Do I need more T3 on T3 only?: Dear all, You... - Thyroid UK

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Do I need more T3 on T3 only?

Susieibbo301 profile image
17 Replies

Dear all,

You have all been very hel pful - I never cease to be amazed as to how supportive this forum is.

I am wondering if you have any thoughts about my dose of T3. I am now on 62.50 mcg T3 (Thybon Henning) private prescription from my private Thyroid doctor. I take three doses, 6 am 22.50mcg, 11am 20 mcg, 3 pm, 20 mcg, having increased from 60mcg.

I still have constipation if I don't keep fibre high, am not losing weight, am very tired and weak in the morning, (need a coffee hit) have some palpitations in the early point of sleeping, still a slight tremor. My heart rate is on average 56 - 100/104 (occasional spikes). Average HR is about 77. My body temperature is 35.6 - 37.1 with the occasional low of 35.4. (Smart watch) I am wondering if I should increase the morning dose and then reduce the 3pm dose?

😍Am following Paul Robinson's protocol but still find it difficult to assess where I am. Am I under medicated or over medicated? I try to follow the signs and symptoms but frankly it still baffles me at times. My blood test was as you would expect with T3 only, ie. above range T3, low T4 and suppressed TSH.

Had a low cortisol which was largely corrected by T3 only. Any suggestions please. By the way, a think a thyroid helpline is a brilliant idea.

Susieibbo😀

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17 Replies
HealthStarDust profile image
HealthStarDust

I also think a Thyroid helping is a great idea!

waveylines profile image
waveylines

Hello Susieibbo I'm afraid I can't really help you as I'm on NDT. Hopefully Dippydame or Shaws might pop in as they're both on T3 only. I will say though the tremor sounds like a sign of over treatment to me unless you are B12 deficient. What's ure temp. like first thing in the morning before rising?

susieibbo1 profile image
susieibbo1 in reply to waveylines

Dear Waveylines

Thankyou for your reply. My body temp first thing is on average 36.1 - 36.5. My active B12 is 80 so on the lower side.

T3 only is tricky to get the dosing right. Trial and error but I am also confused by symptoms. I remember a cardiologist who was testing me for AF saying that with hypothyroidism, you can have both a low pulse rate or a fast pulse rate ie palpitations! How confusing is that. Xx

waveylines profile image
waveylines in reply to susieibbo1

Hello Susie, I see Dippydame has stepped in - great. Yes you can have palpitation either way under or over so not a great guide other than telling you somethings not right. Temp first thing in the morning before rising helped me. I'm on NDT but I used to keep a little log of temp first thing, pulse rate, Thyroid hormone doses protocol for the day, vits mineral. And most importantly how I felt signs symptoms. That helped me to look back for patterns over time.

T3 only is different.... You get quicker responses than NDT.

Cellular means in your cells. The level can be very different to what is in the blood stream to what's in the cells

. , when your resistant at cellular level it means the difference can be large between what's in the cells (no way of measuring) and what's in the blood stream. (, what blood tests show). Hence Dippydames comment about high dosing of T3 to force some T3 into the cells. Shaws I believe has to do the same thing.

I'll leave you in their capable and knowledgeble hands. 😊😊

susieibbo1 profile image
susieibbo1 in reply to waveylines

Wow - how kind Waveylines. So helpful. Xx

DippyDame profile image
DippyDame

I need 100mcg T3-only daily which I take in a single dose at bedtime.....it took me a very long time to reach this point because I had to read and learn from a point of complete ignorance about T3! It's all in my bio.

Splitting didn't work for me.

I tried various protocols before the above proved best for me....I self medicate so have only myself to answer to!

It is basically trial and error

The greater the resistance the more T3 may be required

I followed the protocol of the late Dr John Lowe, a T3 expert who himself took over 100mcg T3-only in a single dose, in the early hours of the morning

A single (bedtime) dose, if it works for one, is much easier than clock watching all day!

I have a form of thyroid hormone resistance and to overcome this I need the high dose to help "push" some of that dose into the cells where it becomes active. What remains in the serum will be metabolised and excreted

As you will know serum T3 must reach the nuclei of the cells, attach to T3 receptors and become active before it fulfills it's functions.

Consequently, for good health, we need to provide the cells with T3 by way of an adequate and constant supply.

It sounds as if your split dosing is not achieving this.

Your symptoms suggest cellular, rather than glandular hypothyroidism

When taking a high dose of T3 we can no longer rely on blood tests to guide dosing....we have to rely on clinical evaluation/ signs and symptoms

In your shoes I would maintain the same dose but gradually combine it into a single dose. This will help push theT3 into the cells where it is required.

You won't know if you don't try it!

Hold that dose for 3 or 4 weeks and see how you feel....you may feel be a bit up and down but persevere. It takes patience.

You can then begin to assess any symptom changes and whether you might need to raise or reduce your dose!

Look out for racing heart rate, and hand tremors.

My RHR is 65bpm.

Be aware that as things stand, an endo might conclude that your current dose isn't working....and you end up without a resolution or even without T3

Listen to your body....it soon tells you if something is wrong.

Having ranted on... now, in answer to your question, I am wondering if I should increase the morning dose and then reduce the 3pm dose? The decision is yours but intuitively you suspect you need to change your dosing protocol....which is how I would procede.

Good luck....we're all here to help. Just ask!

This might help

thyroidpatients.ca/2019/08/...

Susieibbo301 profile image
Susieibbo301 in reply to DippyDame

Your symptoms suggest cellular, rather than glandular hypothyroidism

Dear DippyDame, Could you explain the difference between cellular and glandular hypothyroidism.

Instinctively, yes I think I need to change my dosing so I will just have to see - trial and error. Thank you so much for your help. Susieibbo

DippyDame profile image
DippyDame in reply to Susieibbo301

Glandular hypothyroidism....the thyroid doesn't produce enough hormone

Cellular hypothyroidism....the hormone in the serum isn't adequately reaching the nuclei of the cells to alleviate symptoms

I'm not sure how the NHS view the latter...but if all other possibilities have been explored, including optimising the essential nutrients, and symptoms remain, it needs to be considered.

I rather suspect that the low cohort with this condition are not given much understanding....Over 20 years ago I was originally diagnosed as hypothyroid but when years later200mcg T4 left me even worse I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and IBS. I knew I had to start digging while I still could, because I was convinced there must be an answer outwith the GP's surgery!

The only endo I saw said he couldn't interpret my diagnostic labs!

I told my GP that I was going to find the answer and was advised in a very patronising manner not to upset myself and just to follow GP's advice. Had I done that I wouldn't be here now ranting about T3. I get the impression that some medics think we can't possibly have the grey matter to do a bit of research unless we have a medical degree!!

So, I started to read, self diagnosed and now dose successfully with high dose T3.

I discovered that myT4/ T3 conversion was rubbish so expermented with various dozing protocols until I eventually concluded that I have a form of Thyroid Hormone Resistance.... so T4 had to go. I then had to find my therapeutic T3 dose.

It was a process of trial and error and the elimination of different possibilities along the way

My RTH may or may not be genetic but I doubt the answer would change anything now

A long winded response to your query!

You can do this!

This might help -

rejuvagencenter.com/thyroid...

susieibbo1 profile image
susieibbo1 in reply to DippyDame

Bless you for your encouragement! It means a lot!! I get worried by the gps!! Xxx

charley123 profile image
charley123 in reply to DippyDame

@ DippyDame sent you pm.

Which protocols you did? I only know willson but never did..

helvella profile image
helvellaAdministratorThyroid UK in reply to charley123

If you are trying to "mention" or call out, you need to type the @ and the member's name without a space.

AND when the member's name appears in a popup, click on that. And check it has gone blue. Otherwise, it is just characters and doesn't alert the member.

DippyDame

susieibbo1 profile image
susieibbo1 in reply to helvella

Sorry somewhat confused as I got this today?

helvella profile image
helvellaAdministratorThyroid UK in reply to susieibbo1

It was a specific reply to charley123 who seemed to have made a mistake in calling out.

Nothing to do with your original post but intended to ensure DippyDame got alerted (as intended) and, at the same time, to explain how to call out.

DippyDame profile image
DippyDame in reply to charley123

I was referring to dosing protocols....different doses of combined T4 and T3 treatment....and different timings for taking the dose

I've never tried Wilson's T3 protocol to reset basal temperature....just not convinced about it.

Jaydee1507 profile image
Jaydee1507Administrator

Just checking if you have optimised your key vitamins ferritin, folate, B12 & D3?

We need OPTIMAL levels of these vitamins for our thyroid hormone to work well.

What are you supplementing with?

What are your latest results of ferritin, folate, B12 & D3?

susieibbo1 profile image
susieibbo1 in reply to Jaydee1507

Dear Jaydee,

My latest ferritin Oct. Medichecks is 258 (30 - 650)

Folate is 29.1 (8.83 -60.8)

B12 Active 82.8 (37.5-188)

Vitamin D 102 (50-250)

I supplement with D3 4,000 in

Better you B12 spray (just started again)

Thorne Basic B complex

How does that look?

Susie

Jaydee1507 profile image
Jaydee1507Administrator in reply to susieibbo1

That all looks OK, especially adding back the B12 spray. Looks like you need it. :)

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