I've been officially Hashi hypothyroid for a couple of years. Started my medication journey with levothyroxine (Euthyrox, Letrox), but every new dose would be helpful for just a couple of months, and then a dose increase would go.
Last year I started with Prothyrid (Sanofi), a combo T4:T3=100:10 (mcg). I've been taking 1 + 1/4 tbl every day.
And I have been feeling great, the best in the last 10 years.
But.
At the last check-up, my endo was appalled by the test results:
TSH = 0.0008 (ref. 0.55-4.78 mcIU/mol)
FT3 = 4.8 (ref. 3.5 - 6.5 pmol/L) - this is the highest FT3 I ever had since the diagnosis
FT4 = 14.24 (ref. 11.5 - 22.7 pmol/L).
The endo says that my TSH is catastrophically low, FT3 is a bit high, and she decreased my therapy to only 1 tbl/day. Just a couple of days after the decrease, my brain fog and strength loss crept in. I quickly switched back to my previous dose.
Also, my periods have stopped a couple of years ago - the moment I started with Levo - and never came back. The gynecologist is puzzled since my reproductive system is completely fine, hormones are mostly fine: only FSH is low. I performed an MRI of the pituitary - all is good.
I've been taking all recommended supplements (selen, E vit, D vit, iron, C vit, B12, Mg, omega-3, zinc+copper, probiotics, digestive enzymes) + metformin for my "hypoglycemia with hyperinsulinemia".
I would really appreciate it if you could share your opinion on this. Any advice would be helpful.
Written by
Shkmigmo
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Your endo is useless. If she is prescribing a medication that contains T3 and doesn't know that T3 lowers, and often suppresses , TSH then she is in the wrong job. And to say your FT3 is a bit high when it's 43.33% through range just confirms how useless she is. No way did you need to reduce your dose, you're only overmedicated when FT3 goes over range.
As for your supplements, presumably you tested and know that you need them and are taking the correct dose and monitoring your levels.
You are right, she is useless since she was convincing me that the only feedback loop that should be controlled is TSH-T4. And unfortunately, it will be hard to find another one who would be willing to prescribe me T3.
I would like to push my FT3 a bit higher through the range - but this is obviously something that I should experiment with by myself.
but every new dose would be helpful for just a couple of months, and then a dose increase would go.
Not quite sure what you mean by 'a dose increase would go', but if you mean that your symptoms would start to creep back, then that is perfectly normal. And, all it means is that you're ready for the next increase. Nothing more sinister than that! Pity doctors don't understand that. How much levo were you taking in the end?
Still, you've now got T3, even though your endo is one of the worst I've ever heard of. There's no such thing as a ' catastrophically low' TSH when you're on T3. That's what T3 does. And, actually, dispite your low TSH, you were actually a little under-medicated on that dose. But, if you felt fine, there was absolutely no need to change your dose. Now she's reduced it, your FT3 - the active hormone - is going to be too low for your needs, and that's why your symptoms are returning - although it's very doubtful that your TSH will have changed. If you continue with this ignorant endo, she will end up reducing your dose until you are very ill, in an attempt to raise your TSH, and might even take you off T3 altogether. She is never going to make you well. So, in your place, I would get rid of her as fast as you possibly can. Your health is at stake!
"Not quite sure what you mean by 'a dose increase would go', but if you mean that your symptoms would start to creep back, then that is perfectly normal."
Yes, that's right. And that is something that horrifies me - that rollercoaster of feeling good and bad, hopeless that I would feel like myself ever again.
"How much levo were you taking in the end?"
I was taking 150mcg daily (Euthyrox) when I decided to switch to T4/T3. The effects of the increased Levo would last for only a couple of months, then again I would be completely drained. My FT3 was always below the range while on Levo.
"So, in your place, I would get rid of her as fast as you possibly can. Your health is at stake!"
I certainly will, but I have no clue where to look for another one. Could you recommend any good endo that would do online consultations?
And this is a question for anybody who might suggest and advise in this direction.
I live in Bosnia, and online consultation would be the only option.
The effects of the increased Levo would last for only a couple of months, then again I would be completely drained. My FT3 was always below the range while on Levo.
Well, as I said, that's a perfectly normal response on any form of thyroid hormone replacement. But, it does sound as if you have a conversion problem on top, which means that adding T3 is probably the right thing to do.
Could you recommend any good endo that would do online consultations?
I'm afraid not. I know nothing about any sort of endo availability because I've been self-treating for many years. I've always found them all pretty useless!
Your endo is only going to ruin your health and frankly is not fit to treat thyroid disease.She is probably a diabetic specialist...I hope those patients fare better!
Her level of ignorance regarding thyroid hormones is appalling, but sadly not so very unusual, worryingly many medics don't seem to grasp the fact that the thyroid is a vital hormone gland. It plays a major role in the metabolism, growth and development of the human body and helps to regulate many body functions. For good health it must constantly release a steady amount of thyroid hormones into the blood stream....but you most likely know that already!
If this supply is impaired, or fails, correct diagnosis and treatment is essential to maintain health and quality of life...and life itself. It's not something that can be overcome by referring to a few tick boxes and numbers on a computer screen - we must be treated as individuals with different needs.
I was told, " just take this little white pill (levothyroxine) every day and you will feel well again, and it means you get free prescriptions for life". Not me.... it reduced me to a wreck!!
Did she ever ask you how you feel, because that is an important part of diagnosis!
Totally agree with the others...ditch her!!
And...return to the dose that made you feel "great" remembering that FT3 is the most important lab as the others have explained....not TSH.
I completely agree with you, but you cannot win an argument with those doctors.
"Did she ever ask you how you feel, because that is an important part of diagnosis!"
I tried to explain to her that I feel great now with the current therapy, but she was like under a spell, just repeating that TSH is too low. I really can’t understand why so many endocrinologists are so ignorant and behave like conspiring against all thyroid patients.
And thanks for the Canadian website - such a great resource! Do you know any good endo that would do online consultations? I tried to find it on the site that you recommended but couldn’t find any info.
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