Endos letter on blood test results on t3 only - Thyroid UK

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Endos letter on blood test results on t3 only

CarolineAnne profile image
10 Replies

Just wondered if anyone could comment on my latest blood test results. I am on t3 only (45mcg daily). I feel better than I have in years but still have lingering hypo symptoms. I have recently received a copy of my Endos letter to my GP writing that my test results are suggestive of being on t3 replacement. I haven't seen him yet to tell him as my appointment got cancelled at the time of my attending it! My plan was to tell him as he is usually quite helpful and ask if he would prescribe.

Results:

Free t4 undetectable ( 9-26)

Free t3 6.6. (2.8- 7.1)

TSH.< 0.04 ( 0.27-4.20)

I take my vitals every day and a typical morning temp and BP and heart rate is. 35.2 106/69 63HR

I've heard that blood test results do not mean much when you are on t3 only. I certainly don't feel hyper. My heartbeat through the day never goes above 80 and blood pressure and temps always remain low. They do rise throughout the day but still low.

I am going to have to write a letter to my Endo now as my app is not until March. I'm unsure of how to put things to be honest.

Thanks for any thoughts

Carolineanne xy

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CarolineAnne
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Heloise profile image
Heloise

Caroline, your blood tests look fine and you say you feel well. How long have you been on that dose?

Your blood pressure is a bit low. I know it seems good as a number but when mine drops too low, I don't feel well.

Are you supplying your own T3? If you have enough, why not continue with your own program.

CarolineAnne profile image
CarolineAnne in reply to Heloise

Thankyou for your reply. I do feel mostly well just dips of energy around period and ovulation time. I was on 50 but dropped back down to 45 as I felt a bit hyper. But I have been on 45 for a good few months. I'm following Paul Robinsons circadian method and wondering if bp could be down to adrenals? I also still have low iron.

I definately will keep buying my own T3 as it is the only thing that has improved my health. I was diagnosed in 2004 and could not manage to get well on thyroxine. Bedbound for a lot of that time unfortunately.

I just think that it would be nice to be able to access the Meds I need on the NHS as it would save me buying it. We seem to have to buy a lot of supplements, vit b12 etc. I also have low sex hormones so I am probably going to have to pay privately for a doctor to look into that next. So I was hoping that my doctor would see the improvements and maybe prescribe. He is one of the better ones I had seen.

Thankyou for the reassurance on my blood test results.

CA x

Heloise profile image
Heloise in reply to CarolineAnne

Caroline, I'm so glad you are finding a way out of this as many of us have done the same. I'll be happy to never see a doctor. We have so much information by real experts in the field. I hope you will watch this video because you will find that your adrenal glands have a lot of control over your sex hormones, your BP, and of course, your cortisol and adrenaline. I had no idea myself but it does explain a lot. Your adrenals need a good supply of magnesium and vitamin C.

Don't suffer any longer.

youtube.com/watch?v=T_Re4ja...

CarolineAnne profile image
CarolineAnne in reply to Heloise

I will watch it. Thankyou for the info.

Best wishes

CA x

Heloise profile image
Heloise in reply to CarolineAnne

You are welcome but take notes as you watch. I had to watch it five times but thoroughly understandable.

phoenix23002 profile image
phoenix23002 in reply to CarolineAnne

CarolineAnne... Have you always had low blood pressure? I have been told that low blood pressure can be as bad as high blood pressure tho never saw where anyone said why. I mention this because low blood pressure can be your 'normal' if it has always been on the low side. If this is a recent change (low blood pressure) it might be something to look into....struggling adrenals, thyroid condition under medicated etc.

I know that low bp runs in my family. My grandmother lived to be 96 yrs, great grandmother to 87. When I was in my early twenties and very healthy, I used to complain to my doc about not having a lot of energy at times. He attributed it to my chronic low blood pressure. He said, "You will probably live a long life but you will feel like you have been hit by a Mack truck a lot of times". Gee... thanks, doc. lol. Now that I am older (over 70), I am grateful for my low blood pressure when I see so many contemporaries on heart medications.

CarolineAnne profile image
CarolineAnne in reply to phoenix23002

Hi

I have always had low side of normal blood pressure since a young age so I think perhaps that could be my normal. It is always really low in the morning but will rise through the day as will my temps. I always feel better from 4 pm onwards. I think this could be adrenals.

I know what you mean, my other half has been on bp Meds since he was 40, 10 years! And my cousin who is the same age as me (46) has just been put on them. I like to stay away from all these Meds the doctors try to give us for blood pressure, cholesterol etc

:)

phoenix23002 profile image
phoenix23002 in reply to CarolineAnne

Then it sounds like low bp is your normal. I would keep track of daily temps and bp... nothing fancy... just jot it down and what you're are taking, how much and how you are feeling. Then, if bp starts to rise, you will have a head's up.

Your T4 needs to be up a little. Maybe that is why you still feel a little hypo? It will help to work on your iron. Adequate iron levels can make a huge difference in feelings of exhaustion and tiredness. So glad you are feeling pretty good tho.

I think you could write to a very polite letter to your endo saying that s/he is of course quite right, and that you are now taking T3 only. Remind him/her that you used to be bedbound and that you are now feeling better than ever before. Explain how carefully you are monitoring yourself, and give all the examples you have posted, so that s/he can see what care you are taking, and explain how you have reduced your dose when it seemed to go to high.

Emphasise that you have read the research on osteoarthritis risks etc and are familiar with the arguments on both sides.

Explain that you were forced to try T3 by yourself because you felt so dreadful, but that you would prefer, of course, to be doing it on a prescribed NHS dose, and ask if it is possible, now guidelines have changed to allow this.

The worst that can happen is a "No".

CarolineAnne profile image
CarolineAnne in reply to

Thankyou. That is very helpful! I will do just that :)

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