Stopped T3 - feel dreadful!

[Jojozo]

Hi everyone! I'm after a bit of advice. I went to see an endocrinologist a few weeks ago and my T3 level was pretty high (I've been self-sourcing after another private doctor told me a couple of years ago my levels were 'disastrous'). The endo suggested that I stopped T3 and just carried on with the T4. It may be coincidence but I am now so ill I don't know what to do with myself. I had a flu jab several weeks ago but this definitely feels flu-like. I've also had sinusitis for a couple of months and I've been on two different antibiotics which didn't shift it. Then I got terrible cystitis on Monday (I was passing blood. Sorry if TMI!) so I was put on C-Amoxiclav for both infections but I still feel horrendous. I'm trying to finish a big work project before tomorrow and it's honestly painful to type (I feel like such a drama queen). I've been going to bed at 8pm every night and waking up each morning hoping it's getting better (as illnesses do) but I don't feel like it is. I have a burst of energy first thing and then it's back to square one. My stomach is very painful, I don't have much an appetite and my throat feels quite swollen. I'm also feeling really emotional (possibly due to the ABs and tiredness?) and all I want to do it sleep. ALL the time (but I can't). I'm taking lots of supplements alongside by usual ones to try and build myself up but I'm not really sure what else I can do, and if it's linked to stopping the T3. I was 25mc before so it was quite a drop and I'm wondering if the endo should have suggested tapering them off instead (if indeed that is what's causing all of this). Thanks SO much for any help/advice anyone can offer.

[Clutter]

Jojozo,

What was your FT3 result and range which made the endo want you to stop taking T3? Was the Levothyroxine dose increased to compensate for the T3 being stopped? Have you had a thyroid test to check levels since stopping T3?

[Jojozo in reply to Clutter]

Thanks so much for your reply. These was my results from the test which was done just before I went to see the endo. I'm currently on 150mg of T4 and it has stayed the same since I lowered my T3. He's told me to 'see how I feel and go back in six months'. But I can't really go for six months feeling like this if the lack or T3 is what's causing it.

Serum free thyroxine - 19.0 (12-22)

Serum free triiodothyronine - 12.2 (3.1-6.8)

Serum TSH - <0.01 (0.27-4.2)

[Clutter in reply to Jojozo]

Jojozo,

If you took T3 before the blood test that will be why Free Triiodothyronine (FT3) is high. If you left 12-24 hours between last dose and blood draw you were very over medicated.

If you still have T3 why don't you add 12.5mcg to your 150mcg Levothyroxine. I would stick with that for 6-8 weeks and have a thyroid function test including FT3 before increasing further. Blue Horizon Thyroid Plus 6 includes TSH, FT4 and FT3. thyroiduk.org.uk/tuk/testin...

[shaws Administrator]

I could NOT function if I didn't have T3. Your T4 is too low I believe (am not medically qualified). If we take T3 our T3 will be higher as the blood tests were invented along with levothyroxine, so cannot possibly be similar if we add in T3.

25mcg of T3 is roughly equivalent to 100mcg of levo, so it's a big drop. Did he increase your levothyroxine instead.

I would have a private test if you can afford it to see exactly what your Free T3 is at present - FT4 if you can afford both.

These Endocrinologists, mess about with our doses and we're left to get on with it. They have no idea how our body relies on these supplemental hormones. Why other do we have to have life-long replacement. The following is a link by a doctor who only took blood tests at the initial consultation and thereafter it was all upon the patients' clinical symptoms.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

[Jojozo in reply to shaws]

Thanks so much for replying. That link is really interesting. I'm going to read on!

[shaws Administrator in reply to Jojozo]

Here is another couple of links and this Doctor is Canadian and many of our doctors trained in the same era as the doctor in the link have lost their licences too (Dr Peatfield resigned rather than carry on with the GMC investigation. Dr Skinner was also another who was hounded was in front of the GMC about 7 times and eventually died of a stroke. Who complained about Dr S, it certainly wasn't any of the near 3,000 patients who said he 'saved' their lives.

Dr Skinner was a Virologist - Dr Peatfield studied in the USA and is British.

thyroid-info.com/articles/d...

healthimpactnews.com/2013/w...

worldthyroidregister.com/Le...

[Saggyuk]

Yeah that's quite a large drop - so maybe should have done it a little slower tbh maybe ten at a time! If you have any left, maybe add a little back. just in case it's any part of it. Co-amoxiclav is pretty strong and makes me feel absolutely terrible, I react pretty stongly to this one in comparison to others, does the job though!

[Jojozo in reply to Saggyuk]

Thanks Saggy! Do you tend to feel very tired on it? I wouldn't mind as much if I could lie on the sofa or sleep but I've got so much to do I can't really take a break.

[Saggyuk]

I react very badly to it - almost allergic, would never really take it again unless no other choice - bad breathing, trachycardia and weakness, barely got through the course. However, it did clear the infection where none others had touched for months - I was on three different antibiotics all at the same time for months beforehand and hadn't touched it, coamoxiclav cleared it in one week

[Jojozo in reply to Saggyuk]

Ahhh, that's good to know thanks. I've only got a couple more days to go so I should probably stick with it. It's cleared up the UTI and I'm wondering if the other symptoms - headaches, weepiness, exhaustion, congestion, etc - are to do with the thyroid rather than a secondary infection.

[humanbean]

I don't think having a high Free T3 result is a good reason for stopping T3 altogether. It might be a good reason for reducing your T3 dose.

I've seen this problem lots of times, on this forum and others. Doctors see a result they don't like and they HUGELY over-react, making their patients lives an absolute misery in the process.

If you still have some T3 you can dose with, in your shoes I would start taking it again, just reduce the dose by an amount you feel appropriate.

[Jojozo in reply to humanbean]

Thank you, that sounds sensible. It felt like a big drop to stop it all of a sudden. I'll go back to taking a smaller dose but I think stopping it altogether so quickly isn't terribly sensible.

[humanbean in reply to Jojozo]

I don't understand.

Why do you think you have to stop T3 altogether? Just because a doctor said so? Why not just lower the dose a bit and stay at the lower dose for a few weeks than test again?

[Jojozo in reply to humanbean]

The endo told me to because my levels were too high and I should stop it for six months. I've just been back to the doctor and they said to stick with the endo's instructions because 'they know best'. But in this case I'm not sure they do! I'm having another blood test at the end of next week...

[SeasideSusie Remembering]

Jojozo Flu jabs can lower our immune system so it's possible you picked something up afterwards.

I had one type of antibiotic earlier this year and it caused terrible fatigue, definitely a side effect of the AB, it was listed in the patient information leaflet as a common side effect), and the fatigue went when I stopped the AB.

Are you taking a good probiotic to replace the good bacteria that the antibiotics have killed off?

Have you read the patient information leaflet (PIL) to make sure you're not/didn't taking anything you shouldn't have at the time? The one I was on you couldn't take milk 4 hours either side, it was quite difficult to time that particular one, and I had to stop most of my other supplements as the PIL said vitamin and mineral supplements shouldn't be taken whilst taking the AB.

[Jojozo in reply to SeasideSusie]

Thanks Susie. I'm going to see a doctor this afternoon to ask about the ABs and whether they could be causing this. I'd rather have the sinusitis than feel like this! I have no energy at the all. I can't see anything on the leaflet about avoiding anything but I'll certainly check today. It can cause nausea and an upset stomach, both of which I have.

I am taking probiotics to try and redress the balance. Better to have this now than over Christmas though!

[Hidden]

Sorry you feel so awful. I'm on T3, when I've had a test result high in the range my GP has simply arranged a repeat test right after taking T3 and several hours later. It peaks and troughs quite a bit so a single test tells you very little once you are on T3. I don't think such a big change in your stable dose of T3 is clinically reasonable if you were getting on well with it. At the very least you deserve a repeat test. Also suspect that abruptly stopping T3 will send your T4 and TSH all over the place till your body adjusts. Could you call the endo and say the change has made you Ill?

It really sounds like a horrible experience. All the best,

Michael

[Jojozo in reply to Hidden]

Thanks for your reply Michael. My latest test results are indicating adrenal issues so it could be that my symptoms are being caused by that. To be honest, I’ve been feeling terrible on and off since I first posted this, so it’s been dragging on! It’s not ideal but at least if I get an answer, I’ll I know how to treat it properly.

[KittyKat00 in reply to Jojozo]

How are you getting on Jojozo What has it turned out to be? All the best