My TSH and T4 are both elevated

[Girlneedsanswers]

Over the course of almost one year, my TSH and T4 are both elevated at times and the endocrinologists act as if they’ve never seen this before. I read a great Canadian article on the Third Thyroid Disease - ATROPHIC- which I have as indicated on ultrasound and CT Scan - barely any thyroid remains from years of hypothyroidism. The article indicates that what finally helped this person was T3 therapy. If someone has experience with high TSH and T4 at the same time and/or T3 therapy, please provide any insight. Thank you.

[helvella Administrator Thyroid UK]

Can I assume that this is not the result of two things together:

1) Under-dosed on levothyroxine

2) Blood draws within a few hours of taking levothyroxine

The inadequate dosing giving rise, as would be expected, in raised TSH.

But the too-short time between taking levothyroxine and blood draw reflecting the transient high from that dose.

Obviously, I'm not saying this is the answer. But it needs to be ruled out.

[Girlneedsanswers in reply to helvella]

No to both - I am all over the place within short periods of time like a few weeks apart. High TSH indicates hypo whereas a high T4 indicates hyper. There is a rare conversion from years of being hypo to going hyper, one woman my approx age, hypo and treated for about the same amount of time approx 26 years. I sometimes wonder if that is happening to me. Check it out on PubMed website where there are studies on this rare conversion. I’m no doctor but sometimes I think my doctor is no doctor either. I read a lot of medical studies for fear I will have to be the one to discover what is happening. I’m the one living this unpleasant rollercoaster so I have a lot of incentive to find answers and get my life back.

[greygoose]

I sometimes wonder if the majority of endos have ever seen any sort of hypo patient. They know so little about the obvious it's frightening! They make a huge medical mystery out of the slightest thing.

So, you have high TSH and high FT4... It would be helpful if you gave us the actual numbers - results and ranges - rather than just talking about high and low. Have you ever had your FT3 tested? Because, as I'm sure you know, TSH reacts to both T4 and T3 levels. So, it is very likely that you are a poor converter which is why your FT4 is high (it's not getting converted to T3) and your TSH is high because your pituitary wants more. But, without actual numbers and an FT3 result, that is just a hypothesis.

Also, you say your thyroid has atrophied (like mine) so, the odds are you have Ord's Thyroiditis, which is the same as Atrophic Thyroiditis. Have you ever had your antibodies tested? Ord's is the same as Hashi's but without the goitre. It behaves in much the same way, destroying the thyroid and leaving you hypo. But, before the complete destruction, you will have the 'hyper' swings and fluctuations in levels. And, you should also know that the TSH is much slower moving than the FT4/3 levels and takes time to catch up.

Also, it usually happens that people who suffer from Ord's/Hashi's are poor converters, so that would be why the woman in the article you refer to was helped by T3.

So, if we join all those dots together, it looks like the root of your problem is Autoimmune Thyroiditis - Ord's or Hashi's - but, we will only know for sure when your FT3 and antibodies - TPO and Tg - have been tested along with your FT4 and TSH, and the results and ranges posted on here.

[Girlneedsanswers in reply to greygoose]

I agree and they all need to be done at the same time! Do you know how long it takes to get a doctor to respond on patient portal never mind getting an appointment!

The bigger factor is I feel like crap and my life is of such poor quality since this cycle began. Thanks for your insight and suggestions. I’m going to message my Endo and request all those be ordered.

[greygoose in reply to Girlneedsanswers]

No, I have no idea how long it takes to get a doctor to respond where you live. But that's not the point. And I imagine you do feel bad - another clue as to the level of your FT3. I just wanted to point out what it appears that your endo is missing. Trying to give you the requested answers, in fact.