NHS Are actually gonna trial me on T3!!!! But D... - Thyroid UK

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NHS Are actually gonna trial me on T3!!!! But Do i need it? what should i do???

ThyroidObsessed profile image
16 Replies

So after 2 years of hell mentally, i.e depression/anxiety/derealisation dont really suffer phisically and im not tired all the time neither!!

After being told by 5 endos that t3 is fine as it's in range and my symptoms are not caused by my thyroid, one endo I saw last visit has actually said that even though she thinks my levels aren't too bad bar the high ft4 she is gonna give me a prescription for t3 to trial for 3 months due to my ingoing mental symptoms!!! YES I AM REALLY LUCKY!!!

I take lots of the usual vitamins separately as recommended on here it's been 2 years now since i changed my lifestyle drastically to help my mental symptoms but nothings changed something is wrong surely, but what??

Symptoms are -

Depression/ low moods on and off literally happy 10 minutes depressed the next everyday this happens.

Anxiety about everything and anything not panic attacks though.

Derealisation feel like I'm dreaming scary as hell.

Crazy head like I'm gonna go crazy any second then just stops!

Confusion like I,'ll forget where I am or what I'm doing really scary!

I'm only 34!

Im slim active and eat very well

If ft4 goes too high over range i suffer with severe side effects aswell...

Latest results on 100mcg Levo 6 days and 125mcg for 1 day

Oct 2018 -

Ft4 23.3 (11- 23.0)

Ft3 4.02 (3.1 - 6.8)

Tsh 1.8 (0.27- 4.5)

Nov 2018 -

Ft4 25.9 (11- 23)

Ft3 4.45 (3.1 -6.8)

Tsh 1.6 (0.27 - 4.5)

Dec 2018 -

Ft4 23.3 (11.0- 22.0)

Ft3 not tested

Tsh 0.72 (0.27- 4.5)

Feb 2019

Ft4 24.9 (11- 23)

Ft3 4.51 (3.1- 6.8)

Tsh 0.74 (0.27- 4.5)

Help please!!!

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16 Replies
Muffy profile image
Muffy

Your FT3 is low in comparison to your FT4 and you would expect it to be a higher ratio. T3 can really help with the symptoms that you have quoted and maybe at least worth giving it a try. I do hope that it helps.

Raventhorpe profile image
Raventhorpe

You don't seem to be converting the t4 to t3 efficiencly so I would give it a go with the t3 just take it slow start low and gradually increase. I was on levothyroxine only for 8 yrs and never felt completely well even though my blood test were in good range was put on t3/t4 combo and I feel so much better, been on it a year now.

ThyroidObsessed profile image
ThyroidObsessed in reply toRaventhorpe

Thank you for your reply.. I'm currently on 100mcg of levo 6 days and 125mcg 1 day, my end has said to reduce to 75mcg and take 5mg t3 twice a day, what do u think?

I'm so anxious about taking the t3, just because i don't suffer physically and I'm not tired all the time like everyone else on here makes me think I don't need it, but I suffer horrendously mentally...

Angel_of_the_North profile image
Angel_of_the_North in reply toThyroidObsessed

That sounds about right, but I'd begin with 5mcg of T3 once a day for the first week.

RockyPath profile image
RockyPath

When you’re genetically predisposed to poor conversion, your body produces reverse T3, but it does so according to its own rhythms, causing you to feel well one minute and then frighteningly unwell the next. Had anyone asked for rT3 with all of those blood tests, you’d have seen it with the first test. Instead, they omit rT3 and you’re left to puzzle over the roller coaster, moment-by-moment swings in hypothyroid symptoms— all of the things you’ve been experiencing.

ThyroidObsessed profile image
ThyroidObsessed in reply toRockyPath

Thank you for your reply, no they haven't tested rt3 but my endo wouldn't because she thinks my levels are ok 😒, and is only trailing me on t3 because of my symptoms, which I feel very lucky to even get on the NHS!!!..

I believe my rt3 would most definitely be high no doubt ...

Angel_of_the_North profile image
Angel_of_the_North in reply toRockyPath

That's not always true. Everyone produces rT3, and if free T4 is too high you tend to produce more, but it does not go hand in hand with poor conversion. I have poor conversion and low rT3. There are many, many reasons for the rT3 level being whatever it is and it is pretty much impossible to tell the reason as not enough research has been done. It really doesn't tell you anything that you can't find out from free t4, free t3 and TSH, plus antibodies. It might possibly flag up that you have a liver problem.

RockyPath profile image
RockyPath

Then T3 would help, but the trial can fail if done poorly. My endocrinologist blew the trial, but months later I proved to him how he just wasn’t giving enough T3, while flooding me with too much T4.

The trial should reduce your levothyroxine by 50 mcg at a minimum. And anything less than 12.5 (US tablet sizes) mcg LT3 to begin with is apt to be inconclusive.

Do not let the trial drift for six weeks before testing and dose adjustment. You can increase T3 after 10 days.

Maron007 profile image
Maron007 in reply toRockyPath

Thank you for your post I found it very interesting. I have been on t3/t4 combo since Sep 2017. When I started the t3 my t4 100mcg which has never chAnged. Though I did feel a little better I new the t3 5mcg was not enough. Sorry I put it to 10mcg. I was crashing with no energy in the afternoon. But overall my symptoms felt better. Then my endo said, my TSH was concerning, 0.03 (apparently can cause bone issues if it is that low and also means I have too much thyroxine in my system ?) so she then instructed me to reduce it 10mcg.. within six weeks I started to feel dreadful my hair started to fall out and Since June I have also had several steroid injections 6 in total, 3 radio guided ones into different joints. Not sure if this would have an impact on symptoms and b/t results but my ears nose and throat have felt very different since nov, swollen and blocked.

My endo thinks the t3 in not helping me because my TSH is to low and my t3 b/t results have not really altered much. However since introducing t3 my t4 b/t result has dropped to mid range. In my latest visit I asked about reducing t4, however she asked me to split my dose 20mcg from 10mcg am and 10mcg pm, I am sleeping a lot better and I do not feel so tired around the 4pm mark.

I am due back next month and I am wondering whether I should reduce my t4 to see how I react or should I get my rt3 checked first before reducing my t4 ? Have tried on NHS before, but it never gets done. I had my bloods tested lasted week, which she will get of the split dose trial. I just feel after reading your post that she has not administered t3 the best way and fear that next time I see her she will stop the t3 meds’. I also have b12 injections every 8 weeks since Sep18 and supplement VitD and iron.

19th Dec 2018 b/test results

Free T4 14 9.00-24.00pmol/L

Free T3 4.4 3.50-6.50pmol/L

TSH 0.03 0.35-5.00mu/L

Zinc. 12.04 11.00-24.00umol/L

Serum folate. 3.5 2.00-17.00ug/L

Serum ferritin 25 15.00-250.00ug/L

Thanking you in advance for your responses.

RockyPath profile image
RockyPath

Your doctor's concerns are based on a ten-year-old study conducted in Tayside, Scotland and published in 2010, academic.oup.com/jcem/artic...

The study is not exactly conclusive, and they would rather err on the side of letting everyone have a dismal quality of life, than open the door to some slight chance of increased fracture risk.

There's a more compelling study that says fracture risk is a function of genetic factors, implying that some people will spend their lives worrying about fracture that's never going to happen. If I can find it again I'll post it.

I was provided with sufficient raw materials (T3 and T4 hormones) that I have been able to conduct my own science experiments on myself with T3 doses. It's a good idea to keep close notes of everything you do and what you notice, including the time of day. Because T3 has a short half life, you can experiment with taking more and, whatever happens, the effects will pass within 24 hours. The T4 has a longer half life so if you cut back for even a week it won't have any long-term effect.

If you feel brave, simply try more T3 (another 5 or 10 mcg) for a day and see how you feel. But definitely reduce the T4 when you do so. Everyone has slightly different clocks and rhythms for how they produce and use thyroid hormones. You may find you feel best if you take all of the T3 at once at 10 PM, or it might work better to split it up in two or three doses across other portions of the day. Your doctor can only suggest something based on prior published studies. It doesn't mean it will work for you.

ThyroidObsessed profile image
ThyroidObsessed in reply toRockyPath

Thank you that sounds like a sensible and logical way to go about trying the t3, Iv been told to reduce the Levo from 104mcg a day to 75mcg and add 5mcg of t3 twice a day so 10mcg, but I'm gonna start slower than that as o know by experience I am very sensitive to the thyroid hormones..

Your bloods show poor conversion, so I'd drop levo by 25mcg and take 5mcg of T3 to start with (even if prescription is for more). I found T3 helps a lot with mood and some psychs use it for depression. But more isn't always better - it needs to be the right amount for you

ThyroidObsessed profile image
ThyroidObsessed in reply toAngel_of_the_North

Thanks for your reply, yes I am gonna start slowly, she has told me to drop from 104mcg to 75mcg ad take 5mg of t3 twice a day but I'm gonna start slower than that, as I know I'm very sensitive x

Myro profile image
Myro

You don't have be to take my opinion seriously. Take it like thoughts of someone with not clear mind. But destroy my writing with proofs.

Low level of blood sugar have effects like you are experiencing. Can try diet for people with very low blood sugar. Can not harm. After fasting over night tests of sugar are calm. And fructose or corn syrup (HFCS) is worse than glucose. No bubbles, nothing sweet... Half of ordinary sugar is fructose.

Your blood test look like normal. Same people are very satisfied with natural supplements for thyroid hormones. Makes from pigs, bovine or sheep thiroid gland. It has much more then T4 or T3 hormones. Some take only a part of ich. It is nice that you feel your body. It is the best way to regulate ...

Check for symptoms of lack of iodine and consequences. Just to know. 24 hours urine iodine level test is only good method.

pennyannie profile image
pennyannie

Hey there Thyroidobsessed

I dropped 25 mcg of Levothyroxine going down to 100 mcg daily and added 6.25 T3 at 4.00 in the morning and went back to sleep waking up about 4 hours later.

I was so relaxed and calm. I felt amazing and I'd forgotten how well, mentally, I could feel.

I had a problem sourcing the same T3 and the second make I purchased gave me bad headaches and was very expensive.

I've now moved onto NDT and am very happy with this hormone replacement.

Since I haven't a working thyroid I believe this natural desiccated thyroid suits me better.

I think you owe it to yourself to give it a go, you've nothing to loose.

Dropping your T4 makes sense as you are over range and you feel uncomfortable on a high level of T4 anyway.

The brain needs a large proportion of your T3 and I hope you'll find this small adjustment makes a massive improvement to your health.

You are lacking in T3 and it can effect your whole body, either mentally, physically, psychologically, emotionally and or spiritually.

ThyroidObsessed profile image
ThyroidObsessed in reply topennyannie

thank you so much for your reply i appreciate every single one of your replys, its so hard when the specialists are so under educated in the thyroid, and it worries me shes advising me wrong..

i am having some more bloods done on thursday this week as my last bloods were done over 8 weeks ago and even though she has given me the prescription of t3 she is going on my last bloods pver 8 weeks ago and i dont think thats right..

as i know my bloods can change even drastically in a couple of weeks without no dose change because of my hashis...

im gonna start the t3 really slowly as i know im very sensitive to any dose change up or down...

i really hope the t3 helps my mental issues i just want to be normal again!

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