On combined t3/t4. FT4 and FT3 at bottom or out of range but increasing the dosage is barely raising the blood test results, TSH suppressed

[Reefseeker]

I am at a loss regarding my blood test results over the past 18 months for FT4 and FT3, plus TSH. I wonder if anyone has insight, as I'm concerned that while my FT4 and FT3 results remain very low, the endocrinologist is now suggesting reducing my dosage as the TSH is suppressed. I feel very tired all the time with only a minor improvement in my symptoms.

For context, I never really improved on T4 only treatment, TSH always high, T4 dose very high etc. I persevered for 12 or so year, but really struggled so moved over to NDT for around 7 years, starting out with Dr P then managing it myself through blood tests etc.

In January 2021, I approached my GP asking to return to T4 only, telling myself I would probably be fine. My GP wouldn't treat me until I saw endocrinology in April 2021, but agreed to a minimum T4 dose while I waited. Unfortunately, when I first approached the GP, I took my NDT dose just before my blood tests in January 2021 yielding a high FT3 result (even though FT4 was in range). For the rest, once I was on combined treatment (AFTER April 2021), I took my last dose of T3 late afternoon on the day before, last dose of T4 the morning before.

Here are the blood test results since, under treatment from at first the GP (they gave me a minimal T4 dose until I saw the endo in April 21), then endocrinology:

Blood test results

Measure: TSH FT4 FT3

Normal range: (0.27-4.2) (10.8-25.5) (3.1-6.8)

January 21 ‘Suppressed’ 21 15 (NDT taken one hour prior, oops)

April 21 0.04 8.9 3.3

August 21 0.02 15.5 4

February 22 0.05 10.2 2.6

August 22 0.02 11.2 3.4

Treatment

Low dose of T4 from GP until blood tests in April 2021.

The next figures are what the endos prescribed against the blood tests they were acting on, starting with my first clinic date with endocrinology:

Date: 20 April 2021

Results: (shown above) TSH 0.04, FT4 8.9, FT3 3.3

Endo prescribed: T3 10mcg, T4 125mcg daily

Date: 13 August 2021

Results: (shown above) TSH 0.02, FT4 15.5, FT3.4

Endo prescribed: Increase T3 dose to T3 25mcg spread throughout the day, maintain T4 125mcg daily

Date: 22 February 2022

Results: (shown above) TSH 0.05, FT4 10.2, FT3 2.6

Endo prescribed: Increase T3 dose to T3 30mcg spread throughout the day, increase T4 dose to 150mcg daily

Date: 5 September 2022

Results: (shown above) TSH 0.02, FT4 11.2, FT3 3.4

Endo prescribed: Maintain dose at T3 30mcg spread throughout the day, T4 150mcg daily

I am concerned on two counts. First, my most recent message from the endo is that because the TSH is suppressed, we will need to consider reducing my T4 dose at our next consultation at the end of December. I can't make any sense out of that - between February and September 2022, with a 20% increase in T3 dosage and, I think a 15% increase in T4 dosage (my maths is really bad), my FT4 has dropped while my FT3 has increased only by 0.8. The small drop in TSH surely wouldn't be grounds to decrease thyroxine in this situation? My second concern is that between August 2021 and September 2022, my T3 dose was more than doubled and my thyroxine increased by around 15%, yet TSH and FT3 remain identical while my FT4 has dropped by 4.3. How can this be? This is an all things being equal situation - I take my doses at the same times in the same way day in day out, following all proper food and drink protocols - yet my results are rigidly staying put while my dosage is being increased. Is it perhaps absorption/conversion issues? Is NDT more easily absorbed or converted?

Honestly, I just wish I could stay on NDT. The impact his has had on my quality of life and the chaos that has been unleased as a result, leaving my job, struggling to care for my son and so on, I'm not sure it's been worth it.

[Aurealis]

“we will need to consider reducing my T4 dose at our next consultation at the end of December. “ Endo only said ‘consider’

Your contribution to the ‘consider’ is “I can't make any sense out of that - between February and September 2022, with a 20% increase in T3 dosage and, I think a 15% increase in T4 dosage (my maths is really bad), my FT4 has dropped while my FT3 has increased only by 0.8. The small drop in TSH surely wouldn't be grounds to decrease thyroxine in this situation? My second concern is that between August 2021 and September 2022, my T3 dose was more than doubled and my thyroxine increased by around 15%, yet TSH and FT3 remain identical while my FT4 has dropped by 4.3. How can this be? This is an all things being equal situation - I take my doses at the same times in the same way day in day out, following all proper food and drink protocols - yet my results are rigidly staying put while my dosage is being increased. Is it perhaps absorption/conversion issues? Is NDT more easily absorbed or converted? Honestly, I just wish I could stay on NDT. The impact his has had on my quality of life and the chaos that has been unleased as a result, leaving my job, struggling to care for my son and so on, I'm not sure it's been worth it.”

Good luck

[Reefseeker in reply to Aurealis]

Brilliant! I'll learn it off by heart I think what worried me more is the GP messaging me this afternoon enquiring if the dose has been reduced yet.... Sigh...

[Aurealis in reply to Reefseeker]

probably only so they can reduce the prescribed amount?

[Reefseeker in reply to Aurealis]

They did that previously, tried to deny it, I 'made my case' that I'm under the endocrinology lot, not GP for dosing. They 'reviewed' my message and decided to restore the original dose.

[Aurealis]

👍 it’s so exhausting keep going round this wheel of mistreatment

[terebol]

It is a shame that the physician puts so much emphasis on TSH . I am on NDT & TSH is naturally suppressed. .01 (range .36-3.74) I believe T4 therapy, also, keeps tsh levels low. My endo & gp do not even give TSH a thought. They look @labs & ask how I feel.

[Reefseeker in reply to terebol]

Completely agree. I've had 3 different endos in 18 months. Only one seems unconcerned by suppressed TSH, the others plus my GP make a beeline for it. As with you, when i was on ndt, my TSH was completely suppressed. It's gone up a bit on T3/T4. I just wish more common sense was in use, like your team seem to have.

[kiefer]

Is thyroid the only medication you're taking? How do you store your thyroid meds? Who is the manufacturer?

If you're always taking them on an empty stomach 1 hour prior to meals and the blood testing is done at the same interval, e.g., 15 to 24 hours after the last dose, then perhaps the meds are degrading, or were not stored in the pharmacy properly prior to your receiving them. Certain drugs can speed up the metabolism while others can suppress the TSH.

[Reefseeker in reply to kiefer]

Thank you Kiefer for kindly responding. Yes, I take levothyroxine 150mcg in the morning and liothyronine 30mcg spread throughout the day, higher dose in the morning and tapering off. This is because I was having big crashes once the T3 wore off when dosed at a lower level. It is the only meds I am taking; I tend to forget to take vitamins and if I do leave 4 hours between vits and dosing (which is why I often don't take vitamins!). Yes, all protocols observed, empty stomach, one hour etc. Blood tests first of the day at 8.20am at Kingston Hospital (who then lose them half of the time for reasons I don't understand). No T4 in the 24 hours prior, no T3 in the 12-14 hours prior. Meds stored in a drawer in a cool room (especially during the hot summer) where I have always stored them for the past 15 years. The GP has told me I cannot be guaranteed same T4 manufacturer, so I don't check which I get, although I take photos of each one when I pick them up (I'm a bit OCD on record keeping and it's saved me on more than one occasion with the GP particularly). T3 is from Kingston Hospital pharmacy; they make it up there and deliver it next day to my local Boots - I have to phone to request every 1-3 months; I'm not sure why the quantity varies. I've recently had a bad reaction to the Roma T3 which the hospital has just changed to (it's cheaper), due to the gelatin capsule kicking off my beef intolerance and huge headaches, so they are replacing it today with a non-capsule version.

Sorry for all the information! And thank you!

Angela

[pennyannie]

Hello Angela :

It seems obviously just quickly reading your post that you wish to go back on NDT - so why don't you ?

Have you asked this endo if you can try another option, like Armour o Efra, the 2 brands offered on the NHS ?

If all else fails you can do it for yourself as this trial of T3 and T4 clearly isn't working for you.

[Reefseeker in reply to pennyannie]

Honestly, I have been so bullied by my GP since I came forward explaining I had taken NDT for 7 years that it's made me very anxious. They refused to sign my medical exemption for not following 'approved' treatment, have lied, have talked absolute nonsense clearly completely uneducated in all of this and have overruled the endocrinologist by reducing my meds on the basis of suppressed TSH. The NHS app has been my friend as I have screenshotted stuff they have claimed never happened.

I've decided to ask in writing to have a trial of Armour or Erfa, both of which I was on previously when I started out on it under Dr P - the supply chain issues have meant a couple of other manufacturers on the way. I was unaware Armour and Erfa are approved on the NHS, so I will ask for those specifically, citing the 18 months of low T4/T3 compared with when I was on the same sort of dose of NDT and the poor quality of life I have had to endure since coming forward.

Thank you so much for your support, I really appreciate it. I'm feeling so down about all of this, so it's such a help to get your input.

[pennyannie in reply to Reefseeker]

Well, I think the endo will need to initiate a trial of the NHS Armour or Efra and then after the 3 month trial proves successful and the endo approves your need for NDT your surgery need to agree to ' pick up the tab ' :

If this were 20 odd years ago, both T3 and NDT were in your doctor's box to tricks, and simply able to be prescribed through your doctor if it was felt T4 monotherapy didn't totally restore health and well being.

My surgery refused me NDT in around 2014 - I then became more ill, and then spent a couple of years from 2016 going around various outpatient departments getting nowhere and was eventually refused T3 in early 2018 by the only endocrinologist I'd ever seen ( who was a diabetes specialist ) since hospital discharge after RAI thyroid ablation for Graves in 2005.

In 2018 I started self medicating and though the T3/T4 combo worked, in that my brain became engaged again, I chose to stay on NDT as it feels softer on my body :

I advised my surgery of my decision and said I'd comply with the yearly thyroid function test providing it was a TSH, T3 and T4 reading and if not I'd supply my own private blood test for my medical records and have never heard a word.

18 months later my T4 prescription disappeared from my script which contains 2 lines, eye drops and pessaries for womb atrophy and presume very soon I'll be buying these as well.

[Reefseeker in reply to pennyannie]

Thank you so much for this guidance, I will definitely follow your suggestions. These are the types of stories that just make me so... well... angry is the word. Why is there such beligerence? I sort of understand that the medical system requires 'obedience to the chain of command' when patient outcomes are at stake, but there is no willingness to look at and listen to the person sitting in front of you. Yep, your other prescriptions will disappear as the GP hides behind 'well, we can't be sure any of this is safe when you taken a non-approved route' type of excuse. Good luck, truly!