I saw my Endocrinologist today who really confused me with his advise and I was hoping anyone can advise me further on this.
He said that TSH is the only indicator on if I should increase T3 (hmmm?) He wanted to drop my T4 so I can raise my TSH (as he thinks I am hyper- with no symptoms of being hyper) He would not increase my T3 prescription by even 5mg to help me ease my afternoon symptoms, and said afternoon fatigue is something we all need to deal with- he is worried about AF with increasing T3 (which I do not have). He said it is not likely we will ever be able to replicate the hormones the body naturally produces and just something to accept. He would not recommend NDT at all. Finally he mentioned I should take T4 on the day of my test, which is in contrast to what he said last time. Currently taking 100 T4/ 10 T3 2x a day.
My bloods from the 24/09 are:
TSH 0.03 ( 0.55- 4.78)
FT3 4.7 (3.5- 6.5)
FT4 12.7 (10-20)
Ferritin 36 (15-250) taking spartone
I do feel much better, as working with naturopath on my gut, but still get this afternoon fatigue, brain fog etc. My HR avg. 54- 57bpm which is low for me.
I am wondering what people think I should do/ could do to improve this further? Considered getting my own T3 supply for pm, but now worries about TSH ( which I was not worried about before today- been 0.03 since started T3 in Dec 18) Have tried to split my T3 dose further but then don't feel have enough at all.
Any thoughts of NDT? Not sure where to start/ should I consider this?
GP won't prescribe iron to raise levels. Not sure if I can take more spartone or anything else. Will this impact my energy in any way.
Thank you for any advice
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I think you should get a new endo. This one has no idea what he's doing.
The TSH cannot tell you if you need to increase your T3, the FT3 and symptoms tell you that. The TSH on its own doesn't tell you much at all.
You cannot become hyper when you have been diagnosed hypo. The thyroid cannot suddenly regenerate and start producing too my hormone. You could be over-medicated, but with those Free levels you most certainly are not over-medicated. You are under-medicated. The TSH is suppressed because of the T3. That's what it does. And, it's suppressed because you do not need it anymore, and the pituitary knows that, even if your endo doesn't!
Afternoon fatigue is not something we all have to put up with. And, if he suffers from it, maybe he should get his thyroid tested!
Your heart is in far more danger of problems with a low FT3 than with a high one - at least, as high as a 5 mcg increase would take you. You'd have to have very high levels to endanger your heart. He doesn't understand T3 - what it is nor what it does.
We may have to accept that we can't replicate exactly the hormones that the body naturally produces, but we can do a darn site better than that! Your FT3 is far too low for good health.
If you take T4 before your blood draw, all you will be testing is the dose you just took. You will not know what your normal circulating level is. I think he said that because he knows what will happen if take your levo before the blood draw, your FT4 will be higher, and he can then say 'you see, you don't need an increase in dose'! They're so sneaky! When they're not down-right ignorant, that is.
Don't worry about your TSH. It only has two jobs - which are very important if you have a healthy thyroid. But, when you are hypo and taking exogenous T3, the TSH is completely out of a job, so the pituitary just stops making it. And that's fine.
Thank you for the reassurance. Going to go it alone I think. I get the prescription from this Endo and happy to buy a little extra if I need it. Do you know where I can look at getting T3?
Sorry, I don't have a T3 source myself, at the moment. The best thing is to write a new question, asking just that in the title, and people who have sources will PM you. Hopefully.
I don't think Spatone will be enough to raise your ferritin to a decent level. Mine actually fell after taking Spatone for 6 months. Ferrous fumarate 210 mg 2-3 times a day would be what you'd get on prescription (can be bought from Tesco pharmacy for example or online pharmacies) but iron biglycinate is often easier on the stomach. Iron should be taken with Vit C. For someone on T3, your free T3 is far too low. TSH is usually suppressed on T3 and has no effect on bones, heart or anything else as far as research shows- your endo sounds ignorant. Some people do better taking T3 3 times a day, eg 10, 5, 5 (or 10, 10, 5). I'd also check that B12 and folate are optimal.
Check your Selenium (Se) level. If it is low conversion of your T4 to the FT3 (that you need to feel well), will be feeble. If Se is low, take a supplement or eat two Brazil nuts per day. A boost in your Se will convert what little T4 you have to as much T3 as it can grind out which might be sufficient for you to feel well.
Btw, I had a total thyroidectomy and I was hypo with all of the classic symptoms. I was told by my (stupid) Endo that because my TSH was low (<.1) that I was HYPER! No, there is a lot more to declaring you Hypo or Hyper than the level of your TSH.
My advice is to go it alone. it's a lot of studying and a bit expensive (due to blood tests) to begin with, but after about a year you are back to normal and you only need a blood test every year. Just watch your blood pressure (BP), drop back your intake of T3 if BP goes up.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Your results suggest you need dose increase
Essential to have optimal vitamin D, folate, ferritin and B12
I did not take T4 for 24hrs and T3 15hrs before fasting am tests. Endo also suggested I follow this guide for tests in my first appointment. This appointment he changed his thoughts.
I do not have a lot of confidence in him anymore, but need him to complete my NHS prescription for T3. Very frustrating really. Just looking for an extra 5mcg in pm, which I know will make the difference.
My TSH has been suppressed since I started T3 and have had 3 Endo visits since those tests. This is the first time he panicked.
Will look to self medicate the extra dose I think.
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