Update on my journey of elimination : Hello... - Thyroid UK

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Update on my journey of elimination

Incoguto profile image
7 Replies

Hello everyone,

I'm a 39 yrs old female.

Some months ago I started my elimination process.

I haven't been feeling well for the last 6.5 years, in and out of jobs and life in general.

I was doing great on 3 gr of Armour for 2 years up until mid 2017 and then crashed. Trying to resolve the mystery of what happened.

Many different meds, combos later, here I am.

Last year was not a bad year, I lowered my Armour, added some T3, even started pole dancing and going out etc. And again, crashed in July. The crash almost always looks the same: low sodium, dehydration, dizziness, anxiety, recently breathlessness tagged along.

I have noticed my iron going down, my estrogen plummeting, glucose going up - had enough!

This is what I have done:

1. Tried all meds under the sun, apart from T3 only (and this includes 2 different NDTs).

2. Had iron infusion in November in hope my lowish in range ferritin is contributing. Nope, nothing, 3 months later still the same with a beautiful ferritin and iron levels..

3. Had estrogen/progesterone patch on...lasted a week. My thyroid labs went down over that week (tested), prog made me dopey and almost depressed (well known side effect, FYI, I'm not even deficient in prog, but apparently you shouldn't take estrogen without it if you have an uterus).

4. Had a trial of hydrocortisone (my saliva cortisol always comes back low, but my blood in range or high). Only 3 days, definitely not enough to know anything and doses were too high at 25mg, big mistake! I felt kinda dopey too and calm though at times.

5. I have tested rt3 (the test where I am only costs me 20 euro, so I said sure, why not). I'm hovering under midrange to low in range. Not surprised at that now since my T4 in Armour is only about 80-85 mcg.

6. All my vits/minerals are optimal, I worked so hard to get these high in ranges, vit D, B12, folate, iron, magnesium,

Right now I'm going on less Armour more Thybon T3. Its not smooth, but expected, since T3 in Thybon is not the same as in Armour. Armour is definitely more longlasting. It is amazing for that reason.

I'm getting closer to the truth. This weekend I'm doing a salivary cortisol test to check what impact increasing T3 and decreasing Armour had.

There are two possible scenarios:

1. I crashed in 2017 and I can't get better, because I can't have much T4 in my body, regardless of rt3 (Paul R says some people can't tolerate even smallest amount of T4 - looking at you greygoose and DippyDame 😀). Potentially I might do okay then with smaller amount of NDT and higher T3.

2. I have low cortisol and no way in hell I can tolerate anything because of it). Back in 2017 I moved countries, broke up with my ex, started a new demanding job, loads of stress. The jury is still out on this.

One more thing I need to treat, but right now holding off until everything else is checked - SIBO.

I am not really looking for any advice, I'm posting it in case anyone is in a similar boat and struggling.

We will get there, it's science, but it is damn hard to experiment on yourself x

Ps. I have two endos with two different opinions, which sort of both hinders and helps the process. One wants me on T3 only or majority T3 and potentially hydro, the other one on Armour only and hydro, and low dose transdermal testosterone. Hydro to be taken for about 2-3 months and tapered.

Right this moment I'm on 80 mcg T4 and 35 mcg T3 (between Armour and Thybon, so 2.125 grains of Armour and 15 mcg Thybon).

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Incoguto
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Incoguto profile image
Incoguto

An update 3 weeks after adding 7.5 t3. It isn't going well. Perhaps added too much t3, as I tolerate normally 2.5 max. I feel like I'm drifting away and go into panic attacks, horrible feeling. The last few days couldn't leave the house, so weak. I wonder if my NYC endo is right and I do need hydro with 7% low salivary cortisol and should get stable again on Armour. I wake up fine, but once I take my meds, everything goes haywire 3-4 hours after. I have a strange feeling that first half of the day my cortisol is low and then it's high. Doing saliva tomorrow (last one was done Sept/Oct). Will see what it says. My day right now goes something like, I'm okay in the morning, weird afternoon and evening I'm spiraling to - please take me tonthe hospital, I think I am dying (dizziness, light-headedness, panic), I pop a xanax and I can survive the evening. mind you, before adding 7.5 t3 I didn't have to take xanax every evening, in fact, I didn't take it at all for a year.

Yeswithasmile profile image
Yeswithasmile in reply toIncoguto

So you’re still having a tough time. Out of everything though I would simply say, we endure. When we raise or lower or add stuff in we suffer. It’s all about what level you can endure.

You said you normally only tolerate 2.5mcg so I’d say there’s your limit. Either wait and endure for another month (at least to see if it’s improving or not) or drop back 5mcg. It may take longer but it seems it would be more bearable for you.

You fully understand now that there is no quick fix so I wouldn’t make it harder on yourself than it already is.

Incoguto profile image
Incoguto in reply toYeswithasmile

Hey👋 yes, it's been 6.5 yrs of this. I think I need to give in and go with what both my endos say, I need hydro for 2 months. My cortisol is on the ground, but I'm retesting it tomorrow all day.

2.5 mcg T3 now puts me in a coma, 7.5 mcg t3 is too much, so I reckon it is not about the dose anymore. I used to tolerate 3 or 4 grains of Armour until one day it stopped. This could be my cortisol as my ACTH is low.

It would be interesting to see if 7.5mcg of t3 actually increased my cortisol or decreased it, that would give me a lot of information.

FallingInReverse profile image
FallingInReverse

Can you tell me about the cortisol part? I’m sure you could write a novel, but whereas I am still optimizing Ts… for my next option I’m circling around cortisol and adrenals because I am one of those people where I wake up exhausted, puffy eyes, just unable to move or get up for hours.

I don’t even know what question to ask, I’m just trying to get a grip on what I might do next.

Incoguto profile image
Incoguto in reply toFallingInReverse

Of course! Sometimes it's hard to optimise levels when our cortisol levels are off. You could have low cortisol and take perfect meds and they sadly may not work as meds increase cortisol demand in the body. Also when cortisol is high your conversion may be affected for T4 to T3. It all depends on what you take, how you feel, are you feeling some intolerance increasing medication?

I would recommend first to get your blood serum cortisol and electrolytes tested. Ideally salivary cortisol as well as this would tell you how much free cortisol you have available (blood is bound). If things don't look good I'd recommend ACTH blood test and aldosterone. ACTH is like TSH for pituitary, if it is low it doesn't send signal to adrenal glands to produce cortisol. Some people call it "lazy pituitary". When my thyroid levels are low, my ACTH falls and this is a vicious circle as I can't increase thyroid meds ACTH low = low cortisol. Aldosterone controls sodium, so again if low, means some cortisol issues if other parameters match.

Of course it says on thyroid meds leaflets not to take thyroid hormones in case of suspected adrenal insufficiency. However doctors just give us prescriptions and don't check our cortisol. I was lucky that my GP did a salivary cortisol test before starting me on Armour in 2015. My cortisol was 66% of range in the morning and now it is 7%. Back then I could increase meds and feel great and now I struggle with them.

I could write a novel, but I don't feel wise at all, still struggling with this ***** of a disease 😀

Ps. Some people say T3 increases their cortisol, yes, it can. I have a saliva test tomorrow to see if higher t3 increased my cortisol or depleted it.

FallingInReverse profile image
FallingInReverse in reply toIncoguto

Thank you! I am just barely grasping the basics at this point so your reply is great.

I’ve been getting cortisol with my regular thyroid panels just because why not, but haven’t done a saliva one.

Is a single morning cortisol data point once ever six weeks going to tell me anything do you think?

Incoguto profile image
Incoguto in reply toFallingInReverse

You're welcome! I am a big believer of looking at the full picture with blood tests so I'd say if you can, do it. If they come back all good, but you're not feeling well, do a saliva one. Sometimes blood can be high if we take estrogens, so in case you are on HRT I would advise saliva in that case.

I test blood serum every few weeks and saliva twice a year.

You should see some patterns with your cortisol levels as it is connected to thyroid hormones, but not only.

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