Day 4 and 5 on T3: I’m continuing to post on here... - Thyroid UK

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Day 4 and 5 on T3

Wired123 profile image
22 Replies

I’m continuing to post on here in case it helps someone now and in the future.

These first few days on a new drug/hormone are always fraught with difficulty.

So my first few days were mainly high heart rate (about 15bpm above Pre-T3 rate) and an uncomfortable feeling in my chest. I’m happy these symptoms have gone away and my heart rate is back to normal.

My new symptom which started on day 4 is a discomfort at the top of my stomach in the centre, just below the chest/below rib cage. Never had this before, it tends to come on later afternoon.

Anyone experienced this?

I’m sticking to just 1 x 5mcg dose T3 along with 150mcg T4 both taken in the morning.

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Wired123 profile image
Wired123
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22 Replies
jrbarnes profile image
jrbarnes

I'm on day 8 of adding T3. On day 5 I had to reduce my Levo from 88mcg to 75mcg because of an odd feeling in my chest as I tried to increase T3. On day 6 I tried to increase T3 by 2.5mcg and had nausea and some illness in my stomach in the morning so I backed down on the T3. Currently I'm at 75mcg of Levo and 7.5mcg of T3. I'm thinking I I might attempt another T3 increase as my T4 depletes. That's my experience so far.

Wired123 profile image
Wired123 in reply tojrbarnes

Interesting.

So we’ve both had the chest sensation and tummy discomfort.

Have tracked your heart rate?

jrbarnes profile image
jrbarnes in reply toWired123

I don't track my heart rate as I know the symptoms of too much T3 are nausea and an overall yuck feeling for me as well as body weakness and fatigue. On the other hand, T4 that is too high gives me chest discomfort when combined with T3. Interestingly, I used to wake with a pounding heart early in the morning before adding T3, which I attribute to low T3 affecting my cortisol but as I've slowly increased T3 this has changed.

Wired123 profile image
Wired123 in reply tojrbarnes

It’s quite a minefield this, everyone has a different experience on it and it’s hard to know whether it’s T3 or T4 causing the symptoms or indeed if it’s just the first few days and the body is just getting used to it.

My heart rate has shot up over the last hour to between 90 and 100, far too high for when I’m sat on the sofa watching some pretty routine tv shows and nothing dramatic!

jrbarnes profile image
jrbarnes in reply toWired123

It sure is. I've cut most supplements save a few that are necessary and waited to add T3 until I was stable on T4 because I couldn't determine what needed to be adjusted. When I started taking Levo again my T3 was so low that I'd get startled easily and have adrenaline spikes. Noises also startled me and overall just aggravated. I'm so thankful to have T3. I usually wake up when it's still dark in the morning, around 4, and take my Levo and 5mcg of T3 then at 12 noon take 2.5 mcg of T3. I haven't been getting those 3-5 afternoon slumps, which is a relief. I'm wondering if the issues you're having might be due to not enough T3. When I scaled back on the Levo a tad and added in more T3 all those issues went away. When I got to 5mcg of T3 that's when I had to scale back by 12.5mcg of T4.

PixieElv profile image
PixieElv in reply toWired123

Hi DK123, do you have any experience info on if T4 causes high blood pressure? Or is it only heart rate problems you’ve experienced?

Thank you

Wired123 profile image
Wired123 in reply toPixieElv

I think my issues are from the addition of T3 as opposed to T4. Been on stable T4 dose for over 10 years.

McPammy profile image
McPammy

You may feel better if you increase your T3 and take a second dose mid afternoon. I take 5mcg twice a day as prescribed by my private only Endocrinologist. I’m also on 75mcg Levothyroxine. T3 lasts about 8/10hrs and has a half life of 2/3 days. So if you are a poor converter of T4 you may well dip 8/10hrs after taking your T3 as your body may be converting poorly. Your hormones need a steady flow of T3.

Your heart rate may be increasing while your body is trying to catch up and convert T4 Levothyroxine.

If you decide to go for a second daily dose it will take 2/3 days to feel the real benefit.

Have you had the DIO2 gene test to check if you have the faulty gene preventing you from converting T4 to T3 naturally well enough.

And what were your blood results prior to starting T3.

Wired123 profile image
Wired123 in reply toMcPammy

I’m due to start adding the second dose in as the guidance here was to slowly go up. My first few days I was getting uncomfortable chest sensations so I decided to wait before adding in the second dose. Chest sensations have gone but I’ve been concerned by the high heart rate later on in the day, but I think you have explained what this could be. I always thought high heart rate meant being over medicated, but clearly the opposite is also true.

My DIO 2 results are taking a few more weeks annoyingly.

McPammy profile image
McPammy in reply toWired123

It could well be true. As when I am over medicated my heart rate goes very low. That happens if I’m over on Levothyroxine also in the past. I wore Fitbit and now I wear a Apple Nike fit watch, so I can track almost everything now. Recently I went over medicated on Levothyroxine and my heart rate plummeted. As soon as I reduced my dose of Levothyroxine my heart rate went back to my normal of about 58bpm instead of high 40’s. I’ve had my heart checked out through my local hospital in the past and it’s absolutely fine. It’s just the thyroxine medication. And when I was under medicated my heart rate was higher. So for myself there’s definitely a link.

Try it twice a day and see how you go for a week or so. Keep to 7/8hrs apart. I think it might be what you need.

I hope your results come through soon. You could always give them a call to check on the progress.

Wired123 profile image
Wired123 in reply toMcPammy

That’s really interesting. I’m tracking with the Apple Watch too.

I’ve always been told that too much thyroid meds cause high heart rate, but what you say makes sense.

I will add in the next dose. My endo actually told me to start on 2 doses a day but the advice here was to taper it slowly. I’ll add in dose 2 either Thursday or Friday as I’ve had some busy days at work and can’t risk any side effects that get in the way of work. Have to say though that my brain seems to be working (which it’s struggled to since I became hypo), I can focus and concentrate at work where previously I’d get bored and distracted easily. Also less irritated and frustrated by minor things and feel I have the energy to do things rather than feel I have to conserve my energy as I was dragging myself through life previously.

Don’t know how much of this is placebo or real, but we will know soon enough.

Re DIO 2, private lab have said 6 weeks so a bit more to go yet.

McPammy profile image
McPammy in reply toWired123

I know your feelings exactly when I was working full time. I too had brain fog and all sorts of things which I only now know it was being under medicated for 11 years. I’m confident you’ll pick up even more once you start your second dose. Your body is craving the T3 I feel. Every single thing in my body is working so much better now. Keep an eye on your vitamins too. Improved vitamins will help too.

Let’s hope the DIO2 shines the light in this.

Wired123 profile image
Wired123 in reply toMcPammy

Yes I’m hoping so, some days I was ok at work but most days it was like pushing the accelerator of the car but no gear has engaged and you go no where. I could never explain it and would try propping myself up with tonnes of sugar and sometimes caffeine but even that was limited in its effect... yet one tiny pill of T3 and I’m a different person.

Shocked that these private Harley Street Endos don’t prescribe it more. I’ve had so see several before one decided to give me a trial.

McPammy profile image
McPammy in reply toWired123

I’m so glad you’ve finally got T3 to try. I know exactly what you mean about your car reference. I use to say it was like driving with the accelerator pressed down and the hand brake on full... getting nowhere. I too had to see many NHS Drs that all failed me. It wasn’t until I went private to a brilliant Endo in Oxford and given a T3 trial that I got my life back. And a life I forgot I had 20 years ago!

I hope you get on well with a second dose.

Wired123 profile image
Wired123 in reply toMcPammy

It’s sad isn’t it, a tiny pill can change it all.

I have spent thousands of pounds on Harley Street (blood tests and appointment costs) with lazy and arrogant Endos including professors who are teaching the same rubbish to the student doctors.

Private doctors cannot even hide behind the NHS as they are at liberty in private practice to prescribe as they see fit, but are too up their own backsides to do so. It’s a shambles and would not be allowed in any other industry, no one would take such mediocrity from their lawyer or accountant or dentist.

Sorry rant over but these people are messing with peoples lives all the time. I’ve even had anti depressants suggested to me, glad I didn’t take them!

McPammy profile image
McPammy in reply toWired123

Oh my god. You’ve paid all that to Harley St Endocrinologists! I paid just £650 to be diagnosed privately and for the T3 medication. I wish I could have given you my private only Endocrinologists details. I was advised to see him from an administrator on here. Thank god for her advise. I honestly think I’d be dead, without being too dramatic, if I hadn’t of been diagnosed privately.

I hope you start to feel better very soon when you add in the extra dose at the weekend. There shouldn’t be any issues and you should feel better.

I get my brand from Bennewitz in Germany. They’ve been very professional indeed. I only pay £60 for x200 20mcg tablets. But now I’m concerned what Brexit will bring in obtaining them post 31 Dec 20. Bloody despise this government.

Wired123 profile image
Wired123 in reply toMcPammy

I’ve seen 10 different Endos and despite having classic symptoms only this one ever had a solution.

The rest have suggested I lose weight (easy to do when you’re tired and irritable), try anti depressants, or any other pointless suggestion.

They really ought to try a bit harder these Endos.

Luckily I finally found a good Endo through recommendation on here. Your Oxford one is also highly recommended but a bit of a distance from me, although now everything is via video call anyway.

My heart rate has finally come down to normal now, 12 hours after my T3 dose. Will be interesting to see if I get the surge in heart rate before bed.

Also thanks for the support on T3, I too hope adding the second dose will help me. Tomorrow is busy at work so I cannot risk it but Friday afternoon should be fine.

McPammy profile image
McPammy in reply toWired123

You sound sensible by waiting until Friday. I’m sure you’ll feel better by Sat/Sun.

can’t believe endocrinologists are so poor at their work.

Lora7again profile image
Lora7again

When I increased Thyroid S by 1/4 grain I would always get a couple of days of periods of a high heart rate and stomach pains. These would settle down after a few days and I know NDT is different to taking artifical T3 but it is the body getting used to having more T3 in its system. Just to add I get periods of high heart rate all the time if I am rushing about or feeling stressed and I blame my horrible disease. I usually try to breathe slowly though them and eventually they stop.

Wired123 profile image
Wired123 in reply toLora7again

Thanks, I wonder whether symptoms are similar or different on NDT vs T3-T4 combo.

pennyannie profile image
pennyannie in reply toWired123

I'm with Graves post RAI thyroid ablation which burns out the thyroid in situ rendering the patient hypothyroid. I was fine on Levothyroxine for several years before my thyroid finally gave up the ghost.

Having been refused both T3 / T4 and NDT on the NHS I decided to self medicate and thought I'd try them both and give myself an option.

I was on 125 mcg T4 :

I dropped 25 mcg T4 and added 6.25 T3 to 100 T4 : this worked very well : However I could not sustain the supply chain and the replacement T3, I purchased in bulk , gave me terrible headaches :

I switched back to T4 for 2 months at 125 mcg daily :

I then stopped T4 one day and started NDT the following slowly building up my dose from 1/2 grain to 1 + 1/2 grains in 1/4 grain increments weekly and I have now been on this dose for coming up to 2 years.

I prefer NDT as I feel less " turbo charged " and to me it's the difference between wearing shoes 2 sizes too small and slippers - as NDT feels softer on my body :

Also since my own thyroid has been burnt out I think to replace like with like makes more sense.

Wired123 profile image
Wired123 in reply topennyannie

Interesting, I’ll see how I fare on T3 before trying NDT.

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