I just ordered a saliva cortisol test because of symptoms I've been having for a few months now that include anxiety, feeling of panic for no reason, over-emotional, poor mood, internal and external tremors, exhaustion, weakness, thinning hair, lightheadedness, cold hands, brain fog, air hunger, and pounding heart. I suspected low iron, so I had that tested and it was indeed very low. I ate a lot of red meat and took Floradix and beef liver capsules for a while and was feeling better. But a lot of the symptoms persisted, the worst being pounding heart, air hunger, exhaustion and anxiety.
So I tested the cortisol. The result is confusing to me. It's on the low side in the morning, then up, down, and high at night. Does this look like adrenal fatigue? If not, what could it mean? I rather expected it to be low. I'm not sure if it's a good or bad thing that is isn't.
I am currently taking T3 only for hypothyroidism. I tested thyroid when I tested iron (9/05/2023) and the levels looked about right for T3 only.
Thank you!
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silverequus
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You will get better responses, but while the EU sleeps, a few questions.
Your iron and ferritin are both so very very low that I will guess that the first recco will be to tackle that. You say you took supplements and felt better… did you test at that time to see what your iron and ferritin were when you felt that way? How does that compare to the above (ie, when you are feeling worse?) I’m not sure if anyone could feel good with iron/ferr numbers so low?
Your profile and past posts don’t say much about your history - why you abandoned Levo, if you are still on a steady dose of Lio & for how long. You say you were diagnosed in 2011, and that you are 24 now. Were you 11 years old when diagnosed, and what led you to find this board a year ago? Were you ok on a particular meds regiment for 10+ years and then something changed?
Your symptoms are the same as my under active thyroid symptoms, but obv your T3 is in upper range. Those symptoms are also shared by my daughter - who has iron anemia - so that is likely contributing.
Looking forward to the cortisol experts on this board to weigh in!
Thank you for the reply! I have not retested iron yet but I plan to. I think I was somewhere around 11-13 when I was diagnosed with hashimoto's and hypothyroidism. At that age I didn't take much interest in my health, I just took whatever my mom gave me. She also has thyroid issues. I was doing fine on NDT for a while, starting about 8 years ago. But we lost our source and the other brands weren't working for me so I started on T3 only. I've stuck with that because it did work. I found this board while looking for a good source for the T3. I've taken the same dose of T3 for at least a year now.
I’ll reiterate, as a next step in any case I think your iron is the first thing to fix.
Before you do you absolutely need to test a FULL iron panel BEFORE you supplement; and plan to retest regularly. Although your iron is so low right now, obviously iron toxicity needs to be entirely avoided with no question.
Iron
Total iron binding capacity
Transferrin saturation
Ferritin
High sensitivity CRP
I’m so curious though! Why didn’t an 11 year old default to a standard Levothyroxine prescription? Or did you? Changing from Levo to NDT to Lio only are statistically unique treatment outcomes that are typically chosen only after Levo doesn’t work or isnt tolerated. Was that your journey too?
Also, again, your symptom list is so familar to so many of us, wondering about the last year:
- you’ve been on your current T3 dose for a year, wondering why you switched doses a year ago. You must have been symptomatic enough to switch things up? Do you have bloods from the time you decided to change doses? Why did you switch?
- Did you actually feel well for the first 9 months of this year? You note the current symptoms started only a few months ago.
- Current symptom list sounds totally familiar, and pretty intense. I’m guessing they are familiar to you too as they are standard issue for thyroid & anemia problems unfortunately. But I can’t tell from your post if you’ve experienced them before or if some of them are brand new to you.
Okay, I'll get that test on my schedule. I've been meaning to do it.I asked my mom about when I was first diagnosed. She says I started right out on NDT, either naturethroid or Erfa. She had switched to that herself around that time so that was why. I don't remember anything making a difference for me (I was a bit oblivious to my own symptoms) until I tried the Thyroid-S brand at about 16 years old. I liked that one and felt good on it, but they had supply issues. When I couldn’t get it and no other brand worked, I switched to T3.
I ws adjusting T3 doses last year off and on based on labwork and symptoms because I was feeling hypo. I stuck with what I'm taking now (62.5 mcg Tiromel) based on how I felt. I'm looking into the iron and cortisol since my recent thyroid labs looked fine for T3 only patients, but I'm now having all those symptoms.
I have had heart palpitations and fatigue off and on for years. I'd usually adjust my thyroid dose based on that and it would help for a while before starting again. But the anxiety and poor mood, high emotion, physical weakness and lightheadedness are very new to me. I actually started feeling most of my symptoms around May this year, and then after testing and treating iron in September, some of them got better, mainly light head and weakness. Now it's mainly the anxiety and mood issues and pounding heart. Exhaustion is still off and on, but not as bad as a few months ago.
Unfortunately for us thyroid folks, all very familiar. I see you did post about a year ago on the T3 supply - but I will formally say "Welcome to the board!", you are in the right place.
We all have different starts to our stories, and as you probably figured out, those of us on this board are those where the standard Levo hasn't worked for whatever reasons I can imagine being so young and taking meds, and then growing up and becoming more aware of symptoms, and meds, and how you feel. Our bodies change through those teen and young adult years so all sorts of things were at play.
Variables are certainly things like how much Levo, how much Lio, vitamin/minerals levels, and yes, cortisol and adrenals in the mix too. But also as you've experienced - the brand of Levo, whether synthetic or NDT, the fillers in the different brands, variations with generics, frequency of changing your regiment, etc etc is equally as impactful. Also, just because NDT worked for your mom means nothing about what is right for your body (which I'm sure you know since you note that nothing else worked for you over the years, and your current meds did). But remembering there are more variables to consider, as things are starting to not work for you, and you face all those new symptoms, what most of us on the board benefit from is: patience, consistency and discipline.
A few things I've learned:
* The collective wisdom of this board - either by asking direct questions, or searching for past posts - PLUS listening to your own body & taking into account what your own doctor says - will get you on the right path. I am one opinion.... Admin posts should be given greater weight : ) but everyone all together will be able to weigh in on your specific situation with valuable experiences and advice.
* We all strive for a meds/dosing approach that keeps us stable and feeling as good as we can. A few guiding principles for that - change only one thing at a time, if it's thyroid replacement meds, only small changes, then wait 6-8 weeks to retest. We say "LOW AND SLOW"! Keep track of your symptoms so you can combine bloods with symptoms and determine the next change. Iron, vitamins, minerals, etc are also variables that impact how well those thyroid hormones work, and vice versa. Although vitamins/minerals don't NEED the full 6-8 weeks, they are still variables that can make all the difference, I personally do wait the whole 6-8 weeks when changing those too. Within those 6-8 weeks you will have ups and downs. Post on this board with concerns, but generally overall you should ride them out (of course listening to your own body & doctor, but on this board more times than not, patience is key).
* The core of getting a complete picture of thyroid health is TSH, Free T4, Free T3 and B12, Folate, Ferritin and D3. Those are the tests that anyone on this board will look for when making observations. IMPORTANT is to search this board for the testing protocol (ie, early as close to 9 am as possible, fasting, last T3 dose the day before split dose, etc., get all those all together at the same time) . Consistency is key to be able to compare anything.
I have not retested iron yet. Yes, my hypothyroidism is due to hashimoto's. I am gluten free because I eat grain free. I only do raw dairy, whoch I have found doesn’t give me the symptoms commercial dairy does.
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
SlowDragon Looking at Four Arrows brand for Iron, I see they have one that includes B12 and Folate. Since my B12 levels are already high, would it be bad to supplement that too?
I'll also add, something which likely contributed to my low iron, that I was "diagnosed" (I'm skeptical about that now) by a doctor when I was around 18-19 with hemochromotosis. He told me to donate blood for it so I've been doing that about twice a year. I last donated at the beginning of 2023 and felt bad afterwards so I stopped. I feel like if I really had hemochromotosis, only donating twice a year wouldn't have dropped my iron so low.
Would love to see the blood test results through the years. Do you have them? Do you know what the levels were when he said you had hemochromotosis? As we know iron toxicity is a real danger, but if you'd continued giving blood when your tests look like they do now, well, that certainly wouldn't be good.
Iron/Ferritin are very linked to optimal thyroid function (and body functions overall), so there will be some good guidance here on iron in general.
What I am hearing - as I noted above - is that you are at the stage of managing your health where you realize that doctors don't really know you, or know it all, and don't have time or intelligence to connect the dots, and that it is up to you to take control, ask for the blood tests you need, get copies of every single result, and be in the drivers seat on the meds/hormones/supplements and dosing you need.
I'll also say that most people on this board are in the UK and have their own unique problems with the NHS.
Can I assume you have insurance through your job? Also, do you have the same doctor (or family doctor) or have you started to bounce around as you've grown up?
Advice will be the same, but how you go about it will be night and day.
I probably have the labs somewhere; I have to hunt for them. I don't remember what the levels were. If I can find them, I'll post a picture. I'm curious too.
I do not have insurance, which is a big reason I haven't done a ton of lab tests over the years. I usually only do them if my symptoms start to affect my daily life.
I have moved a lot so I have seen a few different doctors. The one who diagnosed me with hemochromotosis retired. My current doctor is a holistic FNP. She is open-minded and listens to patients but not very knowledgeable about thyroid. She wouldn't prescribe me T3 because she was afraid she would get into trouble because of my suppressed TSH, but she did tell me of a source to buy it myself. So she's fine with me taking it.
So yes, I'm doing my own research and this board has been a great find!
Yes, the great thing about this board is that it’s smarter than all the doctors you will ever see ! Which leaves us just trying to get the blood tests and get prescriptions written. But at least the diagnostic work can largely be handled here!
.Given it’s likely out of pocket expensive to do all this stuff, can you clarify when the iron and ferritin test dates were? I can’t tell if recent or from years ago.
Also search this board for Three Arrows brand, and to understand how it differs from the iron pills you find at the drugstore, AND also how effective eating a serving or two of chicken livers a week can be too. Might save you a lot of time in bringing those levels up.
The iron and ferritin dates were from 9/5/23, so a little over three months ago.I will do that. Thank you! I'm not a huge fan of liver, which is why I took beef liver in capsule form. Maybe they make chicken liver that way too 😅 .
humanbean - flagging for a second opinion of iron, see above if you have a moment.
silverequus - iron generally doesn’t change that fast and if you’ll be way out of pocket on cost I would wonder if you could start supplementing and test again in 8 weeks. But def don’t take my word for it.
You can certainly start eating chicken livers lol! Search this board for ferritin &/or chicken liver and you will get more info. Btw nobody “likes” liver (ok, ok some people do…) but the good thing about iron rich foods like that is you can eat them to bring your ferritin up (which alone causes problems) even if your iron is in range (Which yours isn’t anyway. ) But iron pills will bring both up so you need to make sure your iron is low before taking pills.
The other thing that gives me pause is whatever was happening when you had hemochromatosis. I have no idea but still want to stay away from too much iron.
Lastly, in the big picture it would be worth your time to stick with all other hormones/regiment and just tackle iron. You will then be able to judge how much of an impact that one thing has for you.
You need more iron, but I'm not sure where you live and what options you have available to you.
Trying to improve these results with supplements in pill form could take you a very, very long time.
Just as an example, I absorb iron very poorly, and it took me nearly two years, at what was considered to be maximum dose at the time I started, to raise my ferritin from bottom of range to mid range. After I got it to mid-range I took a maintenance dose for five years and it was only after that that my iron and ferritin started rising to above optimal. When that happened I stopped supplementing.
Knowing what I know now I would approach the problem differently. I would save up and get an iron infusion done by a private clinic. There are various iron clinics around the UK (mostly England) that will do this for a fee, and no referral is likely to be required. This is just one example of the kind of clinic I am referring to :
If you live in the UK there is a possibility you might be able to persuade your GP to refer you to a haematologist to give you an iron infusion. And you might even need more than one.
I'm astonished that someone diagnosed you with haemochromatosis. There is zero evidence of it. How many years have you been giving blood? Because the results have been catastrophic as far as your iron levels are concerned. And I'm surprised that you aren't rejected for giving blood.
Have you had a Full Blood Count (FBC) done recently? If you have, what was the haemoglobin level?
Apart from iron infusions, for other ways of raising iron see these links :
I've been donating blood since those 2016 labs. So, a long time! They only do a finger prick to test hemoglobin, so as long as that's within the range they will allow it. I had a CBC done in September this year along with the iron. Hemoglobin was 11.1, the very bottom of the range.
I am in the United States and I'm sure I could have an infusion done, but I think they're pretty far out of my budget. It would be great to get fast relief though and figure out how many of my symptoms are due to iron levels and how many might not be. Two years is a long time to get to mid-range! I sure wish now that I'd kept better track of my levels.
Good morning! So iron is the immediate issue. Whether cortisol is an issue or not, is not a priority. Tackle your iron/ferritin which is most assuredly causing symptoms. Keep TSH, Free T4 and Free T3 is all your blood tests too. Iron will positively impact thyroid and vice versa. Also keep in mind if you’ve just this year stopped giving blood after so long, that too is a variable.
When my daughter had similar symptoms, I researched and found the attached graphic. Really makes the point.
Without insurance I don’t know infusion options either, but your current doctor might have suggestions. But if not, you could immediately look into Three Arrows (search that term in this board) and also start getting some chicken livers and other iron rich foods in your diet.
As Human Bean and many others have experienced - it can take months in a good scenario and years for problem cases. But you have to start somewhere.
Even with a couple months of Three Arrows iron pills my daughter can already see her hair growing in a little tiny bit more. Still has tons of symptoms but we will be getting her blood work again soon to see how much of a difference the 2 months have made. On our way.
Good morning! Thank you so much for all the help. It turns out there is a place near me that does iron infusions for $295 with a doctor's order. That's not as expensive as I've read it to be, so I'm thinking of doing that, But I'm going to retest iron tomorrow first. I hope your daughter's levels go up quickly too. I'd be interested to know how the Three Arrows is helping them!
My iron results from yesterday came back. But I'm not too happy with myself because after the test, I came home and realized that an intestinal cleanse supplement I just started taking has 15 mcg biotin in it. I've been taking it twice a day but the last dose was 17 hours before the test. I wasn't taking it during the September test.Does anyone know if the biotin dose is small enough not to make a difference? Or do I have to throw out this test?
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There is zero evidence of it. How many years have you been giving blood? Because the results have been catastrophic as far as your iron levels are concerned. And I'm surprised that you aren't rejected for giving blood.
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