Follow up to previous post regarding old and ne... - Thyroid UK

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Follow up to previous post regarding old and new results.

Coachgeorge profile image
29 Replies

I spoke with my internist this morning and asked for the additional tests to look at T3 and vitamins. She isn’t opposed but would like to up my T3 from 7.5 mcg to 10 mcg and do the full panel in 2 to 3 weeks. At that time, she may increase my levo from 50 to 75.

Folate Old 20.0 New 15.2 >5.4 is normal range. Dr. stopped folic acid supplement.

Free T4 Old 1.32 New 1.19 range .80-1.8

TSH Old 4.49 New 4.84 range .4-4.5

Free T3 Old 3.32 No New-UGH range 2.3-4.2

I've learned I need to be supplementing with folate not folic acid. It has also been recommended that I take the 10mcg of T3 and wait until new T3 results are available before I increase levo to 75. Any additional thoughts would be appreciated. Today has been rough,in bed, kind of day.

Thank you

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Coachgeorge profile image
Coachgeorge
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29 Replies
SilverAvocado profile image
SilverAvocado

Coachgeorge,

With that high TSH, low freeT4 and low freeT3 all you can do is hang in there and make sure you keep getting raises every 6 weeks or so.

You will likely still feel quite rubbish with those poor looking blood tests, but everything is slow in thyroid hormone treatment. All you can do is have patience, be kind and gentle with yourself, rest a lot, and wait. It may be a few more months before you get close to your sweets spot.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

I’m still trying to figure out how all this works. The brain fog is a huge problem. Since she raised my t3 will that lower my tsh? Or, do I need to wait until she raises my T4 for my tsh to lower? I guess I’m asking what needs to happen next? Thank you

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

TSH stands for thyroid stimulating hormone. It raises when the body wants to stimulate the thyroid to make more hormone. It basically responds to how much thyroid hormone you've got as a whole, and the lower your hormone is the higher TSH will be. As you increase your dose the TSH will reduce. For most people, by the time they get onto a good dose and feel well TSH will be very low, bottom of the range or below. Yours is still pretty high, showing your dose is much too low.

FreeT4 and freeT3 show how much of the two types of thyroid hormone are available in the blood. The most important of these is freeT3, because T3 is the active hormone. Most people need this to be high in range to feel well, about top third.

When you increase your T3 dose, what should theoretically happen is your freeT3 will rise a little bit, because you've got more T3 hormone. And your TSH will fall a little, because you've got more hormone available. FreeT4 is a bit of an anomaly, this often drops a bit when we increase our T3 dose because the body doesn't care as much about T4 when it's getting T3 in tablet from.

In real life these relationships can be a bit more fuzzy. For me TSH nearly always responds to a dose increase, but freeT3 and freeT4 can sometimes be a bit up and down. For me I always feel an improvement in symptoms even if blood tests don't change.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

Thank you. I’ll have to read this several times to comprehend. It’s been explained before, I’m just having trouble with my cognitive abilities. I appreciate you taking time for me.

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

CoachGeorge, take your time and I think its worth saving some of your favourite explanations and returning to them every day.

I was very ill when I first came to the forum, and I just read a bit every day until it slowly started to sink in.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

I started saving screen shots. I thought I was improving but I’ve hit a wall and am back in bed most days. It’s hard to balance the need to rest and wasting away. Thank you

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

It definitely is hard!

And also there are a lot of ups and downs. It's not just a linear process of slowly getting better all the time.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

That’s been the most difficult part. I lose hope when I crash. I didn’t know about the ups and downs. I really thought I was getting better. We are supposed to go see our family next week. I’m afraid I won’t be able to go. We haven’t seen them since Christmas. Just tough. Appreciate the support

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

I think this stuff is one of the most emotionally difficult parts, thinking "I must be completely better, now", but then the next day being very sick.

I have just been chatting about this to other friends with similar illnesses, it's a big process of acceptance and coping. I just recommended the book "How to be sick" by Toni Bernhard so I'll recommend it here, too. Meditation also helps a lot (and is good for the adrenals).

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

Thank you. It’s a hard life

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

I read your profile. Would you say you are functioning and able to have a fairly normal life?

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

No, I'm still very ill. I have some kind of thyroid hormone resistance, the hormone doesn't pass into my cells.

I am enormously better than I was a few years ago. I've gone from probably about 3% function to more like 20% or more. I think to live a mostly normal life you need around 60% :p

SilverAvocado profile image
SilverAvocado in reply to SilverAvocado

My profile is very out if date, I need to work on it but it's a bit daunting!

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

I’m so sorry you are struggling. But, it sounds like you are moving in the right direction. I hope you have help. I know how difficult it can be.

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

No, I don't really have help. I've had to go it alone.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

It’s so hard. You are in my thoughts.

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

Aaaw... Thank you :)

jgelliss profile image
jgelliss in reply to SilverAvocado

I'm so sorry you need to do it on your own . But at times it's worth it . We know *Best* how we feel after all . And cellular symptoms are very telling . Labs are only a snap shot of the moment you have labs done .

Wishing You Wellbeing .

jgelliss profile image
jgelliss in reply to SilverAvocado

We all started out knowing almost nothing when we started out with our thyroid journeys . I personally trusted my Dr's and I feel today that I was (MIA) missing in action with my care . Big Mistake . It was a hard lesson for me to learn . But very worth it . My Dr now partners with me in my care . We discuss symptoms doses and lab results together . I come prepared with questions so that I don't take up more time from the Dr . He also respects that I know what I'm talking about .

This relationship took many years to build . When I share something new with my Dr if I happen to come across he takes note and lets me know that he implemented it with some patients and it seemed to work .

We need Dr's that don't feel threatened if patients share/ ask info . It would be a perfect world if both Dr and patient respect one another Dr's listen and dose according to patients needs T3/NDT/T4 . And think out of the *Box*.

Coachgeorge profile image
Coachgeorge in reply to jgelliss

NDT question. Why would one take t3 T4 and NDT? NDT isn’t talked about much in the US.

jgelliss profile image
jgelliss in reply to Coachgeorge

NDT is Natural Desiccated Thyroid made from porcine . I was dosing with Synthetic T3 and did not do well with it . I had surges and felt like a T3 run out . I also had headaches . I am now dosing with T4 + NDT for my T3 mix . I feel that this way the T3 from the NDT is a much smoother way for me to dose with the least side affects . I had TT several years ago and since I no longer have my own thyroids that once made T3 T4 and the pigs is very similar to humans thyroid in different ratio I add some T4 to my NDT . Many do great with synthetic T3 sole or combo with T4 . It's a matter of trying out which way works the very best for us .

At the end it's really more *Art than Science* .

jgelliss profile image
jgelliss in reply to Coachgeorge

T3 is the more active thyroid hormone . There is receptor sights in the brain and heart and muscles and more . T4 is a slower acting thyroid hormone and is supposed to convert to T3 . I'm not a good converter myself . And dosing with NDT for my T3 mix split several times a day is very helpful . TSH takes sometimes months to respond to thyroid increase/decrease . That's why it's not conducive for us to dose by TSH's . TSH is a pituitary marker and not a thyroid marker .

Coachgeorge profile image
Coachgeorge in reply to jgelliss

Thank you

jgelliss profile image
jgelliss in reply to SilverAvocado

I second the motion . Increasing /lowering thyroid meds low/slow is the way to go . You might miss your *Sweet Spot* if you do it fast . Testing 6 weeks with new dose changes is the preferred way . You need to allow your body to acclimate to new changes .

Teresamarie profile image
Teresamarie

So sorry to hear that you are so I’ll. The good people here on this site will surely help. Each of us has their own journey with so many pitfalls it’s hard to count. My thoughts are with you. xx

Coachgeorge profile image
Coachgeorge in reply to Teresamarie

It’s been very helpful. Hard to take advantage of the wisdom with all the brain fog. Thank you

Teresamarie profile image
Teresamarie in reply to Coachgeorge

I’m definitely with you on the brain fog!! Keep going forward and don’t look back. Be kind to yourself. xxx

Coachgeorge profile image
Coachgeorge in reply to Teresamarie

You, too.

Coachgeorge profile image
Coachgeorge

Is NDT used more often with TT ?

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