Cortisol tests - can you explain?

[Xheila]

Hi, I've been researching my Hashimoto's for years now and I finally got my Free T3 in the acceptable level. My last increase of Armour was on 10/28/20. I take 2.5 grains per day. My last blood test results 2/3/21 were:

Free T3 at 3.8 pg/mL (2.3-4.2) 79% through the range

Free T4 at 1.1 ng/dL (0.8-1.8.) 30% through the range

TSH was 0.01 mIU/L (0.40-4.50) *I ignore this and my endo knows enough to ignore this as well*

Because my FT3 is higher in the range than my FT4, I have been told that it appears that I am pooling (Free T3 staying in my blood but not entering my cells) and need to get a cortisol test. From what I have found the cortisol saliva tests, measured 4x per day are accurate and the blood tests are likely to be off.

I would not be surprised if I have a cortisol issue. I became hypothyroid soon after experiencing significant trauma that shook me to the core and changed my life as I knew it. This caused me to to sleep less than 3 non-consecutive hours per night and run adrenaline for a few years. I understand that constant high cortisol can lead to low cortisol, which I think I may have.

I've read as many posts about cortisol as I can on here and those who have gotten the saliva 4x/day tests have sometimes been advised by you who understand the results: sounds like you are dragging in the morning and at night are wired and have a hard time calming down. This is me exactly!

So I've gone every route to try to get the saliva test. My endo prescribed only the blood tests (ACTH and Cortisol AM) and said I need to go prior to 8am for the test. My GP said they did not know anything about the saliva tests and therefore would prescribe me the test. I live in an area where it is not legal to order our own saliva cortisol tests. My endo did say that if it looked like my numbers on the blood tests were out of range, he would consider giving me the saliva test.

So finally, my questions. Is there a way to help ensure my cortisol blood tests are not "in range" ? I cannot stand mornings and thought maybe if I get up even earlier than normal it would look worse? Is that a bad idea, to intentionally try to skew the results?

Is it true that the saliva 4x/day tests are far superior?

Is there anything else I should know about the tests?

I have begun treating my MTHFR mutation about 1 month ago and am feeling much, much better than I have in a very long time. I can even plan my life days in advance, whereas before I was just putting out each fire as needed. Will this treatment be helping my cortisol issue, provided I have one? Because doesn't MTHFR make the iron not enter my cells, just like what we suspect with the Free T3?

Thank you so much for your advice. I truly appreciate this site.

[Lalatoot]

I admit to knowing nothing about cortisol issues.My simple response is how do you know you are on the correct dosages of thyroid hormones?

You are taking T4 and T3 hormones. Could it be that you are taking too high a level of T3 ie the ratio of T4 to T3 in NDT is not right for you.

There are folks on here who need to add levothyroxine (T4) to NDT to bring their results into a balance that suits them.

[Xheila in reply to Lalatoot]

Thanks! I didn't ever consider that. I think this will be a tough sell for my doctors, though. I'm in the US and I know my insurance won't cover it, but I could probably afford levo out of pocket but I know I can't afford Armour. If I can get them to try a switch at all, I know a lot of people on thyroid meds and only know one who is taking levo and liothyronine. The only reason I got my FT3 that high in the first place was bc I increased my dose against their recommendations. They told me I was on the right dosage when my FT3 finally got in range at all, but I was not well then. Not even close. But all along, my troubles have been thyroid related so hopefully, I can convince them to try and get both in the optimal range. I appreciate the advice!

[SeasideSusie Remembering]

Xheila

I agree with Lalatoot.

Your results are typical for someone on NDT - TSH low/suppressed, FT4 low in range, FT3 in upper part of range, that's just what NDT does, it doesn't mean that your T3 is "pooling".

NDT doesn't suit everyone. Some of us need FT4 higher in range than NDT can achieve and we either add Levo to NDT or take synthetic Levo plus T3 and adjust the doses of each one individually to find what suits us best.

[Xheila in reply to SeasideSusie]

Thank you! I will try to convince the doctors to give this a try.

[Jazzw]

You might find this old thread interesting on the subject of pooling: healthunlocked.com/thyroidu...

[Xheila in reply to Jazzw]

That post was very helpful, thanks for finding it for me! My favorite quote: "What is important ..... as always ...... are the signs and symptoms - they tell us whether the person is improving or not." I have recently started methyl folate and methyl-B12 (along with a few other supplements) for my MTHFR mutation and my signs and symptoms are improving significantly! Nearly affecting me as much as I improved when I first stared NDT. I'll check my thyroid labs again in a few weeks and see if the FT3 and FT4 levels are getting more closely balanced and if not, make the grueling attempt to get the doctors to alter the meds to levo and NDT.

[Hidden]

Okay I'll try & help you understand cortisol. Firstly blood tests are much more accurate than saliva, saliva tests are usually done for high cortisol. they aren't any good for low cortisol.

Normal cortisol is at its highest first thing in the morning, the normal range is between 350-55-nmol/Ls, it then drops during the day so it is at very low levels at night

High cortisol can be high first thing in the morning but stays high during the day, if it is high at night it will cause weight gain around your tummy area, round flushed face, high BP, easy bruising, insomnia, stretch marks, fatigue, you don't have to have all of the symptoms, high cortisol can be caused by long term steroid use, a benign tumour in either the pituitary or adrenal glands.

Low cortisol is low first thing in the morning & may stay low through the day. Low cortisol cause weight loss but sometimes can cause weight gain, low BP, in extreme nausea & vomiting, diarrhoea, extreme tiredness. It can be also caused by long term steroid use, an issues with either the pituitary or adrenal glands, or an autoimmune condition.

Any cortisol results under 350nmol/Ls should be further investigated for adrenal insufficiency.

I understand that constant high cortisol can lead to low cortisol, which I think I may have.

I've never come across this, the only time high cortisol becomes low cortisol is when surgery has been done to remove a tumour in either the pituitary or adrenal gland. Your Endo is doing the best initial tests so I'm not sure why you want to skew the results?

ACTH needs to be done at the hospital as it needs to go on ice or to the lab straight away which wouldn't happen if it was done at the GP surgery.

[Xheila in reply to Hidden]

Wow, thank you very much. I must have gotten some bunk advice on cortisol tests in the first place. (It was from somewhere other than this site.) The same person had helped me tremendously at the beginning of my treatment and when she basically told me that the cortisol blood tests were worthless, I took her advice as gospel.I'm in the US and we never get any blood tests at our doctors' offices, we always have to go to the lab. I will go get those tests done in the a.m. tomorrow! And try to get them as accurate as possible. Your advice is very much appreciated. 🙂

[Hidden]

There are several Facebook groups for people with high cortisol investigating Cushing's, they are The Many Faces of Cushing's & Cushing's Support. If it is low cortisol then there is Adrenal Disease support group or Adrenal insufficiency Support.