Overmedicated

[susiebow]

So turns out Gp said I have been overmedicated with thyroxine for years,that's why I have not been well for 8 years.But since going hyper recently I feel bad if I reduce,and now going downhill,it's a feeling I have never had with my thyroid.I can't seem to feel better if I go up or down.

[NWA6]

Sorry, I don’t believe your GP, I know nothing of your history but I’m gonna go out on a limb here and say BS (ok I’m being sarky but…)Do you have a history of results? What’s your latest results?

[tattybogle in reply to NWA6]

i previously collected all susiebows previous results:

Most recent ones now back on Levo only are here:

healthunlocked.com/thyroidu...

the previous ones on Levo / then Levo +T3 / then T3 only / then NDT / then T3 only / then T3 + Levo are here:

healthunlocked.com/thyroidu...

[NWA6 in reply to tattybogle]

Oh good grief! So much patience’s! Lol that was quite a lot of info to get through 🤗

[SlowDragon Administrator]

without testing TSH, Ft4 and Ft3 together your GP has absolutely no idea what is going on

[greygoose]

If you feel bad when you reduce your dose, it's more than likely because you don't need to reduce your dose. People that have been over-medicated 'for years' usually feel better when they reduce, not worse. I agree with NWA6 : BS. Your doctor is making it up as she goes along to justify herself. Ask her how come she didn't notice you were over-medicated before if you have been for years?

[susiebow in reply to greygoose]

Well the gp I had been seeing for 8 years left this spring,and she has taken over my care,well 3 Drs have So it's a bit confusing.

[PPower]

susiebow, what are your most recent labs results?

[NWA6]

Morning susiebow. So I’ve had a quick look through your blood test history, courtesy of the very lovely and patient tattybogle and is seems quite apparent that neither you nor you GP know what you are doing and as harsh as that sounds, you have got to stop all this chopping and changing. I know you are desperate to be well, I do know that feeling all to well, but it’s just like you are perpetually chasing that perfect blood test but not actually being stable enough or listening to your body or understanding enough. Now if I’ve got this wrong, I apologise, but those of us who understand our thyroid conditions, really educate ourselves, we won’t allow a doctor to lead us down the wrong path because we know, we know more than they do. We still have to fight for the right treatment or self treat but we’ve researched it enough to feel ok with that.

So again, I call BS on your doctor, you are not overmedicated, you’re just not on the right path.

For one, just forget about your TSH score, just blank it, you and your doctor are mistaken if you think that TSH will indicate anything at this stage. Look at your FT3/4, b12, ferritin, folate, Vit D.

I’m sorry if I come across as unhelpful or unsympathetic, you’ve been given loads of advise in the past, you must utilise it, if you don’t understand something or it feels complicated atm while you feel unwell, keep asking questions, keep following the advise (from patients who’ve experienced this) How do you think we all gained this knowledge? We had to work hard through our own medical breakdowns, brain fog, depression, bones hurting, insomnia, couch ridden years. We are here to support but there’s only so much we can do, you have to be the one to make yourself well. I think you need a fresh start, forget about your history of blood tests, they’re almost useless because you’ve made so many changes in such short amount of times.

[susiebow]

Thank you for your input.When I first started thyroxine,I used to pop my pill and get on with life.It had to be teva make though.When they withdrew teva,a few months on new brand I went haywire taking the same dose I was taking on teva,but appears that was to much and I went hyper in symptoms and bloods.Never been right since,and now I am suddenly worse.I got Paul Robinson's book ont3 trying to get well,read lots of other books.I agree stability has been hard to achieve.My gp will not do t3 bloods and goes by tsh,I have had blue horizon bloods done ,but she is not interested in them.I was a Staff Nurse working in NHS for 35 years ,so do understand and have knowledge of the thyroid.I have been trying to make myself well.I t is confusing when people say your not over medicated ,when your shaking,sweaty,panicky,and have low tsh,high t4and mid range t3.What are supposed to do,ride it out or reduce,I have never felt so bad.Now on 100 mcg a day.

[greygoose in reply to susiebow]

You forget the TSH and go by the FT3. If the FT3 is too low FOR YOU, as an individual, you are going to feel ill.

All the time you are reducing your levo (T4), you are also reducing your T3. That is why you feel so ill. Symptoms can be confusing because so many of them can be due to both under and over-medication. That's why we do blood tests, to back up our symptoms. And, if your FT3 wasn't high enough to begin with, reducing the levo is not going to help you get better.

Your doctors are obviously useless. It's time to take charge. Put your foot down. This isn't working and you know it. Riding it out may sometimes be the solution, but reducing your T3 to rediculously low levels is not. You are obviously a poor converter, so what you need is some T3 added to a reduced dose of levo. I know you've tried it before, but you didn't give it time to help.

Tell your doctors they've had their chance to make you better but it didn't work. Now you are taking charge of your own health, and if they won't prescribe you the T3 you so desperately need, you will source your own! Either that will kick them into action or you'll have to stand by your words. Either way, you will be better off.

[tattybogle in reply to greygoose]

just for info .. susiebow's basically been on 112.5 for the last couple of years (showing high /over range fT4's with shaking as a prominent symptom)

and has only reduced to 100mcg 20 days ago.

She replied to me below that the shaking is now gone after 20 days on 100mcg. which is the same thing she reported the last time she very briefly reduced to 100mcg.

Some of susiebow's posts give the impression of 'repeated reduction in Levo' but effectively it's only just been reduced to 100 from 112 very recently, and the shaking has stopped .

[greygoose in reply to tattybogle]

Yes, but I was talking more about T3 than T4. The shaking may have stopped but if the FT3 has gone down too low, that's not going to help with anything else.

[tattybogle in reply to greygoose]

i agree , just checking you knew

[greygoose in reply to tattybogle]

👍

[Batty1 in reply to susiebow]

Quick question. When Teva was no longer available what medication did they put you on? Sorry I missed this info.

[susiebow in reply to Batty1]

They put me on Workhardt.Now on mercury pharma.

[Batty1 in reply to susiebow]

So you felt good on Teva and then switched to workhardt felt bad and now switched to mercury and still feelBad …. Is this correct?

[susiebow in reply to Batty1]

I was on teva for years ,8 years ago they withdrew teva ,and I went straight onto workhardt,not knowing that different make would be stronger due to teva dosage problems,as I always had teva,I didn't have any issues as appossed to those who mixed there thyroxine makes.I then became ill and hyper tsh was 0.02 ,t4 26.The gp switched me there and then to mercury pharma and been on it for seven years.When on teva I rarely had a suppressed tsh like now.It's just these past 8 years I have been ill and had to retire.I am always hot,and no stamina ,always have a low tsh,but these past 7 months have been the worst sudden low ts h and high t4 with symptoms.

[NWA6 in reply to susiebow]

I’m sorry , but the fact that you were a staff nurse does not mean anything. Esp if you read all the posts on this forum from members who have been treated appallingly by medical professionals. And the fact that you constantly refer to your TSH result means that I feel quite exacerbated with your story.I am so so sorry that you had to retire early, that must feel awful. But you can get your life back on track. I feel like your history has become one big jumble and it’s difficult to know what’s gone on. That’s why I’m saying start from now, forget about past results and start fresh, that way more forum members can help you. Good luck going forward.

[susiebow in reply to NWA6]

Why I keep referring to ts h and t4 is that is all the blood tests I can get on NHS .I was only referring to being a Nurse because I was trying to impart that I do have some knowledge.As to understanding about how medical profession treating patients badly,well yes I can relate to that as a patient,but really hope that is not what I did ,and always tried to go that extra mile to help and understand things from the patients point of view.As for understanding thyroid issues I really do believe it comes from Doctors.I know that in surgeries Drs have templates for most conditions and follow them ,with no interest in what if you don't fit that template.They then refer you upward to a Consultant who has set ideas,if you are lucky you may get a Consultant who is more open minded.Dr Toft is one such dr,but retired.I really do feel badly managed since I said to my gp when first diagnosed I didn't want to start thyroxine,especially when I didn't feel ill in the first place.I now know I should of gone down homeopathic route first,but it's too late now.I appreciate the time you have taken to answer,and can understand the mess I am in,but I don't want upset you and maybe best of you just give my posts a miss.

[NWA6 in reply to susiebow]

You think homeopathic treatment would have helped your autoimmune condition? And you think that doctors help you understand your thyroid condition? I’m not upset with you, I’m upset for you because even after all this time you still say things like. It makes me despair! Although, you have said ‘I don't want upset you and maybe best of you just give my posts a miss’

I think what I’m really hearing is that my replies are upsetting you and you’d rather I not reply. Totally understand, I’m a fire starter. I no longer apologies for it. I’m Irish, and proud and feisty. I’ve lived long enough to know that it’s overbearing for some and I need to back off and I will, but not before I say FFS 🤦‍♀️ no one is coming to save you! You, me, all of us on this forum have to save ourselves! Goodnight, godbless(I’m an atheist but that Irish upbringing doesn’t let me think of anything else nice to say) and good luck 🤗

[SlowDragon Administrator in reply to susiebow]

When we first start on levothyroxine, it can work well

The longer we are on levothyroxine, especially nearing or after menopause, conversion of levothyroxine (Ft4) to active hormone (Ft3) frequently gets worse

When conversion gets worse….Ft4 gets higher (too high) and Ft3 gets lower

Symptoms can be caused by too high Ft4

Symptoms can also, of course be caused by low Ft3

Would suspect you are improving by lowering dose of levothyroxine as this is reducing high Ft4….but at same time getting worse as already low Ft3 drops even lower

Conversion and vitamins

For good conversion we must have GOOD vitamin levels

Obviously your vitamin D was deficient

How much vitamin D are you currently taking

Brand levothyroxine

What age approx were you when Teva changed for Wockhardt

Have you wondered Why did Teva work better…..Teva is lactose free, so have you considered you might be lactose intolerant

Have you tried new Teva ?

If not……why not

Has any endocrinologist or GP ever suggested trying liquid levothyroxine

Many members who are on liquid levothyroxine find it works better.

Something to discuss with endocrinologist before trying T3

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

[susiebow in reply to SlowDragon]

Yes,I did try new tev a and it gives me nausea.Yes I will discuss liquid tyrosine with Am So ,thankyou.

[tattybogle]

"It is confusing when people say your not over medicated , when your shaking, sweaty, panicky, and have low tsh , high t4 and mid range t3 . What are supposed to do ? ride it out or reduce, I have never felt so bad . Now on 100 mcg a day."

Take it one logical step at time.

Rule things out by a methodical process of elimination.

Be patient and do each step properly for long enough.

Get the blood results from each step.

Put them on here.

And THEN ask people if they think you are overmedicated or not , and what they suggest you do next.

It seems to me that you are the one who has been describing symptoms of possible overmedication for a very long time. and your fT4 is very high/sometimes over range. so ....

It's a a process of elimination.....

1 ) find out if the high /over range fT4 is giving you these symptoms of shaking /sweating/ panicky feeling.

This is what you are doing now ~ trying 100mcg for 6 weeks instead of 112.5.

2) Get some proper blood results from this dose ... pay for it yourself so you get an fT3 result .. you need to know what fT3 is when your fT4 is back in range.

3) once you have got fT4 back comfortably in range, these symptoms will either improve.. or not .

On Levo alone , some people need fT4 to be high /over range to feel well ,, but i think we can safely say you've already tried that and you don't feel well. so that's one thing already ruled out . high fT4 on levo alone doesn't suit you .

So ..... IF you don't feel any improvement in these symptoms when your fT4 has been lower for at least 6 weeks .. then the next thing to rule out is , "is it low T3 causing these symptoms ? "

So the next step for you would probably be to add a small amount of T3 to the levo, and carefully see what happens for another 6 weeks .. and then do anther blood test .

This is not to say that it's not something else causing the problem... but following this plan means you can rule out " too high fT4 for you " as the problem , or perhaps you'll discover that it is .....which is something you haven't been able to find out for the last year or so ,because each time your dose is lowered you put it back up again a few days/ weeks later.

Do one step ,

Wait 6 weeks at least,

Get bloods ,

Ask advice Here

Take the next logical step .

Don't expect to feel better quickly... you are doing a careful process of elimination and observing if any of the steps lead to an improvement.

If you don't do each step carefully enough you will not learn anything and will just keep going round in circles.

if you lower fT4 back into range and keep it there for 6 weeks and this doesn't improve the shaking/ sweating / panicking at all... then you move on to the next step in the process of elimination ... which will be .. "do you need higher fT3 ? "

There is no quick way through this process. But by changing doses/ hormones so frequently and not being methodical about how you do it , you have already made it take much much longer that it needed to.

So far, you've taken a '6 month job' and turned it into a 'multi-year ramble without reading any of the road signs '

It's a tough walk though a blizzard . one step at a time, reading the road signs at every junction ,but that is the only way to get to the right place.

Keep going .. you can do it. You've just got a bit lost because you rushed past the last few roadsigns.

[susiebow in reply to tattybogle]

Thanks tattyboggle,the voice of reason.My hand shakiness has gone and panic,20 days of 100.Symptoms at minute are short of breath on excretion nausea,aches,feeling like a zombie ,got up and dressed today,just wanting to sit with eyes closed.Seeing everything that needs to be done in house,can't go out to see elderly mother.It is so distressing that there is so much to do and your body will not let you do it.I really feel 100 mcg to low ,but sticking with it.But worried I may need t3 ,as I had to take early retirement and just can't afford it.

[tattybogle in reply to susiebow]

So .... if the hand shakiness has gone , and the panic is less.. then that points to "too high fT4" being a least part of the problem. And i remember one time previously when you briefly tried 100mcg that you said the same thing .. the shakiness reduced.

So stick with it , allow you body to get used to this lower level.... and when you get to the point you can have fT4/fT3 tested together... THEN you can think about the need for T3 . don't worry about it yet. Leave tomorrow for tomorrow.

I totally understand the distress of seeing how much there is to do and not being able to do it.

But you are very unwell.

So let everything (that isn't absolutely essential) go for the time being... just let it all go. and instead , congratulate yourself for any small steps in the right direction that you do manage , however small a step it is.

I had two large building's to renovate when my previously 'OK'(ish !) thyroid replacement went 'wonky' and i started needing to have my doses messed with .

I was a mental and physical mess, and just couldn't keep up with jobs and was panicking about absolutely everything,

That was about 3 /4 yrs ago now .

I had to learn to let stuff go, and leave it to the gods/ or my children to sort out.

I used to run a garden, and keep everything in tip top condition.

Now 75% of things are not looked after in time, and many of them get left to die , or freeze , or become pot bound.....

But i'm happier . and i concentrate on enjoying the few plants that i did manage to re-pot /prune / care for this year .. and i know that next year i'll manage to do a few more .. if something doesn't get done , i just let it go.. and let myself off .It's the same with the buildings .. if do a little bit when i can , and congratulate myself for that.... and forget the rest.

I'm doing my best and i've learned to be happy with that.

And after a couple of years of being like this , i actually feel quite optimistic that i am slowly improving in my health.. and that i might just be able to manage doing some of the 'other stuff' again .

Finding stability again when you've been badly knocked off course, is a long journey .. and i found it starts with letting go of the "but i have to do this, and this, and this, and this, and this " ..... and accepting you're not well enough to do it at the moment.

[Bookworm63 in reply to tattybogle]

So so true Tattybogle. I've had a difficult three years with my thyroid health and its taken me time to really understand what my body is telling me. Earlier this year when it all went haywire again I had to do exactly as you describe, let go, trust that it's not permanent and let the medication take its time to do its job and then re test. All good wishes to you Susiebow in going forward, hope you start feeling better soon.

[Gem5987]

For what it’s worth when my TSH goes below .4 (.4 - 4.5) I feel the same symptoms you describe, and it takes a while to feel better.

[susiebow in reply to Gem5987]

Thanks for that info Gem5987.