Undertreated but can’t tollerate more - Thyroid UK

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Undertreated but can’t tollerate more

JoyCA profile image
14 Replies

I’m back on this site cause this is where I’ve found the most helpful information. I’ve struggled for years to get my thyroid levels to where I consistently feel good. I am currently only taking T3 5mcg 1x in the morning. I was like the Walking dead without it. Now I can function at least but I’m still tired and weak feeling most of the time. I also feel depressed. My reg doc told me to try adding an additional half a pill in the afternoon. After a few days I felt agitated, and couldn’t sleep at night so stopped doing that. I went to see an endo who only treats thyroid issues. She suggested that I add 25 mcg of T4 (Levoxl brand). I’m allergic to milk so am limited in my choices. I felt awful! After 3 days of feeling dizzy, super foggy brain and almost like I was stuck in slow motion, like muscles wouldn’t move, I skipped it today and feel better. But still super tired. I know you guys will ask to see my labs so my first question is, is there a pkace to add them attached to my profile so that no matter where I post you can find them? Or do I just add here? Before taking the cytomel my tsh was over 6. Now it is over 2. My reverse T3 went down. I can post all real numbers. Where should I do it?

Also, just want to say hi to Greygoose cause of all the helpful info last time I was on here. Thank you to all.

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JoyCA
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humanbean profile image
humanbean

There are lots of possible scenarios that lead to poor tolerance of thyroid meds even when they are needed - the following covers just one possibility :

People with hypothyroidism are often not treated until they have been ill for years. During the time they are untreated the adrenal glands step in and produce extra cortisol and adrenaline to keep people going. It isn't a good substitute for thyroid hormones but it is the best the body can do.

When people start to be treated for hypothyroidism, then if they are lucky their cortisol and adrenaline production will gradually go down while their thyroid hormone levels gradually go up as their dose is increased.

In some people this stepping down of cortisol and adrenaline production doesn't happen, and levels stay too high. If that happens people can't tolerate sufficient thyroid meds to feel well.

Another problem that might occur is that, while untreated (or under-treated), the body pushes out loads of cortisol, but can't keep up the high production for years on end. Eventually the adrenal glands slowly start to reduce their cortisol output until there isn't enough to keep people going any more. But then people can't tolerate thyroid hormones because they don't have enough cortisol.

So, too much or too little cortisol end up making people struggle to tolerate enough thyroid hormone meds to feel well.

Cortisol is best tested with a 4-part saliva cortisol test which also includes DHEA. There is no benefit to paying for more than 4 saliva samples for most people.

When you have your results, if you post them here and ask for feedback, or look for other posts on what to do for high or low cortisol, hopefully you will then be able to help yourself and eventually tolerate more thyroid meds.

I had high cortisol. When I found something that worked for me in lowering my levels I was able to double my thyroid meds.

You might be taking supplements that raise or lower your cortisol, and it is good to know what might be affecting you (that isn't to say that you can or should necessarily stop taking them).

rt3-adrenals.org/does_it_af...

stopthethyroidmadness.com/s...

Neither of the links above tell you which things lower cortisol and which things raise it, but you can easily research this for yourself.

There is information on saliva cortisol tests available in the US here. You can order your own (for a fee, obviously) without involving your doctor and your insurance company, if that is something that interests you :

stopthethyroidmadness.com/r...

....

There are other things that affect thyroid meds besides cortisol - see this post on an ME forum :

forums.phoenixrising.me/ind...

JoyCA profile image
JoyCA in reply to humanbean

Hi humanbean, I actually got the saliva test done about a year and a half ago by my doc. She prescribed Adrenevive which sent me through the roof with agitation and anxiety. Later, I found this forum and posted the results and was advised by some very helpful peeps that my morning level of cortisol was too low, then it got to the top of the range, then stayed up making it above range at 3rd test and I can’t remember re the 4th. I learned abt the adrenal cocktail and started drinking it and I think it helped. I don’t know why I stopped. I guess I get overwhelmed by all the things I read I should be doing and since I still don’t feel well either give up or if I feel like I’m having some kind of negative reaction cut back on what I’m doing.

After reading your post I’ve started drinking it again.

Weird thing since my last post. After that awful extreme reaction occurred and subsided. I noticed that I felt a lot better. Like hypo symptoms were much less. It is as if that little bit of t4 finally made its way into my system. Is that possible? And I’ve felt better for abt 4 days and it is now wearing off.

My therapist sent me to a specialist to evaluate the depression. She recommended her because of her knowledge of the big picture and nutrition. She looked at my labs asked questions and focused entirely on my under-treated thyroid issue. She did a saliva test for genetic testing. MTHFR as well as a bunch of other things. I had read about that in Stopthethyroid maddness. Yes, I do actually have that book and gave read through it several times. Honestly, it gets confusing and overwhelming especially when docs tell you not to believe anything in it and it is harmful.

I’m hoping to learn something significantly helpful with the DNA test.

In the meantime, if I take one issue at a time and work on improving it hopefully I can keep from getting overwhelmed and stay the course.

My last labs showed I’m still low in D 36, so have doubled to 4 drops a day instead of 2, it has k in it, iodine 51, I’n taking one drop of an iodine supplement now zinc 55, magn 2.2, phosphate 3.5, iron total 85, binding 371, saturation 23, ferritin 87, b12 409, folate 14.2. If you need ranges for any of these let me know.

Can you recommend the best type of zinc or a brand, as well as bcomplex or anything else based on the above?

Thank you so much.

JoyCA profile image
JoyCA in reply to humanbean

Oh and read the me forum list of 22 things. Yikes. How does anyone narrow it down and figure that out? Perhaps I should print out that list and take to my next apt when I get the results of the DNA test?

humanbean profile image
humanbean in reply to JoyCA

You could buy the book the list came from :

amazon.co.uk/Still-Thyroid-...

It probably has more info on all or some of the situations described.

But printing out the list and showing it to a doctor might be helpful - I think it would depend on the doctor though.

JoyCA profile image
JoyCA in reply to humanbean

Only going to show it to the new open minded one who is doing the DNA testing! Thanks for the link to the book.

Meanbeannyc profile image
Meanbeannyc in reply to humanbean

How did you lower your cortisol human bean?

humanbean profile image
humanbean in reply to Meanbeannyc

I discovered after lots of experimenting that Holy Basil works for me. I use this supplement :

healthmonthly.co.uk/swanson...

I had to take more than it says on the bottle for quite a while, but I've been taking it for several years now and I have reduced to the "official" dose over time.

Meanbeannyc profile image
Meanbeannyc in reply to humanbean

Humanbean. I have high cortisol and no thyroid (thyroidectomy) keep dropping my dose because I can’t tolerate it. Making myself soooo sick. Decided enough is enough and need to increase my dose and get on track. About to start holy basil. How long did it take for u to notice a difference? My cortisol is ALWAYS 22 no matter what time of day I am tested. Ref range is usually upper limit 15-17 (am/pm). About to start in a few days.

humanbean profile image
humanbean in reply to Meanbeannyc

One of my symptoms of high cortisol is a feeling of internal trembling. When I take Holy Basil in the correct dose for me my inner trembling stops and my muscles relax.

Meanbeannyc profile image
Meanbeannyc in reply to humanbean

I get outward trembling as well with hypo labs. :(

Meanbeannyc profile image
Meanbeannyc in reply to humanbean

Humanbean, why don’t you tolerate T4?

humanbean profile image
humanbean in reply to Meanbeannyc

My profile is out-of-date. I am currently tolerating T4 again, as of a few months ago.

I first tried Levo at a time when I was catastrophically, desperately short of iron and ferritin and also well below optimal on various other nutrients.

It took a very long time, particularly for the iron and ferritin, but I've improved all the nutrients that I've had tested.

I've also changed my diet from being carb and sugar-heavy to one which contains more fat and protein and less sugar and carbs. I've probably improved various nutrients I've never even had tested.

When I started taking Levo again I've coped with it fine this time around.

Meanbeannyc profile image
Meanbeannyc in reply to humanbean

When’d you stop T3 only?

Meanbeannyc profile image
Meanbeannyc in reply to humanbean

How’d you do the switch over? Just switched?

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