Question about Cortisol: I am kinda low on... - Thyroid UK

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Question about Cortisol

marvalrus profile image
59 Replies

I am kinda low on cortisol from an adrenalectomy of one gland in April. I've been on Cortef since the surgery, on a taper for 5 months.

I've been trying to learn about thyroid since I was dx'd in September w/Hashimotos. Believe me, it was quite the icing on the cake after having adrenal issues for 10 years, to finally get the surgery, and later to become Hypothyroid. Very frustrating, but I'm dealing with it, what else can I do?

So my question is if T4 supplements lower cortisol, do I need to up my Cortef? (i do need to get labs to see where I am) But then I've read that Cortisol can interfere with the conversion of T4 to T3. So I'm kinda caught in the middle.

How do thyroid people handle taking their thyroid medication if their cortisol is low and supplement with Cortisol, but that lowers the T4 conversion? Do I need to take T3? That is pretty much my question. Thank you.

Marsha

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Redditch profile image
Redditch

Hi

Unfortunately time is the only thing that will help you work out what's best for you.

Start taking your waking temperature every morning and try one small change in one medication at a time. When your temperature is normal and you feel good. Then get a blood test because THAT is good for you. It's trial and error mostly. Sorry buddy you just need to hang on there and listen to your body. If you're not converting your FT3 will be low in your blood.don't assume you're not. Some people get on better with T3 and some NDT. Personally T 3 was a revelation and got me kick started to recovery but it made me itch terribly and I switched to Erfa. All great for a year and then I hear about another supplement that's supposed to help

Take it and either it does help and I have to drop my Erfa dose or it doesn't.

I've just dropped my Erfa dose from 2 grains to one and a half. And things change what's good today might not be in three years. You've got to manage it.

But we're all here to support

marvalrus profile image
marvalrus in reply to Redditch

What do I look for when I take my morning temp? If it's low, do I up my T4 that morning?

If it's normal, remain the same?

I'm on a schedule something like this: Right now:

75 am / 75mcg pm (noonish/1pm) for two weeks

if not better

100 / 75 for two weeks

if not better

100 / 100 for two weeks

if not better

125 / 100 for two weeks

if not better

125 / 125 for two weeks

if not better then we'll look at the numbers and add in some T3.

She also says I'm dismally low on estrogen, she may put me a supplement, but later. I'm supposed to monitor my pulse, too, before I move on to the next dose. If it gets high then I should cut back the afternoon dose.

Does all this sound like a reasonable approach? It did to me.

Thank you. Appreciate your input.

Redditch profile image
Redditch in reply to marvalrus

T4 has a long half life So taking more T4 today will kick in in a couple of days. So you take your temperature every day for a week. If you're pregnant or ovulating this isn't reliable but if not. Do yourself a table or graph. If your temp is consistently lower than human for a week then up your T4 by a tiny bit. Keep taking the temp.

marvalrus profile image
marvalrus in reply to Redditch

I know! I was shocked to learn that T4 has such a long half life, but I haven't really read how that works, so thank you.

I will def start taking my temps. Great advice. Thank you!

Redditch profile image
Redditch in reply to marvalrus

You'll need to give the little extra a couple of weeks to kick in properly. If no improvement add a little more. And keep an eye on the things that stop T4 working like vitamin D and B get them tested your D3 needs to be around 80 mine was 33 and is now 146. And take vitamin C at least 1g although most books say take 3g.

You'll get there. List everything you eat and all of your symptoms. This thing needs managing. You can do it and nobody will do it better than you. Don't ever let anyone tell you how you feel, stand up for yourself and trust yourself. You are not alone.

marvalrus profile image
marvalrus in reply to Redditch

Wow, how in the world did you get your D3 up so high? I have problems taking it. I get very tense musle aches whenever I take it. Someone told me to take K2 w/it and it really helped. But I get a little miserable sometimes when I start taking a bunch of supplements and find I feel better when I don't take any. Kind of a 'damned if you and damned it you don't" situation. I've never gotten my D past 40. I get a lot of sunshine all year because I do spend a lot of time outdoors. Garden, farm animals and yard main tenance.

What does the Vit C do? Why so much for thyroid? I have been eating gluten free since I found out about Hashimoto's. It has not helped my appetite, I'll say that. But when I do eat like pizza, whew do I get brain fog bad. I've also added Brazil nuts - I eat 6 a day.

I'll be printing out a calendar and using it to track morning temps. Thank you for that tip.

Thanks so much for the info.

Redditch profile image
Redditch in reply to marvalrus

If your D3 is 40 the T4 won't be working. Must do better. Go to the Caribbean for Christmas.

marvalrus profile image
marvalrus in reply to Redditch

Great idea =) I will try taking the D again. Maybe I'll try with just 200IU twice a day. I'm serious when I say D3 tenses my muscles. I thought I was the only one till I found a doctor (chiropractor) who suggested to add K2 (MK7). It did work. But all in all, it seems every time I start adding supplements to the mix I begin to feel awful. Stop taking them, feel better. It's so weird. I used to take B vitamins all the time since I was a teen. Now I get the Niacin flush. Just came out of nowhere. Never had that reaction before, so I have to take a Bcomplex that has no more than 25mgs. I think my adrenal problem had a lot to do w/newfound allergies. Eggs, red meat, and probably gluten, but didn't know so till Hashimoto's. Now when I eat gluten, I feel like poop, more directed towards brain fog.

Redditch profile image
Redditch in reply to marvalrus

Maybe Adcal would be better when you're so D deficient get on free prescription from doc then try D3 straight after you've got it up to about 60. Some people are just over sensitive. I've always got on very well with D3 gel capsules. Can't do B at all. We're all different.

marvalrus profile image
marvalrus in reply to Redditch

Is Adcal the D2 that Docs prescribe in 50,000 IU for like a week? My sis took that and it def boosted her Vit D levels, but I've read it's kind of like a "false positive". And then yes, she followed up with store bought Vit D gel caps. Like 2000 IU. I can handle a teaspoon of Cod Liver Oil which does have Vit A and Vit D, 400 IU per teaspoon. No problem, no muscle tensing. You said it, we're all different.

Redditch profile image
Redditch in reply to marvalrus

its Calcium and Vitamin D together, revolting chewable stuff, but sometimes you need both to get the process going and you will certainly need lots of C so if you can only take one supplement, make it C.. try to stick with it and when you're used to it, and ADCAL.. and when you're used to that and your D comes up a bit drop the Adcal for straight up D. Be gentle but give it some time... or do codliver oil... or get a Caribbean Holiday..

Good Luck....

marvalrus profile image
marvalrus in reply to Redditch

: D Excellent advice. OK I see what you're saying, and I think it's worth a shot at trying. Thanks!

Redditch profile image
Redditch in reply to marvalrus

When I started D3 5000IU a day I was going to the Gym every day in an attempt to lose weight (idiot). I would manage around 20 minutes of not very strenuous anything, sit in the sauna for 20 minutes and go home for a nap!.. I kept a very good diary of temperature and weight and waking pulse and symptoms and I noticed a very strange thing..

Adcal you can't take at the same time as Thyroxine, they don't like eachother (I think that's the calcium you need to leave a gap) so sometimes I took Adcal first thing and went to the gym sometimes I took thyroxine first and went to the gym

If I took the adcal first, I had more strength at the gym, could lift more weight and had more stamina than the days when it was the other way round. I also noticed that my eyesight improved. So I really must have been deficient for a long long time I think.. I am lucky, I have always earned good money and the year before I was diagnosed I had 5, yes, 5 holidays, the year after I got my D3 back up I had one holiday, because my body was clearly telling me I needed a holiday with my D3 in my boots and it didn't need to when I got it back up...

You will find your way, but you need to give everything time before you dismiss it or think it's great. There's no rushing it I'm afraid. You need to learn every single little quirk of your body.. some counts are good to record.. how many times in a day did you say "I can't be bothered".. I don't think I said that once in 40 years and then said it 5 times a day or "I'm starving" or "I'm Freezing"... End every day with a score for your day.. and if and when you get a few good days in a row check out the diet and regime and see if there is something that you can identify same if you have a few bad days on the trot...

Curry gives me a bad stomach so I only do it on the odd Friday and am recovered for work on the Monday.. Potatoes give me itchy dry skin on my elbows so I give up for a month and then indulge for a week in a cycle...

It's madness to those outside the condition, I bore myself to death with it, and doubtless you will too...

4 years ago I was in bed for 5 months

I had to give up my business

Now, I am a senior director in a blue chip international company

and just about all of that recovery was me, reading, trying, sometimes failing, risking all sorts of combinations and asking for advice on here.. whatever you take you'll find people who say DON'T, you may die, you're not a doctor.. etc.. But I know plenty of doctors who are idiots and I know they did half a page in 5 years med school on our condition, we live it, we are intelligent, and we are the best ever advocates for our own health.

I read everything.. and I check out the authors for links to any drug companies that may bias their focus, it took a long time and I still have bad patches that my Endo calls Thyroid Storms when nothing agrees with me and I have to stop all meds and all supplements for a week and then start up again slowly one by one..

It's a bit of a pain, but the good times are great and the bad times aren't half as bad as that 5 months in bed with an idiot of a GP telling me it was in my head.

LAHs profile image
LAHs in reply to Redditch

What a great post Redditch, you are right on with all of it.

marvalrus profile image
marvalrus in reply to LAHs

Wow, that is really something, Redditch. I can relate because I've had such issues with my adrenal glands for 10 years. It truly set back my life, and my intuition is what got me through. I went from a very active person that enjoyed life to what now seems like a hermit. And I don't care, I'd rather live like this than go places and be a burden to who I'm with. My whole family has adjusted to my ups and downs though so I am grateful for that. It is such another kick in the teeth though to now find I'm dealing w/Hashimoto's. I think because of my adrenal issues though, I'm already kind of "used to it" but this is a bit different.

I do have a feeling (now that I have this) that I have perhaps been low thyroid for maybe years. I did get tested periodically but they always came back normal. But as I look back on old tests from 2010 even, I see that my TSH was hi end of normal and my T4 and T3 was on the low end of normal.

You're right, it's all about recognizing what works and what doesn't. I did see that calcium interacted with T4 conversion and to not take it but after 4 hours. Interesting how it made you stronger. Seems the only thing that makes me stronger and able to cope is a big fat Ibuprofen pill. I don't take them all the time, only when I just can't take it. Seems like it resets my pain threshold. IDK.....I'm just going to deal with this the best I can. Sure am glad I found this site.

Thanks for your input.

faith63 profile image
faith63 in reply to marvalrus

i wouldn't supp much.

faith63 profile image
faith63 in reply to Redditch

Vitamin D is low with autoimmune disease for a reason. It may be self protective. Many will not supplement D, due to possible adverse effects and general lack of evidence about what it can do or if its safe.

marvalrus profile image
marvalrus in reply to faith63

This sounds very logical to me. I know others might say otherwise, but one of my doctors kinda thinks along the same lines. She told me not to worry about it right now. If it was really low, like 10 or 15 I should supplement, but for now she said lets get on with other things, like lowering inflammation. She gave me a different Vit D test, and I came up at 41 which was in the normal range, but the low end of that test, too. But she totally dismissed the Vit D for now. I'm glad to hear you say this! Not many people get this because there's SO much emphasis on Vit D today. I mean, we really have to ask ourselves WHY so many people are deficient. It's epidemic. You have to wonder if the ranges are correct. Seriously its like the world population is low. So is there something wrong with the range chart?

faith63 profile image
faith63 in reply to marvalrus

i am very suspicious of it! Awhile ago, coq10 was considered the fountain of youth and very expensive, sought after supp, now they know it isn't true.

faith63 profile image
faith63 in reply to Redditch

there is a d3 toxicity, your level is too high,, which causes symptoms. should be about 100.

Redditch profile image
Redditch in reply to faith63

We're all different and it ialso depends on your ethnicity and where you were living as a tiny person 200 is the upper sort of liimit for me 140 is great. Barry Durrant Peatfield book says he thinks thyroid patients need a mimimum of 80 to be optimally replete.

faith63 profile image
faith63 in reply to Redditch

i am just not sure that supplementing is safe, they just don't know enough yet.

LAHs profile image
LAHs in reply to marvalrus

Marvalrus

Remind your doctor that estrogen interferes with thyroid meds - it uses the same transporters that the thyroid hormones need. The transporters are called thyroid binding globulin or TBGs.

Same goes for blood pressure meds and aspirin (plus some other meds which I cannot recall at the moment.)

marvalrus profile image
marvalrus in reply to LAHs

This is very interesting. Can you please tell me more about it or perhaps have a good link for this info? What about Ibuprofen?

She did say she only wanted to give me a small amount. Perhaps she knows? What I like about this doctor is that SHE has Hashimoto's! She knows all about how the doctors out there treat their patients, and she basically had to figure it all out herself.

I take an ACE-Inhibitor blood pressure pill. I've looked to see if there's an interaction between Lisinipril (Prinivil) and Synthroid and it didn't show anything bad. But I still wonder. I can't stand taking it. I hoped my surgery would really help that. It did a bit. On one pill instead of two.

Thank you.

LAHs profile image
LAHs in reply to marvalrus

Here are a couple of links Marvlarus, it is quite mind boggling. I used to take CoQ10 and stopped taking it - but forgot why. I just found out, it interferes with Th meds.

Anyway, be amazed:

drugs.com/drug-interactions...

drugs.com/drug-interactions...

Actually if you Google "Thyroid meds drug interactions" you can find hundreds of them and worry yourself to death.

Oh, and yes to ibuprofen, sorry.

marvalrus profile image
marvalrus in reply to LAHs

I was astounded what effects T4 supplements. Yep, I looked this list over when I first started taking Levo (which I later switched to Synthroid, which I think doesn't cause as much palpitations). I was def amazed at how many interactions there are. But guess what? Cortef has no interaction. And this is why I was kinda surprised when I read about the T4 to T3 conversion. That's one amazing list.....

thank you.

But what about these TBG's?

faith63 profile image
faith63 in reply to marvalrus

You are not supposed to take thyroid meds, until your cortisol is normalized..it is in all the literature on the thyroid meds. Do you have a medical id, type of card or bracelet? You need one!

I would focus on healing your immune system and putting the hashis into remission.

marvalrus profile image
marvalrus in reply to faith63

How do I go about doing that? Healing the immune system? Trust me, I'd love to put this Hashis into remission.

My remaining adrenal gland is doing fairly well. The other one put it out of commission for many years causing it to atrophy. Many people wait months for the other adrenal to 'wake up' and mine only took about a month. I was rather elated to see my tests register for ACTH and Cortisol soon after. Things were progressing nicely until 'other symptoms' came along. Was very

disheartening to learn of this newfound Hashimoto's.

But we do have to just deal with whatever comes our way the best we can. There is so much to learn though. It's like starting over.

How can I 'heal my immune' system? Very interested.

faith63 profile image
faith63 in reply to marvalrus

Why was your gland removed?

Are you swollen or, what symptoms do you have?

Why are they weaning you off HC?

I will answer back soon, need to know, this first. Have some experience here. Taking temperatures is not useful, which is against popular belief and really not the way to go, actually. There are many reasons temps are low, including heredity. Mine were always low.

marvalrus profile image
marvalrus in reply to faith63

I answered you on this post somewhere else maybe about 15 minutes ago.

faith63 profile image
faith63 in reply to marvalrus

i will reread tomorrow, when the "fog has cleared"lol!!! really, not very funny, is it?!!!

Redditch profile image
Redditch in reply to marvalrus

You could read Datis Kharazians book ic you really want to fry your brain but I would leave it a few years

The internet is full of rubbish. You can find three studies on a supplement one is for one is against and one is inconclusive. If you read the books you go with the author on a journey and learn the thinking. Barry Durrant Peatfield Your Thyroid how to keep it healthy is an excellent start.

marvalrus profile image
marvalrus in reply to Redditch

I'll check that out. thank you

kjc1tisdell profile image
kjc1tisdell in reply to marvalrus

Hi hope you don't mind me butting in the conversation. I have very severe low cortisol and have for many years. Have no thyroid and have low estrogen levels. I have been taking methylpregnisolene for the exact opposit of which you stated earlier. I was told the cortisol helped the t4 convert. That is why before taking thyroid meds the adrenal should be working properly. I would like to know who told you that cortisol stopped t4 conversion as I wonder if this is why I am so sick.

thank you.

kjc.

marvalrus profile image
marvalrus in reply to kjc1tisdell

I read this on the website HypoThyroidMom. I thought this was a rather reputable website, but I'm hearing the complete opposite from people here, and on top of that, I was just listening to a video by a doctor that has "Hope for Hashimoto's" Youtubes. And he too say how crucial it is to have a good range of cortisol to assist T3 to enter cells, or something like that.

But here's the link where HTM says Cortisol prevents the T4 to T3 conversion, it says it in the beginning of the article, just a little bit down.

hypothyroidmom.com/cortisol...

Gismo333 profile image
Gismo333

Hi T4 should always be given with T3 as you need to ensure that you have T3 entering the receptor sites. If T4 doesn't convert to T3 then your receptor sites on the cells will be starved.

Cortisol must be balanced otherwise the conversion of T4 to T3 can't happen. If the cortisol is very high then it can interfere with thyroid hormone, but too low cortisol will also result in the thyroid hormone sitting in the blood, especially if it's T4 only. It's all to do with balance.

I would run a saliva test for your cortisol as this is far more accurate than blood.

Cortisol doesn't inhibit T4 conversion it helps it.

Get a thyroid symptom sheet and highlight all the symptoms you have. The thyroid symptoms overlap adrenal symptoms as they work together. Check your pulse, it should be around 70 beats per minute before rising in the morning.

Get your FT3 FT4 and TSH tests done. These are only a guide and must not be taken as gospel. If taking T3 then the TSH will be suppressed. TSH should be lower than 2.

Hope this helps.

marvalrus profile image
marvalrus in reply to Gismo333

Well, I guess since I've only been Dx'd Hashimoto's since September, the docs are going the T4 route for now. One doc did say T3 is def an option later on, but it all takes time....... Holy moly I went 10 years with adrenal problems and now this.

I would love to try T3 right now, but I'm sure they are going to wait until my schedule of T4 increase moves along, and if my symptoms aren't improving, adding in the T3.

This is what HypoThyroidMom dot com said about Cortisol. #2 is what caught my attention

𝟏. 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐝𝐞𝐜𝐫𝐞𝐚𝐬𝐞𝐬 𝐓𝐒𝐇, 𝐥𝐨𝐰𝐞𝐫𝐢𝐧𝐠 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐡𝐨𝐫𝐦𝐨𝐧𝐞 𝐩𝐫𝐨𝐝𝐮𝐜𝐭𝐢𝐨𝐧.

𝟐. 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐢𝐧𝐡𝐢𝐛𝐢𝐭𝐬 𝐭𝐡𝐞 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐢𝐨𝐧 𝐨𝐟 𝐓𝟒 𝐭𝐨 𝐚𝐜𝐭𝐢𝐯𝐞 𝐓𝟑, 𝐚𝐧𝐝 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐞𝐬 𝐭𝐡𝐞 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐢𝐨𝐧 𝐨𝐟 𝐓𝟒 𝐭𝐨 𝐫𝐞𝐯𝐞𝐫𝐬𝐞 𝐓𝟑.

I'm going to get all my labs done very soon. Cortisol 4x tube saliva, TSH, T3, T4 and even RT3. When I was first Dx Hashi, my RT3 was in the low range. I can't find hardly any info on what that means. Mostly people are either high or in range. Now that I'm on all this T4, I hope my RT3 is normal and not high. Can low RT3 be a problem?

lozon profile image
lozon

i'm on prednisone and t3.

I also have prostate cancer and low testosterone from its treatment.

This also limits conversion.

Since we have to take the meds All we can do is check the labs and adjust the dose accordingly.

marvalrus profile image
marvalrus in reply to lozon

I'm going to buy a 4 tube saliva test. I've only had morning cortisol blood draw since the surgery, about every other month. After being on T4 now for about 2 1/2 months I'd rather know how the whole diurnal rhythm is going.

I am interested in trying T3, but I've been told this option is down the road, a more months of increasing T4 to see how it goes.

Thanks and best to you.

Gismo333 profile image
Gismo333 in reply to marvalrus

Hi there are quite a few doctors now that give T4 with T3 and it really is essential. If you are given T4 and it won't convert totally then you will be starved of T3. The only way you are going to know is not by the bloods but by your symptoms and how you feel.

I'm not sure if it's an option for you but I go to Brussels once a year to Dr Hertoghes clinic where they do very very expensive testing and physical examination. If you want to know more then please private message me. Thanks

marvalrus profile image
marvalrus in reply to Gismo333

I do have one doctor that is def onboard w/T3, but not just yet since I'm only been taking T4 for about 10 weeks now. I'm in Virginia USA.

greenhills profile image
greenhills

Hi Marsha I'd love to know more about this low cortisol and thyroid meds thing myself. I have been on thyroxine for 51 years after a thyroidectomy at age 10. All was well until I hit menopause and I began to feel very off and very fatigued. And as time has gone on lots more symptoms that never have I had in my life before. I have questioned this conversion T3/T4 many times over this low cortisol issue as I've felt it may play a part. I'm told by my endo that my T4 conversion all working good. Anyway, I've resisted the HC meds so far for the low cortisol as I want to suss out why this thing has gone wrong and sure its the right thing. I went private 2 years ago for a consultation and was told that simply I wasnt on enough thyroxine. Its all very messy not knowing the exact point at which things changed. I'm on 100 mcg levothyroxine these days, up from 75 mcg and feel no better whatsoever. Ultrasound scan showed adrenals normal size etc. I dont know what to think but lots of years have been wasted feeling ill. Probably I will end up taking replacement cortisol but its all very complex. I hope you find out a bit more about all this. x

marvalrus profile image
marvalrus in reply to greenhills

Hi Greenhills,

Have you ever taken T3?

I'm also menopausal and one doctor wants to put me on some estrogen. She said my numbers were dismal at best. She assured me it's nothing to be afraid of and unlike what you average AMA doc prescribes, such as Premarin. She too wants me to stay on my Coritsol dose if my labs are still low.

I've only been dx'd Hashimoto's since September, so the whole thyroid thing is new to me, but now that I'm on some T4 (Synthroid) I have to wonder how long I've been hypothyroid and thought it was my adrenals. It's kinda hard to differentiate, the symptoms do overlap. But I knew after my surgery, a few months later, that something felt very different, kinda the same but different. It was thyroid. And now I keep wondering if the Cortisol supplements just put whatever T4 I was making out of business.

I recently read this on HypoThyroidMom dot com and it sent me into confusion:

𝟏. 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐝𝐞𝐜𝐫𝐞𝐚𝐬𝐞𝐬 𝐓𝐒𝐇, 𝐥𝐨𝐰𝐞𝐫𝐢𝐧𝐠 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐡𝐨𝐫𝐦𝐨𝐧𝐞 𝐩𝐫𝐨𝐝𝐮𝐜𝐭𝐢𝐨𝐧.

𝟐. 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐢𝐧𝐡𝐢𝐛𝐢𝐭𝐬 𝐭𝐡𝐞 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐢𝐨𝐧 𝐨𝐟 𝐓𝟒 𝐭𝐨 𝐚𝐜𝐭𝐢𝐯𝐞 𝐓𝟑, 𝐚𝐧𝐝 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐞𝐬 𝐭𝐡𝐞 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐢𝐨𝐧 𝐨𝐟 𝐓𝟒 𝐭𝐨 𝐫𝐞𝐯𝐞𝐫𝐬𝐞 𝐓𝟑.

I got to where I just felt my Cortisol was useless, because the T4 made a difference in how I felt, whereas the Cortisol didn't seem to effect me at all. Sometimes it made me feel worse, so then I just stopped taking it. Now I started back to taking 5mg in the am to give me a boost in case I'm low, but I'm going to order the diurnal 4 tube saliva test, so I'm going to stop taking Cortisol so that when I take the test it won't have any implication in the results. Cortef only has a 6 hour half life. Shew....it's so confusing to me. There are so many variables it's incredible. My goodness, I truly can't get a hold of it. At least not right now.

Thanks for your input.

LAHs profile image
LAHs in reply to marvalrus

Marvalrus,

It is a complex system but don't give up, keep reading and studying the subject. The problem is that doctors don't know what they are doing either so you have to stay one jump ahead of them. You do this by learning every detail you can, read, read and read again - and read web sites like this one.

marvalrus profile image
marvalrus in reply to LAHs

: ) Oh believe me, I do know that doctors are flat out ignorant when it comes to the endocrine systems, even the endocrinologists. I really looked hard lately and I've found two 'thyroid' doctors that are ready and willing to NOT look at me like a blood test result. One of them doesn't even want me to waste money on blood tests. She just wants me to feel good, and whatever and however we get there is the best way. Sounds good to me considering what I've been through for 10 years with my adrenal gland. Endo #5 was the only one who helped me with that, but this all came after SHTF anyway. I think that's what they do, wait till SHTF and then act. It's like they really don't want you to feel better, but once they get in a situation where there's no denying it, then they do something.

It's great to have found this website. I really like it. Wide mix of people and lots of good advice.

Thank you.

marvalrus profile image
marvalrus

I'm going to buy a 4 tube saliva test. I've only had morning cortisol blood draw since the surgery, about every other month. After being on T4 now for about 2 1/2 months I'd rather know how the whole diurnal rhythm is going.

I am interested in trying T3, but I've been told this option is down the road, a more months of increasing T4 to see how it goes.

Thanks and best to you.

faith63 profile image
faith63

I have so much to ask you, i have low cortisol too, possibly from pituitary damage.

Why was your gland removed? Are you swollen or, what symptoms do you have? Why are they weaning you off HC?

I will answer back soon, need to know, this first. Have some experience here. Taking temperatures is not useful, which is against popular belief and really not the way to go, actually. There are many reasons temps are low, including heredity. Mine were always low.

Thanks

marvalrus profile image
marvalrus in reply to faith63

Have you ever had your ACTH tested? It's a must have test for low cortisol.

I had an adrenal adenoma on the cortex of gland. The outer portion. It was secreting Cortisol whenever it wanted to, however, it did not over-secrete, but even so it caused symptoms. It put me into menopause at the age of 40. I'm 50 now. Because the adenoma was secreting Cortisol, my pituitary did not secrete ACTH (the chemical that tells the adrenal gland to make cortisol). So this caused my other gland to atrophy.

After the removal, I was put on Cortef. A high post-surgery dose. Then when I went home I was given a regimen of I think 20mg am and 10mg pm (2 o'clock). After just a month I was registering ACTH for the first time in 10 years. My cortisol was only 5, but that's ok. Every month thereafter it was going up and everything just looked great. That is until I started feeling something 'different'. And yes, it was Hashimotos. UG.

So my endo told me to just continue at the cortisol level I was on and just stay there until further notice. It's very low, only 5mg am and 2.5 pm. However I do feel that I might be running a bit low these days. I'm due for all new labs so I will get them in the next couple weeks. I'm very curious to see what all of it is.

The taper is recommended in order to get the adrenal gland working again. If I had been given a replacement dose it would not have encouraged the adrenal gland to get to work.

If we replace cortisol, the Pituitary chemical ACTH will shut off. The same way T4 replacement lowers TSH. You can supplement Coritsol, but it is never recommended to replace it. The only time we should take a replacement dose is if we have Addison's disease. Otherwise, only supplements of low dose should be used.

I am actually afraid to end my cortisol supplement. If that ever happens, you better believe I'll be wearing a bracelet. It's very rare to have an Addisonian moment, but it can happen. It comes on very gradually though and there are definite warning signs well in advance. What do you mean am I swollen?

faith63 profile image
faith63

i will have to answer more later. i am so tired. I swell with fluid and you can't pinch my skin. It is thick...called myxedema, put i also retain water, edema, which was terrible on HC. i had to stop it. At 20mgs, i was gaining 3 lbs per week. Do you have this?

i feel very tired, some dizzyness, a woozy, dizzy feeling, very prone to headaches and brain fog, migraines, visual issues like blurry vision, visual migrains, eye puffiness. Flu like episodes and stiff muscles..do you have any of this?

Yes, ACTH stim test, and ACTH blood, but that is not nearly enought. The stim was normal, cortisol and acth, serum , both low. saliva cortisol is all under range, urinary too. I was due to have a tests that would show if i was partial secondary adrenal insuff. but, i never did it, due to fear of it being unsafe. You need an id, to alert medical personnel, that you are on HC replacement, because you could have a crisis , if you go without for any length of time and would need to "stress dose" in case of injury [unconscious in a car accident etc..] or illness.

marvalrus profile image
marvalrus in reply to faith63

Wow, I had had/have all that except for the myexdema. I used to take a diuretic but after the surgery, no more. Mainly because it would mess with my electrolytes.

I found that I could NOT take generic Hydrocortisone. It had to be CORTEF. Don't ask me why but prior to my surgery I was on a discussion board for adrenalectomy and MANY people could not take generic HC. After the surgery, I began to take the generic HC and got palpitations and many of the symptoms you describe. I got the Cortef, and voila, the palpitations subsided and so did other symptoms, but not all, but a lesser degree.

See about exchanging the generic for Cortef. I take 5mg am and 2.5 pm, but to be honest, I feel better when I don't take any HC. But sometimes I feel very weak, and I can feel it's low cortisol. So I do take some, and BAM, first thing that happens is the brain fog and blurry eyes come on. I hate it. The T4 I take now has improved that, but taking HC makes it come back! It's very frustrating.

Def, if your ACTH is low, then your cortisol will be low. Maybe you need a brain MRI to check the pituitary. What was the test you didn't do called? Was it adrenal vein sampling?

You are right... I do need a bracelet/ID. Thank you.

faith63 profile image
faith63 in reply to marvalrus

i need an id too, in case, although i am not properly diagnosed.

I have a squished pituitary. its called an Empty sella..i am so tired that i am messing up my capital letters! Seems too much an effort. can i talk to you tomorrow? I am so brain dead! How about i PM you or something?

oh.. my vision gets worse when i swell, so i think we both have it from excess fluid. HC makes you retain fluid. I have had to order HC online, and i think i will take 2.5 in the AM with my thyroid meds..t3. I don't convert the levo, well so i was put on t3 only.

Tommorrow we will talk about the immune system, which doctors are so ignorant on, but you can put that hashi's into remission. they say low cortisol can cause hashi's due to cortisol, inflammation and the immune system are connected. ..we are in a mess! i am working on my immune system now. How is your Gut feeling..do you have digestion issues? sometimes my food just sits there and i have to throw it up, just so i can breath! Actually, that has not happened much in the past 2 months, since i started working on my Gut.

marvalrus profile image
marvalrus

I am just starting to take T4. It's been about 10 weeks, so I doubt I'll be put on T3 just yet. But I am very curious because so many people say that was what made them feel well. Good that you took matters into your own hands because if we rely on the regular doctor we'll never feel well.

Gismo333 profile image
Gismo333

The adrenal glands which produce cortisol and the thyroid gland work in unison together, both have to be balanced. Too much thyroid hormone stresses the adrenals and too little thyroid hormone can also stress the adrenal glands, it's a delicate balance. Too much T4 in the blood without T3 can also stress the adrenals.

T4 does not lower cortisol, I'm not sure who told you that? If for instance you were on 200 mcgs of T4 and no T3 and you had low cortisol anyway then you wouldn't be able to convert it and so the adrenals would be stressed. If your adrenals are a little low and you are taking cortef to correct the imbalance then you should be fine, however, as I've said before I don't agree with T4 only as it puts an added stress on the adrenals to convert it to T3.

How much T4 are you taking and how much Cortef?

Before starting any thyroid medication the adrenals should be measured by a saliva test, ie 4 measurements throughout the day. The ACTH test is not accurate as there is too much going on in the blood, saliva is best.

Once the adrenals are looked at then if there is an underlying thyroid problem then T4 and T3 can be taken. It should not lower the cortisol levels unless you are taking huge amounts or you are taking T4 in excess on it's own.

Some people have an adrenal thyroid problem, others a thyroid adrenal problem. Without thyroid hormone over a period of time the adrenals will get stressed out and visa versa.

I have a document you might like to read if you private message me and give me you email address.

I am a patient of Drs Lowe and visited the USA on many occasions, I am now under Dr Hertoghe's practice in Brussels Belgium where they measure all hormones but, more importantly they do a physical examination. Remember all tests are a guide, especially the TSH test which I think is not a good measure and neither is FT3 and FT4 as they are only measuring how much thyroid hormone there is in the blood not in the cells.

My tests were fine, T4 only and I lost most of my hair, had ME, CFS and was covered in Fibromyalgia so I was unable to walk properly for 18 months, practically bedridden, I cannot stress the importance of T3.

marvalrus profile image
marvalrus in reply to Gismo333

I read this info on HypoThyroidMom, which I thought was a reputable website.

Says it on this page:

hypothyroidmom.com/cortisol...

scroll down just a bit to read where it says

𝟏. 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐝𝐞𝐜𝐫𝐞𝐚𝐬𝐞𝐬 𝐓𝐒𝐇, 𝐥𝐨𝐰𝐞𝐫𝐢𝐧𝐠 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐡𝐨𝐫𝐦𝐨𝐧𝐞 𝐩𝐫𝐨𝐝𝐮𝐜𝐭𝐢𝐨𝐧.

𝟐. 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐢𝐧𝐡𝐢𝐛𝐢𝐭𝐬 𝐭𝐡𝐞 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐢𝐨𝐧 𝐨𝐟 𝐓𝟒 𝐭𝐨 𝐚𝐜𝐭𝐢𝐯𝐞 𝐓𝟑, 𝐚𝐧𝐝 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐞𝐬 𝐭𝐡𝐞 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐢𝐨𝐧 𝐨𝐟 𝐓𝟒 𝐭𝐨 𝐫𝐞𝐯𝐞𝐫𝐬𝐞 𝐓𝟑.

I'm on 75mcg am and 75 mcg pm. I take a 5 mg Cortisol am and 2.5 pm.

The reason I take a low dose of cortisol is to encourage my remaining adrenal gland to work. If I take a higher dose it could put it "back to sleep".

I was told by my endo to not taper my cortisol now, because taking T4 can lower cortisol, so just stay where I'm at.

Yes, I'd appreciate any information you may have that's helpful.

Gismo333 profile image
Gismo333

Are you splitting the T4, if so there is no need it has a 4 day half life so is normally recommended in one dose on an empty stomach, no food for 30 minutes in the morning. Never take the cortisol near the thyroid hormone.

Excess cortisol wipes out some thyroid hormone however, insufficient also inhibits thyroid hormone. Cortisol activates the thyroid hormone that is in the blood as it helps with conversion. It may help you to read Dr Hertoghes book The Hormone Solution and also Dr Peatfields book, The Great Thyroid Scandal and how to Survive it.

If you need cortisol then you need it but only by a saliva test. If the test comes back ok then it shows that you don't need it. I hope this helps

marvalrus profile image
marvalrus in reply to Gismo333

I just got through watching a series of videos called Hope For Hashimoto's.

He said that T4 has a half life of 7 days. Have you ever seen this person on Youtube? Dr. Haskell. Very interesting the whole thing, and yes, he did say normal cortisol levels were needed. The series seems to be geared towards someone who is newly dx'd. Yep, not sure what my corisol level is at the moment, last I checked it was 9 in the am. I'm def doing a saliva test for the next test.

Thanks for the info.

Gismo333 profile image
Gismo333

I'm afraid that doctor is incorrect, T4 has a 4 day half life, ie it takes 4 days to build up in the body and 4 days to clear the bloodstream. It is written in many books. Good luck with the test.

helvella profile image
helvellaAdministratorThyroid UK in reply to Gismo333

Really?

My memory and at least this on-line source suggest around 7 days:

The long half-life of thyroxine of about 7 days allows treatment with a singly daily tablet.

thyroidmanager.org/chapter/...

marvalrus profile image
marvalrus in reply to helvella

LOL, well I'm new to all this, so I'm just going to go with the understanding that T4 has a pretty long half life in the blood stream! I was amazed when I first learned this. I thought it washed out daily and thus why you take it daily. It's interesting. I wonder why it lasts so long?

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