill out at the gym but it is a big part of my life and I really enjoy strength training, have done for years. I'll tone down my cardio (I hate cardio anyway so happy days) and spend more time stretching instead. Thanks for the advice
rz145, have you posted your blood test results anywhere? People are jumping to conclusions recommending this and that without any information other than the dose of levothyroxine and your symptoms.
The only logical way to provide any advice is if we have your test results. Everything else is pure speculation.
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 ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
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 hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Excess hair can be due to PCOS, common with Hashimoto's
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to them
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)
Come back on a new post with most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested
Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
This is really helpful - thank you! I thought Hashimotos was uncommon so I ruled it out but I do have issues with gluten (mainly bread) and dairy.
I have had three blood tests over the last eight months but my GP didn't give me the breakdowns, I didn't know I was entitled to them so thanks for letting me know, I've booked another test and will make sure I keep the results.
Also going to do a private test and then repost to see what my options are.
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