I have had my thyroid meds totally removed because my dose was too high and my heart rate was higher than normal, I have been off three days and my heart rate resting is in the 50s to low 60s I am aching all over and feel not too good at all. Any advice please as I can't speak to my GP until tomorrow. Many Thanks
Thyroid meds removed : I have had my thyroid meds... - Thyroid UK
Thyroid meds removed
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Sharcott
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diogenesRemembering
First of all what was your heart rate (and BP if known) whilst you were taking T4? Second, how long have you been on T4 therapy? Thirdly, what dose? Fourthly, how long exactly since you stopped? If you have been on T4 for any considerable time (say a year or more) it is madness to stop suddenly. Your body adjusts to the T4 dose, and if you are to change for whatever reason, that change should be done slowly in eg 25ug steps over several months. By stopping T4 abruptly you are giving your body a severe shock. Tell your doctor to slowly change your precription in small steps, marking your state of health after each change.
What dose where you on? I was on 100 Levo two times 5 Lio but when I got ill in Dec my pulse was racing with the infection so I stopped the Lio my bloods always been okay
And for how long? 18 years
When was the last Thyroid test before this one and what dose back then - any change? it was two years ago and same dose
More info needed - what is actual TSH result (is it within range) & all ranges please. TSH 0.01 (0.30-4.20) Free T 4 35.2 (11-22) Free T 3 4.9 (3.1- 6.8)
I really don’t know if its dangerous
Has a trial of low dose T3 been suggested yes I have been on T3 untill Dec when I got ill
I have Hashimoto's Autoimmune Thyroiditis?
Are you under an Endocrinologist I am but trying to book an appointment
Who took you off Thyroid meds after 18 years & what meds precisely it was the respiratory consultant due to my heart racing, I think it was high due to infection but they say clearly its my meds
I don't think you will get a lot of help from 111. I would start to try to get your FT4 down by taking less T4 as a first try. Have you ever been on T4 only and if so have you any historic results?FT4/FT3/TSH. If so what made you go on to T3 as well? You look at first glance to be a poor T4-T3 converter, so dropping T3 might not be a good idea. Don't worry about the low TSH - the excess T4 is suppressing it.
The above answer seems word for word a copy of reply to me on a previous post.
Yes feel to poory to explain again waiting for Dr to call they wanted to send paramedics out. Hope you didnt mind me sending the same reply Mary
It's not that I mind (of course not) but it helps if you post full information on new post & make reference to previous post on same concern. You were too tired to stay on last post - but then didn't come back. Now you seem more unwell.
Glad you've made contact with the Dr, hope someone gets back to you soon.
If not, I would contact 111 again and take up the offer of Paramedics. You're not on your own are you ?
Paramedics will be able to check you over and monitor your condition.
We can't think straight when so unwell. Please ensure you get medical help soon. Then you can rest. 😊
On my own, now waiting on a senior dr to call ref meds.
How are you feeling now?
Wsa my post reported please ?
Is that a complaint?
Is it an observation?
Why would it matter?
Isn't this all repeating a previous post ?
healthunlocked.com/thyroidu...
2 days ago
Not sure why you posted this reply to me Susie -
I know !?
Not sure why you posted this reply to me Susie -
Because you asked:
Isn't this all repeating a previous post ?
so I was confirming what you thought.
I would go to A&E.
Or at least call 111 or Out-of-hours GP.
Might I also suggest that you mention previous posts.
Edit:
Wouldn't it be helpful if the Respiratory Consultant , who took you off all your Thyroid meds at once, contacted the appropriate specialist ie The Endocrinologist you are trying to book an appointment with.
Meanwhile, as that is not likely to happen quickly, the only thing I feel you can do for urgent medical attention is to attend A&E.
Hopefully you will get full up to date bloods done and be monitored. I would take all meds in with me.
No one on here can tell you what meds to take to 'fix' this.
No one on here is medically qualified nor knows you.
Complex medical conditions and meds review needs attention by medics.
Waiting on call from out of hours, they wanted to send an abulance with paramedics but just think I need to start back on some Levo
Seeing the medics might get you up to date bloods quicker & possibly fully checked for all your conditions.
However I understand the reluctance to go into hospital.
Had it been me, I would have stopped the levo for a while - but only a while, until the level comes down - and continued with the T3. Your FT3 is not over-range - in fact, it's only just mid-range, which could be too low - and without it you're going to feel pretty ill.
A respiratory consultant is not likely to know much about thyroid, and should not be meddling! But, I'm guessing that he cannot change your prescription, so you still have some levo/T3 in your possession? So, if it were me, I'd start back on the T3 straight away. And stay on it until you can get to see your endo and get further testing.
You have Hashi's, so that might very well have something to do with your results. Or, laboratory error is also a possibility. But, how long after your last dose of levo was the blood taken? The intelligent thing to do would have been to repeat the tests, rather than take you off all thyroid hormone. But I've ceased to expect intelligence from doctors!
One thing is clear, 100 mcg levo, taken normally and consistantly for two years, and tested normally, cannot suddenly, of itself, cause your FT4 to rise like that. Anyone that thinks it can, believes in fairies! Nor do I believe that a high level of FT4 would suddenly cause your racing heart. T4 is basically a storage hormone. So, in your place, I would not be worrying about over-dose, and concentrate on the other possibilities. 
This is everything I am thinking, and i agree with everyting, yes I have Lio hoping the dr that calls knows about thyroid, the only other thing Free T4 if not wrong I have had bad infections for 6 weeks, could it be reverse T3?
As you've had an infection for a long time, your rT3 will be high, yes. But that would have nothing to do with your high FT4. If anything, the FT4 should be lower.
But, you didn't answer my question: how long was the gap between your last dose of levo and the blood draw?
Sorry it was just after about an hour I had taken my meds
Well, there you are then! That's why your FT4 is so high. The test measured the dose you'd just taken. There should be a 24 hour gap between your last dose and the blood draw. So, panic over, resume your levo and get a retest as soon as possible, leaving the 24 hour gap.
Thank you, I was at the drs for something else and an appointment came up so I took it, I did say I had just had my meds
Yes, but, amazing as that might sound, they don't understand the effect that would have. They don't understand the difference between hormones and drugs like aspirin, they think the reaction is the same. So, they would not take that into account. Nor do they understand that the TSH will be lower in the afternoon/late morning than it is in the early morning. They just have a knee-jerk reaction to suppressed TSH and over-range thyroid hormones. If I were you, if this situation arises again, I would say no thank you, very firmly, and wait until I can get my bloods done early morning. That would avoid all this unpleasantness that you've been put through the past few days.
Thank you you have been so helpful
Just one quistion, would heart rate, anxiety be based on level of T3 or free T4 I think a lot of my problems were down to Infection and anxiety over another health issue.
More likely to be T3 if it's too high OR too low. T3 is the active hormone, and that's the one that causes symptoms. But, of course, they can both be caused by a lot of other things that are nothing to do with thyroid.
You're welcome.
I have just been pumped iodine since my last test, I had a CT scan so maybe will still be high, its a minefield
Iodine shouldn't make your FT4 high.
My Dr just said they will have to see whether I should go back on medication I am worried sick, I have been refered to endo but could take months
So, in the meantime, what is he going to do? Is he retesting?
Did you explain about taking the hormone just before the test?
Has he actually referred you yet, or is he just thinking about it?
Do you have any levo or T3 in your possession?
I have T 3 I am being refered, I left a message for Endo and Resperatory consultant, retest 3-4 weeks to long, I know they are doing their best for me. I will mention about taking before test to endro, my Dr said I know more about thyroid than her because I have it. I am so breathless, really hit me today. Just a bit scary
If I were you, I'd start taking T3 again.
I somehow doubt they are doing there best. They could do a blood test straight away if they wanted to. If they realised the seriousness of the situation. That respiratory consultant has really screwed up. He should be held accountable for his actions!
I will wait and see if I get a call back today, I have a form for a blood test to make in two weeks I can bring forward a bit
The respiratory consultant has taken advice from Endro they had a meeting
before or after he told you to stop your hormone?
Before, had a meeting on the Thursday and called straigh away after
OK, so it's the endo that's at fault. Well, he's more than likely a diabetes specialist who knows nothing about thyroid. But, he was 100% wrong to have stopped your hormone. That's just not the way it's done.
Yes they come under both now. I might have to pay to see someone I am frightened and desperate
As I said, if it were me, I would start taking some t3 again. That will at least help you to think clearly. Your FT3 will be very low, by now, because you haven't taken any for about five days, and all the T3 you had taken will be gone, and you won't be getting any from conversion because you're not taking any T4. You're bound to be feeling bad.
Thank you I know you are right, today is my worst day, they were taking me off T 3 anyway thank goodness I have some. I am going private
Ah, yes, they don't like prescribing T3, do they. They don't understand it.
Its the cost mostly
Yes, but not entirely. They don't know how to dose it, nor how to interpret the blood test results. They don't learn about it in med school.
I see, are you UK ?
No, I live in France.
Nice
Not especially, no. Not where I live.
Ended up in Hospital last night I am a real mess never felt so ill, felt like a big weight on my chest and a lot of pain in my throat, I am so tired getting weak but cant sleep at all
Not surprising. Did you start the T3 again? Did they do blood tests in the hospital? What did the doctors say there?
I am on a small does of T3 agreed by my GP made a huge difference, raised my heart rate and helped pressure in my chest and pain in my neck, Hopital said they couldn't do tests for thyroid but sent everything through to my GP had loads of other tests though and I was looked after so well. I have had an urgent referal. I think my GP will work with me untill then I may need to introduce T4 before I see him
Yes, you may. You shouldn't have come off them in the first place.
I am thinking that now but its happened so need to sort asap, Drs know so little about it
They know next to nothing about it. But, if you've got the levo at home, just put yourself back on it.
I am going to have to but they will refuse to prescribe anymore if I do, hoping I can sort something today. I am happy to take half the dose
If 7-10 days is half life then how can T4 be available upto 4-5 weeks please without taking anymore
Two things that need to be taken into account.
First, a "perfect" half-life would mean that if you start with 100% of something, then in 7 days you would have 50%. 14 days that falls to 25%. 21 days -> 12.5%. 28 days -> 6.25%. So, most of it would have gone after four weeks but a little would remain.
Second, the situation with T4 is not the same as with radio-active material (where half-life is followed almost perfectly for small quantities), and it is not even the same as many medicines. If you take 500 milligrams of paracetamol, that might well fall to 250 milligrams in two hours. 125 in four hours, and then tail off.
But, except in the most extreme cases of hypothyroidism, there is a large amount of thyroid hormone (mostly T4) bound to proteins in your blood. Taking a levothyroxine tablet adds to that and makes a very small percentage increase. That then falls away slowly. In someone on a regular daily dose, that becomes a tiny ripple on top of lake held back by a deep dam.
Not taking T4 is more like someone pulling the plug at the bottom of that dam. The level drops and drops and drops. But the full amount of T4 does not drop to 50% in 7 days.
As the level goes down, so too does the available T4 (Free T4). And the amount of T3. And you become more and more hypothyroid.
Thank you so much, I am still taking T3 just wondering how quicly I need to strart taking T4 again without causing too much loss
I'd follow diogenes and his point that sudden large changes are inherently bad.
We are second guessing what will be in your bloodstream today. We really do not know.
All this stuff about half-lives has its place - which is a) in research; b) to illustrate what might happen. You cannot just take theoretical half lives and work out how much you will have now.
If I felt over-dosed, or a blood test showed it, I'd probably drop my levothyroxine from 125 to 112.5 or 100 for, perhaps, a few days. Then re-assess. Your Free T4 was well over-range. Maybe I'd have dropped to 75?
If you have not had any levothyroxine for nine or ten days (that is what it looks like), your Total T4 will have dropped very significantly - with an impact on Free T4. But I couldn't put a number on it.
We have absolutely no idea what the response of your thyroid has been which makes it even more difficult.
Who said it was?
The half-life of T4 is 7 days. That means that if you took 100 mcg today, in 7 days time, you would have 50 mcg left in your blood, minus whatever got converted into T3. 7 days after that, you would have 25 mcg left. 7 days after that, 12.5 mcg… etc. etc. etc. Until it's all gone.
But, if you still have a thyroid, and you stop taking your levo, your thyroid will slowly start producing as much T4 again as it possibly can. It will go back to producing what it was producing before you started taking levo. So, it will keep you alive as best it can, but you won't feel very well.
I was told by a great consultant that because my thyroid was so badly screwed up it must never be allowed to work again, it would increase the risk of cancer so needs to be supprese, its already feeling pretty unpleasant, this is another reason I need to be taking T4. I am thinking can I get through to Monday on the Lio or am I better to strat now. Your help is keeping me sane.
I'm really not sure that that consultant was right about that, sounds a bit weird, but I don't know all the details. What I don't understand is, knowing all this, why you agreed to stop your meds.
this is another reason I need to be taking T4. I am thinking can I get through to Monday on the Lio
Taking the lio will stop your thyroid working again, if that's what your worried about. If you take enough of it. Because it will suppress your TSH.
Thank you thats great. The consultant is know as one of the best but only does private now. It was to do with my heart rate, resting was up to 74 and my heart was racing with infections and anxiety, I didnt know what they were going to find on the scan, so when the consultant saw the thyroid results said that was causing all the problems and he stopped all meds.
How can thyroid meds be responsible for infections? Frankly, these people make me sick.
He was saying it was responsible for fast heart, but as soon as I knew the CT scan results it came down on its own
Well, it all sounds like an uninformed knee-jerk reaction, to me. I can understand reducing the dose, but stopping it all just like that is sheer insanity and just shows that no-one involved knew anything about thyroid.
My Dr is meant to pick up and work with me I have now find out yesterday, but they obviously dont want to be responsable, they make the changes and send over to the consultant, I am not meant to be ill. Seriously worrying
Nobody is meant to be ill. If it were me, I'd tell the lot of them to go to hell, and self-treat. Sounds like you couldn't make a worse job of it!
I am shocked at whats happened, worst off all no one was interested or knew what to do next, no one saw a problem with it
Well, what's done is done, and the important thing now is to get back on your hormone again. How long have you been off it, now?
They are stopping my Lio anyway I will gave to buy my own
Disgraceful! OK, so if you have any levo, start taking it again. If it's only 9 days you can go back onto the dose you were on before.
I recieved a letter from the consultant yesterday it was an advisory that I stayed off the Levo at least until numbers of T4 came down, (but my GP refused to add thyroid to the bloods already at the hospital on friday) no mention of not going back on it by consultant, (my Dr said if you go back on it ) consultant no mention comming of the Lio!
The managment from here on was something left in the hands of my GP to manage, so no need to see the consultant ! oh wait a minute thats the only way they can get me off the Lio.
Have you ever tried NDT? I took Thyroid S 2 years ago and it suited me. I have taken Levothyroxine in the past and I prefer Thyroid S. I am in remission from Graves' at the moment so not on any thyroxine at the moment but I would not hesitate to take Thyroid S again because it did help me.
thought Graves was Hyper ?
Not always ... in my case I have periods of being under active it is all to do with my multi nodular goitre. I spent over 2 years being virtually bedridden because even though my TSH said 0.80 my T4 and T3 were very low. My antibodies have rarely gone down and remain at 4000. I am in remission now and my TSH is 0.37. To be honest I think the TSH means nothing because it is a pituitary gland hormone and always lags behind what your T4 and T3 is. This is just my opinion btw you can read my story on my profile page.
But you dont have Hashi ?
So? I was trying to help but I will let someone help instead.
Sorry we turned it back on you, maybe people are trying to help
Which antibodies are 4000?
Thyroglobulin
A Thyroglobulin of 4000 is Hashi's, not Grave's. They might be slightly over-range with Grave's, but not that high.
Well the Doctor says it is Graves' disease because I did have slightly bulging eyes as well which have now calmed down. My other result is Thyroid Peroxidase Antibodies 577 they were 600 for a number of years so this is the first time they have dropped.
If you have lots of antibodies against the thyroid stimulating hormone receptor it graves
The doctor cannot know if it's Grave's without testing TRAB or TSI. Bulging eyes are not proof-positive of Grave's, you can also have them with Hashi's - it's rare but it happens.
If you have both over-range TPO and Tg antibodies you have Hashi's. You could also have Grave's - that too is rare by does happen. But, with Grave's you do not go hypo. That is Hashi's, no matter what the doctor says. It sounds like you are one of those increasing number of cases we see on here where the doctor has mis-diagnosed Grave's because he just made a wild guess based on flimsy evidence and did not do the correct testing to back it up. That is not rare, it's increasingly frequent.
I might have both for all I know.
You might. But, don't you think you ought to find out?
What difference would it make? I still would not get treated by the NHS because they don't know enough about thyroid disease.
Well, for a start, if you're going to be advising others about what they should and shouldn't do, you ought to at least be up to speed about what's wrong with you. And, you would understand your different swings from hypo to hyper, etc. And, when your thyroid packs up completely, you will know why. I would have thought it was essential to know. But, ignore me if you wish, I'm only trying to help.
I am not advising people I am just passing on my experience and what I found works for ME. They can try what I have done or they can listen to you as you seem to be an expert on thyroid disease. I am not an expert and I don't pretend to be one because I am just a member of a support site and that is all I want to be .....
I don't pretend to be an expert, either. I have some knowledge but there's a hell of a lot more that I don't know. But, I think that telling people you have Grave's and then talking about lapses into hypo is very confusing. I just happen to believe that you ought to know what you have for certain before telling people you have it.
Well Dr Skinner told me he had come across people like me and I was a rare case. He was the best Doctor I have ever seen and I don't think I will find another like him. At the moment I want a rest from blood tests and stuff so I might do further tests in a couple of months. What I would really like to know is why some people with thyroid disease have kept their hair while mine has fallen out twice now ... do you have the answer to that?
Nope. Wish I did. But, so many things can cause hair loss. It can be the low hormones, it can be the levo. It can be nutritional deficiencies. And probably a whole host of other things too. It's not something that doctors have a definitive answer to, either. We just have to paddle around and find our own answer because everyone's answer is probably different. But, a very good place to start is looking at iron. Possibly a combination of low iron and hypo…
Low B12 mine feel out - Hypo thyroid mine feel out - Hyper Thyroid B6 D So many reasons but very common with Hypothyroidism
Oh, and I don't think even Doctor Skinner could know if you had Grave's without testing the antibodies. Great as he was, he wasn't clairvoyant.
I’m being treated for it. Tgab, tpo and trab. Well monitoring anyway and yes because they don’t know how to treat but at least I know what I have and they are making sure I’m ok. Get all of them tested. Make them work for their money.
I am great with Levo and Lio thank you
Oh, dear, it's an absolute mess! Could you do private labs to see what's going on?
I can but back on tablets now taking 50 levo 10 Lio so best to wait a couple of weeks to see what happens, it will take longer to drop now. I have infection back so thats my main priority tomorrow.
Yes, it sounds like the infection was the root of the whole problem.
I think so and the fact it wasnt cleared up
What a flipping muck up . Must have been terrifying for you going through all that alone. 🙋♀️ It’s me from the group by the way. Just read all through x
Hi yep I was beside myself managing my own meds now, my dr saidI have noted it, I said yep right self medicating
I had put myself on 50 levo and 10 - 15 Lio that was at least two weels ago my results are Free T 4 10.9 normal range 11-22 Free T3 3.9 normal range 3.1-6.8 I feel awful, where would I have been off my meds for 6 weeks. my Dr wont speak to me until te 6 march
I had put myself on 50 levo and 10 - 15 Lio
Does that mean you were alternating T3 doses?
yes seems to work now 100 levo one day 75 next
SeasideSusieRemembering
Mary-intussuception - quoting from your post which you have subsequently deleted:
Erm . . .
I didn't ask you !
Ermmm … Did you get out of the wrong side of the bed? You, like everyone else, have posted on a public forum so shouldn't be surprised if anyone replies to anyone else's post, there is no exclusivity.
I was making reference to the poster's previous post on this in a spirit of helpfulness (thinking also of responders ).
Which is exactly what I was doing in answering your question.
As the Respiratory Consultant (the medic who stopped the Thyroid meds) cannot be contacted via his/her secretary until at the earliest Monday it would appear that the only thing to do is to attend A&E or contact a doctor via 111 or Out-of-hours GP.
No one on here can 'fix' this .
The information re who stopped the meds wasn't given up front.
It does help if posters give full information in original & subsequent posts.
That information should be directed to the original poster, not me.
As you apparently don't like me responding to anything you say, I will refrain from directing any further responses to you on anything in the future.
By the way, as you reported Sharcott's post, it would have been helpful to have given a reason for reporting it.
Someone, who others tried to help the other day , is now unwell -
And you want to argue ?
Why not help the poster?
What on earth has happened here? ??
Quote
"That information should be directed to the original poster, not me "
why was it reported I will delete the whole tread
I'm sorry Sharcott Mary did not give a reason when she reported the post and she's obviously not commented here when I mentioned it. It was rather a strange thing to do considering that she was in discussion with you.
You don't have to delete your thread, there's not a problem and it has some valuable information in it that may help others now that Greygoose has explained why your FT4 was so high.
Please don't worry about it
If I go to 15 my pulse is going quite high. I believe the thyroid gland releases small amounts through out the day
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