What’s going on here and what should I be asking my endo for now?

[Localhero]

I thought till a few months ago I was going to be one of the lucky folks here who crack the code on thyroid treatment and get their lives back. For a while it certainly felt that way. However, things have shifted in a big way and I’d once again love some advice from the forum.

In October, when I felt still well (sleeping well, little anxiety, feeling optimistic, losing weight, a lot less tired) my blood test results were:

TSH: 0.06 (0.27 - 4.2)

FT4: 19.2 (12.0 - 22.0) 72%

FT3: 5.2 (3.1 - 6.8) 57%

I was on 100mcg Levothyroxine and 5mcg T3. I’d imagined there might be room for a small increase in T3 at that point but my endo disagreed and in fairness the blood tests seemed to support his view.

Early December I had what I believe was COVID. Headache, diarrhoea, loss of smell, taste and appetite, raised temperature, swollen glands, achy. A COVID home test came back negative. However my husband had the same thing (although didn’t test), so we’re pretty sure that’s what it was. In any case, it really knocked me.

By early January I was still feeling crappy. Thyroid blood tests were:

TSH: 0.21 (0.27 - 4.2)

FT4: 16.3 (12.0 - 22.0) 49%

FT3: 4.3 (3.1 - 6.8) 32%

The other interesting thing that crept into the equation at this point was high iron. Iron etc is normally optimal.

Iron: 30.9 (6.6 - 26.0)

TIBC: 48 umol/L (41 - 77)

Transferrin saturation: 64% (20 - 55)

In any case, the endo at this point prescribed an additional 5mcg of T3, to be taken at midday (the first lot of T3 taken on waking around 6am). I felt better again for a few days, but I then started to feel really weird. Nervy and wired. Constantly hungry. Exhausted. My insomnia kicked back in big time. Weight I’d lost last year started to come back on. My resting heart rate jumped from around 70 to around 80 and I could feel my heart beating wildly pretty much all day and night. I stuck this out for a while thinking it would settle. I experimented with taking the second T3 dose later in the afternoon. Reading around here and having some private conversations with other members I wondered if the additional T3 had tripped on an underlying cortisol issue and I ordered a saliva test via ThyroidUK. This came back showing extremely high morning cortisol as shown in the attached picture.

Rightly or wrongly I blamed the T3 and stopped taking it. I’ve been off it now for at least six weeks. In the meantime, I’ve also had shingles 🙄 for which I was given a prescription of Acyclovir.

I’ve an endo appointment on Monday. I had these test results in advance:

TSH: 1.64

FT4: 16.3 (12.0 - 22.0) 43%

FT3: 3.2 (3.1 - 6.8) 2%

Interestingly iron is still high:

Iron: 29.5 (6.6 - 26.0)

T.I.B.C: 54 umol/L (41 - 77)

Transferrin saturation: 55% (20 - 55)

All tests done early morning, fasted with meds taken as advised here.

Any ideas about what’s going on? What do you think I need to be doing or asking for now?

[McPammy]

Looks like your symptoms after upping the T3 was that you where becoming over medicated. Probably good you stopped the third dose. Not sure why your iron is over the range. Mine is nowhere near over and I supplement with Ferris fumerate as mine can get too low. Do you supplement your ferritin at all. Are all your other vitamins optimal. I find this helps if optimal.

Regarding you mentioning covid and you believe you’ve had it. Have you had your first vaccination yet. I had mine last month and got a full body immune response. I felt awful for 3 days. I spoke to my Dr about my positive immune response to the vaccination, I didn’t call him for just that I was on a routine call after bloods done which were all good. He said if you get a full body response from the vaccination you’ve probably had covid. I did think I had it last March. I thought back then I got it from my gym. Couldn’t get a test back then. I was bad for a few weeks but not bad enough to go into hospital or anything like that. Just a thought and it’s a measure I guess.

I really have no clue about your iron levels I’m sorry. Too high T3 can cause your cortisol to go high. And the opposite if your T3 is too low. This could be your answer re the high cortisol. Or Cortisol can go high if your are unwell as it’s our own steroid made naturally to help us through sickness. There may be a link with high ferritin and high cortisol??

[Localhero in reply to McPammy]

Thanks for this McPammy

I don’t supplement iron at all. I’d planned on doing a Medichecks test that included vitamins, but actually fainted as I was doing it, so had to abandon it. So other than Vitamin D3 which was 129 on this most recent blood test, I’ve no recent tests, although I take the Ignenus Super B complex that’s high in both B12 and folate.

Interesting what you say about COVID and the injection. I had mine a few weeks ago too. I had a headache and, yes, was achy all over, although it didn’t last more than a couple of days.

I agree re the cortisol. Something funny going on there. No real idea what to do about it though!

Take care!

[Wired123]

Iron and Ferritin if you have an infection, so those results are not indicative of your true levels. Ignore these till your infection has passed. You can Google for more info on this point, very few doctors know this sadly!

I would change one thing at a time and try small increments.

Your current Thyroid results do not look optimal to me.

Do you have Hashimoto’s? This can make results erratic. Also others on here state that taking T3 will always suppress your TSH so it is not that relevant. You want your T3 and T4 to be in the upper part of the range, but ultimately how you feel is the biggest guide to how much hormone you need.

[Localhero in reply to Wired123]

Ah, that’s interesting about infections and ferritin. When I’ve googled it, all I get is stuff about haemochromatosis, all very scary!

Agreed, the thyroid numbers are far from optimal. I’m wondering if, as I’ve come off T3 and my T4 is low, whether I should try to increase levo first off and see what happens. Having said that, I know I have a problem with DIO1, so there is a potential conversion issue.

On the 2 occasions I’ve tested antibodies, they’ve come back negative. Having said that, I’ve read here not all Hashi’s shows up in antibody tests 🤷🏻‍♀️

[Wired123 in reply to Localhero]

I’d stick to the non scary stuff that an infection raises your iron unless u really have a serious other condition.

I would slowly work back to the dose that made you feel best. Change one thing at a time and slowly try to get back to there. Stop if you feel over medicated of course.

All about finding your sweet spot and over medication is not the goal!

[Localhero in reply to Wired123]

Thank you. I think that’s really good counsel!

[Lotika]

Hi Localhero, My brain is a bit fried today, so forgive me if I don’t make much sense!

So, to me, your results on 100 mcg + 5 mcg T3 look pretty good. Then came COVID and the results look less good. I think this could be explained, potentially, by being unwell. When we are unwell, the thyroid likes to intervene to help out and produces reverse T3 to conserve metabolism and slow us down so that we can get better... so I just wonder if this had something to do with the odd results?

So, if they were my numbers and I thought the idea of COVID messing with them felt plausible, I’d be thinking of adding 2.5 mcg T3 in the morning... seeing how it went... maybe adding another 2.5 mcg in the evening, depending how I felt. And you’d be able to tell if T3 was causing problems by going slowly?

[Localhero in reply to Lotika]

Thanks for that. I hadn’t understood how illness might impact the thyroid. But what you say makes complete sense.

My first lot of numbers were good and I was feeling the best I’ve felt on thyroid meds, so it’s a useful measure. I think the thing with COVID was it seemed quite mild in comparison to what I’d imagined and so I’ve struggled to get my head round the possibility it was even a factor. However the tiredness has definitely lingered and then of course I got shingles which just made things worse and these new thyroid numbers seem to speak volumes.

[Lotika in reply to Localhero]

Yes, numbers like your latest ones should come with a “look away now” warning! I feel rubbish just witnessing them, let alone living them like you are! Both my frees are currently under 50%, so I know a little about that level of grot, but you’re in a whole new ballpark to me with that gutter-dwelling fT3 number!

[Localhero in reply to Lotika]

Aw thanks. I do feel completely rubbish right now. Weirdly the rock bottom T3 number was particularly reassuring that I wasn’t just making it up! I hope you start to feel better soon too. This dragging ourselves through the day is no fun!

[tattybogle]

In October, when I felt still well

TSH: 0.06 (0.27 - 4.2)

FT4: 19.2 (12.0 - 22.0) 72%

FT3: 5.2 (3.1 - 6.8) 57%

By early January I was still feeling crappy. Thyroid blood tests were:

TSH: 0.21 (0.27 - 4.2)

FT4: 16.3 (12.0 - 22.0) 49%

FT3: 4.3 (3.1 - 6.8) 32%

Perhaps i'm oversimplifying, But i wonder what would have happened ifyou'd increased T4 dose a little to try and get back to 72%, and then followed that with a decision about 'more T3 or not ?'

Maybe you didn't like (or need ?) the T3 increase because the T4 was too low for you ?

Just a totally inexperienced observation , not on T3 yet myself , so i could be spouting cobblers, but the drop in T4 and T3 levels seems an obvious culprit , (and we do keep hearing stories of peoples thyroid levels ? going wonky after covid )

[Localhero in reply to tattybogle]

No cobblers at all! I’ve had the same thought myself. If the T4 results had slumped, why did the endo not suggest more levo (oh, no, wait, let’s not go there?!) 🤷🏻‍♀️ My own hunch is to try an increase of levo before adjusting anything else.

[tattybogle in reply to Localhero]

I think 'Hunches' are as good a way of solving problems as any other , ....and they do say thyroid treatment is 'more art than science'

[Serendipitious]

Localhero,

Your Adrenal Stress Test looks pretty good. Can’t see any major signs of HPA axis dysfunction in the cortisol curve. The first result looks a tad high if one is to be picky. Do you feel any anxiety upon waking up? I haven’t done this test since they added the Cortisol Awakening Response. It’s really important to have a strong CAR what I’ve researched. Did you wake up at 4am to do it? Was that deliberate or due to sleep issues?

Not sure how you feel about the result but I’d be pretty happy with it but it would depend on symptoms. People start taking supplements to try and tweak it, but lifestyle changes and addressing stressors is more important.

However, your DHEA seems to be at the lower end of the scale.

[Localhero in reply to Serendipitious]

Thank you Serendipitious

The CAR response is the bit I’m most worried about. According to the Genova test it’s about twice what you’d expect. It wakes me up around 4.20 pretty much every morning. That’s why, when I came to do the test, that’s the time that was recorded. It seems like it sorts itself out during the day though.

I’m not taking any supplements for cortisol. Not really sure where I’d start. I have, however, stepped up stuff like meditation.

[Serendipitious]

Waking up at 4am is usually a sign of hypoglycaemia which means the body pumps out adrenaline and cortisol to release stored glucose into the body in an attempt to level it out. This can also make you wide awake.

What is your diet like? Blood sugar swings are a stressor themselves. Is your blood sugar steady and balanced? What is your sleep like? Do you wake up at other times or have restful sleep? Do you go to bed between 10-11pm? Do you watch TV or spend time on a phone/laptop before sleep? Are you eating high GI/sugary or caffeinated foods? How about before bed time? What is your gut health like? Digestion? Are you supplementing Cortisol using hydrocortisone cream for example?

Dr Carrie Jones is so interesting to listen to on the CAR:

fxmedicine.com.au/podcast/c...

Also, great video by Carrie on HPA axis and some detail on dysfunction. The HPA axis or Hypothalamus, Pituitary and Adrenal Axis describes the brain's communication with the Adrenal glands. These glands pump out cortisol, adrenaline, noradrenaline, DHEA etc.

dutchtest.com/video/dutch-f...

[Localhero in reply to Serendipitious]

Great questions. I’d say my diet is good. I’m really mindful to eat low GI carbs and proteins with every meal and snack. I go to bed bed around 9.30, read for half an hour and it’s generally lights out just after 10. I can’t eat anything 2 hours before bedtime because I take progesterone (HRT) at night and it needs to be kept away from food, according to my doctor. I drink one cup of coffee a day, usually before midday. I did an experiment with a continuous blood sugar monitor in January and during the two weeks I did it, my blood sugar dipped into the low zone once, and that was on a morning after I’d woken up early yet again. I don’t use hydrocortisone cream. Gut health could definitely be better.

I’ll watch the video and listen to the podcast with great interest. There’s gotta be something I’m missing.

Thanks again!

[Serendipitious in reply to Localhero]

Going to bed at 9.30 is even better! I take it that is oral progesterone which should help with sleep as it stimulates GABA. You didn't say whether you wake up between bedtime and 4.20am. Other things to think about are whether you have a sleep apnea or a partner that could affect your sleep. No need to answer but just think about these things. If you've listened to Carrie she speaks about these factors too.

However, my other thoughts are through the night your body for some reason is making lots of cortisol which is then waking you up at 4am and can be seen in the CAR result. We don't want too much or too little cortisol.

Hormones are all connected. Perhaps you're peri, meno or postmenopausal if you're taking progesterone. Or perhaps you're taking it because you don't produce much progesterone in your cycle but these interactions are something to think about. Progesterone supports the thyroid in the right amounts.

The website for Precision Analytical, makers of the DUTCH test has lots of education on hormones and their interaction. Dr Carrie Jones is their medical director. Hope you can figure it out.

[Serendipitious]

Localhero,

I saw this and thought of you. Thought you might find it useful regarding your CAR result:

zrtlab.com/blog/archive/cor...

Did you get any further in deciphering your results?

[Localhero in reply to Serendipitious]

Serendipitious

Thank you for thinking of me and indeed sharing that link. Very interesting.

I’m still trying to understand that test result. I asked my endocrinologist if it could have been caused by my brief foray into taking T3 and he said “cortisol has nothing to do with thyroid hormones!” (I know, right?!) However, I did an ad hoc therapy session on something else with a great bloke I know and that strange cortisol result came up in the conversation. He suggested it (the extreme early morning cortisol spike) might be linked to an old trauma. As I’ve sat with that, it’s the thing that makes most sense. I’ve had some stuff going on in my life recently which might have been triggering it without me realising. 🤷🏻‍♀️