now my T3 and T4 are high

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marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/18/2018 9:56 PM (GMT -6)   
After years of being hypothyroid, no matter how much thyroid replacement I was taking, I am suddenly high in both my T3 and T4.

I imagine this is a good sign! Something has shifted. It must be because I'm making headway on the infections, or because of my work with an acupuncturist.

My T4 is 1.99 (.82-1.77)
My T3 is 4.5 (2-4.4)
My TSH has been below range for years, even when my T3 and T4 were also below range.

I am not going to be able to talk to my doctor about this until Tuesday. I want to just go ahead and lower my thyroid replacement... It's hard to imagine continuing to overmedicate myself given this new information. Do you guys think I should wait?

If I did lower it, what should I lower and by how much? I am on three different kids of thyroid replacement (I know I know, totally chaotic, long story). Levothyroxine, Naturethroid, and time released T3. Probably easiest to go down on the Naturethoid. Though I've been wondering about coming off the synthetic (levothyroxine) for a long time.

Girlie
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Date Joined May 2014
Total Posts : 33893
   Posted 5/18/2018 11:18 PM (GMT -6)   
marigold33 said...
After years of being hypothyroid, no matter how much thyroid replacement I was taking, I am suddenly high in both my T3 and T4.

I imagine this is a good sign! Something has shifted. It must be because I'm making headway on the infections, or because of my work with an acupuncturist.

My T4 is 1.99 (.82-1.77)
My T3 is 4.5 (2-4.4)
My TSH has been below range for years, even when my T3 and T4 were also below range.

I am not going to be able to talk to my doctor about this until Tuesday. I want to just go ahead and lower my thyroid replacement... It's hard to imagine continuing to overmedicate myself given this new information. Do you guys think I should wait?

If I did lower it, what should I lower and by how much? I am on three different kids of thyroid replacement (I know I know, totally chaotic, long story). Levothyroxine, Naturethroid, and time released T3. Probably easiest to go down on the Naturethoid. Though I've been wondering about coming off the synthetic (levothyroxine) for a long time.


So your TSH has always indicated hyperthyroid (ie low) even when your FT3 and FT4 were low?

You did get the Free T3 and Free T4 tested, right?

I don’t know what you should reduce.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/18/2018 11:28 PM (GMT -6)   
Yes exactly! My TSH indicated hyperthyroid even when all of my actual thyroid levels (FT3, FT4, even reverse T3, were well below range). So we concluded that something was off in the communication system between hypothalamus/pituitary/thyroid and stopped using TSH as an indicator.

I went from being very low in the acceptable range for FT3 and FT4 to above range sometime in the past 5 months, without having increased anything.

Girlie
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Date Joined May 2014
Total Posts : 33893
   Posted 5/19/2018 12:18 AM (GMT -6)   
Sounds like you have a good Dr. Many just go on TSH


Will you post after your appt?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
Total Posts : 5090
   Posted 5/19/2018 11:06 AM (GMT -6)   
marigold33 - Could you fill us in with a little more thyroid history?

In hopes of healing thyroid with infection- Knowing thyroid antibodies is the key. Regular Drs don't care, and they are WRONG.

Autoimmune thyroid is different than regular thyroid issues. Are/were your autoimmune?

Have you had all three thyroid antibodies tested in the past? If so, get update on your current levels to take the guesswork out of this. TPO, TgAb, and TSI (graves only).

This is important to know and track during infection or solving food issues that reflect thyroid health.

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/19/2018 11:56 AM (GMT -6)   
Hi Astro!

I've had antibodies tested.. all three I believe.. I've never had any autoimmune issues.

The conclusion has been that it's a bit mysterious.. probably not an actual thyroid problem so much as some poor communication between hypothalamus and pituitary and thyroid, so that even though my FT3 and FT4 have been very low, the pituitary has not been asking for more thyroid hormone to be produced. I've had to take a whole lot of thyroid replacement to even get my levels at the bottom of the acceptable range, and my symptoms have still been very hypothyroid. That's why I'm thinking it must be a good sign that for the first time my levels are above range. I've been taking soooo much thyroid hormone every day for years, and all of a sudden there is a major shift in my levels.

Girlie
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Date Joined May 2014
Total Posts : 33893
   Posted 5/19/2018 12:01 PM (GMT -6)   
Marigold - did you ever have an mri of your pituitary gland?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
Total Posts : 5090
   Posted 5/19/2018 12:38 PM (GMT -6)   
No antibodies.......good!

I think they still do Cat scan imaging of the Pit gland too, I had one years ago. I don't know the pros and cons for Pituitary imaging types being Cat vs MRI.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/19/2018 12:43 PM (GMT -6)   
Girlie and Astro, that's a good idea.. To look further into the pituitary gland. None of the doctors I've seen has thought of that, and it now seems like an oversight.

Girlie
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Date Joined May 2014
Total Posts : 33893
   Posted 5/19/2018 12:51 PM (GMT -6)   
astroman said...
No antibodies.......good!

I think they still do Cat scan imaging of the Pit gland too, I had one years ago. I don't know the pros and cons for Pituitary imaging types being Cat vs MRI.


CT scans = radiation

MRI - none

For something small in the brain (pituitary gland) an mri would be better.
And less risky - especially if you’re younger..due to the radiation/cancer risks.
They don’t like to do CT scans on children for that reason.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
Total Posts : 5090
   Posted 5/19/2018 1:48 PM (GMT -6)   
So thats what happened to my brain........I was blaming thyroid and lyme all along.

I've been "cat scanned".
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

Girlie
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Date Joined May 2014
Total Posts : 33893
   Posted 5/19/2018 3:19 PM (GMT -6)   
astroman said...
So thats what happened to my brain........I was blaming thyroid and lyme all along.

I've been "cat scanned".



Once? I'm sure you'll be fine.

Were you a child?

I had a CT scan in 2013 - to look at my adrenals when my cortisol was high.
That led me to having the mri of my pituitary gland.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
Total Posts : 5090
   Posted 5/19/2018 3:42 PM (GMT -6)   
Girlie said...
astroman said...
So thats what happened to my brain........I was blaming thyroid and lyme all along.

I've been "cat scanned".



Once? I'm sure you'll be fine.

Were you a child?

I had a CT scan in 2013 - to look at my adrenals when my cortisol was high.
That led me to having the mri of my pituitary gland.


Joking about cat scan being the cause.

Same story as yours. A GP did ordered a brain CAT in my mid-early 20's after I was at the top of the range on a regular cortisol test - since pit tumors can cause that. At least this guy didn't totally ignore my symptoms. Pit looked OK.

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/19/2018 4:02 PM (GMT -6)   
So neither of you ended up having a pituitary issue?

I refrained from decreasing my dosage today.. It felt more responsible to wait and talk to my doctor on Tuesday.. But now it's 2pm, when my thyroid replacement would probably be causing my levels to be highest, and I feel exhausted/like I'm on speed... Now that I recognize this feeling as a hyperthyroid symptom it's going to be hard to keep doing this to myself. I may decrease my Naturethroid a little tomorrow. That should lower both my T3 and T4 a little.

Girlie
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Date Joined May 2014
Total Posts : 33893
   Posted 5/19/2018 4:22 PM (GMT -6)   
marigold33 said...
So neither of you ended up having a pituitary issue?

I refrained from decreasing my dosage today.. It felt more responsible to wait and talk to my doctor on Tuesday.. But now it's 2pm, when my thyroid replacement would probably be causing my levels to be highest, and I feel exhausted/like I'm on speed... Now that I recognize this feeling as a hyperthyroid symptom it's going to be hard to keep doing this to myself. I may decrease my Naturethroid a little tomorrow. That should lower both my T3 and T4 a little.


My ct scan wasn't necessary, as I had a dexamethasone test done and I passed the test.
A couple months later, retested the cortisol and it was normal.

i had the mri of my pituitary gland already scheduled, and went ahead of it.

There was another blood test done - ACTH

I can't remember all the details now.

So, the MRI didn't show a tumor or cyst, but it said something like: "pituitary stalk slightly deviated to the left of unknown significance"

Of course I'm thinking maybe they missed the tumor or cyst that is pushing the stalk to the left...lol.

I have to add that my thyroid tests - TSH, FT3 and FT4 are good...and I've had them tested at least 3 times.
I never had thyroid antibodies tested...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
Total Posts : 5090
   Posted 5/19/2018 4:28 PM (GMT -6)   
Mine was fine back then. So I assume my un-diagnosed lyme (had the bullseye) was messing with my endocrine system by then already. Hypothyroid Hashimoto was Dx'ed 7-8 years after my pituitary scan.

The only effective mean I've ever used to mellow my high cortisol is holy basil. Was high at AM and night, low un afternoon. Its hard to distinguish that while being hypothyroid at the same time.

Just skipping thyroid med one day has a more noticeable calming effect that lowering the dose. I did that when figuring out my thy med levels. been hyper on thy med, no fun- but is really was a hyper baseline learning experience to know what it feels like.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

Justin01
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Date Joined Jan 2018
Total Posts : 60
   Posted 5/19/2018 8:44 PM (GMT -6)   
Ask to have your Reverse T3 (RT3) tested as well.

Also, did you have your adrenal gland hormones tested? The better test for Cortisol is a 4 point Salivary test (you fill 4 different tubes with saliva 4 different times - throughout the day).

Our adrenal glands get taxed by the strain that is put on them from the physiological and psychological stress that we experience with these infections. Whether your Cortisol is too much or too little, it can cause all your other hormones to get out of whack. Antibiotics will stress your adrenal glands as well. Additionally, too much Cortisol or too little will weaken your immune system, as well as can increase inflammation within your body, and possibly causing other immune system issues. If the adrenal glands are stressed, then the thyroid will be stressed, as well as the sex hormones. They all work together.

The important thing here is to rule out physical/structural issues. The salivary test can be done by an alternative doctor.

Have you had any blood pressure issues? How about a fast or too slow pulse? Palpitations?

Post Edited (Justin01) : 5/19/2018 7:48:11 PM (GMT-6)


marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/20/2018 3:50 AM (GMT -6)   
Hmmm that's interesting about skipping a dose...

I will bring all of these issues up with my doctor on Tuesday.... pituitary, adrenals... I'm just currently wondering how to get from now until Tuesday.. I'm currently awake at 1:45am with nervousness, shallow breathing, feeling of racing.. I was planning to just go ahead and lower my dose tomorrow... Lower the naturethroid by a half grain.. I know adjustments, themselves, can stress the body, so I thought I'd just do this small adjustment. But that's interesting, Astro, about skipping a dose. I mean... I get my thyroid labs done in the morning before taking any of my medication, and my levels were high, so that is really counterintuitive to take more thyroid hormone if you're pretty sure your levels are already above range in the morning. I just don't want to stress my body further by doing a severe change.

One other question... In Feb/March I lost about ten pounds... I thought it was because I was having such a hard time keeping food down during my lyme herxes. Now I wonder if I was already hyperthyroid. But I didn't start feeling really shaky like this until more recently. So perhaps the weight loss is what MADE the thyroid replacement I've been taking for a year suddenly render my hyper?

astroman
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Date Joined Mar 2014
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   Posted 5/20/2018 9:55 AM (GMT -6)   
onother option-

Maybee just wait it out for the next test.

Many calming herbs to get you by till then.

I've taken thy med for 20 years and have been hyper at times. skipping dose is the most effective if your hyper. Then carry on the next day.

High adrenal makes you hyper too. could have both? same feeling.

So perhaps the weight loss is what MADE the thyroid replacement I've been taking for a year suddenly render my hyper? - doubt it.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/26/2018 6:04 PM (GMT -6)   
I ended up dropping my naturethroid by 1 grain. Felt a little better. When I finally talked to my dr on Tuesday, he said that's what he would have told me to do. Later that day, my heart started racing again so the next morning I dropped another 1/2 grain. Better for two days, and I was racing again... so this morning I dropped yet another 1/2 grain.

It's intense to be dropping by so much so quickly, but so far it's been the right thing to do. I mean, it's a whole different stress on the body to be changing thyroid dosage, but it's better than the hyper symptoms. I'm hoping I can hold steady at this new dosage -- a whole 2 grains lowered! -- for four weeks so that I can then get an accurate read in some new lab results.

My dr thinks this could all be a good sign, that I've done some healing underneath the bewilderingly high dosage of thyroid replacement I've taken for 4 years.

astroman
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Date Joined Mar 2014
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   Posted 5/26/2018 11:06 PM (GMT -6)   
Wow, thats a lot to lower in short time!

You might have some weird side effects from that. Great news.

The labs will tell more. You can do T3 labs though- the Drs dont tell you that. The "6 weeks stable" is really for T4. I've done short term labs for T3, since I also took a combo med with T3. T3 goes in and out in relatively short time, unlike the 6 week life of T4.

I'm kinda jealous. My thyroid is toast from years of antibody attacks disfiguring it, no more butterfly shape, its a blob on U/S imaging. I still upped thy med even though one antibody drastically improved.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Flares ended after. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/27/2018 12:25 AM (GMT -6)   
Astro -- sorry to hear your thyroid took such a hit.

Yeah I've already had some weird side effects. I think my blood pressure has been affected.

I feel pretty good about the dosage decreases.. up until that last one today, which feels like it may have been a bit bold... But I'm telling myself I can go back up if things get bad.

I'm definitely making myself feel better in the short term... As uncomfortable as the dosage changes are, every time I've dropped it's a relief from feeling hyperthyroid. But yeah, I'm a bit concerned about the whole T3 having a 4 hr half-life and T4 having a 2 week half-life. Astro, did you ever lower dosage on a T3/T4 medication? Do you think that I'm going to feel another major drop in 2 weeks due to the changes I made this week?

astroman
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Date Joined Mar 2014
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   Posted 5/27/2018 10:40 AM (GMT -6)   
marigold33 said...
A Astro, did you ever lower dosage on a T3/T4 medication? Do you think that I'm going to feel another major drop in 2 weeks due to the changes I made this week?


Yes, during the US desiccated thyroid powder shortage of 2009. Unfortunately 90% of the US pharmacy's could not get ANY brand of desiccated thyroid in for a period in 2009.

I also have lowered one brand while ramping up another brand, then lowered the new brand since my body used it better and became hyper.

**So my experience with lowering pig thyroid med because of hyperness is I felt better for **three days** , then many symptoms appeared as this confuses the body. Symptoms being : worse insomnia, hot/cold sweats, sore thyroid, horse voice, more aches. If this happens to you, you might find gradual med changes are more comfortable.

marigold33
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Date Joined Aug 2012
Total Posts : 400
   Posted 5/27/2018 11:11 AM (GMT -6)   
Oh how terrible there was a shortage! What a nightmare.

I think I will definitely only adjust very gradually from here.

I only dropped so much so quickly this time because it felt like such a crisis hyper state -- hyper feels really bad! -- and I was clear I was taking an overdose of thyroid replacement.

I'm definitely a bit concerned that I've been irresponsible decreasing so much so fast.

My doctor recommended all but the last drop, and I think he'll be supportive of it when we speak again.

For the first time I think I had that adjustment reaction you're describing... Last night I was very uncomfortable, insomnia until 4am, heartbeat just felt weird... like very loud, like my whole body was beating with my heart. I couldn't tell if I was hyper or hypo, but maybe it's simply the adjusting. UNTIL last night, since the dosage drop, I had my first 6 nights of sleeping without a sleep aid in 8 years!

At this point, do you think just ride this adjustment period out? Any guesses on how long the adjustment symptoms last?

And then, after that initial adjustment period, did you feel another drop when the T4 change registered?

astroman
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Date Joined Mar 2014
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   Posted 5/27/2018 12:30 PM (GMT -6)   
Some people are just more sensitive to thyroid med levels than others. I had chronic lyme then too so i'm sure that made thyroid symptoms worse.

Even back then reading other thyroid forums- when people decreased they felt great for a few days, then..wham, it hit them for a few weeks. So that is a popular pattern with others who have done this to. But......you will live and feel better in the long term.

The T4 symptoms are more spread out (makes sense). My thyroid adjustment symptoms last accoring to how much change occurred. Minor changes lasted 6 weeks, major changes (like med shortage) lasted up to 3 months and honestly 6 months to feel best again.

Shortage history: The med companies and FDA dont seem to understand or care that many cannot function without thyroid med, and many lost there jobs in 2009 due to this. The FDA was part responsible in 2009 as they also shut down two other desiccated thyroid manufacturing plants, Major and Time Caps I think they were called. They were great and just copies of old Armor.

The FDA does not like desiccated thyroid because it was grandfathered (1900?) in before FDA came to being , so.......US desiccated thyroid even today has never been FDA "approved"!! The FDA does inspect these plants more and tells them what fillers they can and cant use. They did that in 2009 and just did recently.

There was a lesser shortage of desiccated in the US since new years - but again, the FDA intervened and Armour is again, different fillers than in 2017. Changing the fillers changes "absorbability", so you have to change dose when they change fillers.

"F" the FDA, .........myself and others ordered online from Canada (ERFA thyroid brand) so we could function. I now use NP thyroid, but almost had to go with Canada again as NP was in high demand..

There was even a levothyroixin shortage in the late 90's. Any thyroid shortage is not acceptable in modern times, and every time this happens..a US price in crease follows:

Wow: Armour in 2008 cost $18 for 180 for one grain pills, now its over 200 at some places. Canada is $50, only $10 more than in 2008. My NP with Walgreens "club" card is $52, without club discount its $160. Many Rx insurance will not cover desiccated at all, if they do its in the $90 tier bracket.

The FDA sucks.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Flares ended after. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.
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