started T3 4 weeks ago as a trial can’t believe the difference it has made.

[Desperateforhelp1]

I started on T3 as a trial from my endocrinologist. She’s given me 4 months supply and will then look at my bloods to decide if I need it or not. I can’t believe the difference it’s made, I sleep now, I’m brighter and happier but most of all I have energy I haven’t had for years. I’m even walking my dog a mile a day. This change in such a short time feels amazing when I consider I have hashimotes , fibromyalgia, rheumatoid arthritis plus other autoimmune conditions. Before I didn’t sleep was always tired and could hardly walk up the road without so much pain. Everyone has said how much better and brighter I seem , they didn’t know I was trying the T3 . I’m worried that when they retest if my bloods aren’t as they want them to be what do I do , I can’t go back to feeling how I did before.

[SeasideSusie Remembering]

Desperateforhelp1

I’m worried that when they retest if my bloods aren’t as they want them to be what do I do , I can’t go back to feeling how I did before.

When doing your next test make sure that you follow our advice:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

However, when taking T3 this tends to lower TSH and may even suppress it so be aware of this in case the endo says your TSH is too low and wants to reduce your medication. Hopefully the endo does know about this.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

[Desperateforhelp1 in reply to SeasideSusie]

ok thank you I think I will look into the private testing before my hospital one . Which vitamin b is best to take ? Your all so knowledgeable I just get confused by it all. Can I take thyroxine and T3 together in the morning or am I better to wait an hour between them ?

[SeasideSusie Remembering in reply to Desperateforhelp1]

Desperateforhelp1

I've always been happy with Thorne Basic B but I'm currently trialling Vitablossom Liposomal B Complex, it's virtually the same although a bit cheaper and liposomal is supposed to be better absorbed.

[SlowDragon Administrator]

Suggest you get full thyroid and vitamin testing done yourself

Previous post showed low B12

Are you now taking daily vitamin B complex and separate B12

Important to test vitamin D and ferritin too

Remember to stop taking vitamin B complex a week before any blood test

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

how much levothyroxine are you currently taking

Was dose levothyroxine reduced when T3 added

How much T3 are you currently taking

Only do private testing early Monday or Tuesday morning

Watch out for postal strikes

Test before 9am

Last dose levothyroxine 24 hours before test

Last 1/2 or 1/3rd of daily dose T3 approx 8-12 hours before test

[Desperateforhelp1 in reply to SlowDragon]

wow that’s a lot to take in. So which vitamin b is best ? I have looked but get totally confused by how many different ones there is. Should I test like the month before the hospital bloods? I was on 100 thyroxine before but I’m now on 75 with 5 T3 morning and afternoon . They have said to take thyroxine and liothyonine together but I have mostly left an hour between them in the morning, is that right or can I take those together? I also have other medications to take so it is a bit of a faff . In the afternoon I take my second dose of liothronine then don’t eat for 2 hours. I then take vitamin c, omega 3 & 6, vitamin b complex. I read you shouldn’t take vitamin d or magnesium within 4 hours of liothyonine so I noe take them at about 10pm at night. Does it sound like I’m doing the right thing. So worried that they might take me off T3 because I literally haven’t been this well for about 8 years. My husband says he’s got the old me back. Thank you for helping.

[SlowDragon Administrator in reply to Desperateforhelp1]

They have said to take thyroxine and liothyonine together but I have mostly left an hour between them in the morning, is that right or can I take those together?

I also have other medications to take so it is a bit of a faff . In the afternoon I take my second dose of liothronine then don’t eat for 2 hours. I then take vitamin c, omega 3 & 6, vitamin b complex. 

Yes you can take levothyroxine and first dose T3 together in morning

Perhaps set alarm to take an hour or so before you want to get up

Vitamin B complex recommended to take in morning immediately after breakfast

Thorne Basic B complex is the recommended vitamin B complex

ebay.co.uk/itm/384223912852...

Similarly if taking vitamin D mouth spray this doesn’t need to be four hours away as it’s absorbed in mouth not gut

You could experiment with taking 2nd dose T3 roughly 10-12 hours after first dose ….or at bedtime

Day before you to blood test …..last dose T3 at 9pm assuming testing 9am latest following morning

Keep an eye on Ft4 levels ……many people find that endocrinologist reduces levothyroxine too much when adding T3 and after month or two you may see Ft4 result drop too low and some symptoms return…..and then might need small dose increase in levothyroxine

[Desperateforhelp1 in reply to SlowDragon]

thank you I will look into getting some of them. Fingers crossed they let me stay on the T3 .

[shaws Administrator in reply to Desperateforhelp1]

If your B12 is low, I would ask GP to check that you do not have pernicious anaemia before supplementing.

nhsinform.scot/illnesses-an...

[Desperateforhelp1 in reply to shaws]

is it just a normal blood test they do ? When my results were off there was a bit about possible problems. I will look and see if I can find it. Thank you

[CajunGurl]

Wow!! It wonderful to hear someone is doing well with this condition. I wish you well and hope it only gets better for you.

[Desperateforhelp1 in reply to CajunGurl]

thank you that’s so kind of you. I really can’t quite believe it myself been asking to try it to see if it makes any difference for the last 4 years but the change is almost unbelievable, let’s hope it continues.

[CajunGurl]

maybe that might help me. I’ve been dealing with this for 27 yr. When I was first started taking the Synthroid. It was great even lost 20 pounds but when I hit my 50s that was it. I keep gaining weight. I’m tired all the time and now I’m starting get flair ups like crazy. 😵‍💫. Sometime it’s just too much and it’s hard for my husband to understand.

[Desperateforhelp1 in reply to CajunGurl]

sounds like we are very similar I was 30 when diagnosed and thyroxine seemed to work ok but it was about 10 years ago that it started to go down hill, the tiredness,weight gain etc. I’ve never been so big it’s so annoying. I’m 53 now and was pensioned off in March because of my illnesses, now I feel a complete fraud because I’ve not felt better. I read somewhere that overtime because it’s hashimotos the rate we convert thyroxine changes. Not sure how true that is. I completely get what you mean about your husband my family have been the same. It’s so hard to help them understand. I hope you find something that works for you too , we all deserve the best treatment to give us the best life x

[CajunGurl in reply to Desperateforhelp1]

I agree, everyone deserves to be happy. You would think all that money we spend on Dr. They would know something. But we have to figure this out ourselves if we want to try and feel better. It’s nice to chat with someone who understands

Thanks.

[Desperateforhelp1 in reply to CajunGurl]

your welcome sometimes just chatting to people who get it helps. Good luck x

[CajunGurl]

Yes that’s true. Thanks. Good luck to you as well 🌺

[TiggerMe]

So good to hear, I too started on T3 3 months ago, though self-sourced whilst waiting to see an Endo next month.

I'm with you, totally life changing! So, I don't give two hoots what the Endo has to say really, I'm hoping they will prescribe but there is no way I am stopping taking it... my bloods so far have been good, nothing crazy so fingers crossed.... no going back though 🤸‍♀️

[Desperateforhelp1 in reply to TiggerMe]

that’s great glad it’s making you feel good too. It’s such a shame you had to take matters in your own hands. I hope your endo does help . Let me know how you get on. I take it your in the uk?

[TiggerMe in reply to Desperateforhelp1]

I wasn't going to waste any more of my life waiting for them to dither, it's almost better taking it at your own pace without having to jump through their silly hoops... I'll give the Endo a chance 🤞

I will certainly share celebrations or defeat 😉

I'm in the south west of england

[Desperateforhelp1 in reply to TiggerMe]

don’t blame you. Does it cost much ? Hope you don’t mind me asking. When I had a private prescription from my previous endo I was quoted £500 a month. I couldn’t pay that forever. I’m in the east of England Suffolk.

[TiggerMe in reply to Desperateforhelp1]

Extortionate!! You get much better advise here!

PM’d you 😉

[McPammy]

how absolutely fantastic. I too had a similar response when I started my T3 liothyronine trail of 3 months combined with levothyroxine liquid. I could barely walk and couldn’t understand what the hell had happened to me. A series of Drs I saw also said they had no clue. Anyways I went private and bingo T3 has been nothing short of a miracle. I now walk more than 10k steps brisk walks almost every day and lost over 4st without trying. I enjoy food more. Sleep better. Look better and feel so much better. It’s been over 3years now and may it continue. 👍. I hope it does for you also. My TSH hasn’t been suppressed since starting T3 although it can be near to. I get my bloods checked every 3 months by my GP. The problems of continued prescribing seem to come under question if or when your TSH goes suppressed as a lot of Drs don’t like that. I keep my levo dose as low as possible without negative effects in order to keep my TSH in range. So far for 3 years that has worked. Most people seem to fall into suppressed TSH but I luckily haven’t. This means continued prescribing and very happy endocrinologists too both NHS and privately. Most importantly I feel best I’ve felt in years.

[Desperateforhelp1]

oh wow that sounds great I’m so pleased for you. The drs kept telling me I was depressed really annoyed me that they wouldn’t listen. So if my TSH gets low my endo could lower my levothyroxine and that might work ?