I’ve been self treating now for almost a year and will come clean with a endo about this on my appointment. As I was subclinical before starting with FT3/4 at bottom of range (still within) and Tsh at 2.6. (It had raised to 6 over years but never mentioned). Could the Endo tell me to come off medication to see where my levels fall or would he more than likely give me Levo?
I have been told he may do this..... worried now
Which medication are you taking at the moment? I'm getting the impression you aren't on Levo? Also what has prompted you to see an Endocrinologist? It may help us to give you an answer to your query.
I've now looked at your previous posts so will have a proper look at your history.
Thankyou
I’m on T3 only Tiromel.
My adrenals came back as all lows so I’m taking adrenal cortex Thorne also.
It’s getting complicated and going down that rabbit hole I’m feeling.
Right had a look at your previous replies and a bit embarrassed that I've replied on both but didn't recognise your name but I've been asleep since then!
I think you would have felt more confident it you had not missed doing and testing 1.5 grains then 2. Having said that I followed the same regime and missed my sweet spot! I got up to two grains then increased by quarters so by the time I got up to 3 grains my Endo appointment was due and I was feeling good but not quite as good as I would have expected! He looked at bloods and test I was over medicated asFT3 over range so he dropped my to 1.75 which I thought was a huge drop. I think I had no meds for two days first. But he was spot on! Now I take 1.75 3 days and 1.5 on the 4th and temperature is constant. I've always dosed NDT by my temperature. Though I don't drop it or increase right away but see if a trend is happening.
So I thing, as I've said previously, you need to tell Endo and ask him for his help-made him feel important! Take along any bloods you have from when you started out and see what he says. He may well look at your present bloods and work from there or he may want to start again, that is his decision but seeing historical bloods may convince him to treat the present situation. It's a bit of a lottery I'm afraid and I'm sure many of us go along wondering or even worrying what the expert will suggest. But I think you are doing the right thing getting an appointment particularly as you suspect your GP wouldn't be able to help you if something hiccuped.
I would suggest taking a daily basal temperature if you don't already ( i.e. Taken before you get out of bed), and document your weight. Both can be good indicators of changes happening and part of the overall picture of listening to your body. Let us know how you get on and ask questions on things you arent sure about.
One thing I've forgotten. Have you had Vit D, B12, folate and ferritin rested recently? If so take those reading with you. They need to be optimal so that your thyroid works well.
Yes I’ve had those done and I self inject b12 and supplement vit d.
My results as on my other posts were tested on 37.5mcg T3 Tiromel. My concern is it’s showing as if I’m on no meds at all?
TSH 0.812. (O.27-4.20)
FT4. 2.110. (12.0-22.0)
FT3. 3. (3.10-6.80)
Is it possible to show with such low levels on this amount?
How long after the T3 dose did you have the blood test done?
T3 has a short half life. You should do the blood test 12 hours
after your last dose.
It's looking as though your dose is too low. As you may know results are read differently if taking any form of T3. So TSH should be suppressed, yours is 0.812, mine on NDT is 0.01, FT4 can drop down in range but yours has plummeted but FT3 should be high in its range and yours isn't. So I think you need to increase your dose and take it from there.
Thanks. I’m so paranoid at the moment that my ft4 being so low is really bad. I shouldn’t be looking at that when on T3 only should I? I’m not sleeping through night now much maybe a few hours. Last night woke at 2.30 and no going back to sleep. Will my below FT3 be causing this? Could there be a possibility that what I’m taking just isn’t reflecting in FT3 bloods?
Sorry for all questions, my mind is a mush and hard to retain much.
To top it all I’ve just been scolded for treating myself when no doctor would. What are we meant to do, wait till I’m on every other medication apart from treating our thyroid. 😞
Hi ter, I don't have much advice but I don't want you to feel any guilt about how you have gone about this. You would be in much WORSE shape if you were still waiting on your GP. You are hanging in there. I suppose your adrenals are working hard due to your low thyroid numbers making difficult sleep. I don't know if your low FT4 is even worrisome. I've been on only T3 for years and actually haven't had a test lately so am not sure how low my T4 is. Don't worry about the doctor. If he doesn't cooperate just try increasing your T3. I hope you can still get it. All of us are just trying to survive here under pretty bad circumstances.
Thankyou Heloise for the kind words ❤️. I’m just so paranoid at raising and I don’t even know why. You are right too I’m no longer feeling any guilt I’m only trying to help myself. Three wee kids with dad away it’s not easy feeling like this 😑.
You are overworked!
Greygoose has been bringing up cbd oil which I've also used. I think it helps by lowering that fight or flight state. It may help reduce anxiety. I would be interested in how you do with your appointment.
Hi there Heloise it's great to see you back . Missed you . Just wanted to agree with you . If Dr's don't respect how we feel we are then obligated to do the next best thing for ourselves to feel as Optimal as possible .
Aw, sweet, H. I've been busy with all these summits and digging into more autoimmune than just thyroid. This last one, Autoimmune Revolution, has really shown just how much they know about what goes on. I'm going to post my notes from Dr. Michael Murray. I just hope we all pursue the other areas beside our thyroid hormones.
Plus, golf season is over, boo hoo, and I have more time for this
Thanks for missing me. PM me how you are doing.
If you are self-treating you can do what you want with your treatment. The doctor you see can advise you to do what he thinks is best, but you aren't obliged to do what he says. Doctors are not your boss and they are not your parents.
Be aware that endocrinologists have an absolutely absurd and simplistic idea of how the thyroid functions, and don't understand statistics either, so their advice is usually diabolical. The other major problem is that they think T3 is unimportant, and that TSH is all that matters. They might stretch a point and say that T4 is relevant if TSH is out of range. But T3 is the active hormone, and they don't think it is important! Their education on the thyroid is a disgrace.
If you are happy to continue self-treating then that is what you should do.
I think I read initially that T4 drops down to even half way. It most results I've seen it's often lower. As I understand it the FT4 drops because in theory if on T3 you don't need it so it keeps a little in reserve so to speak. I also wonder if one isn't on Enough T3 that it uses up some of the F4 bank. I don't know if that's right but it fits with what you have been going though. Sleep is also expected to improve by taking T3. to me I'm more in favour thats along the right lines than trying to thing why the true dose isn't shown in results. If you don't thing there has been any contamination then your zT3 results should be as is. The only way I can think of causing contamination is by the stuff you have taken doesn't have any T3 in it but I'm sure it's ok especially. If you haven't changed your supply.
Best thing to do is increase by a quarter and unless it really uisnt like it then keep at that for a couple of weeks and re evaluate how you are feeling. If better but not 100 % then cautiously try lifting a gain and holding but not show about best time for a retest. It's a fine line between wishing you prove but then I don't want you to over do it. May be stop there and then make list of things better, things not changed and things that aren't as good. Be honest in your appraisal and tell us how you have got on.
Thanks for all the advice and words.
I’ve had adrenal testing and was hoping someone could take a look at it for me and any comments welcome. I’ve been told I have all lows although a couple of others have commented I have a night high?? I’ve been advised also to rule out Addison’s but then wouldn’t my DHEA be low if I had this?
I just wanted to know for sure if I’m not optimally supporting my adrenals then can this be my problem with feeling bad? Also how do we know we are treating them optimally for thyroid hormone to work at best ?
Adrenal results...
7.45AM 11. (Optimal range 18-35). (Reference interval 5.1-40)
11.45AM 3.9. (Optimal range 6.0-12). (Reference interval 2.1-16)
5.45PM 1.2. (Optimal range 2.0-5.0) (Reference interval 1.5-8.0)
10PM 0.77. (Optimal range 1.0-4.0) (Reference Interval 0.33-7.0)
DHEA* 280. (Reference interval 106-300)
With a note to say*
Diurnal cortisol pattern is insistent with evolving (phase 2) HPA axis (adrenal gland) dysfunction.
Thankyou.
Much appreciated 🙂
Yes, your adrenals are struggling. They try to catch up during the day but they never succeed. You are much lower in the morning at 11 when it should be 35. 3.9 well below 12 and 1.2 not quite as bad so almost producing enough. Now, it's good to be low at night when getting ready for sleep but .77 is even below the 1.0 optimal but the reference range of.33 means it could have been even lower.
I have added 1 NDT into my dose today. Can I ask how long I should now stay on this before testing or possibly raising?
I think one grain will be too much if this is extra to what you are already taking. When you start from scratch with NDT it's half a grain and hold for two weeks. But you already have T3 so I would tried very carefully as a quarter grain can make a lot of different. Although I take NDT if I were you I would just increase what you are already taking but again very slowly. At least this way you have already been ok with any fillers. But please take things slowly. You need to give time for your body to react and things Thyroid don't move quickly-we have to accept that. Trying to speed things up can backfire and send you back to the beginning again. Plus if you have this meeting with an Endo then you should keep it and let him be the one to make any alterations.
When to see another endo
Is it worth asking for a referral to an Endo?
Great first endo appointment
Endo says 100% graves.
Thyroid. Endo reluctant to increase
