I want to stop thyroxine: hello everyone, ive... - Thyroid UK

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I want to stop thyroxine

moomoo17
moomoo17

hello everyone,

ive had some really good helpful replies from people on here to my previous posts and I am following advice as much as possible. I have this nagging feeling that I'm not actually hypothyroid and Levo is killing me. Iwas never diagnosed as hypo, for 2 years I had tsh of around 5 and normal t4, gp was very reluctant to offer a trial but I felt so ill, depressed, tired, cold, anxious, hair loss I begged for a trial. I got it. And that feels like the worst mistake of my life. I wonder what if I was just stressed, I was I just had a baby, had a lot of issues, no sleep for quite a few years, I'm so down because i wonder if if have got better if I just waited it out and not taken this poison :(.

with every dose increase I feel more hypothyroid. I dont know if thats possible, but if you take t4 when you dont really need it can I make you hypothyroid?

is there a chance my thyroid was working but going on levo has made it stop working now, hence why I feel more ill on levo Tha before?

how can I find out if I was truly hypothyroid? What would happen if I stopped levo? I feel like its poisoning me, I feel out of my depth.

thank you in advance

13 Replies
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No, taking levo does not make you hypo. It might stop whatever production your thyroid was managing, but as soon as you stopped the levo, the thyroid would take up where it left off.

However, with a TSH of 5, you were hypo. You are hypo when your TSH hits 3. It's not uncommon for people to start thinking that maybe they were misdiagnosed, I've done it myself. But a misdiagnosis of that kind is very, very rare.

As for your T4, 'normal' just means it was in-range. But as the ranges are so vaste, that means nothing. It all depends on where in the range it was. Did you have your FT3 tested? Or antibodies?

Levo is not poison. It may not suit you, but that doesn't make it poison. Lots of people do very well on it. I would suggest that what you need to do is get copies of your lab results, and let's have a look. It could just be that you aren't converting the T4 (levo) into T3. How much are you taking? And, it's very possible that your doctor isn't doing all the right tests. So, before you do anything hasty, let's have a look at those results, and the ranges, see what we can deduce from them. OK? :)

Hidden
Hidden in reply to greygoose

Not enough T3 and low Vit D have just last week been identified as my problem. Am now starting on the path of correcting dosages and meds. Can you see an endo re full thyroid testing? I learned from this site that is the only way to feel better. Had many of your symptoms and had already been on T4 but wasn't converting. Good luck. Don't give up on finding the right doctor. Worth the search when you find one. Take care. irina

moomoo17
moomoo17 in reply to greygoose

hello grey goose,

I really appreciate your input, just so sorry I'm so slow, I'm finding the basics in life so terribly hard.

I just worry because my old gp wasn't convinced I was hypo and I asked for the trial, but honestly despite the higher tsh my t4 was good, its been much lower on t4. And ive felt worse, much worse. Is it possible that stress as ive read somewhere can cause temporary hypo or perhaps vitamin deficiencies? I really wish id waited :( like the GP suggested. I had already waited 2 years, and I had always now looking back over the years had a tsh of over 2 or 3, sometimes above 4. Mentally I was desperate, I felt suicidal, I dont feel mentally as bad anymore, its physically thats the terrible bit.

I haven't got all my results as ive got new Drs and I cant access old results, but I can get last 3 tsh/t4 and ive had 1 medichecks which wasn't accurate I dont think due to biotin usage, and ive just bought another medichecks panel. Ive had antibodies tested 3-4 times and every time they were low, never raised. So I'm suspicious I'm not hypo and by adding more t4 I'm actually making myself more hypo by blocking the conversion to t3, sort of flooding my system. Every levo increase, my tsh goes lower and t4 also does. I feel like I either need to stop levo ot add t3.

my Dr just phoned to say my bloods are back and although normal they want me to increase to 125mcg as t4 they said at 14.4 (was 14.5 before increase) is not good level, then if after 8 weeks I still feel bad I can see an Endo, but I feels like wasting time. I will do medichecks before I increase. I'm truly fed up.

thank you.

moomoo17
moomoo17 in reply to moomoo17

my mst recent results are 0.63 in a range starting at 0.35 and t4 14.4 range starts about 9. I'm on 100mcg, I'm concerned by adding another 25 it'll take me to surpressed tsh with further declining t4. Should I just add in another 25 or stagger it?

greygoose
greygoose in reply to moomoo17

by adding more t4 I'm actually making myself more hypo by blocking the conversion to t3, sort of flooding my system.

That's not how it works. I really do think you need to read up on thyroid, and learn how it does work, because you're just tormenting yourself, here.

Not point in giving me a result with a range that starts about... I need to know both ends of the range. Didn't you get a print-out of your results?

ooking back over the years had a tsh of over 2 or 3, sometimes above 4.

Unless these tests were all done under the same conditions, you can't compare them. But, it looks as if you've been hypo for a long, long time. So forget any ideas of 'temporary hypo'. This is permanant.

Every levo increase, my tsh goes lower

That's what it's supposed to do. But, it doesn't matter. It drops because you don't need as much. Thyroid Stimulating Hormone - what's the point of trying to stimulate a gland that can't respond?

I feel like I either need to stop levo ot add t3

Why would you need to stop the levo? What good is that going to do? Maybe you do need to add in T3, but we won't know that until we see your FT3 results.

I'm concerned by adding another 25 it'll take me to surpressed tsh

Your TSH isn't suppressed, at the moment. It's still in-range. But, even if it does go suppressed, it doesn't matter, you don't need it. There's no reason why your FT4 should drop further, it should start rising on 125. The reason it dropped before was that the dose of levo you were on was enough to stop your thyroid producing what little it could, but not enough to replace it. It often happens. Nothing to worry about.

Should I just add in another 25 or stagger it?

Just add in the 25. :)

moomoo17
moomoo17 in reply to greygoose

ihi grey goose,

thank you for your reply. I find it so hard to explain myself through writing. I'll try explan what I mean better.

what I said there was me not explaining what id read and I probably got it wrong. I read that on sttm that too much levo if you actually need t3 or ndt or aren't really hypo will cause more thyroid symptoms. I dont know anything about it but appreciate your explanation, I will look more into it.

these new Drs are awful wont let me have results unless I go in wih id and they know I cant do that due to the distance and how bad I feel so I have to take what the receptionist will allow. They get really annoyed when I ask for all the ranges and units etc over the phone and say the Dr marked it as normal why do u need all this! So itd a challenge. And I also wasn't near what I wrote down my apologies, I meant to explan I would update the thread once id got as many results as I could.

but latest ones are tsh 0.63 range 0.35-4.94 they said mul but wouldn't clarify as to units measured in.

ft4, 14.4 range 9.0-19.0 pmol I think but they wouldn't clarify. When I can get in I will get them all printed and medichecks will be easier to share as they come to me.

what I meant that when my tsh goes lower so does my t4, in my limited understanding that isnt right and I wasn't sure what made the ft4 decline? I'm happy the tsh is but I think the t4 being that level is why I feel ill, its was 12 or 14 when I was first diagnosed so its not raised, sometimes after an increase it raises a bit but it keeps declining if I stay on that dose.

I am out of my depth, I dont understand this much, I do try but I find it all so confusing.

thank you for clarifying about the dosages and tsh, that really helps. I mean regarding my Drs I cant get there frequently, so I need to do all things when I'm there, I cant get that many taxis and dont feel physically able to get there frequently, they make it so hard to get my results, I wish I could see them online like my old Drs used to do.

greygoose
greygoose in reply to moomoo17

OK, so I know what STTM are referring to. When you don't convert well, and you keep increasing your levo, and the levo gets to a certain point, it starts to convert to more rT3 than T3. So, yes, your conversion gets worse, but it isn't blocked. I don't think STTM explains things very well, it's all histrionics and I feel I'm being shouted at when I read on there! lol So, that's what they're talking about, but it doesn't apply to you at the moment because your FT4 is too low. So, I wouldn't worry about that.

And we can't tell how good your conversion is until we see the FT4 and FT3 results, tested at the same time. So, if you get private tests, we'll be able to understand a lot more.

They sound like a nasty lot at your doctors! Do they know they're breaking the law? The 1998 Data Protection Act says that you are entitled to a copy of your results, and they have no right to ask you why want them. They are YOUR results. And they should give you the ranges, even if they have to do it over the phone. Honestly, it can't take more than a few minutes to read them out! They want a good kick up the bum! And, you can tell them that, if they don't cooperate, there are measures you can take to force them to do so. Under the circumstances, you'd think they could make an effort and email them to you! It's disgusting.

they said mul but wouldn't clarify as to units measured in.

That's not terribly important for the thyroid results.

I think it's just coincidence that your FT4 goes down when your TSH does. There's no mechansim that can cause that. At some point, it has got to start going up again. And, it's not that low, it's mid-range. But, it's not the FT4 making you feel ill. It's the T3 that causes symptoms when it's too low or too high. So, that's what we've got to find out next. :)

I am sorry that you are feeling so bad. I recently also felt so bad taking my Levi ( I literally felt it was poisoning me) that under my doctor’s supervision I stopped taking it. I had started having adrenaline rushes and was completely heat intolerant. I have since realised through Dr lam’s website that I actually have adrenal fatigue syndrome. If you have an underlying adrenal propel you should fix that before fixing your thyroid. I am doing his nutritional counselling and have made excellent progress in just 6 weeks. From my reading if you are stressed your body will not make thyroid effectively as well. This had definitely been my case when I was originally diagnosed. Do have a read on his website he has lots of articles and comments on the ovarian adrenal thyroid axis balance which had been my problem as I am just on the cusp of menopause. The thyroid is part of our overall endocrine system and should not be viewed independently. I hope that info is of some assistance.

Hi moomoo17, Why would you want to stop medication, when you are clearly very _under_medicated_, since your TSH is much too high at 5? That 5 is a big red flag that you are under medicated and that both or one of your FT3 and FT4 are way too low. Having TSH at 5 means that your actual thyroid hormones (TSH is not a thyroid hormone, it comes from your pituitary gland), are no where near the levels of where they should be. High TSH (bad) correlates with low FT3 (bad) and FT4 (bad), just as low (good) correlates with FT3 and FT4 being in the upper part of the lab ranges (good!).

If you were taking the right type of medication and the correct dosage, your thyroid hormones would be up where they should be and you'd have little or no hypo symptoms at all. When properly medicated, your thyroid hormones (measured as FT3 and FT4) will be at a correct level, and this will make your TSH be under closer to 1.0. This can be achieved in a matter of months, when on the correct medication. I'm so sorry that some doctor has kept you under medicated and suffering for many years! No wonder you feel so horrible!

ShootingStars, I think the TSH of 5 was on first being diagnosed.

Oh, sorry! I see that now. Thanks for the clarification. Two years of TSH of 5, what is wrong with doctors? 👎🏼👎🏼

Hopefully she will post her current results, since she’s asking how to find out if she’s hypo. Current lab results will tell (TSH, FT3, FT4, and antibodies TPO and TG), plus she’s got obvious symptoms.

Hi moomoo17, Oh my! What a scary situation. Yes, that is not surprising you had that reaction since you abruptly went down in major amounts so incredibly quickly, and then stopped it all completely. Your poor body and thyroid went thru major shock with too little hormones and then no supplementation at all. At this point, the damage is done. Stabilize your dosage, stick to it, and stop playing around with your meds before who knows what happens. Choose a dose (150? if this is where you had the best levels and least amount of symptoms) and stick to it for 6 weeks. It might not be an easy or fun 6 weeks, but you can't yo-yo anymore. After that 6 weeks passes, then you can test your TSH, FT3 and FT4, and see where you are. You might need to increase in a _tiny_ increment after that. You might find that you have increased symptoms for awhile after this experience, or that you do not go back to where you previously were.

When over medicated, it's recommended to slowly decrease your dose by no more than 25 mcs (which is probably too much). Simply reducing or increasing meds just a little (12.5 mcg +/-) can result in some significant changes either up or down in the range.

I hope you feel much better sooner than later! Hang in there!

:-)

hello everyone I do appreciate your replies, I'm sorry for my delay in replying, I am slow due to feeling so bad. I'm going to reply individually. Thank you everyone xx

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