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please help x had huge panic attack as endocrinologist won’t approve 30mcg He’s approving 20mcg T3 - crying and can’t cope

Chouchou1234 profile image
47 Replies

hi I just had test done on Monday

T3 5.2 )4.1 to 6.8

T4 20.2 (12 to 22)

Tsh 0.01

I am on T3 30mcg and t4 125mcg

27hours after t4 so is it too high? 13 hours after T3

I spoke to endocrinologist and he won’t approve more than 20mcg even though he approved verbally 25mcg

Now he is saying he is not taking responsibility and 4.1 result T3 where I was before is sufficient.

I can’t go back wards

I was 2.2 T3 for god knows how many years finally stomach working and getting a life .

What do I do now.

I pushed it by asking for 30 on the telephone that was the test on 30 on Monday

Before it was 4.7 on 25mcg

Please I have just collapsed in a pile from anxiety as spent 5 years in bed and can’t go back.

He is now only approving 20mcg - no way it was 4.1 or 3.8 on 20mcg

I won’t be able to sleep or eat the anxiety is so bad.

What do I do?

I have a prolapse from years of constipation and finally my stomach started working .

i was in bed for years.

Is t4 too high? It was 100mcg before starting t3 and t3 was 2.2

Help

Can’t breathe I’m so anxious about it

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Chouchou1234
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1tuppence profile image
1tuppence

Help will come Chouchou.... in the meantime can you hold on to that? Is there anyone with you who could hold you, and help you feel calmer? Touch is so important, especially when we feel upset and "losing it" for whatever reason. Help will come.

Sending you gentle virtual hugs.... hold tight. xx

Chouchou1234 profile image
Chouchou1234 in reply to1tuppence

this is last endocrinologist letter -

She also has T4 to 13 conversion issue and therefore she has Deen on Liothyronine for some time

Her current medication includes Levothyroxine 125mcg a day, Liothyronine 10-10-5mca daily. On

Our last clinic visit, we have suggested to stay on 10-5- 5although she has increased this by

herself to 10-10-5. I have emphasised the side effects and long term complications of

over treatment with Liothyronine, especially risk of myocardial damage as well as atrial fibrillation

Ind osteonorosis. She underslands the risks but reels that her current regimen has helped her to

e more active and also from her extreme tiredness.

re weighed 51 kg, blood pressure was 99/62 mmHg.

Xxxx

this was his last letter to Me .

He is now writing to Dr GP he is only approving 20mcg .

I’m in a pickle.

What do I do?

This was the last letter

tattybogle profile image
tattybogle

Hi Chouchou , i'm afraid you've freaked him out by putting it up to 30mcg yourself.

You thought he had ok'd an increase to 25mcg , but it's not clear that is how he remembered that conversation ,

And even if that is what he said , you pushed it straight up to 30mcg .. so to be honest i'm not surprised he's back tracked on agreeing the 25mcg dose ...... you've made him nervous. Doctors get freaked out too you know ..... they are (rightly) afraid of being held professionally responsible for enabling some patients to overmedicate themselves with thyroid hormone.

you put it up too fast without 'taking him along with you' , he's freaked out about your attitude to safety now ,and you'll have to deal with the consequences .

so you have 2 options :

either ~ accept that for the time being that means taking 20mcg and putting up with it , while you work on rebuilding his confidence that you won't take more than he prescribes ,and persuade him over time that 20 then 25 is a safe dose for you to take ~ and maybe once he trusts you again , he might feel safe prescribing you 30.

or ~ you decide to ditch him and get your T3 from somewhere else and do without his help .

There's no need to panic .. you can carry on taking 30 if you want to , but you just have to decide whether you want a prescription from this endo and to continue working with him , or whether you want to buy it without a prescription and self medicate without his help .

Those results on 30mcg look perfectly 'safe' to me, so if you decide to ditch him and self medicate ,then carry on at 30mcg and retest after another 6-8 weeks to make sure the fT4 and fT3 are not going over range .

but i doubt you tried 25mcg for long enough to know if that would have been ok .

if you don't fancy going it alone at this point (to be honest i don't think you are calm enough or organised enough to manage that ) , then if i was you i'd tell him you'll accept 20mcg , and top it up to 25 yourself without telling him . but DON'T go any higher at the moment.

Try 25mcg properly for 6-8 weeks~ get a blood test with him ~ and then decide what to do from there depending on the results and how you feel at that point .

is that any help ?... i know a hug would help too so here 's a couple (((hug))) ((xxxx)))

Calm down .. it WILL be alright.

.

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

ok huge help. Thank you …. Xxx yes huge help. I created so much drama .

I was caught off guard when he called. You are right. Im relentless too. I think he was discharging me too. He was like ‘good luck’. Do I write to him?

I’m an idiot

Thank you for you support . Sorry to bother you .

I’m living in fear all the time. It was so dark for so long .

I will stick to 25mcg do I just reduce to 25mcg now?

Thank you

Sorry I need to try do yoga and eat as it’s thrown me as worried as abandoning by him.

tattybogle profile image
tattybogle in reply toChouchou1234

don't try to figure it out tonight ... relax ..

.you have some T3 right ?..

you are taking 30 and feel ok ? right so take that today and tomorrow ..

don't change anything today or tomorrow ..

eat and relax for a day or two and take what you want ..

you have an ongoing prescription for 20mcg .. so relax

you WILL figure out the details of exactly what to do next , over then next few days when you are feeling calmer than you do now ..

a conversation with a pissed off endo is quite enough to deal with for today .... and you've done that,.... so chill for a bit .

For the next 24 hours your only job is to forget about it , put it out of your head and calm down.... you can make some decisions in a day or two when you have had time to think stuff through slowly , and carefully.

and stop beating yourself up :) a very good friend of mine who died a few yrs ago once got so sick of listening to me beating myself up for being an idiot / being useless/ messing everything up ,, he sang me a little song (you have to sing it to a little tune) "every ~ one's ~ a ~ bit ~ of ~ a ~ C**T ~ sometimes" ... i still sing it to myself... often .

so 'let yourself off the hook' kiddo ... you're not the only human on the planet that fuck's up / makes a mess and then get's over dramatic and ends up a blubbering mess in the corner .. we all do it ... some of us do it quite a lot ,, but we are all still lovable and worth loving .. and so are you .

xx

SarahJane1471 profile image
SarahJane1471 in reply totattybogle

👏

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

thank you so much . You are so kind huge hugs and thank you I have been re reading it and trying to reply for hours with write delete write delete cry write deleting

. I haven’t slept at all from worrying which is silly I know. I was trying to ‘negotiate’ with him and stupidly I mentioned 30. I should of kept quiet. I am sick to my stomach about it I used to have huge anxiety years ago and come flooding back. Should I write to him when more stable? Here’s the crucks of it years ago I self medicated a huge amount of thyroxine for a short period to try help myself . IWhat a mess I’m in. I was silly then. I’m ashamed.

Problem with anxiety it’s all around food so can’t eat anything .

I can go to 25. Probably better with sleep. Last test was 4.8 T3 but the drops are so low I feel ‘paralysed’ literally paralysed feeling.

I’m scared - I m by myself as my family told what a looser I am serves me right.

I was in hospital in July and they ordered to have a NG feeding tube as my bowels stopped working but - no one tested thyroid that’s when I started T3 I was on 75mcg t4 was 11 and 2.6 T3 - - they just left me alone no one dealt with it last 3 days my stomach working and first time in 5 years haven’t had colonic every week. I’m managing .

Also I have worked so hard to build trust with my doctors and relationships now I’ve shot myself in the foot. He kept saying it’s in range 4.1 (4.1 to 6.8) so essentially he’s done his job and they don’t titrate t3 as per guidelines and testing.

I fked up I saw him at Christmas and said how much better I was doing regarding the 25mcg . I can totally see his point of view . I do have a fantastic relationship with My gastro - I am seeing him on the 22nd and he commented how much better I looked last time and told him my stomach working finally (this is years of tests since 2018 as was I hospital with impacted stools got a severe prolapse small bowel doesn’t work properly. It got to a point I have to live with it… but No one ever tested T3 until I got it done in 2021 April managed to convince a gp finally . It was 2.1 (4.1 to 6.8) .

I’m waffling . Thank you so much .

I need a plan . I can’t think right.

I’m trying to remember parts of conversation- it’s like ptsd I block so much stuff out so not to deal with it .he was very upset angry saying he’s going to write to gp . Got o 25 then lower to 20. That I am in range at 4.1. That’s it no regard to feeling better. He also kept saying it’s like an addict drug .

I’m not lowering to 20 . You can see the struggle I have had to now and not goi g back. Maybe 25mcg will be sufficient . If that happens how do I deal with the extra 5. I need to get that from Somewhere and anxiety is overwhelming.

Breathe. Going to take the dog out and cuddle the cats

Xxx sorry if I am not making any sense just I was in darkest place for so long - I couldn’t shower or walk or go out and was the crazy girl in the winter coat in summer. On shocking high number ofLaxatives to eat once a day I don’t know how long it was 2.2 for but probably lower .

I may delete this later as I sound ridiculous .

Just need a plan.

This triggered all mighty abandonment issues . Breathe.

Please help I’m confused as am I over medicating of thyroxine which is suppressing my T3? These are Previously results only on 100thyroxine - before starting T3 and now I’m on 125mcg thyroxine. Is that relevant ? Am I taking to much ? I’m a little mess.

April 22

T3 2.5 (4.1 to 6.8)

T4 20.2 (12 to 22)

27th May

T3 2.3 4.1 to 6.8

T4 21.3 (12 -22)

The T3 is going down?! X am I over medication of thyroxine?

tattybogle profile image
tattybogle in reply toChouchou1234

don't you dare delete it ... when you are honest like you were there it makes it much easier for people to help you properly ...

Go a walk with a doggie ~good plan .

You're handling it ok . You know where you went wrong .. You know you need to rebuild trust with your doctors ..... you know you had a few days of feeling good on 30mcg,, and you also know that trying 25mcg properly is a good plan .... that is a good start and it's enough for now. ....so ~ put "worrying about it" to bed for the rest of day walk about a bit with a dog , cuddle a cat and let things settle in your brain.

like i said ~ you don't have to figure this all out today ~ it will become clearer to you what is the best thing to do as the week goes on.

might be best to just wait and see what he actually writes to your GP ?

tattybogle profile image
tattybogle in reply toChouchou1234

No :) it's not relevant ... go and walk the dog . find a blackbird to listen too ...and stop thinking about numbers for the rest of today.

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

I’m singing that song you mentioned .. 😂 xx thank you xx

tattybogle profile image
tattybogle in reply toChouchou1234

it's a good song .. sing it often :) preferably at the top of your voice in a big field .

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

ok what I did do is write to him in January asking if it is ok. I forgot about that. With my reasoning . 😂 he obviously didn’t read it. My results on 25mcg were 4.4 T3 (4.1 to 6.8) I just checked. I sound like a nut job. This was sent in January 10th . Does this help me? In a pickle.

I’m petrified going backwards . I’m also panicking a lot as sooo tired haven’t pooped and can’t pee again. Also I have gained fat weight. If I am not converting the t4

Dear Doctor

hope you are well.I am finally on a good trajectory and started living.I need your assistance please to authorise 30mcg T3 I started 30mcg and feel better - i take the extra 5am at 4 am with my thyroxine and is a huge benefit to the day -  but my last result showing 4.4 T3 As my bowel paralysis small bowel issues I don’t think the afternoon and evening doses are not being absorbed. Or something is deactivating it?Could it be raising cortisol?I can’t take on an empty stomach except morning as I eat small frequently meals and if you see my last X-ray my bowel is severely distended and motility is very limited but definitely improved with T3! I have reduced laxatives

I am aware of the risks - I am not taking this lightly . I am not hot or no palpitations and still severely constipated . I had ecg done before GA 6 weeks ago and all normal.This has given me a huge new potential to start living.  Mood is elevated and positive and I feel like my old self!! It feels like the last ten years I have been asleep and exhausted painfully and now there is a way forward. This is all thanks to you.I really do appreciate all your care and support.Thank you 🙏

I sound ridiculous I know.

Last last thing - I had a small bowel test 2 weeks ago and showed very slow motility . And severe distension in bowel ( years of zero motility and mri of very severe rectocele surgeon may need to operate - all because years of constipation as no one helped me even though I kept asking about thyroid . Breathe .

Plus I have loads of emails to GP and gastro requesting blood for vitamin levels as I told by gp just stop all vitamins as b12 was high. That’s not a solution. Requesting tests as if I’m not converting maybe I can help myself with vitamins etc but need testing. They all have done nothing

I have a huge fear as a few years ago my weight dropped as not digesting so couldn’t eat and had small bowel overgrowth so badly I was given antibiotics finally for 2 years z they tried at one point to threaten me with section as I was told nothing wrong just eat.

I’m in the park exhausted and look like a homeless person so tired. I have been proactive to help myself . Doctors just wrote me off and say here’s feeding tube. Meanwhile it was low

I will stop . Breathe xxx

Last thing - I a

tattybogle profile image
tattybogle in reply toChouchou1234

Let me try and explain a few things from the GP/ Endo's point of view ( or at least what i 'guess' their point of view is ), it might help you deal with them better in future :

Your endo said you can have 20 ,, you said you wanted to take 25 cos you felt better ,( he clearly wasn't very ok with that idea but didn't put a stop to it ) , and then you put that straight up to 30 without giving 25 a fair go , and then you wrote him a letter saying "30 is wonderful please let me have a prescription for it, i'm being really really careful...i know the risks" etc. etc .

But...... just 3 DAYS before you wrote that letter saying "how wonderful 30mcg was and how much better everything was" ~ you were on here saying everything was still horrendous on 30mcg

7th January :

"I have been so exhausted for so long.

Can I ask would T3 and t4 affect liver and bile blow? Nothing is digesting.

I am so stressed I can’t digest anything nothing going through properly then the bowel distended on to my bladder so can’t pee "

You have a previous history of abusing thyroid hormone. and taking it in increasing and excessive amounts to try and fix yourself.

You put your dose up to 30 without trying 25 properly.

You send a letter to the endo which is clearly not a true representation of how you were feeling just 3 days earlier .

All of this gives them the impression that you are actually being far from careful .. and likely to just keep taking more and more T3 if given half a chance to do so.

Just writing "i'm being really careful honest guv" will not change how the endo see's your actions .....and no endo on earth is going to keep increasing your prescription with this history while you are so erratic in what you say to them, and when you increase your own doses twice in succession without their permission.

You clearly have very serious bowel issues ... your bowel function is probably not ever going to be perfect no matter how much thyroid hormone you take ,yet you keep asking for more and more . and you clearly don't really know that 30mcg T3 would be 'enough' , as you were still saying it was totally rubbish on the 7th of January.

You need to accept that you will almost certainly still have some serious bowel problems even when you are on a the right dose of thyroid hormone .. you are acting as though if you can just get enough T3 your bowel issues will all magically dissappear .. and you seem intent on taking more and more until they do .

Your history of anorexia, and laxative abuse ,and getting extremely stressed about the circumference of your thighs and measuring them will all raise alarm bells with medics about over using thyroid hormone (especially T3) for weight loss,

Your recent weight of about 51kg suggests a full replacement dose (based on 1.6 - 1.8mcg / kg) would be expected to be something like 85mcg or 95mcg Levo ... you are on 125mcg Levo plus 30mcg T3 on top of that.. so you can see why they are getting nervous .

You've not left this bloke much choice but to cut you loose... it's not what you 'say' that matters .. it's what you 'do' .. if you don't want to been seen as 'drug seeking' , then don't do it .... you are currently behaving in exactly the way they would expect a drug seeker to behave .... for all he knows, if he prescribed 30 you'd probably be taking 35 then 40 the next time he saw you .and saying "but you said i could have 35 and i feel wonderful on 40"

Try the doses you are prescribed for as long as required to regain their trust and don't increase without their CLEAR agreement .

Yes .. it feels like being treated like a child with someone else in control ,.... but you gave away the privilege of being trusted to be responsible for your own dose by abusing it before... and you are still showing some pretty classic 'warning signs' of abusing it now.

Your GP's and Endo's will have a big red flashing light over your case notes with "take care ~ she is likely to try to take too much" and you are adding to that concern every time you increase the dose yourself and say "but don't worry, i'm being REALLY careful, honest Doc"

I realise this is not what it looks like from where you are sitting ... but it will be what it looks like from where "the person writing the prescription" is sitting .

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

I really appreciate your detailed reply and it’s like having the best sister helping me! Thank you I’m embarrassed and ashamed by my behaviour.

Why is my T3 so low? Could taking t4 suppressor my T3 ?

I re read your reply now when calmer and makes so much sense but waiting for so long - years and years it took them a year to start T3. My blood result T3 was 2021 April of T3 2.1 (4 to 6.8) I alerted every doctor and didn’t start T3 until over year later July - suffering of no life and pain exhaustion.

Then when I started T3 everything dropped (t4 was 11 and T3 2.6 and I emailed and called all doctors from GP to endo to gastro . No one replied or did anything. So I self medicated slowly. Not an excuse but they left me high and dry.

This all tied up with my body dysmorphia and abuse and not being in control. Sorry I am going over the same things just i am not thinking straight.

I haven’t slept again from worried and stomach just distends . I took magnesium still didn’t work.

Please can someone answer why my legs are swelling up so much. What should my t3 be ideally? Why is it so low? My iron has always been low I think it’s 35 now. I have gentle iron . Can i take that? I eat liver once twice a week and beef 2 times a week. Folate 20 and vitamin d over 100 and b12 was double last time.

I am super angry at myself for not being in control

Also triggered by my abusive sister who is relishing in my anxiety and stress. Since she moved back to london with me it’s made things so much worse with her passive aggressive behaviour.

I spent so much of my life wasted In pain and the basics of just trying to eat and shower is too much . Today I think left the bed for 2 hours and too tired to shower .

My bloods are 5.2 on 30 mcg on 25mcg it came out as 4.4 . So thought of going backwards is a no go. Why is it still so low? I read on the Canada website that can deactivate ?

I am now super confused

I am rambling . Sorry . Fear is setting In

I am 50 kilos and I maybe taking such high thyroxine could that have lowered my T3 ?? Or suppressed my T3 ?

I give up .

Thank you heros .

Back to cuddle cats and pooch. Driving you mad

And myself .

Hugs 🤗 thank you 🙏

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

Hi I am very stressed I am reading this website Canada re T3 and can’t understand much right now .

Why is my T3 conversion ration 0.11 before taking t3. My Tsh has always been very low 0.02’ orn0.05 on t4 am I over medicated?

I read deactivating or inactivation.

and so exhausted. I didn’t take the extra 5 and didn’t sleep and can’t move. Im in tears.

Lalatoot profile image
Lalatoot in reply toChouchou1234

Chouchou Listen to yourself. You say I can't think ot understand much just now. So why are you trying to read anything about thyroid. Thyroid stuff is hard to understand at the best of times. We can think ourselves into being worse and this is what you are doing. STOP!

Change your routine. Put on music or look out the window at the birds and the sky . Cuddle the cats. Your thoughts make things worse.

I found meditation helps. I use the app Insight Timer on my phone. It has meditation for thyroid folks. However I prefer meditations by davidji.

Big hugs x

tattybogle profile image
tattybogle in reply toChouchou1234

yes .. you are driving yourself nut's . the conversation with the endo had triggered all sorts of fears and other stuff , so your head's all over the place and you're panicking . That's quite understandable . we would all be feeling the same .

So now is not the right time to be reading tania smith and getting your head in more knots about the biochemistry of how T3 works .... is it. So stop it . you're just feeding the panic and confusion. Trying to get anything useful out of that sort of reading is for when you are feeling calm and balanced and logical .

When you are feeling panicked stressed, sleep deprived and illogical ,you won't understand why the answer to 2+2 is 4 even if it's written on the page in front of you ... so you won't get any answers from there about "how do i get better " while you are in your current head state.

First ... stop trying to project into the future .. you don't know what is going to happen next..

If you're anything like me you can barely remember the details of the endo conversation , because you were so upset while it was happening ....so you need to wait until the endo has written to your GP so you know what he is actually going to write.

Then you need to discuss the letter with the GP. and have an honest conversation with them so you know what THEY think , and they know what YOU think .

Then you can you decide what you're going to do about it, ie if you are going to work with them , or if you are going to take charge of your own dose. and how you're going to manage it safely.

until then, i think most of us would recommend you take 25mcg T3 for 6 weeks with the 125mcg levo so you can give it a proper go ., get some proper results after 6 weeks on that dose.. and see how it goes symptom wise.

This will seem like a long wait .and i know you will struggle with that ... but you'll have to live with it .... it's a consequence of your own actions ....you went up too quick .. and freaked out the endo ... and this makes the whole process take longer . (Next time you are tempted to increase by yourself and not be patient enough, remind yourself that doing so will probably make it take longer to get to where you want to be ).

As for your thighs swelling up ... are you really going to listen to the opinion of a panicking brain about that ? ... when you know that even on a good day, that brain has a distorted perception of your own body ??..... No, of course you're not ... just tell it to shut up.

It is just desperately trying to regain some control of 'something' because you feel out of control. so give it something else to think about ... and i DONT mean T3 ... try learning to knit . No really .... try knitting.......honestly i'm not being sarcastic... it really helped my daughter when her head was a mess. ((hug)) (( :) ))

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

hi I am not feeling well

Can I take ashwaganda with T3 ? My cortisol morning was 678 (max is 525) inwas told that’s not high.

Can I take morning and night?

Sorry I’ll write once my head is on. Xxxxxx

tattybogle profile image
tattybogle in reply toChouchou1234

hi :)

i don't know enough about Ashwaganda or cortisol to answer that question safely.

all i know is that ashwaganda can ? make things (cortisol ?) go in EITHER direction ( up or down and the result is not predictable .. or something like that anyway ..

so think you need to start a new post about that one .. lots of people on here do know lots about cortisol etc

xxx

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

thank you for the speedy reply xx

xxx hug thank you

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

so I am beside myself

It can’t possibly be this bad .

Why is my T3 so low to start with?

What can I do to help myself?

The leg swelling is beyond horrendous. My bowel issues are so bad my rectocele is falling into my vagina.

What’s the point tonight . It’s so bad .

tattybogle profile image
tattybogle in reply toChouchou1234

you need to stop obsessing about your legs ,, it's not relevant.... it's not doing you any harm .... and more to the point you already know that your perspective of how big your legs are is probably somewhat distorted due you self image issues .

only weighing 50kg won't be helping you have a realistic perception of the size of your legs either. So really ~ stop worrying about them .. nobody but you is worried about what size they are ~as long as you can stand up and walk around on them on them , they re doing their job just fine .

And you are taking 25 ? 30 ? mcg T3 and 125mcg Levo ...so you also need to stop obsessing about your T3 level .. you have plenty,.... and more to the point you know you can't take any more at the moment .

other than that, i'm sorry but don't know what else to say really .. your bowel issues are obviously really serious and really difficult for you to live with .. but i don't think any of us here are very qualified to help there .. we don't know your medical history,

Really sorry you're having such a tough night of it chouchou .. and sorry i can't be more help.. xxx.

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

hi I have been taking 30mcg but will reduce today to 25mc g

Feeling very nervous about it

My ferritin last test 6 months ago was 35 - if I get that up to 100 will that help conversion. I got gentle iron can I take that? Worrried about constipation

Could I have very high reverse T3 - hypothetical could the thyroxine be repressing my T3 . The reason I ask is before starting T3 my T3 was lowering. So I am taking more t4 than before - I was on 100mcg before I started T3 and it was 20 (12 to 22) but the last result was 21.5 t4 and T3 was 2.2

Also I read that that if my conversion was very very low - it was 0.11 then some sort of inactivation is going on.

The highest tsh I have had that I know of is 5.3 .

Also I get very weird ear fullness it’s like pressure in my ears recently when I take T3.

I get very very tired after my thyroxine dose.

I got an email from gP to speak to them about tsh as it’s less than 0.01.

Before starting T3 my tsh was 0.02 . But T3 was 2.2 (4.1 to 6.8 -

Very nervous today meant to be getting my top up

Vaccine and had a very bad reaction to first one.

Rectocele is horrendous

Hugs

Haven’t slept at all well maybe 2 hours

Will try meditating xx

Hugs

tattybogle profile image
tattybogle in reply toChouchou1234

Hi :

1) i don't know much about the best ways to improve ferritin and iron levels without risking worse constipation. (and i don't know if yours need improving or not) Slowdragon / Seasidesusie are the best people to ask about that .

2) I'm going to try to explain the T3 question once ,, but other than that , i'm not going to start discussing T3 with you because you tend to go in circles.

so ~ i do understand what you are thinking~ about 'higher T4 levels reducing/ slowing down the conversion of T4 to T3 ' ( and you are right ~ higher T4 levels do reduce the rate of conversion from T4 to T3 ~ but NOTE it 'reduces the rate of' conversion, it does not 'stop' conversion)

... but , when you are taking plenty of T3 from a tablet, then for most parts of your body , the speed of conversion from T4 to T3 doesn't matter all that much. (Because they are getting access to decent levels of T3 from the tablet instead).

The parts of the body that like/ need/ prefer to make their own T3 from conversion from T4 WITHIN their own cells , are your brain and your skeletal muscles.

You are mostly concerned about your digestive system getting enough T3 at the moment aren't you .. and your digestive system IS getting plenty T3 from the T3 in your blood (which comes from the tablet) and it would STILL be getting plenty of T3 from the tablet even if your conversion within cells was 'zilch' ~ and it 's never 'zilch ' ,, the affect of 'too high T4 levels' is only to slow conversion down a little bit ... not to stop it totally.

On a more practical level ,, the only way to do anything about lowering your T4 level (if it needs it) , is to lower your Levo dose ........ and that decision should ONLY be made once you have some proper labs done AFTER taking 125mcg Levo and 25mcg T3 for 6 weeks consistently ... so there is no point thinking about it any more until you have done that,

3) you do need to talk to the GP ... properly .

in order to find out what the endo wrote to him.

to find out what he thinks about that

and to let him know what you think about that.

xxx

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

thank you xx

What are the symptoms of high reverse T3

Swelling in legs is unbearable and had vaccine so trying not to freak out as pain in chest area.

Just had vaccine and feel poop.

Xxx thank you 🙏

Last question at the very worst my tsh was 5.3 on no medication at all and t4 12 - they didn’t test my T3 I was in hospital with impacting pool etc and they said it was normal my thyroid but reviewing my file that was a time I was not self medicating for a long while in nothing so that is reliable test.

A thyroid of tsh 5.3 and t4 of 12 is very hypo?

xxx

tattybogle profile image
tattybogle in reply toChouchou1234

You already know there's no point discussing old results... so i'm not going to get involved in a discussion about them .

and you already know more than enough about rT3 .. lots of people have explained it several times, so i'm not going to do it again.

what you need to do is to find something else to occupy your brain to stop yourself obsessing over thyroid issues .. you obviously like learning about stuff , and you are obviously capable of understanding quite complicated topics.. so the best thing you can do with your brain at the moment is use it to learn about something else that interests you .... or as i suggested before ... learn to knit.

no really ... try knitting

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

hello! Thank you for your time and patience.

Can you explain - if it’s 5.2 T3 at 12pm on day of test 13 hours after last dose. Does that mean it’s roughly 5.2 as a base line?

I was reading Paul the t3 person and the high or energy I get straight away that’s cortisol ? So am I spiking cortisol which is then blocking the t3 .

I have gaba ltheanine and magnesium mix complex can I take that with t3

Xxx

tattybogle profile image
tattybogle in reply toChouchou1234

1) 8-12 hours after the last dose is the time to test fT3 levels .

2) Cortisol .. i don't know anything about it (or about pauls methods)... but even if you did have cortisol problem ( and you don't know if you do unless you do some proper testing )

.... and even if that problem affected conversion of T4 to T3 ...

....... i don't see how it matters when you are taking plenty of T3 anyway .

If you were ONLY taking T4 ,then if something was affecting your conversion to T3 it would be a problem .. but you are taking T3 anyway .. so it doesn't really matter if your conversion isn't very good does it ?..

people with no thyroid who take 'only T3' seem to do ok . and they have NO conversion because they have NO T4 to convert ..

stop obsessing about things 'blocking' your T3... you have plenty of T3 ~because you take plenty of T3 ... you can see it in your blood results..... and if it's in your blood it can get to your cells .. so stop worrying about it .

c) gaba /ltheanine / magnesiun complex ....i don't know what that is , or what's in it.. so i can't say ...... write new post asking that and list the ingredients~ somebody will know .

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

hi I’m having a panic attack as I’m pooping non stop today which is fab but severe pain on chest since vaccine . It’s heart area like a ball about to bust

My heart rate isn’t up but it’s like a achy ball about to pop . It worse when I eat so I am thinking acid?

I read that ashwagandha can raise the thyroid as reduces cortisol.

I don’t want to alarm doctors and I am sure it’s gastro stuff but my mind is in a pickle

Any thoughts?

Xx

tattybogle profile image
tattybogle in reply toChouchou1234

yes ..my initial reaction is "stop worrying and enjoy the fact you bowels are working for however long it lasts "

However ....if you just started taking aswaganda , i suppose some of it could be related ,but as i know 'nowt' about ashawagnda / cortisol ,(except that ashwaganda can have effects in either direction ie. it can raise OR lower cortisol i think ?) .....perhaps you should ask radd (or whoever else replied on your post about cortisol / ashwaganda) as she has experience of taking it.

That post is here healthunlocked.com/thyroidu...

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

thank you xx I just need to enjoy the fact it’s moving! Xx thank you

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

thank you

The more I’m researching the more - so that a great news if I lower my

T3 but why is my

Chest hurting so

Much .

Worry pants on xx

Those in the ashwagandha group showed significant increases in triiodothyronine (T3) and thyroxine (T4) levels of 41.5% and 19.6%, respectively. Furthermore, thyroid-stimulating hormone (TSH) levels decreased by 17.5% (6Trusted Source).Ashwagandha’s cortisol-lowering effects may be responsible.Chronic stress increases cortisol levels, leading to lower levels of T3 and T4. Ashwagandha appears to stimulate your endocrine system, boosting thyroid hormone levels by reducing cortisol (6Trusted Source). Xxx

tattybogle profile image
tattybogle in reply toChouchou1234

unless the people in that study were hypothyroid patients taking full replacement doses of thyroid hormone like you are , then you can't assume the same effect will be happening to your T4/T3 because your T4 and T3 are not being made by your thyroid

But...having said that , if this IS what is happening to you (ie your fT3 level has increased a lot due to taking ashwawotsit for a week ) then you've effectively given yourself a big dose increase in T3 ~ which would certainly explain the over active bowels.. and might well explain the heart pain ....

If you are worried that these are the effects of too much T3 then lower the amount of ahswaganda or stop taking it and see if your heart stops hurting .

It was your choice to take it. so instead of having panic attack about it ,take a bit of responsibility for your actions .. you chose to experiment with something that might lower cortisol and increase T3 when you are being advised by pretty much every body you talk to reduce your T3 because you may be overmedicating yourself , so get a grip ~if you've now got a pain in your heart that is frightening you .. stop taking it.

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

Ok xx thank you xx I didnt think it would raise my T3 but so many things factored in -

nuts and coffee the first time in 4 days

Weird thing was my stomach has been so horrifically bad all week and started a liver supplement yesterday and today properly it increases bile flow so maybe that’s it.

I can feel bubbling inside I can hear bubbles in stomaxh so it’s Sibo probably and gas trapped. ( I have antibiotics for Sibo but haven’t taken it for a long while as it screws my

Microbiome up)

Sorry to drive you mad.

I am

Anxiously waiting for the letter from endo but tomorrow a new day.

I am so grateful for support and definitely getting better than a year ago I couldn’t even stand up! Xx

Thank you

feeling positive xxx new day xx

Chouchou1234 profile image
Chouchou1234 in reply totattybogle

by the way huge thank you x can’t function at all today after vaccine.

JAmanda profile image
JAmanda in reply toChouchou1234

no, keep what doc is giving g you and top up with some t3 from elsewhere.

msmono profile image
msmono in reply toChouchou1234

hi, so sorry to hear of your struggles. Dealing with doctors and feeling at their mercy can be the worst part of this terrible illness. I can’t advise you but only share my own experience that when I put myself up and the doctor reacted badly, I also panicked because I didn’t want to backslide but it turned out I was ok on the slightly lower dose. I can get so invested in how things are going to be and then sometimes they’re not. One think I found useful is if I ever do put it up - I get a medichecks test done a few weeks later and give that to the GP to show them all is ok. Anyway, dogs, cats, walks hugs - all good - well done for knowing how to be kind to yourself xxx (just off to collect a new rescue cat myself as the house feels so empty since our last one left us and I need the oxytocin effect)

Lalatoot profile image
Lalatoot

That's really good advice from tattybogle . I was wondering what I could say to help you but tatty has said it all.

shaws profile image
shawsAdministrator

 tattybogle is correct - you probably made Endo nervous by not following his recommendation. If you had a reaction he may have had to take the blame.

TaraJR profile image
TaraJR

Whereabouts are you?

Some ICBs will only allow prescriptions of 20mcg (or even only 10mcg) a day. Could he be following an ICB policy ruling?

Chouchou1234 profile image
Chouchou1234 in reply toTaraJR

I’m in London

TaraJR profile image
TaraJR in reply toChouchou1234

Ok, I'm not aware of London ICBs rationing the daily T3 dose.

Devon ICB rations T3 to 10mcg a day.

Buckinghamshire, and East & North Hertfordshire both ration T3 to 20mcg a day.

Unbelievable that patients are rationed to maybe only one sixth of what they need.

Meno56 profile image
Meno56

Is this correct what this consultant has concerns over? Ie myocardial damage as well as atrial fibrillation? I’m on a very similar dose and have recently had T3 results back slightly over range - I feel fine! GP has asked me to reduce T3 which I will do but just curious.

BonnieG123 profile image
BonnieG123

there are specific things to help constipation that can be purchased over the counter, like Senokot. I learned about this after my knee surgery when I hadn’t gone for three days. It worked within a half hour without cramping. Many medications cause constipation. Are there other problems that wouldn’t allow you to take something like this ? Wishing you all the best!

SlowDragon profile image
SlowDragonAdministrator

Taking too much T3 can CAUSE exhaustion

Reduce to 25mcg

Split dose as 10mcg, 5mcg and 5mcg

Retest in 6-8 weeks

Last 5mcg dose T3 approx 8-12 hours before test

Meanwhile ensure vitamin D, folate, B12 and ferritin are all at good levels

minka profile image
minka

What prolapsed. Try and breath hold your breath then breath out this will carme your down . I have toilet problems L4 L5 disc and legs not working properly. Swelling in feet and knees.

Chouchou1234 profile image
Chouchou1234 in reply tominka

have severe rectocele. Can’t feel anything to push . Years of horrific constipation to much information lol

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