A moonlit walk and great excitement!: After three... - Thyroid UK

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A moonlit walk and great excitement!

Joeyis7 profile image
16 Replies

After three years almost bed ridden with crippling fatigue and on an ever increasing dose of levothyroxine, 300 mcg at the last count, I have found a miracle in T3. ( bought from an online pharmacy myself) I cut my levothyroxine and substituted some T3, as I've heard others do, eg Galatea. Three days ago I went for a lone walk in the moonlight, my first for three years! Hurray! All troubles over!

But then the big let down: I have palpitations to a frightening level.

I could adjust my doses of everything, and have started by halving my HC, my Swansons Adrenal pill, my NAX. I was on 30 HC, 2 Swansons and 3 NAX. I've halved these and feel tired today. My palpitations have calmed but my energy has gone!

I did one day on T3 entirely and was great.....except for the palps and pulse of 112.

I could make T3 work for me, so am optimistic.

Who thinks I should try to clear RT3 ( which is through the roof) on T3 only for a couple of months?

Who thinks I should take a T3 dose early morning as Paul Robinson describes?

Who thinks I should mix levo and T3 as many of you do?

I'm choosing to view my T3 experiment as a great hope for the future, so I would welcome your experiences.

Thank you so much!

Joeyis7

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shaws profile image
shawsAdministrator

NAX gave me palpitations. Levo also as well. T3 calmed my whole system. I improved when T3 was added to T4 but am now healthy/well on T3 only. One daily dose when I get up. Vitamins/minerals at lunchtime.

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

(read the end of the r/hand column in the above link).

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

Joeyis7 profile image
Joeyis7 in reply to shaws

Qaqqthank you, Shaws. What dose of T3, if you don't mind my asking?

I was on 300 levo so that would equal about 78 T3. A bit much to swap suddenly?

I've actually been doing less T3 than the standard swapping calculation, reckoning that most of the levo was pooling in the blood unused, so in a way I was never really 'on' 300 mcg levo.

The link you give is very good.

Thank you.

Joeyis7

shaws profile image
shawsAdministrator in reply to Joeyis7

I take 37.5mcg of T3. I've made the same mistake as others might have as well, taking too much NDT/T3. All of a sudden things seem to 'click' together and you feel well again. I don't know of 'pooling' re levo.

You can do a straight switchover, i.e. either levo to NDT, NDT to T3 or levo to T3. Some prefer to be a little cautious and take a slightly smaller dose initially.

ellemaereading profile image
ellemaereading

Hi not sure why you have halfed your hydro cortisone t3 puts pressure on adrenal glands and if you have adrenal fatigue adding t3 and reducing hc is a receipe for disaster in my experience, and I learnt the hard way. I could only tolerate 5mg of t3 when I first started without awful anxiety and palps I had to get my hc upto a therapeutic dose which for me was 40mg a day which is high but I needed it in order to work my t3 up I now tolerate 75mg a days but still have issues as my iron vit d and vit b12 fluctuate and can all cause issues have you checked all of these ? Your ferritin level needs to be around 70 to be effective for t3 up take and usage.

Joeyis7 profile image
Joeyis7 in reply to ellemaereading

Thank you so much. I halved my HC today because yesterday I had too much energy and only needed my first 10 mg dose of HC. Everything was pulsing and pounding and it would have been daft to take my other HC on top of that overdose feeling. I normally take 30 HC a day, but the last few days, the HC, The 6 NAX, the 2 Swansons adrenal capsules, the 6 Nutrition Thyroid pills, the 12.5 T3 on top of 200/300 mcg levothyroxine which must be still swilling about in my system, we're giving me a choking sensation of overdose.

Today on only 1 NAX and 1 Swansons that full feeling has gone.

I'm not yet into 3 weeks of T3 and nothing is established yet.

Yesterday I pranced around the shopping centre on only 10 HC. I have to get rid of the overdose feeling but now I'm going out I will take another 10 HC.

I know the golden rule is to change only thing at a time and I'm daft to break it! It was just that scary pounding heart, I had to get rid of it.

Joeyis7

PS yes my vits are top of range in Blue Horizon tests.

ellemaereading profile image
ellemaereading

I wouldn't mess with hc like that you can cause all sorts of problems for your self. Keep that dose steady it will have been the t3 not the hc causing the issue. When you need to alter dosage of hc it needs slow small reductions to prevent a crash. I personally would re establish my hc dosage checking your pulse and temps x 3 a day when its stable add 5mg of t3 and hold at this for several days checking vitals and when you know your body is accepting it start to titrate up slowly to a therapeutic dose. You will get blips to start off especially if your body has been starved of t3 which is why it needs to be slow and steady to give your body time to adjust 😊

Clutter profile image
Clutter

Joeyis7, You're overmedicated on 300mcg because FT4 is elevated and it's probably that causing palpitations. I had FT4 >32 for 7 months and thought my heart would explode.

rT3 is high too, probably because the T4 is floating around unconverted. 225-250mcg is probably sufficient to have FT4 top of range but FT3 will almost certainly plummet. I think you'll do better on T4+T3 combination, say 200mcg T4 + 20mcg T3 (equivalent to 260mcg T4).

If, after 4-6 weeks, you haven't noticed improvement, you may need to spend 3-4 months T3 only clearing the high rT3. Paul Robinson has said this can take up to 14 weeks. Some people take supraphysiological T3 doses which indicates rT3 is blocking receptors and preventing them becoming hyper. When the rT3 clears it will be sudden and it can be necessary to reduce T3 dose by as much as two thirds. The lower the dose of T3 you take, or even stopping meds completely for 4 weeks, the faster rT3 will clear.

Adding T3 to T4 improved my brain fog and cognition but made no improvement to physical symptoms. I assumed they were due to a build up of T4 (hadn't heard of rT3 then) as I'd previously improved when taken off T4 and felt worse when resuming it. I stopped T4 and tried 60mcg-120mcg T3. I settled at 60mcg which I'd been prescribed after thyroidectomy as higher doses made no improvement, nor did they make me hyper. I supposed that 8 weeks would be sufficient to clear T4, and disappointed it hadn't worked, decided to stop T3 too. By the end of the second week off T3 some symptoms improved. By the end of the 3rd week most symptoms had resolved. 4 weeks off meds TSH was 107 so I resumed 100mcg T4. Within 24 hours palpitations, breathlessness and tremors were back, and were worse next day. The 3rd day I added 20mcg T3 which calmed the palpitations and tremors.

In hindsight it seems I didn't tolerate T4 only and had a build up too. I would have spared myself becoming profoundly hypo if I'd stuck with T3 another 6-8 weeks but I don't regret it as the very debilitating symptoms and pain cleared quicker and I was well enough to attend and enjoy Christmas 2013 with my family. I've been fine on T4+T3 since, currently 75/100mcg T4 plus 30mcg T3.

Ferritin is high which indicates over supplementation of iron, or if you aren't supplementing, inflammation somewhere. I also had high ferritin due to the pain I had until I cleared the T4.

VitD is good but you may want to maintain level with 2,500iu D3 until April. Take vitD 4 hours away from thyroid meds.

______________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Joeyis7 profile image
Joeyis7 in reply to Clutter

Thank you so much. This is rich information which I will spend time pondering. Much valued.

Joeyos7

rosetrees profile image
rosetrees

My two penny worth. I'm assuming those results were taken before you added in T3? Your FT4 is way too high, but your FT3 was good. Looks as if you have a conversion problem. Your initial problem will be that adding T3 only will elevate your FT3 level. T4 has a long half life in the body (I think around 2 weeks) so your body will be converting at it's normal rate.

You probably need to add in T3 slowly whilst reducing your T4 to give your body time to adjust and the excess T4 time to clear.

Joeyis7 profile image
Joeyis7 in reply to rosetrees

Thank you, Carole. I'm adding in T3 slowly, yes, and those Blue Horizon results were from 6 months ago. No pure T3 on its own then?

I've followed your posts on both forums by the way. They make sense?

Regards,

Joeyis7

I got horrible migraines and fast heart rate and palps when I first took t3 - I didn't ease into it at all and I wasn't eating enough carbs (my liver obvs couldn't cope) and I wasn't taking b vits. Lack of b1 particularly (b1 not b12) can let t3 give you heart problems. I recommend paul's method.

Joeyis7 profile image
Joeyis7 in reply to

Thank you,nSuperparrot. I will buy a good B Complex, as I've given up the NAX, which was loaded with Bs.

Joeyis7

humanbean profile image
humanbean

I take T3 only. I found that as I increased my dose I frequently had to change my dosing pattern, number of doses, and size of doses. Sometimes I had to drop back a dose when an increase didn't work, and then tried again a week or two later. But once I felt I was close to my ideal dose I left it like that for a few weeks, then started shifting more and more of my dose to the morning. I would have preferred it if I could have started with morning dosing and just increased the single dose as necessary, but it just didn't work for me. I had to split dose for several months because it was the only way I tolerated it to begin with.

The only thing I can really suggest is that you experiment to find what dosing pattern works for you. And don't assume that things will stay static in the first few months, things can and probably will change. I think, for me, the problem was cortisol related and that as my cortisol output altered I had to alter my dosing pattern (my cortisol is or was high - haven't tested it recently though).

Recently I haven't had the heart palpitations and fast heart rate that I was getting in the early days, or before I was treated. I'm also much more resistant to falling apart at the seams if I am late with a dose. My heart and my physical health both feel so much more robust after nearly a year on T3. Which is weird really... I saw a cardiologist a couple of years ago who assured me in all seriousness that T3 was bad for the heart. :D

Joeyis7 profile image
Joeyis7 in reply to humanbean

Thank you, Humanbean. I will just have to persevere similarly, but the accounts on this forum are encouraging. All the good books say T3 is GOOD for the heart.

My palpitations were caused by NAX, which I've now dropped, and they've GONE!

Joeyis7

humanbean profile image
humanbean in reply to Joeyis7

Like you, I'm absolutely convinced that T3 is good for the heart. I thought the cardiologist I saw was a danger to thyroid patients with heart problems.

circ.ahajournals.org/conten...

Joeyis7 profile image
Joeyis7

Thank you, Nicokas. I'm on Perrigo Liothyronine and my palps have gone now I've stopped NAX. My starter dose of T3 is working and suddenly I felt overdosed on everything, NAX included.

I am doing divided doses too.

Joeyis7

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