Anybody outside the range part 2.

[Jimjamio]

Hello again, the original post from yesterday and some more information and questions underneath. Thanks again for all the help. Part 1

Good afternoon everybody hope this makes sense

Is there anybody out there that needs to run outside the ranges in order to feel good? At the moment my t4 and T3 levels are both at the top of the range with a fully suppressed tsh. I take t4 and T3, I maintain all the recommended supplements at or near the top end of the range, I have a decent varied diet.I had an rai so no thyroid at all. Why am I still so hypo. I'm still cold, have scaly skin on my legs, pulse around the 60 mark ( used to be 75), I've recently found myself struggling for breath and feel like I need to breath through my mouth in order to get enough air, my hearing is a constant problem to the point I almost needed hearing aids along with tinnitus (at the moment my ears are better than usual and I honestly put this down to the higher weather temperatures, they improved on day 3 of the warmer weather.) I also had raised TPO antibodies on my last medichecks test ( does that mean I get to add hashis onto the list with graves?

I've never had acne on my back but now have spots on my shoulders. I sleep well then wake up feeling like I haven't been to sleep.

I feel like I can say I know that I'm hypo at the moment but the screen says otherwise so I'll never win the discussion. Does anybody else use biological markers like pulse and core temperature and test themselves accordingly knowing they are out of range but feeling good.

I remember what I used to feel like and this isn't it.

Something isn't working and I really feel like my thyroid is at the root. It doesn't help that I have ms and eds, because fatigue and pain are all symptoms of those which makes it too easy to say it can't be my thyroid because you're at the top of the range.

When I noticed the acne I googled thyroid and acne hey presto hypo symptom, then breathlessness and thyroid and that's a thing too. I worry about my hearing because that says if it isn't treated soon it could become permanent.

According to the numbers I can't be hypo but I really feel I am.

Just wondering if some people have to run above the reference ranges to feel normal.

Part 2

Sorry for the original lack of info. I see all the posts and the first thing that's requested are results I was just hoping to find someone that needs to ignore those numbers to feel good and is still alive. I don't think I'm over medicated but maybe wrongly? My latest thyroid results:

T4 16.7. (9-19)

T3 5.1 (2.9-4.9). First time this has been this high

TSH .004 (.35-4.94)

These were a couple of months ago

Latest vitamin work is from last August but I am still taking the same and have been for a while

Folate serum 45.4 (8.83-60.8)

Active b12 150 (37.5-188)

Vitamin d 300 (50-250) that was on 170,000 iu a week I have since lowered it to 120,000 (I'm really not worried about the vit d after reading Jeff t. Bowles, my chronic tennis elbow and rib clicks finally stopped after years once I got above the range, another reason I wonder about the ranges we are all being asked to fit in.)

Ferritin 229 (30-400)

TPO 40.3. (0-34 )

CRP 11.3 (>3). This is always high no idea why ms?

Oh I'm a dude as well 48 years old ms, eds, graves, had an rai. My wife has already told me it's the man o pause but I think there could be another explanation.

Redapple I'm in a weird situation really, where all of my symptoms could be explained by one of my other conditions which really doesn't help. If I was over medicated wouldn't my pulse and/or temperature be affected? As far as I'm aware I've never been over medicated never feel wired or restless. I sleep well, but when I get up I'm still knackered. I'm cold tired and slow.

At the moment I struggle to clean up on the kitchen and do a load of laundry, this is not me as a person, I love being outside, making things, I would still skate every day if I could, or go swimming fishing or walking.

I really feel like I have previously when under medicated ( this has happend before a lot, with the worst case ending up half a degree off hypothermic with a pulse of 33)

I really hope I'm not over medicated because if I am I'm screwed, I think I'm taking the wrong treatment in one way or another but I have no idea how or why.

I'm not free anything in my diet and if I had to give up dairy i would cry. Please don't make me give up dairy

I've had my cortisol tested before and taken the synacthen test supposedly all good.

Dippydame your bio is absolutely amazing what a story, and what an amazing person you are for being brave enough to take control. I've read recovering with T3 by Paul Robinson and it really made sense.

I was on a T3 only trial before the price hike, taking 40mcg in the morning and 40 at lunchtime and I felt I was almost there but got denied any more so had to revert to combination therapy. I'm worried about just stopping t4 and knowing what T3 to take. I'm really tempted to just stop my t4 and take T3 as necessary until I feel something like normal. Did you just stop your t4 and start T3?

At the moment I am prescribed t4 only which they have just reduced to 175 from 200 because of the above results, I was taken off the T3 against the guidelines when I told them this and asked for my 20 T3 a day back they just said no. I do know a very nice doctor near my parents in the States that I do get to see every once in a while, he is more than happy to prescribe T3 I just really wish I didn't need to rely on my parents to help me source it from 5000 miles away

My dose for a long time has been 200t4 and 20t3

I actually increased my T3 to 40 in order to get those last lab results.

Thank you everyone for your replies

I actually have an appointment with an unknown NHS endocrinologist tomorrow morning. Not looking forward to it at all.

I must start trying to write a bio like dippydames it's going to take a while.

[RedApple Administrator]

Calling out to DippyDame in case she misses that Jimjamio has specifically mentioned her in this post.

[DippyDame in reply to RedApple]

Thank you RedApple

[DippyDame]

Good luck!

[greygoose]

I'm worried about just stopping t4 and knowing what T3 to take.

So, what worries you about stopping T4? A lot of us do very well without it. I know I do. Plus, if you stop it and feel worse, you can always start it again.

You can't know in advance how much T3 you're going to need. Your dose has to be found by trial and error. Often more error than anything else! But that's OK. It's not going to kill you. You know you were good on 80 mcg T3 before so that might be a good starting place.

I went to T3 only from NDT. It was a bit complicated, but it's all written down on my profile. And in the beginning, I was on about 225 mcg a day and still felt hypo. I don't know what my labs looked like at that point because I didn't do any. No private testing in France, and I didn't want any doctor meddling with my experimenting - they usually do more harm than good! I just went by how I felt.

Anyway, long story short, I'm now down to just 75 mcg a day, and I think that is my dose. Nothing else feels right. Yes, I needed it a lot higher to begin with, but my theory is that I - like DD - have some form of thyroid hormone resistance, but the high doses of T3 improved my uptake, and now I don't need them so high.

But, I would say that if you find you need high doses of T3 to feel well, there's no point in splitting the dose because that defeats the whole point of the exercise. If you need high doses to flood the receptors to force some hormone into the cells, you need it all in one go. I still take it all in one go all these years later.

Trouble with doctors is they a) only look at the TSH and cannot get their heads around the fact that a low TSH doesn't always mean over-medication. b) a blood test only tells you what's in the blood, it doesn't tell you what gets into the cells. And no matter how much there is in the blood, if it doesn't get into the cells then you're not over-medicated - with T3, that is, T4 is different.

So, if I were you, I would source more readily available T3, cut out the T4 and play around with doses a bit. And don't pay too much attention to blood tests at this point, they won't tell you what you want to know. Learn to understand what your body is telling you and do what it says. And if all else fails, you can always come back to what you're doing right now.

[Jimjamio in reply to greygoose]

Thank you thank you thank you, I can't tell you how much I needed to hear that and it came from the greygoose. I actually feel empowered to go to my endo appointment tomorrow knowing that no matter what is said, I have a plan and hope for the future. If this works (and I actually think it will) I definitely owe you a bottle of your namesake. Thank you again

[greygoose in reply to Jimjamio]

you're welcome