I had my thyroid removed in April (nodes and swelling and general poor condition) and have been on Levo since then. I started on 100 mcg a day, as per doctors speculation on what was needed but that failed spectacularly when I woke up on day 10 with a swollen tongue and numbness in both lower arms. Dosage increased until I felt good; at 175 mcg a day I really felt pretty good.
The initial 3 months has passed and i just had my first test results. I would love to get some community feedback.
Free T3 6.06 (2.63-5.7)
Free T4 17.72 (9-19)
TSH <0.0083 (0.35-4.94)
Obviously they wanted to reduce my levo to 150 mcg as the Free T3 is a little high. I did that but I don't feel quite as good (although 100 times better than before the surgery). Also what is going on with that TSH?
Love some feedback
Fiona
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Feebee42
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Well, I'm sorry you have lost your thyroid, it is a major gland, so trust you have had time to read up a bit on the subject, through here and Thyroid Uk, the charity who support this forum.
Your T3 is the most important number to be monitoring, and yes just slightly over range, but as you say, it's also about how you feel, so I wouldn't be too concerned at this point in time.
Did you wait 24 hours from last dose of T4 to blood draw ?
As for the TSH, it is the least important of all three results.
The TSH was originally introduced as a diagnostic tool to help indentify a case of hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement.
Important to keep an eye on your core strength vitamins and minerals as no thyrod hormone works effectively if ferritin, folate, B12 and vitamin D are not maintained at optimal levels.
Generally speaking the accepted conversion ratio of T4 into T3 when on only T4 hormone relacement only is said to be 1 / 3.50 - 4.50 T3 / T4 with most people feeling at their best when coming in at 4 or under :
To find how well you are converting T4 into T3 you simply need to divide your T3 into your T4 and I'm getting you conversion currently coming in at 2.92 :
So, it's all looking good and let's hope this continues with your follow up appointments, and trust you will continue to be monitored and dosed on your T3 and T4 blood results and not a TSH, which seems the " norm ' in most UK primary care settings.
Thanks so much, I am not in the UK (am in the UAE) and so we do have some differences, one being that TSH is not the 'norm' when bloods are done, except for one UK trained doctor I saw (surprise!). I will get bloods done very 3 months for the first year to keep track.
Yes, I did the draw in the morning, and took my daily dose afterwards.
This site has been a godsend, a fabulous place to read and share. No one wants to have anything removed, but it was the best option in the circumstances.
If you feel just a little worse on 150 mcg I would go for it as it might help your TSH recover. If you are a lot worse stick with 175 mcg.
TSH can take quite some time to recover if you have had high hormone levels for a long time. It doesn't reflect fT3 and fT4 for many months, so pay attention to fT3, fT4 and how you feel.
Thank you. I didn't realise the TSH was slow to react ... that explains things a little better. I am not a lot worse, just know that my skin is getting scaly again and my fingers are starting to swell and numb a little. 🤪
I'm sorry you had to have your thyroids removed. I had TT several years ago too. I was dosed at first with very high T4 doses it went as high as 225 mcg T4. I was feeling very hyper. But Dr's kept me on this dose for suppression purposes. I was very unsettled with my thyroid doses for a long time. I even tried T3 and NDT . With T3 the Dr lowered my T4 that turned out to be a disaster. I had all sorts of symptoms.
What I did discover over the years was that you are the best judge of how much T4 you need. Even if your labs come back great according to Dr's and you still don't feel right . Who are you going to believe? So you are right you need what you need . Thank you greygoose. And go according to what feels right for you and your gut.
In addition I would also add that nutrients are very helpful with helping our thyroid meds work better for us. Vitamin "D"/K2, B-Complex,B-12/folate,Iron if you test low.
Your doing a great job. And you are your own best advocate.
In my case I needed to be suppressed for papilary cancer purposes. The Surgeon wanted my TSH close to "0"as possible. I had with this dose palpitations insomnia , anxiety,moodiness ,headaches,heat intolerant,sweating, an overall just not feeling well in my own skin so to speak. Now I'm on 150mcg and this seems to agree with me.You might want to try to alternate the 175 mcg T4 with 150 mcg T4 and see if that might work well for you too. I tried 175 mcg T4 and had joint and hip pain. Once I lowered it to 150 the pains Thankfully are history.
You might want to journal your symptoms with your dose changes. I found it to be very helpful. Also in my case the fillers in the T4 played a big role too. I could not tolerate Synthroid and had to be switched to Levoxyl. A big game changer for me. Little changes make a big difference. For instance the timing of your dosing can make a big difference. Some do well with bed time dosing. Some find that splitting the T4 doses is very helpful too. There are many little tweaks that make a huge difference.
Listen to what your body tells you. Your body will not mislead you. Trust yourself.
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