I had an appointment with an endocrinologist that came highly recommended. I went in with my results (see below) and was told I don't have a thyroid problem so don't need any medication. However, he wants to keep monitoring me and asked me to test and send him my results every 3 months. I was told my a doctor I did have a thyroid issue and needed medication. I am very new to all of this so feeling very confused. Question is, is the endocrinologist right? Or do I need to keep pursuing?
Test results taken while on T3 medication.
TSH 3.53 ref range: 0.27 - 4.20 mIU/L
Free T4 16.1 ref range: 12.0 - 22.0 pmol/L
Free T3 3.8 ref range: 3.1 - 6.8 pmol/L
T4 Total. 79.5 ref range: 66 - 181 nmol/L
Anti-Thyroglobulin Abs 20 ref range: <115 IU/mL
Anti-Thyroidperoxidase abs H 281.0 ref range: <34 IU/mL
Thank you so much.
Written by
Olives201
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Endos aren't always the best people to see about thyroid because they're mostly diabetes specialist with scant knowledge of thyroid but a lot of weird ideas.
And going to see one when you're already on thyroid hormone replacement (T3) - self-treating? I can't remember - is obviously going to muddy the waters because your TSH is now in-range, and they don't know anything about euthyroid levels.
Did he know you're taking T3?
Your antibodies are very high so you obviously have Hashi's, but he probably doesn't know anything about that.
So, he's wrong, but I can understand, from his limited point of view, why he said that.
Yes he knew I was on T3, I explained I had been prescribed by FMD. And I showed him previous results when I wasn't on medication, he's supposed to be a thyroid specialist and was recommended him by someone who has been to him for their thyroid. I am becoming more and more confused.
Please don't let someone as ignorant as that confuse you. He is 100% in the wrong and nothing he says carries any weight. The only thyroid specialists worth their salt are the patients that live with it 24/7. For the rest, it's all a rough guess.
You have Hashi's, and even on T3 your TSH is screaming 'hypo'. What more proof do you need? Sorry is you spent a lot of money on him, but he's no specialist. And the question has to be asked: what exactly did he do for the patient that recommended him? Doctors are like ice creams: not all flavours suit all patients. My favourite doctor was one that everyone else in town hated! But I got on just fine with him - and I can't stand doctors as a general rule.
Just ignore him and don't go an see him again, that's all I can say.
Are you on any medication? I'm assuming not from what you say so I'll take it from there
You are hypothyroid....your low FT3 shows this!
Your FT4 is 41% through ref range
Your FT3 is 18.92% ditto
We aim to have both Frees roughly approaching 75% through their respective ref ranges....or until symptoms improve
You can see that your labs are miserably low
Additionally your T4 to T3 conversion is very poor ...high FT4 with low FT3......but adding replacement T4/ levothyroxine will likely help, at least until you see your FT4 rise towards top of ref range and see how that affects your FT3.
FT4 should not rise above ref range this can, in the long term, make us vulnerable to other health issues....eg cancer, dementia. Don't worry, right now you are not remotely there!!
Have you optimised vit D, vit B12, folate and ferritin to support thyroid function/ conversion....this is vital.
Your TPO is high suggesting thyroid autoimmune disease/ Hashimoto's....a gluten free diet usually helps
This might help you understand hypothyroidism better
PS....just noticed in your response to gg that you are taking T3...that throws another light on this situation
I need high dose T-only to function due to a form of thyroid hormone resistance ....this is very rare and T3-only is the absolute last resort. Who suggested that?
We need the full story....never-the-less your FT3 is still miserably low!
Are you sure this endo is a thyroid, not a diabetic, specialist.
Yes on T3 only as this is what FMD prescribed when first diagnosed. I had no idea about anything at this stage as was completely new to me. Then I found this forum and have seen this is not the norm and not the right path in terms of medicaiton. All vitamins are fine, B12 and iron could be a little higher but they are particularly low.
Your post suggested you are not medicated.....does your endo know the full story.
Your GP should be able to treat you once your system is clear of exogenous T3.
I think you need to start at the beginning again and base all dosing on both FT4 and FT3 results because your TSH alone will be skewed by the T3 and while generally not a reliable marker it will be even less so now
Their reasoning was because my T3 was lower and she was worried I had a conversion problem. I suspect they are also not overly knowledgable about the thyroid!
You're absolutely correct their knowledge is abysmal
T3-only is the very last resort....I know because I've travelled a decades long very bumpy road, for about 15 years of that journey on levothyroxine, until I could barely functionto get here, My body was starting to shut down
Most likely I've had an undiagnosed thyroid problem all my life....until I finally requested a thyroid test in my late 50s...now I'm almost 79.
I now know that diagnostic showed a failing thyroid ...but at the time the endo said he didn't understand my results!. Thankfully I found this forum which possibly saved my life....
I understand that you just trusted your doctors (that's what we should be able to do!) but unfortunately their lack of knowledge had the potential to do more harm than good.
T3 is a powerful hormone and must be treated with understanding and respect....it's not dangerous if used properly but it scares the hell out of many medics so they metaphorically run for the hills.
I self medicate with T3 ....now 100mcg... and my GP thought I was killing myself.....I'm still here to tell the tale....and my GPs now accept that I know what I'm doing and leave me in charge of my thyroid treatment
I agree with the others ....stop T3....you can just stop. I did that once from 212mcg T3 ( doctor's request!) it was fine. Wait a few days then initiate levothyroxine as the others have advised.....50mcg starter dose etc.
Don't wait too long before starting levo because you will begin to feel undermedicated without replacement hormone!
I only stopped so that I could re-start on a lower T3 dose. I have a rare form of thyroid hormone resistance in case you are wondering about my dose!!
You will likely feel a bit of colour until you reach your therapeutic dose.....but stick with it
The NHS is not highly equipped to deal with thyroid disease which is why so many people arrive here.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
ESSENTIAL to test vitamin D, folate, ferritin and B12
Not on Levothyroxine because my doctor prescribed T3 first which I didn't know wasn't normal at the time till I found this forum. Did all of the above for testing. Have tested all my vitamins and everything fine apart from B12 and iron could be a little higher but they aren't low.
Its very unusual to be put on T3 first, T3 monotherapy is usually a last resort treatment when everything else has failed, Levo, NDT or Levo/ T3 combi.
We do have members on T3 only but they are people with long standing hypothyroid who have tried other treatments first. Was there a reason why you weren't started on Levo ? T3 can be tough to get right especially if new to thyroid replacement.
Their reasoning was because my T3 was lower and she was worried I had a conversion problem. I suspect they are also not overly knowledgable about the thyroid!
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