Do I need T3?: Hi everyone, I’m feeling confused... - Thyroid UK

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Do I need T3?

Jojozo
Jojozo

Hi everyone, I’m feeling confused and after some advice. I went to see an NHS endocrinologist in January who took me off T3. He is the third NHS endo who has insisted I don’t need it. I was previously put on it by two separate (private) functional nutritionists because tests have showed that I don’t convert well. The last endo did a series of tests, concluded that I had a small thyroid gland, and discharged me via letter 🤷🏼‍♀️

I am 46 and peri-menopausal. I was diagnosed with an under-active thyroid in my early 20s and Hashimoto’s (again, privately) seven years ago. My TSH level has been 0.01 since I started taking the T3 seven years ago (I was on 12.5mg every morning). Before that my TSH levels were slightly higher.

I currently take 125mg of Levothyroxine per day. I have attached my private blood test results from March. All my vitamins were within range. I’ve put a couple of examples below, as well as my TPA result.

I keep having terrible flare ups of symptoms, around once a month, which could be due to peri or Hashimoto’s, or a lovely combination of both!

It begins with bad pelvic/gut pains and ends up with me being bed bound for days/weeks on end with a sore throat, sinus issues, headaches, anxiety, low mood, terrible nausea, muscle aches and chronic fatigue. I may be clutching at straws but I’m wondering if T3 could help? I did still have these flare ups while I was taking it, but maybe I wasn’t taking enough?

Another functional nutritionist (a friend of a friend!) told me the other day that taking Armour Thyroid would make a huge difference to me, but obviously it’s not prescribed in the UK. I’m wondering whether I need to try and track some down independently.

Serum Folate - 17.3 (3.89 - 26.80)

Vitamin B12 - 629.7 (197 - 771)

Thyroid Peroxidase antibody - 65.0 (0 - 24

Unit IU/mL)

Thanks so much in advance for any help!

90 Replies
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SlowDragon
SlowDragonAdministrator

Obviously also need vitamin D and ferritin tested regularly

But even with all four vitamins optimal, if you are gluten intolerant (and very high percentage of Hashimoto’s patients are) you will still need to be absolutely strictly gluten free

Suggest you reread post from 2 years ago

healthunlocked.com/thyroidu...

Jojozo
Jojozo in reply to SlowDragon

My god, that’s how long it’s been going on for. Same symptoms and nothing is showing up on tests. The borderline test result was seven years ago, and I’ve since had one done by the NHS and one done by a functional nutritionist, and both came back normal. I asked the FN if it was unusual that my result was clear when I’ve got Hashimoto’s and he said that I’d ‘bucked the trend’. I did actually go gluten free for some time after that post but I still had the flare ups. I also don’t understand why I can be fine for ages and then wake up one morning after 12 hours’ sleep and not be able to get out of bed. I am clutching at every straw going.

SlowDragon
SlowDragonAdministrator in reply to Jojozo

“Same symptoms and nothing is showing up on tests“

There’s no test for gluten intolerance

Only a test for coeliac

Only 5% of Hashimoto’s patients are coeliac

But around 80% Hashimoto’s patients are gluten intolerant

The ONLY way to know is to try it ....and stick on it absolutely

Jojozo
Jojozo in reply to SlowDragon

Thank you 🙏🏼

SeasideSusie
SeasideSusieAdministrator

Jojozo

I went to see an NHS endocrinologist in January who took me off T3. He is the third NHS endo who has insisted I don’t need it.

What was the reason for taking you off T3 and what were the results of the test that prompted this decision?

What did the other endos say was the reason you don't need it?

Jojozo
Jojozo in reply to SeasideSusie

Hi Susie, they’ve all said that I need to come off T3 to give my body a chance to convert in its own (this was before any test results), but private tests have shown that it doesn’t. I did tell him that but he didn’t seem terribly interested 😂

I came off the T3 for four days before I had the blood test done by him because he said it would be out of my system by then, and the result was the same as it always is - 0.01.

Have you stayed off it? And have you noticed a difference?

SeasideSusie
SeasideSusieAdministrator in reply to Jojozo

Jojozo

EDITED to correct misinformation about the half life of T3.

4 days is maybe not quite enough for T3 to leave your body. It has a half life of between 19 hours and 2.5 days depending on source of information .

Taking the information from gpnotebook.com gpnotebook.com/simplepage.c..., using 19 hours as the half life then if you took 20mcg today there will be 10mcg of that dose left after 1 day, 5mcg after 2 days, 2.5mcg after 3 days, 1.25mcg after 4 days, etc.

If you take the half life to be 2.5 days as mentioned by Pharmacokinetics data mentioned on Wikepedia en.wikipedia.org/wiki/Lioth... then it would take longer, i.e. if you took 20mcg today there will be 10mcg of that dose left in 2.5 days, 5mcg afer 5 days, 2.5mcg after 7.5 days, 1.25mcg after 10 days, etc.

If you had test results that showed you didn't convert well on Levo then that should be enough proof, you shouldn't have to act as an endo's guinea pig or pet project to see what happens if you come off it.

Does he want your TSH within range? Then on T3 that's very unlikely to happen.

I take a combination of Levo and T3 after I found I didn't convert well. NHS nor private doctor involved, the Levo is prescribed and as far as my surgery is concerned that's what I take, the T3 is all my doing because I know I would get nowhere with the NHS.

I have not stayed off it since I've been on T3. Why would I? I don't convert well. Adding T3 gives me the results I need - symptom wise and number wise.

Jojozo
Jojozo in reply to SeasideSusie

Exactly, that makes sense! If you feel better on it, why would you come off it? Ridiculously I’m now nervous about going back on it in case it makes me worse, but to be fair I can’t feel much worse than I do during a flare up.

I didn’t ever see the endo again because my appointment got cancelled due to covid, so I had a five minute phone call with him when he told me that he didn’t find anything wrong and discharged me. There was no mention of the T3 or doing another test.

I’m either going to ask my doctor to do a full blood test or go privately. I’ve been off the T3 for nine months now so it will be interesting to see if anything has changed with my levels.

SlowDragon
SlowDragonAdministrator in reply to Jojozo

So make sure to do all thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Do private testing on Monday or Tuesday morning and post back via tracked 24 hour postal service

Remember to stop taking any supplements that include. Biotin a week before ALL blood tests

Minimum of 6-8 weeks after being absolutely strictly gluten free

Soya free too

Jojozo
Jojozo in reply to SlowDragon

That’s interesting about soya. I avoid dairy so I’ve been having soya 🙈

SlowDragon
SlowDragonAdministrator in reply to Jojozo

Anyone on any replacement thyroid hormones should avoid all soya

(Including soya lecithin)

Dolphin40
Dolphin40 in reply to SlowDragon

Can i ask why please SlowDragon?

SlowDragon
SlowDragonAdministrator in reply to Dolphin40

Here’s a few links

thyroidpharmacist.com/artic...

verywellhealth.com/soy-and-...

livestrong.com/article/1372...

These links says avoid for four hours after taking levothyroxine

mayoclinic.org/diseases-con...

markvanderpump.co.uk/blog/p...

Is there any scientific evidence that T3 lasts for seven days in the body? That is usually said to be the half-life for T4, whereas T3 is said to have a half-life of a few hours in blood and up to three days on cellular level (although the latter cannot be measured). But this is the first time I see seven days half-life for T3.

The short half-life of T3 is often used by doctors to discourage patients from taking T3 meds as they claim it would result in unstable levels. If T3 lasted for seven days in the body, that would not be a problem.

SeasideSusie
SeasideSusieAdministrator in reply to PurpleCat71

PurpleCat71

You are correct. The half life of T3 is said to be 19 hours to 2.5 days depending on the source of information. Obviously a foggy brain day for me. I will edit my post and thank you for pointing this out :)

SlowDragon
SlowDragonAdministrator in reply to Jojozo

It would take minimum of 6-8 weeks, and more likely 10-12 weeks for a TSH to react to stopping T3

If TSH has been suppressed a long time, it may never rise

If you are gluten intolerant, and symptoms suggest you probably are, then it’s likely you might need addition of small doses of T3

Getting Dio2 gene test can be helpful. If you test positive for Dio2 gene then this is also strong indicator of needing small doses of T3

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

Jojozo
Jojozo in reply to SlowDragon

Thank you, I do need to do that test. It’s a bit odd that the endo seemed to think all the T3 would be out of my system and give me a correct reading within days. No wonder this stuff can feel like a struggle.

BrynGlas
BrynGlas in reply to Jojozo

Was he trained in Thyroid, or had an interest in thyroid probs though? He may have majored in diabetes. Have you got the Thyroid UK 'list' ?

Jojozo
Jojozo in reply to BrynGlas

I haven't but I'll get hold of it. I am yet to see an endo I would recommend to anyone else!

BrynGlas
BrynGlas in reply to Jojozo

I have found 2 on the list who aren't too far from me, so I have asked for a referral, via email, if the surgery will accept that. But at least we know that someone has found them worth recommending, the best we can hope for really.

SlowDragon
SlowDragonAdministrator in reply to Jojozo

Vast majority of endocrinologists are diabetes specialists and have little understanding of how T3 testing and dosing works

So true! My NHSendo put me on DHEA...& it caused me to bleed!! (Well past meno!!)...Too much info, I know!!🤣

Sometimes, the TSH does not return to normal if it has been suppressed for years. I´m living proof of that.

At one point, before knowing what I know today, I was persuaded by a doctor to lower levo to normalise the TSH. I was not on T3 back then, only levo. I needed 200 mcg daily to just feel remotely human. My TSH at the time was 0.05. My first doctor did not have a problem with it so I stayed on that dose for around seven years with the TSH always being around 0.05. When he retired the new doctor said I was at risk for heart disease and osteoporosis and needed to cut back on levo. He wanted me to go from 200 to 100 mcg in one go, but I had read that you should decrease it by 25 mcg every 6-8 weeks so insisted on that. After six months, I was on 150 mcg of levo, feeling much worse, my FT4 levels dropped from 1.4 to 0.9 (0.7-1.5), but my TSH remained 0.05. The doctor was very puzzled but suggested lowering levo to 125 mcg...at which point I gave up on doctors and started self-medicating. It was only later that I ordered private testing that showed low FT3 on 200 mcg of levo (2.3; ref 1.7-3.7). No doctor had ever ordered FT3.

I´ve read that the HPA axis can become deregulated if your TSH has been suppressed for years, and that the TSH may never return to normal. So, in my own experience, TSH normalisation should not be a goal in this context.

SlowDragon
SlowDragonAdministrator

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

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Lor7
Lor7 in reply to SlowDragon

I understand that. I have a great private endo. However, there is a lot of autoimmune disease in my family, daughter and her daughter are coeliac, grandson type 1 diabetic , daughter has autoimmune kidney disease. a niece with lupus. I’m not coeliac but did have food intolerance test done some years before which came back as glucose intolerant. So. I guess, I’ll give gluten free a go. Seems likely it might make s difference.

SlowDragon
SlowDragonAdministrator

Exactly what vitamin supplements are you currently taking

Jojozo
Jojozo in reply to SlowDragon

Thank you so much for all your advice. I’ll get a list of supplements together tomorrow. There are quite a few!

Jojozo
Jojozo in reply to Jojozo

Okay, deep breath! Acetyl L-Cartinine, Gingko Biloba, Adrenavive II (1 per day), B complex, vitamin A, Raw Zinc, D3, Ashwagandha, B12, Betaine HCL, Omega 3 fish oil, vitamin C, magnesium, Immunity complex, L-Arginine, Selenium.

These have all been recommended by functional nutritionists, but ironically none of it seems to have made much of a difference. I guess it's hard to know what's working and what's not. I also recently tried Ox Bile because I have low bile function, but that didn't do much for me either.

Did you remember to stop your B complex a week before blood tests? It probably contains biotin which can affect test results

I didn't realise that! I don't, but I will from now on, thank you. I'm going to ask my doctor for a blood test when I speak to her tomorrow. I've been off the T3 for a long while now so I'll stop the supplements too, and hopefully I can get an honest reading.

Redlester
Redlester in reply to Jojozo

re the ox bile - depends how you take it - what were you doing with it? what brand were you using??

Jojozo
Jojozo in reply to Redlester

It was Nutricology 125mg and I was having one before meals, but I've stopped it because I'm not able to eat meals at the moment.

Redlester
Redlester in reply to Jojozo

yep Jojozo - excellent brand and the one I use but I think I can spot your mistake - better if you take it at end of meal - if you take it at start then the ox bile "hoovers" up the stomach acid meaning you will not have any acid to digest your food. If you think of it your gallbladder doesn't know what is coming into the stomach in terms of fat in a meal until it is in there and then - at end of meal - would eject bile into the stomach to emulsify the fat so your body can use it. Try taking the OB at the end of a meal and see if that makes a difference. Another tip which makes it work better is that it is better if you take random amounts - again, your gallbladder doesn't secrete 125mg with every meal - the amount it secretes varies according to the fat content of what you are eating. I buy the 500mg capsules and then decant them into empty capsules so no capsule is ever the same size, and then judge how much fat I am consuming in a meal [small amt /medium /high] and then dose accordingly. Taurine caps also help to thin the bile and work well if taken at same time. Wish I didn't have to take OB - would love to get to position where I no longer needed it. Hope this helps.

Jojozo
Jojozo in reply to Redlester

That's really helpful, thank you! I just assumed you took it before (I'm not always great at reading instructions!) The guy who recommended it said it would help with going to the toilet, but it actually constipated me. Perhaps because I was taking it the wrong way...

Redlester
Redlester in reply to Jojozo

yes - that might have been what caused the constipation - bile is one of the things which lubricates your bowel (and colours your stool)- and helps to make you go - sometimes if I try to leave off the OB supps for a bit that is one of the ways I use to monitor how my body is doing ejecting its own bile - am I able to go no problem and is the colour what it should be?

Jojozo
Jojozo in reply to Redlester

That’s great advice, thank you. I might start a photo gallery in my phone so I can do comparisons (I’m being serious!).

Redlester
Redlester in reply to Jojozo

Oh dear me no!!! all you have to do is look and make a mental note of - "normal" or "bit light/sandy coloured". Are you managing to eat at all??

Jojozo
Jojozo in reply to Redlester

Ha! Don't worry, I won't share it. I'm mainly having juices/smoothies. I can a bit and often feel a bit hungrier in the evenings, but I definitely couldn't eat a full meal.

SlowDragon
SlowDragonAdministrator in reply to Jojozo

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...

How much vitamin D are you currently taking?

Which vitamin B complex?

Suggest you get vitamin levels tested

These affect adrenals

Adrenavive II (1 per day),

Ashwagandha

Nether of these should be taken without getting saliva cortisol and DHEA test regularly

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

Magnesium needs to be four hours minimum away from levothyroxine

Hi Jojozo,

I’m going through the menopause with Hashimoto’s and I have phases of exhaustion too, I spend a lot of time in bed struggling to get up. But then one day I finally get a period it’s like magic, the tiredness disappears and I’m back to my usual active self.

As I’ve got closer to it, it’s been hard to determine what’s menopause and what’s Hashimoto’s. But the tiredness seems to be a very common symptom if menopause. Have you had a Menopause test?

BrynGlas
BrynGlas in reply to KikiLR

I started having menopause and hypothyroid at the same time in 1998. I finally got diagnosed hypo after taking Basal temp and pulse each morning for months and my then GP did actually apologise after the blood test results came out, because I had complained of oedema which was evident each morning when my engagement ring was painfully tight & he said that was a symptom of hypo! But what isn't?

Going onto levo was a complete failure for me, though GP said I was textbook regarding results and an Endo would never agree to see me as soon as my test results were revealed. Told to accept that I was ageing!!!!

It was all downhill after that and it has never changed. I gave up dairy, gluten, eggs and coffee to attempt a change, but none seemed to make any difference, I now have maximum 1 coffee daily, but it is black. And I am trialling T3 alongside levo as well.

Jojozo
Jojozo in reply to BrynGlas

I really hope the T3 makes a difference to you. Why did your dr say an endo wouldn't see you? Because your results were too 'normal'? Mind you, not many of them seem to be terribly helpful anyway!

I don't drink alcohol or coffee (I love it but it makes me jittery) and when I get these flare ups I can barely eat due to extreme nausea, so I exist on smoothies for days on end. I know a lot of them are packed with sugar but at least I'm getting some nutrition in. Do you eat gluten? I've given it up several times in the past but going by Grey Goose's advice it's time to do it once and for all.

BrynGlas
BrynGlas in reply to Jojozo

Yes, he said that my results were textbook perfect and so I the Endo would not find it necessary to see me. I was also told that Levo was the only medication possible and surely there was at least NDT then??? Though I have no idea whether that is correct or not, it's a long time ago.

I have been low carb for a very long time, in an attempt to keep weight in check, so it was pretty easy to go gluten free, yes. I do occasionally have rye bread, but it is very rare. But believe me the thought of a round of white toast makes the saliva run, as does the thought of a chip sandwich! LoL

I don't seem to have Hashi's (test negative) but I am assuming that I might be, because the lovely admins on here have said that a negative test does not necessarily mean negative.

I really hope you get some respite asap, you are really having a bad time of it and there doesn't seem to be much to be done except try, try, try again. Best Wishes

Jojozo
Jojozo in reply to BrynGlas

Thank you so much. I'm doing what I can and hoping for the best, but it's so brilliant to get advice from people who have been there and get it. I think mine is a combination of things, but it's good to be able to rule things out too. I'm going to start being strict with the gluten long term (but oh, the chip sandwiches!) and see if that helps.

helvella
helvellaAdministrator in reply to BrynGlas

Thyroid, BP (the UK desiccated thyroid) disappeared around 1980.

BrynGlas
BrynGlas in reply to helvella

I rest my case, was available and I was never told anything about it! How strange is that?

Jojozo
Jojozo in reply to KikiLR

I agree - it's hard to know where one ends and the other one begins! These flare ups started badly around two and a half years ago, but looking back I did have similar symptoms before then, but they were milder. So I wonder if it started when peri-menopause kicked in, but I didn't realise it had.

I'm on HRT, which has helped, but sadly it hasn't seen the cure-all it is for some people. I've had terrible PMT since my teens so I wasn't expecting an easy ride, but I wasn't expecting this! Weirdly these days I sometimes feel better before my period and I get the flare ups afterwards. It's very odd. And like you, I have weeks of feeling totally normal and think I've turned a corner and then... bam!

When you say menopause test, do you mean a blood test? I had one at the beginning of the year which determined I was in peri, but I still have periods.

Redlester
Redlester in reply to Jojozo

just wondering what HRT are you on?? both estrogen and progesterone? ? some of the symptoms you are reporting might indicate progesterone deficiency

Jojozo
Jojozo in reply to Redlester

Thanks for replying. That's interesting. I'm on a combined patch - Evorel Sequi - although strangely (sorry if TMI) I have my bleed when I put the combined patch on, but progesterone is supposed to suppress bleeding. Even my doctor is confused.

I had a Dutch test done a couple of years ago and my oestrogen level was really low but my progesterone was in the normal range. Why can't it be simple?!

Redlester
Redlester in reply to Jojozo

All the hormones are interlinked and there is an at times confusing interplay between them - progesterone impacts how your thyroid hormone works in the body - too much estrogen can make you hypothyroid - in the western world with the way our bodies are so mucked up with all kinds of chemicals not to mention stress and xenohormones a lot of women have too much estrogen to start with and don't need any more even at peri/meno and in fact at that time need progesterone which the body gradually becomes deficient in [fat cells will always make most women enough estrogen at this time]. Sadly, GPs don't seem to have much understanding of meno and almost none of peri and the very serious impacts these can have on female functioning - they are trivialised as "women's problems". I will PM you some information if you are interested.

Jojozo
Jojozo in reply to Redlester

That would be amazing, thank you!

Hi Jojozo

Do you mind me asking how you found out you were not converting? Also, how/who prescribed you T3 as i thought you couldn’t get it in the UK?

My 6 year old daughter was diagnosed 7 months ago and Levo is clearly not working and i also feel she is not converting.

Jojozo
Jojozo in reply to Dolphin40

Bless her, that's so young. I found out via a test with a functional nutritionist, and then I started buying it on private prescription via him from Belgium. But it was so expensive I had to stop, and now I source it myself online. I'm not sure it's terribly sensible but I have no choice!

I used to get Armour on the nhs.

Jojozo
Jojozo in reply to penny

Wow, that's great! Can I ask which area of the country you live in? I'm in Sussex and when I asked one of the doctors in my surgery about prescribing it for me he was having none of it.

My comment is never the favor but you don't have to have t3 unless you truly need it. I have been off t3 for a while and am better than ever, I had withdrawal from it. T3 is extremely powerful, only take it if YOU need it. Before I get messages telling me I'm wrong, note that I said unless needed. It's assumed everyone should be on it and that's not the case.

Also, when I stopped taking it, it took me a month to even out.

Jojozo
Jojozo in reply to jbicondoa

Thanks for your reply. I've been off it for eight or nine months now, but I was on a small dose and was already feeling very unwell so I didn't notice any difference. I think I'm just hoping it might be the magic pill I'm looking for, but I'm not sure such a thing exists!

There is a tendency, I notice, on some posts on this site to treat T3 as the magic pill that is the answer to all problems. It can certainly be part of the answer if you are a poor converter of T4 but unless T3 is low in comparison to T4 then it is not something to take willy-nilly; IMHO. I take it as I do not convert and also have THR; it has taken years of trial and error and tests to get me to this point in my treatment.

jbicondoa
jbicondoa in reply to penny

You got that right! Sounds like you're on the right path. I'm not perfect right now by any means but my workouts are finally getting easier and my diet is better even though I'm not gluten free. I eat three meals a day and try to eat veggies and good foods with all of them and I do exercise. Before I was at barely able to exercise. So I have good and bad days but I've just learned that T3 in our bodies when we don't need it or maybe have a chance to convert on our own, is never a good idea.

Jojozo
Jojozo in reply to jbicondoa

The T3 didn't seem to make a huge difference to me, but the last functional nutritionist I saw told me I needed to up my dose, and the other suggestions he made haven't helped so obviously I was hoping that was the answer.

Rather worryingly I've just looked up the first functional nutritionist I went to see seven years ago (who initially put me on T3) and it turns out he's been struck off for nine months for over prescribing 🤯

jbicondoa
jbicondoa in reply to Jojozo

It is consider somewhat of a stimulant and so at first I felt amazing and and then I dropped and started to have lots of anxiety and could not figure out what was going on I just felt off. After a lot of reading and diving in to a lot of studies and different things like that, I realized not everyone needs it and the amounts that we're taking are way more than we're supposed to. Our bodies only convert I believe they said 4.75 mg a day of T3 and some people are taking 30-40 up to a hundred.

I do think there's a lot of other things people can look at it they still don't feel optimal. Most just assume t3 is needed. For me it was my diet and I needed to get exercise in even if I could only do a little bit of day. Exercise helps that conversion.

Jojozo
Jojozo in reply to jbicondoa

That's really interesting, thank you. I do exercise daily (even if it's just walking my dogs) but sticking to a healthy diet is tricky because I have constant nausea. Thank god for smoothies!

Jojozo
Jojozo in reply to Jojozo

I was only taking 12.5mg per day, which I thought was a small dose, but maybe it's not after all!

jbicondoa
jbicondoa in reply to Jojozo

Hope you figure out the nausea! I do as much as I can and there are some days where I just can't and that's okay. I've learned a little bit more self-care and I find I have a lot more energy now. I still have days where I crash or feel rough the next day, but not like it was before and it's certainly not hidden by taking the medication I don't need.

Vishja9
Vishja9 in reply to jbicondoa

You are right sister.In order to feel good,one need optimum amount of serotonin and dopamine and for a while t3 stimulate the production of these feel good chemicals and so one feel good initially and once their receptors got down regulated one feel as before.

Anxiety is due to lack of magnesium and dopamine and it is because of high dose of t3.One should remove all the stimulants from life to feel normal instead of taking some magic pill.

Jojozo
Jojozo in reply to Vishja9

I would very happily settle for normal, I just don’t seem to be able to get there - ha! I stopped the T3 at the beginning of the year but I think the anxiety now is down to general hormone fluctuations.

Jojozo
Jojozo in reply to penny

I have been told I am a poor converter, but I think I need to do the Dio2 gene test to get a definitive answer.

Acetyl L-Cartinine, Gingko Biloba, Adrenavive II (1 per day), B complex, vitamin A, Raw Zinc, D3, Ashwagandha, B12, Betaine HCL, Omega 3 fish oil, vitamin C, magnesium, Immunity complex, L-Arginine, Selenium.

I just wanted to mention that Adrenavive II will increase cortisol and Ashwaghanda will lower it.

Also, vitamin A is fat-soluble. If you take too much it builds up, it doesn't get excreted in urine or faeces. See this link :

en.wikipedia.org/wiki/Hyper...

If the vitamin A you take is actually beta-carotene (which is converted to vitamin A in the body - if the body is capable of doing the conversion) then that can't build up to dangerous levels. On the other hand it might not do you much good either - people who are hypothyroid can't do the conversion from beta-carotene to vitamin A very efficiently.

en.wikipedia.org/wiki/Beta-...

thyroiduk.org/managing-your...

It all depends on the form of supplement you take and how much of it you take whether it is doing good or doing harm - and I'm not knowledgeable on the dosage of vitamin A that people should take. See this link for further info :

en.wikipedia.org/wiki/Dieta...

Jojozo
Jojozo in reply to humanbean

Thank you so much. I didn't know Ashwaghanda lowers cortisol. I suffer with low cortisol (but not Addisons, I've had a test), and the last functional nutritionist I saw knew that but put me on it. How odd! I'll stop taking that. I'll also look into the Vitamin A. I was taking it to help my skin (I still get acne at 46!) but I'll definitely stop if it could be doing me more hard than good. I forgot to add L-Theanine to the list, which I take for anxiety, but now I'm wondering if they lower cortisol too. I'll do some research into those too...

humanbean
humanbean in reply to Jojozo

Both these lists :

rt3-adrenals.org/does_it_af...

stopthethyroidmadness.com/s...

show common drugs and supplements which have some effect on cortisol. Unfortunately neither of the lists say whether they raise or lower cortisol, so if any are relevant to you you would need to investigate each one individually.

I can tell you from my own experience that 5-HTP, which I take as an OTC anti-depressant, raises cortisol, and Holy Basil (aka Tulsi) lowers cortisol.

A link you might find of interest :

healthunlocked.com/thyroidu...

Good luck.

humanbean
humanbean in reply to Jojozo

I forgot to mention that I've found vitamin B12 in the form of methylcobalamin has helped me to stop getting spots. I had them all my life until my 50s when I started taking the methylcobalamin. I take a very high dose (5000mcg four times a week plus a daily B Complex - one tablet of Igennus Super B). When last measured serum B12 was around 1500, but it has been over 2000 several times. Active B12 tends to be top of the range.

The only issue I have with the B12 is that when I first started taking it it actually made my spots worse, but within a few weeks the effect calmed down. After about three months my skin was better than it had been since before puberty. The other effect I got from it is that it almost cured my eczema - and certainly made it about 95% better than it was. I've had eczema since I was about 9.

Jojozo
Jojozo in reply to humanbean

That’s really interesting thanks, and really good to know. My mum is in her 70s and she still gets spots, so it’s partly genetic. I’ve been on some topical cream from the doctor which is working well so far (I didn’t want to go down the Accutane route again) but I would much rather use something natural like B12.

Your FT3 is slightly more than 50% up in range. This makes me doubt that T3, by itself, is the problem. Having TPO antibodies, however, is another matter; I would be more inclined to say that having active Hashimoto's is what contributes to your symptoms. You need to examine food allergy and environmental causes of antibodies. Have you looked at what any of the "alternative" docs on youtube have to say about Hashi's? Have you looked into the root causes of Hashi's ... e.g. Izabella Wentz has some books, "Root Cause" and "Hashimoto's Protocol", which examine the underlying causes of Hashi's. One common cause of Hashi's (and the accompanying gut disorders) is gluten, but there are others.

Jojozo
Jojozo in reply to Eddie83

Thank you, those videos sound really interesting. I'll take a look. I've heard of Izabella Wentz but I haven't read any of her books. I realise this may be a stupid question but are the symptoms of Hashimoto's so bad they can leave you bed bound? It's like having really bad flu and a terrible hangover combined, which is annoying as I don't drink!

I've heard the symptoms can be pretty disabling. But, perhaps because of being male, my symptoms while in active Hashi's, were not as bad as yours. (The main symptoms I had were those caused by nutritional deficiencies, because gluten wrecked my gut.) BTW, are you aware that there are many autoimmune disorders, and it is not rare for people to have more than one? I'm thinking in terms of you might have a 2nd disorder that, along with Hashi's, could cause severe symptoms. Having Hashi's increases your chances of having another autoimmune disorder.

Jojozo
Jojozo in reply to Eddie83

I’ve heard they like to travel in pairs! I had some tests done last year and nothing showed up, but I was diagnosed with fibromyalgia, so that is also an issue. But it’s so strange the way it comes and goes like it does. One week I feel totally ‘normal’, the next I feel like I’ve gone crazy and I can’t get out of bed!

Eddie83
Eddie83 in reply to Jojozo

Do you have any reason to believe you have a sleep disorder? Is there any correlation between sleep and going from "normal" to "crazy"? And what do you think about Izabella Wentz' contention that almost every case of Hashi's also includes a gut disorder? As I learned, there are plenty of expensive tests to diagnose gut disorder; but I suspect that low Total Blood Protein is a cheaper way to make that determination. Unfortunately the average MD doesn't see much significance in examining blood protein level, unless it is well under range.

Eddie83
Eddie83 in reply to Jojozo

BTW are you aware that the late John C. Lowe claimed, with a number of case studies, that T3 is one method of treating fibromyalgia?

Jojozo
Jojozo in reply to Eddie83

I have a sleep disorder called Parainsomnia, that was diagnosed about eight or nine years ago, but I take tablets so I get plenty of sleep each night. When I'm 'well' I can sleep for six hours and have tons of energy, but when I have a flare up I can sleep for 13 hours and I'm still not able to get out of bed. I've woken up this morning feeling almost back to normal, having spent the last six days exhausted and in pain (and feeling terrible mentally too). It makes no sense.

Nothing changes in terms of diet or sleep or what I do on a daily basis, and it just comes on from nowhere, and always begins in my gut/pelvic area, so it sounds like in my case Isabella Wentz could be spot on!

That's very interesting about T3 and fibromyalgia. I'm having a blood test next Friday so that might shed some light on things. I'm also having an endoscopy on Monday to try and find out the cause of my nausea. I'm really lucky that I have a very understanding doctor, who is almost as keen to get to the bottom of all this as I am!

Eddie83
Eddie83 in reply to Jojozo

Having an interested doc is at least half the battle. BTW you did not mention what sort of tablets you are taking for parainsomnia; are you sure they have no side-effects?

Although John Lowe has passed, there is still stuff online about T3 and fibro. Google "T3 fibromyalgia John Lowe". Lowe thought that the fibro cases he treated successfully with T3, were the result of thyroid hormone resistance. These materials describe a case in which fibro symptoms and Hashimoto's occurred together.

See,you should increase your T4 hormone gradually and do not take t3..As far as I know,your T4 conversion issue is due to lower caloric intake, stress and some nutritional deficiency.

I am suffering from hypothyroidism and I had also conversion issue so my doctor put me on T4 and T3 medicines and I felt worse after taking t3.

So he put me on 75mcg T4 and my TSH came back to 3.4 and I felt as if no change has happened in my state.

So,I gradually increased it to 200mcg and I felt better than before.I increased it further to 300mcg per day and got myself tested and my TSH came around 0.3 and I stayed at this dose and believe me,I feel as if I have no issue.

Your dose should be as per your wellbeing and not as per lab reports.

So keep increasing your T4 gradually by 25mcg after every 5 days and when it reach to 175mcg,wait for 1 and half month and get yourself tested and if still you do not feel good,increase it futher.Make sure you do not suppress your thyroid gland so your TSH should be above 0.1.Eat healthy food,live healthy and happy life...

Stress is the major cause of all the thyroid related issue so make sure you meditate daily on your root chakra.Root chakra is in the tail bone so when you meditate there,stress goes down.At the same time,you should accept your short comings with open eyes as others do.When someone gets thyroid disease,he wants to feel as much as good as possible which is impossible.Everybody has some issues and everyone does some error and they accept it except thyroid patient.

So be positive and avoid stress..Don't use T3 as our body knows better than us what is the requirement.

T3 increases metabolism and if there is an absence of nutrition in food and still you take T3,it may harm you.

T4 is safest and you can take in high doses as you know body adjusts how much t3 to make.

If you take t3 medicine,you will suffer cell resistance to t3 as it happens with Insulin.

Find some other reasons of your health issues, not each and every problem is in thyroid.

Even when we fall sick of fever, we feel thyroid symptoms and it is because of high cortisol and so there is no wrong in your thyroid if you feel bad during fever.

Stress is the major issue and there are some other hormones are also involve in this like high Insulin and prediabetic.

Avoid T3 and increase T4 until you feel normal.

tattybogle
tattybogle in reply to Vishja9

Hi Vishja9, I think your advice to "raise T4 until feeling well, but do not supress your thyroid gland- so TSH should be above 0.1 " could be impossible to achieve for some people, ie. if their TSH is lower than this but they are still not feeling good on their current T4 only dose.

I don't see how Jojozo could put this idea into practice since TSH is already lower than 0.1 and has been 0.01 for some time. As other people have pointed out, TSH sometimes takes a very very long time to raise again once it has been low for a while.

Also in my case, i felt OK on 125 mcg levo with my TSH at around 0.04 or 0.05, and then a reduction in dose to 100mcg brought my TSH up to 0.5, but this left me constipated . So i would not be able to follow your advice either. If i tried to take enough T4 to make me feel good it would certainly put my TSH below 0.1

Jojozo,I could not find any reference here to if you are taking any Levo T4 at the moment or whether you have had no thyroid hormone replacement at all since coming off the T3 ?

I wouldn't recommend anyone go straight to T3 until they have given Levo alone a proper try to fix their hypothyroidism, but if that doesn't work it does seem that many people do better with some T3 added, and a very few end up on T3 only.

Jojozo
Jojozo in reply to tattybogle

Hi Tattybogle, thanks for your reply. I currently take 125mg of Levothyroxine a day. It's been that dose (give or take 25mg up or down) for the past 25 years or so. The T3 was added in seven years ago by a private functional nutritionist (who has just been struck off for nine months for over prescribing!). It was after I started it that my TSH dropped to 0.01, where it has stayed ever since.

tattybogle
tattybogle in reply to Jojozo

so i wouldn't hold your breath waiting for your TSH to rise then. I wanted to know if my usual 0.04 was capable of rising a few yrs ago, so stopped levo for about 10 days and than tested, sure enough it went to 7!, so i know it will rise if i kick it hard enough, but obviously this is not a good idea . I was just curious.

I think the endo was being a bit optimistic, thinking a few days without T3 would give a representative result onT4 only , but you can now be certain that all additional T3 is out of your system , so if you want to see what your conversion is like you just need to get an FT4 and FT3 done at the same time and compare the two, you don't need a special test . The Dio2 would give you an explanation of why your conversion might be less than stellar, but you don't need it done to check how well you convert T4 to T3.

Having a TSH so low will not be helping with conversion , (since when TSH is higher it increases deiodinase conversion of T4 to T3 as well as it's main job of stimulating thyroid to produce T4 and T3) but there is nothing you can do about that, it is where it is, unless you take less hormone.

tattybogle
tattybogle in reply to Vishja9

Vishja9 Your advice on how to increase dose of Levo worries me a bit . I do understand that some people may feel better on higher doses of Levo, and it used to be prescribed at higher doses before the TSH test became 'God', so i'm prepared to accept that high doses of T4 could be safe in SOME people, but your advice to increase by 25mcg every 5 days up to 175mcg then stay there for 6 weeks before testing could seriously overmedicate many people. They would reach a dose of 175mcg in just 5 weeks with no idea how they felt on any lower doses on the way up.

I think it's safer to advise dose adjustment's of no more than 25mcg every 6 weeks and test at that point. Even then it's likely to take more like 10- 12 weeks to really know how you feel on a dose.

Eddie83
Eddie83 in reply to Vishja9

T4-only simply does not work for some of us. That was demonstrated by the late John Lowe, who took T3 as his only treatment until his death (from a head injury),

Have you tried to get Lyme testing, I know most are unreliable -Diet is definitely key (to most issues) it's worth an elimination diet and maybe a hair mineral analysis test - did the Func Dr good a good stool test as well??

Jojozo
Jojozo in reply to eileencollopy

Thanks for replying. He did. He basically did everything (hence I'm broke!) and told me that my main issues were lack of bile and very bad copper toxicity, which my NHS doctor found a bit ridiculous. And my hormones were a bit all over the place, but I suspected that would be the case. My doctor tested me for Lyme disease (she's as confused as I am and has really tried to get to the bottom of it) but it came back clear. She seems to think it's all down to peri and I'm just having a really bad time of it hormonally, but I'm full of energy one week and feel like 'myself', and then completely devoid of energy and really down the next. It used to happen just after my cycle but now it seems to be more random.

Someone in this thread suggested you increase T4 every 5 days to a high dose. I don’t recommend this, too much thyroid replacement can be hazardous, cause heart rhythm disturbances for a start. I was taking about 25mg too much T4 and ended up in hospital 4 times with atrial fibrillation. I was also taking 10 mg T3 and reduced it to 5mg. AF has not recurred since I reduced my dose. Requirements do change with age, at least for women after the menopause. I was reluctant to listen to the doctors on this one, but for once they were right. Also you need to leave a few weeks before any increase to see the effect. I ensure that myTSH is detectable. I appreciate that not everyone is the same, but ideally think we should not fully suppress TSH.

tattybogle
tattybogle in reply to Coachv

I agree

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