Now on T3 only and struggling.

[zizi]

Hi Everyone

Haven't been on here for a while. Had a complete change of meds and struggling to get things right. To be honest I just couldn't even think about finding my way round the new site having tried a couple of times to put in questions and emails only to encounter problems. However, I'm persevering and gradually getting used to things on here again.

I had to stop taking Erfa because I had reached my optimum limit of 2.75 grains a day and this wasn't eliminating all of my symptoms and to increase further just made things worse. Previously I had responded well to Erfa.

Saw a new endo and she suggested lowering Erfa and introducing T3. This was fine for about two weeks and I felt really good and very calm. However, suddenly my fingers started seizing up and my arms aching terribly. It was so bad I couldn't use my hands. My right hand ring finger just dropped towards my palm and was painful to move back to position. I was freaked out!

Read up info about Erfa and T3 and left off both completely for seven days. All symptoms returned and felt terrible but I had to get the T4 out of my system which had built up. Endo suggested I go on T3 only increasing slowly up to 30mcg a day. Whilst on 25mcg a day my blood tests were as follows:

TSH 0.02 (0.3 - 5.5)

Free T3 8.4 (3.9-6.8)

Free T4 4.8 (12 - 22)

My Free T3 had been even higher on Erfa at over 9. I haven't managed to get a reply from Endo yet but she won't like the TSH suppressed still, but its not going to go up is it?

At present I'm on 45mcg T3 daily having to take 20mcg for my CT3M dose to get any positive reaction and three later doses just to stop the aches and me falling asleep. I seem to have no "buzz" and feel lethargic and tired again in the afternoon.

At present I'm getting support and encouragement from my endo but not definite answers as to what to do. I'm still worried about my hands since the difficulty with my fingers has coincided with taking T3. It does ease for a while after each dose but seizes up again later especially first thing and late evening.

Can anyone off any advice please especially if you have experience of T3 only?

Many thanks

[sporty333]

I'm going through the exact same process. I dropped Erfa 8 weeks ago for T3. I've certainly picked up more body aches but gained in other areas. I'm afraid you have to give it at least 8 weeks to clear the T4! Longer possibly.

Things seem to be getting better for me slowly. It's small and slow raises......3 weeks between any raises. I'm up to 50mg a day at present.

If your going down the T3 route you have to stick with it and give it at least 10 weeks to work.

Simon

[zizi in reply to sporty333]

Hi Simon

Thanks so much for your reply. I think maybe I have increased too quickly. As I said before I have had to take 20mcg for the early 5am dose just to be able to get up. I know from past experience with Erfa that without early dosing CT3M I'm no good at all for the rest of the day even if I take more doses so that has to stay. My Free T4 is low now below range so does this have to go completely? I don't really know what to expect from blood tests anymore now I have changed meds.

Thanks

[shaws in reply to zizi]

Your blood tests are consistent with someone on T3 alone. A low TSH and T4 (you are not taking any T4 (levo) and high T3. My TSH is 0.01. Excerpt from Dr Lowe:-

The problem I'm facing is that my TSH is very low and my T3 is high. On occasion, I feel that my heart is pounding or I feel anxious. Other than these symptoms every once in a while, I don't feel overstimulated. But because of these symptoms and the lab results, my doctor wants to take me totally off T3 and send me to a local endocrinologist.

web.archive.org/web/2010112...

Dr Lowe also gives an explanation of why he tells his patients to take T3 as one dose a day:-

January 30, 2002

Question: I’m a physician who has just begun using T3 in my practice. One thing I’m concerned about is the short half-life of T3. Shouldn’t patients divide their daily dose up and take part of it at least twice each day, or instead use sustained-release T3? It seems that this would allow the effects of T3 to continue through the day rather than stop midway or in the evening?

Dr. Lowe:

1. The short time that T3 is in the circulating blood isn’t the limit of its beneficial effects on the body. When T3 binds to T3-receptors on genes, the binding regulates the transcription of mRNAs, and the mRNAs are later translated into proteins.

The transcription and translation initiated by the binding of T3 to T3-receptors occur in waves, and these waves far outlast the T3 that started them at the chromosomes. Moreover, the newly synthesized proteins themselves far outlast the transcription and translation. As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days. The "rocky road" ( August 7, 2001

2. Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against

[zizi in reply to shaws]

Hi Shaws

Thanks for the reply and very interesting reading. Also thanks for the reassurance about the blood tests. I'm going to reduce my dosing for a few days and take things a bit more slowly. Erfa was good for me for a long time dosing this way and my endo who was recommended from this site has suggested this method, but to be fair she is open to suggestions if other methods work better. My brain is actually much better with no real anxiety or panic feelings and I don't feel so irritable so that is good. It's just the aching especially problems with my hands and I do need to sleep in the afternoon at present so got to get that sorted.

Many thanks

[sporty333 in reply to zizi]

Hi there

Don't worry, I did exactly that too: raised too much too soon. Get back to the dose where you felt you could handle it ok then start again.

I have been informed to raise by say 10mg every 3 weeks until the T4 and or reverse T3 has cleared.

As for blood tests..... Waste of time and forget them. Paul Robinson and Sheila on TPA have told me they are a waste of time on T3. Far too unstable and unreliable. It seems to be about going on how you feel with your medication.

Carry on with the ct3m though if its helping.

Cheers

Simon

[zizi in reply to sporty333]

Hi Simon

Thanks for the reassurance. I have to admit to worrying about this because I still haven't received any response from my endo (emailed her on Monday) and it is difficult to know which way to go. Can I ask what amount you started on? My endo said 30mcg - 35mcg during my last appointment. I was on 20mcg at the time and it wasn't working well so she said to get my blood tests done and to increase. To be fair to her she did say slowly. It was my own silly fault that I increased the early CT3M dose too much thinking I needed it for my adrenals early, but clearly I don't need that much. I should have known having taken Erfa for 18mths that I have to increase slowly.

Do you think it best to just decrease or do I need to leave T3 off before starting again as I had to do with Erfa which had pooled in my body? I have been reading up on Paul's site and SSTM, but still not sure how best to do this. Many people seem to take a lot of notice of pulse and temperature whilst taking T3. Do you go by this or just by how you feel generally?

Really appreciate your help.

Thanks

[sporty333 in reply to zizi]

Hi

Yeah my doctor-dr Myhill- suggested i go straight onto 60mg daily as a straight swap of my Erfa dose to T3. That's just too much too soon though, as it turned out anyway. I was just told to slip back to the dose i felt better on......so i went back to 30 a day and started over again. I then tried increasing by 10 every 3 days. Again, too much too soon. Then Sheila and Paul contacted me and suggested increasing every 2 to 3 weeks.......and that's what I'm doing presently. It appears to have worked better,

They also categorically told me not to bother with blood tests and increasing on those results. Total waste of time apparently. You go on how you feel.

Yes go on your temps and pulse though. Look out for signs of over stimulation there.

As for ct3m dose, i guess you'll have to play around with that dosing.

So, get on a dose you're semi ok on, then increase by 5 to 10 every 2 or 3 weeks :0)

Simon

[Hidden]

As a T3 user, I found that I needed to be ultra cautious. Tiny doses and actually stayed at them for around 2 weeks before increasing.

Your first dose sounds high, did you take that amount straight away? Also, how are your adrenals?

[mstp in reply to Hidden]

I am interested in your final question. I am on T3 and nutri adrenal and, after much trial and error, I have now realised I was taking NA when I may not have needed it and, definitely, too high a dose.

I'm taking my blood pressure now and trying to be guided by what happens when i stand up and take it and I am finding that it seems to be different every day. This morning I didn't need to take any NA at all because my standing BP was always higher showing that my adrenals weren't fatigued. Yesterday they were fatigued though. Have you had this problem. Also, some days I have noticed that my diastolic pressure is lower on standing but my systolic pressure is slightly higher or the same as it was. Does this tell you anything? I never know what to do when it does that.

[zizi in reply to mstp]

Hi I used to take Nutri Adrenal many years ago and it was good for me, but as I have got older and other things have affected my life this just wasn't working anymore. Since trying Paul Robinsons CT3M early dosing this has really helped and it did with Erfa. Trouble was Erfa was ok overall for a while but eventually I was over treated on it and hence the change to T3. I'm going to take advice from Simon who replied earlier and keep my doses smaller and lower the first early dose as advised by Cinnamon girl. I think I increased this too quickly wanting a response rather than waiting a few days for my adrenals to adjust. I am a firm believer in Paul's CT3M dosing to help adrenals and he was a great help to me when I met him earlier in the year. This method has helped far better in recent years than Nutri Adrenal. Have you tried this method? I have only every gone by the Adrenal saliva testing in past years which was always low cortisol first thing in the mornings and this is why I decided on Paul's method and I know from experience that providing one has the right dose and timing it really can work.

[Hidden in reply to mstp]

Not everyone gets on with Nutri Adrenal, I know I didn't. Perhaps just taking one daily and see how you get on? Sorry but don't know anything about blood pressure as I don't take mine.

Do hope you find some answers.

[zizi in reply to Hidden]

Hi

Thanks for getting back to me. I wrote a reply to you earlier and just noticed it had not gone through. Sorry. I too think my first dose is too high. I increased thinking that because I had no response from lower doses I should increase, but don't think I should. I do the CT3M because of adrenal fatigue and it has always been good. On Erfa it really worked but eventually Erfa was too much and I had to come of it for a while whilst the T4 went down. Still hopeful T3 is going to be right for me as some symptoms have much improved. Its just a matter of getting the right dose and increasing at the right rate. I think smaller doses and give them time for my body to adjust is the way to go.

Thanks

[Hidden in reply to zizi]

Good luck with it zizi.

[zizi]

Hi

First I want to thank everyone today for replying to my question and to apologise for having not responded earlier. I am not receiving notifications by email that any replies have been posted. I have check my account and the boxes requesting this have been ticked, but nothing. I am sorry and will try to get this checked out. I know how frustrating it can be to offer an answer to a question and then get no response back. I really appreciate all of your help. Thanks.

[zizi]

What is happening on this site? Cinnamon Girl I have replied to you twice. The first response just disappeared and the second has positioned itself in the wrong place. So sorry!!!

[buzz123]

Hi,

just came across your question which interests me as I am trying to just use t3, I was only on t4 regime which didn't really suit, that was for fifteen years struggling to cope. however long story short, I saw Dr Peatfield and he recommended I use adrenal support and nature thyroid with t3, however have had hyper symptoms so am just taking t3 now, but am struggling with raising the dose as it gives me hyper symptoms only taking 15mcg, I have taken 10mcg for four weeks seemed to be ok but when raising go back to bad symptoms. very confused> I will be speaking to Dr Peatfield this week so hope he can help but interested in other peoples opinions.

[tegz in reply to buzz123]

Some people get along on 50mcg T4 -and that's about the equivalent of 10mcg T3.

A low dose -but early in. Have you heard of Wilsons Temperature Sydrome- uses split low dose T3.

Any new blood tests yet?

PS: Posting on a new thread would be helpful. Your seeing Dr D-P warrants that

New Posts above.

[wakeham]

Hi zizi. Sorry that your not feeling well,I have been on T3 50mcg for 2years and I must say that it seems to work for me. I like you had a problem to get started, but I thought that I would say that I found Paul Robinson's Book on Recovering with T3 very helpful, perhaps it would do the same for you.Good luck.

Regards wakeham.