I’m writing from France, where information about thyroid/adrenals correlation are quite inexistants , as well as doctors aware of.
One year ago I’ve been diagnostics of secondary hypothyroidism (TSH 0,6 FT4 7,9 range 9,2-17) FT3 2,5 range 2-4,4). At the ecography my gland is small (5,5cm3) but looks healthy and antibodies are negative (the doctor do not know if I have autoimmune disease???)
As the same time I realised my copper iud gives me lot of problem since 5 years , and convinced I had a problem with that I did a Htma test (hair) wich shows copper toxicity.
the praticionner who order it told me that my adrenals were suffuring too much about this situation and that I should have high reverse t3 (I’m waiting for the result) and adviced me to take adrenals glandular and replace levothyrox by iodine. I’m currently taking 50ug of levothyroxine.
Since one year , on each blood test my FT3 dot not reflet my T4, meaning that when my t4 raised to 10,9 , the FT3 lowered……
I’m lost. can a cortisol test could help me ? If cortisol is too high what should I do ? Levothyrox doesn’t seem to make me feel better.
I did a blood test panel and vitamine were ok except VIT D, very low zinc , high selenium (but low in the hair test !!..), low copper in the blood (very commun when copper toxic) and low ceruloplasmine, albumine. Little sufficiency of iodine.
My symptoms are : exhaustion, anxiety, insomnia, cold all the time, swollen face and body, new allergies, extreme PMS. I feel little bit better on evening most of the time.
I feel that thyroid meds is getting me worse but I don’t know what to do anymore.
I am waiting for the cortisol salive test.
I hope your experience will help! Sorry for my English 😃😃😃
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Ir18
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Hi Ir18, welcome to the forum. Your English is very good. But, if you want to lapse into French, that's ok. Many of us speak French.
So, I live in France, too, and I know that doctors can get very confused when you mention adrenals and cortisol. They just don't know much about it - don't know much about thyroid, either, if it comes to that! So, let's have a look at the details and see what we can deduce...
antibodies are negative (the doctor do not know if I have autoimmune disease???)
If you have secondary hypo, then there's no reason why the antibodies should be positive. It's not an autoimmune disease. You could have both, of course, but on one level, it really doesn't matter, because the treatment is always the same: thyroid hormone replacement.
However, if your problem is the pituitary, you do need the other pituitary hormones tested, and very often replacement is needed for them, too.
As the same time I realised my copper iud gives me lot of problem since 5 years , and convinced I had a problem with that I did a Htma test (hair) wich shows copper toxicity.
Well, the copper toxicity could be coming from the iud, but it could also be as a result of being hypo. Hypos often have either high copper or high zinc - most often high copper. And, as they need to be balanced, having either one high will mean the other one is low. You say that your zinc is low, so it makes sense that your copper is going to be high. I had the same problem, and I don't have a copper iud. Have you tried taking zinc supplements? That will reduce the copper level.
the praticionner who order it told me that my adrenals were suffuring too much about this situation and that I should have high reverse t3
Do you mean that the high copper is affecting your adrenals? I've never heard of that before. However, if your cortisol is too high, that could affect your conversion of T4 to T3, resulting in high rT3. But rT3 is a total red herring, because it is inert and doesn't cause symptoms.
To know how well you convert, you just need to test FT4 and FT3 at the same time, and compair them. If your FT4 is high and your FT3 low, then you are a poor converter and your rT3 is going to be high. You don't need to test rT3 itself.
and adviced me to take adrenals glandular and replace levothyrox by iodine. I’m currently taking 50ug of levothyroxine.
No! Absolutely not! Well, you can take an adrenal glandular but I wouldn't do that without testing your cortisol and DHEA first, if I were you. And, if the problem is coming from your pituitary, an adrenal glandular is not going to help.
But iodine is an absolute no-no. Your hypothyroidism is not caused by iodine deficiency, it is caused by a mal-functioning pituitary. You do not need iodine - at least, not unless you've had it tested and found you are deficent. But that's another story. Excess iodine can cause a lot of problems, and is anti-thyroid, so will make your hypothyroidism worse, not better. You need thyroid hormone replacement - T4/T3 - and you cannot replace thyroid hormones with iodine. That just will not work. This doctor knows nothing about thyroid and, to my mind, is dangerous.
50 mcg levo is just a starter dose, so I'm guessing you're very under-medicated. How long have you been on that dose?
Since one year , on each blood test my FT3 dot not reflet my T4, meaning that when my t4 raised to 10,9 , the FT3 lowered……
To be able to comment on that point, we would have to see your blood test results - and ranges! - so if you could post your latest, and perhaps a few others, that will give us a clearer idea of what is going on.
I’m lost. can a cortisol test could help me ?
Well, the first step to finding yourself is to post your blood test results and ranges, and let us explain them to you.
A cortisol test is necessary - and DHEA - to know what is going on with your adrenals. Your doctor is just guessing, and that's not good enough.
If cortisol is too high what should I do ?
We'll cross that bridge when we come to it.
Levothyrox doesn’t seem to make me feel better.
Well, it won't if you don't take enough of it. I expect you need an increase in dose. Or, maybe you're not converting very well and need some T3 with your levo. But we can't know until we see the results.
I did a blood test panel and vitamine were ok except VIT D, very low zinc , high selenium (but low in the hair test !!..), low copper in the blood (very commun when copper toxic) and low ceruloplasmine, albumine. Little sufficiency of iodine.
OK is not good enough. You need optimal. So, can you give us the numbers, please: results and ranges.
Blood tests for iodine are not reliable. A urine test would be better.
Are you taking any nutritional supplements? If so, what and how much?
More questions than answers, I'm afraid. But we do need all the details to be able to help. Guessing is just not a good idea.
I've just been TSH'd by the doctor at my new surgery - gave him both barrels - over the phone - He has never seen me and wanted to reduce my levo. It is disgraceful and I told him so (oh boy did I). He wants me to go to an endo because he couldn't come back at me. I said no I'm in rude health - leave me alone. Why would you want to reduce when I'm well. Every other parameter they tested came back great! including cholesterol. Well I'm one of the lucky ones who managed to get my thyroid hormones up in time before permanent damage occurred, no thank to Doctors - it was you guys and your collective knowledge got me well. I'm still boiling - can you tell 🤬but not at you GG😘👍😜
They always have to meddle, don't they. I think they're just trying to justify their existance. Glad you told him where he got off! Far too many passive patients around. Do him good to have one fight back for a change.
On the other hand, at least he told you, and didn't just leave you to find out when you got your new prescription.
Bienvenue. May I ask what type of practitioner told you this? I live in France, too, and am having difficulty getting diagnosed as subclinical. Also the lab I went to told me there was no point testing RT3 and I couldn't remember the reasoning for that test in the English book, Stop the Thyroid Madness. (A bit of a frustrating read for us in the EU because she warmly recommends a treatment we can't get in France, only in Belgium, Germany, and a few other EU countries). Greygoose I seem to recall STTM also links RT3 to iron, somehow? Anyways I've found some interesting information on a patient forum, Vivre Sans Thyroïde although there is a mix of mainly conventional medicine and a few people who take treatments they get in Belgium etc. They can also point you to more knowledgeable endos and GPs.
Also the lab I went to told me there was no point testing RT3 and I couldn't remember the reasoning for that test in the English book, Stop the Thyroid Madness.
They were right. There is no point. It's long and expensive and gives you no useful information that you can't get elsewhere - as I explain above. Also, there are many, many causes of high rT3, and only one of them has anything to do with thyroid, and that is when your FT4 is too high. And, rT3 is the result of poor conversion, not the cause of it.
STTM maintain that rT3 blocks T3 receptors, and that is why it's a problem. They are way behind the times, I'm afraid because they do not update their knowledge with recent research. We now know that rT3 does not block T3 receptors, it has its own receptors.
There are further complications that are very... complicated! lol And I won't go into them right now but it's to do with the deiodinase that converts T4 to rT3 also down-grading T3 to an inactive form. But that is not caused by the rT3 itself, so no point in testing it. Just test FT4 and FT3 at the same time and compare results.
Greygoose I seem to recall STTM also links RT3 to iron, somehow?
Well, I distrust anything STTM says, so not going to rush to look that up. But it could be to do with the fact that low nutrients affect conversion, so that brings us back to the points above.
I've found some interesting information on a patient forum, Vivre Sans Thyroïde
Be very, very careful of this forum. The owner is a rabid anti-T3-ite (if that wasn't a word, it is now!) She thinks it's dangerous and anyone that prescribes it is a quack. She is also very anti thyroid treatment in the Belgium Hertoghe clinics - perhaps with some good reason, judging by things I've heard recently, but she tends to throw the baby out with the bath water. There are some good things to come out of Hertoghe's protocols. One just has to separate the chaff from the wheat.
Thanks for that extra info, GreyGoose. 😊 Good word to coin, anti-T3-ite. The owner seemed moderate in her reply to me, at least, when I signed up. I was clear that I was there, amongst other things, to see if I could find any info on NDT in bordering countries.
Well, I haven't read an awful lot of books, but I started with Mary Shomon's book 'Living Well with Hypothyroidism', when I was not long diagnosed but had already come to the conclusion that my endo had no idea what she was doing! That gave me a good grounding in the basics.
I then went on to Dr Broda Barnes 'Hypothyroidism: The Unexpected Illness'. (I think that's the right title, but it was a long time ago.) And I found that very informative.
But most of my reading has been articles, interviews and research papers on-line.
Hello I live in France too and without a thyroid, my partner also has thyroid problems. This site is brilliant for helping, welcome.
There are no private tests here fore Thyroid so we have to rely on the GP or endos. They don't know enough to help so being on this site is your first help in getting well.
You are on a very low dose of Levo that is just a starter dose for someone or for a very elderly person.
Someone will come along to help you, by the way your English is better than my French.
I forgot to say that if you are a bad converter Levo to FT3 is low, then it's easy to obtain Cynomel T3) from your GP. I have been prescribed it for years. It's only a few euros per box of 30 tablets and you can split the 25mcg tablet into four.
Oh, what did you find incorrect? I didn't realize that! If you look at her website, the author is less gung-ho about natural dessicated thyroid these days, after several reported NDT quality problems in recent years. I understand even she is on a combo of synthetic T4 and T3 now. I haven't bought her most recent edition, I have the old one with the red cover.
Wahou. A big thank you for all the answers. It’s so warm from you. Despite the lack of help of our doctors here your opinion are precious. I will reply tonight🙂
first of all thank you the time you spent answering me.
I ll try to do my best to answer every point.
I think pituitary is hypophyse en English. How I could be sure I have hypophyse problem ? I don’t seem to have others hormones problem except maybe cortisol.
I think I don’t have hashimoto too, but my gland as she is small is maybe more lazy.
copper iud had definitely a bad impact on my body in my experience , copper interfere with conversion and can block thyroid production or abscess to the cells (lot of source available , one of those : drlamcoaching.com/adrenal-f...
I believe in Htma testing but I agree with you : I need to test cortisol first . I took adrenal glandular during more than 3 weeks and I didn’t noticed anything.
I really wonder if I have too much cortisol or not in half : insomnia could be from high cortisol but I feel so exhausted. Copper on the brain can be very stimulating too . I really have the feeling something inside me is Faustino all of this I mean I do not have personal problem except my health now and each time I had personal difficulty in my like I never had sleep problem.
I post here a recap of thyroid blood test it will be easier to see the evolution.we can see that T3 do not change with T4 raising. Many time the endocrinologue proposed me to raise the dose . I tried 62,5 but absolutely no improvement and I couldn’t sleep at all. Se we keep going with 50ug as she only consider Ft4 ( but she always ask for ft3 testing so she is not very logical….!!!)
I’m 48 kg for 1,68 m so I think more than 50ug could be a lot and I don’t want to take a med that do not help ….
Also , I can be wrong!, but I really have the feeling thyroid is not the root cause of my condition . Anxiety and sleep disorders do not fit with hypothyroidism. And this is why I’m questioning about cortisol now, specially after what the praticionner of Htma told me (she told me I put the pedal down having levothyrox on tired adrenals).
For those who wonder who is the praticionner of Htma she is a naturopath base in France but from USA specialised in hormones, gut health and for her all is about balancing minerals (calcium, magnesium, sodium, potassium etc). Copper problem is not well known in France but I can tell you according to all group Im belong to that it cause a lot of damage, sometimes confused with depression and things usually get worse. Can be from contraceptive pills , water pipes, vegetarian, not only copper IUD.
I’m going to do a salive test of cortisol today and I hope you will be able to give me your point of vue . If I have low cortisol should I continue taking levothyrox only ?!
Important : if some of you could indicate me the name of a good doctor/endocrinologist in Paris and around it could be very helpful.
I Ve read a lot onvivre sans thyroid but for me they are too much focus on thyroid only whereas all is connected in the body. Also they « laugh » about adrenal fatigue and heavy metals whereas I think even if some doctors are not competent and more interested about money , ignoring them is for me a big mistake.
Regarding rt3 I undestand your point of vue but in case of too much rt3, it cause more symptômes of hypothyroidism… in this sense , rt3 have a bad effect.
I Ve answered to you lower but I don’t know if it’s the good place 😁
No, it isn't. When answering someone on this forum you need to click on the blue 'Reply' button under their comments, otherwise they will not be notified that you have replied.
I think pituitary is hypophyse en English.
English: pituitary = pituitaire en français
French: hypophyse = hypothalamus in English.
How would you know if you have a pituitary problem? Well, looking at your blood tests for TSH/FT4/FT3 is a good first step:
Primary hypo (thyroid problem): high TSH, low FT4/3
Central hypo (pituitary or hypothalamus problem): low-ish TSH, low FT4/3
Unfortunately, you didn't put the ranges with your results so impossible to interpret them. Nor did you put the TSH for some of them. All three readings need to be taken in conjunction with each other, just one or two results tells you nothing much.
So, if your TSH does not correspond to the level of your Frees, then the next step whould be a head scan to see if there's a problem with your pituitary, and testing other pituitary hormones, like HGH and ATCH (which controls the adrenals and would therefore cause low cortisol if it is low).
I think I don’t have hashimoto too, but my gland as she is small is maybe more lazy.
No, that is not how it works. A small gland sounds more like Ord's, which is Hashi's but without the goitre - a small thyroid. But the only way to know is to have antibodies tested and/or an ultrasound on the thyroid. You cannot guess, you need to test.
copper iud had definitely a bad impact on my body in my experience
Then why don't you have it removed and see if things improve?
I took adrenal glandular during more than 3 weeks and I didn’t noticed anything.
Well, that wouldn't help if the problem comes from the pituitary. Adrenal glandulars are for people whose problem stems from Adrenal Fatigue.
I really wonder if I have too much cortisol or not in half : insomnia could be from high cortisol but I feel so exhausted.
Once again, don't guess, get a test. But your insomnia could also be from adrenal fatigue, where cortisol is low in the morning, when it should be high, and high at night, when it should be low. That's why we do 24 hour testing, to see how it works out through the day.
Copper on the brain can be very stimulating too
If you have high copper and low zinc, why haven't you tried taking zinc to lower the copper?
Anxiety and sleep disorders do not fit with hypothyroidism.
Oh yes they do!!! Absolutely they do. They are both symptoms of hypo.
I tried 62,5 but absolutely no improvement and I couldn’t sleep at all. Se we keep going with 50ug as she only consider Ft4 ( but she always ask for ft3 testing so she is not very logical….!!!)
So, rather than asking for an increase in levo, ask for some T3 (liothyronine/Cynomel) to be added to your levo.
And this is why I’m questioning about cortisol now, specially after what the praticionner of Htma told me (she told me I put the pedal down having levothyrox on tired adrenals).
Well, that's how it works: you can be hypo for a long, long time without noticing it because the adrenals take up the slack to keep you alive. But, they cannot do that eternally, and eventually they find it more and more difficult to cope. So, adrenal fatigue. And if your 'practitioner' realises this, why doen't she do something about it?
she is a naturopath base in France but from USA specialised in hormones, gut health and for her all is about balancing minerals (calcium, magnesium, sodium, potassium etc).
I do not trust naturopaths at the best of times. They have some very strange ideas about thyroid. And yours is doing nothing to change my opinion. If she's 'all about balancing minerals, why isn't she balancing your zinc and your copper? I am not impressed with either her knowledge of the subject, neither her treatment. I don't think she knows much about hormones at all. She's missing all the basic signs.
I can tell you according to all group Im belong to that it cause a lot of damage, sometimes confused with depression and things usually get worse.
Well, I know all that. It's a very common problem with hypothyroidism. Which is why I don't understand why your 'practitioner' isn't doing anything about it.
If I have low cortisol should I continue taking levothyrox only ?!
That depends on many things. And before commenting, I would like to see your complete thyroid testing: TSH/FT4/FT3 and ranges for everything.
Regarding rt3 I undestand your point of vue but in case of too much rt3, it cause more symptômes of hypothyroidism… in this sense , rt3 have a bad effect.
No it doesn't. rT3 is inert - that means it doesn't do anything. And it only stays in your system for a couple of hours before being converted into T2. What causes the hypo symptoms is the low FT3 resulting from poor conversion. rT3 is just the result of that poor conversion, a means of recycling excess T4. It doesn't have any other purpose and does not cause symptoms in any way at all.
I think i put all the ranges. Except TSH range is 0,24 - 4,2.
Yes a hypophyse test. But I don’t know how I would get it because my endocrinologist will not want to. That is why I’m looking for another endocrinologist in France I could reach.
But what is the name of Ords anticorps ?i dis classic one when it was negative. Also usually an atrophy thyroid has typic sign as « hétérogène » etc if Im not wrong.
I removed this devil ! I removed copper iud in October 2022. And I started to feel very bad in June 2022 when thyroid was checked. Just after removal I felt absolutely awful (detox symptoms I guess I don’t know) but from this moment I didn’t healed. I just want to add that I started to feel very bad in June 2022 after I had the Covid for the second time (no vaxxx)
Yeah make sense as I feel a little bit more waken up in the evening …. I do the test tomorrow and I ll have the result in one week I think!
One year ago I didn’t have the confirmation of excess copper yet, same for zinc. Although just before removed IUD I took zinc (I don’t remember why?) and it just give me some terrible insomnia and anxiety , and it’s typically copper dumping symptoms. I could take it but if my adrenals are too sick to make my body detoxing it will not help.
My endocrinologist will not give me t3 as she only consider t4 as active hormone.
Hum every person with hypo I know don’t have any problem like insomnia or anxiety…..! Juste depression, lazines, and sleepy all the time. In my case I can not relax at all .
I can have been hypo for a long time as we have a lot of case in my family (we are from Vietnam when there has been so many problem with health after chemical bombardment). I remember always being cold and tired in my life even when I was 18 years old (I’m 27 now) but not exhausted like I am now ! I’m not like a normal person
I think there is a confusion. My dr is a French endocrinologist, and the praticionner of Htma is a different person. The naturopath (Htma) gave me a protocol consisting in redressing adrenals first with balancing all mineral . I can undestand your position but I stay open to her position , looking for the root cause of problem and not just take meds for life. She is not doing anything , she just prefer I remineralise before starting to detox strong.
Tell me if you miss something about the range but I wrote it on the paper normally. Just missed TSH range. I will put the result of cortisol here for sure , can not wait for it. It will not solve everything but at least I will be aware of what happen exactly.
Maybe I should optimise conversion of t4 in t3 as my t4 is a little bit better. Even if my t3 lower sometimes strangely …
I don’t know wich doctor to see because I need to consider myself lucky as my Endocrinologist from now is considering secondary hypo (low TSH low t4) and it’s not the case of others dr !!! So to find one who also would accept to give t3……. Looks complicated
I don't think they do that anymore, because it's not just a blood test. Sorry, can't remember the details.
But what is the name of Ords anticorps ?
Same as the Hashi's antibodies: TPOab and TgAB. Ord's is just Hashi's without the goitre.
Just after removal I felt absolutely awful (detox symptoms I guess I don’t know) but from this moment I didn’t healed.
Have you tried supplementing zinc?
I could take it but if my adrenals are too sick to make my body detoxing it will not help.
Well, not sure that's true. Anyway, I don't think your adrenals are sick, just tired.
My endocrinologist will not give me t3 as she only consider t4 as active hormone.
Then she's very ignorant. T4 is basically a storage hormone, that doesn't do much until it is converted into T3, which is THE active hormone. You really do need a new endo!
Hum every person with hypo I know don’t have any problem like insomnia or anxiety…..! Juste depression, lazines, and sleepy all the time. In my case I can not relax at all .
When you've been reading on here for a while you will realise a lot of hypos have insomnia and/or anxiety. Anxiety is the first symptom I get when my dose is too low.
There are an awful lot of hypo symptoms, and every hypo has their own personel symptom list. It is a very individual disease.
Maybe I should optimise conversion of t4 in t3 as my t4 is a little bit better.
I have no idea how you would do that. I don't know of anyone that has managed it.
looking for the root cause of problem and not just take meds for life.
Same comment as above. Very, very difficult to find the root cause of a failing thyroid because there are so many possibilities. And not all of them can be reversed - in fact, I don't know any that can be reversed. And, if your thyroid or pituitary is damaged, there is nothing you can do about it. You need 'meds' for life. But, I do wish people wouldn't call thyroid hormone replacement - T4/T3/NDT - 'meds'. Because they are not meds in the normal sense of that word. They are not drugs, they are hormones. And if you need to take them for life, then you need to take them for life. Just like someone with type 1 diabetes has to take insulin for life.
So, your blood test results:
Looks to me like you definitely have a pituitary problem because that TSH is very, very low, but so are your FT4 and FT3. TSH should be much, much higher with those results. So, the odds are, there's nothing wrong with your thyroid - no Hashi's or anything - but your pituitary is hardly working.
And, you are now very under-medicated. You do not appear to have a conversion problem, but you just don't have enough T4 to convert!
So, if you have a pituitary problem, the adrenals are probably also going to be affected because the pituitary makes ATCH which stimulates the adrenals to make cortisol - just like TSH stimulates the thyroid to make thyroid hormones.
So, that is your root cause. And there's nothing you can do about it except take thyroid hormone replacement for life. Maybe also HydroCortisone for life, too, if the adrenals are affected.
Hey! I give a little update but I’m still waiting cortisol result.
I started glandular and decided to slow down levothyrox to 25ug and in two weeks if I’m still ok I will stop totaly.
These days I noticed my sleep is better and my water retention from hypo is better. I really think I have a high reverse t3 and a very low t3 , because of restrictive diet from 2 years.
Let’s see how things is going to something sure levothyrox never really helped and I think my problem is not the thyroid her self but others things that cause hypo to protect me . the adrenals can’t keep up with a fast metabolism So the body put the catabolic mode. This is how I see things.
I really think I have a high reverse t3 and a very low t3 , because of restrictive diet from 2 years.
I really don't think that is true. Starvation diets can cause high rT3 but high rT3 does not cause low T3. As I said before, your FT3 is low because you are undermedicated. And if you stop your levo, both will just plummet and make you very ill. Frankly, I think that idea is insane.
Levo never help you because you never took enough of it. And now you're just going to make the problem worse.
I think my problem is not the thyroid her self but others things that cause hypo to protect me
I have no idea what you mean by that? How would making you hypo protect you? It doesn't make any sense.
the adrenals can’t keep up with a fast metabolism
What fast metabolism? If you are hypo - as you are - your metabolism is slow.
And, in all your theories, you are totally ignoring the pituitary/hypothalamus: Central Hypo, which you have been diagnosed with. Stopping levo is not going to help that. But, it's your life, you must do as you feel best. Remember that we are always here to help you if things don't work out the way you plan. Good luck.
Sorry but I don’t think so, before I took levothyrox my t3 was better ! And I was exactly the same as today.
Strict diet almost like anorexia (I was close to it honestly) can bring to low t3 syndrome and high rt3. The more the body is stressed by that the most he tries to save energy in a process of a metabolic adaptation (bring to very slow metabolism of wich hypo is a manifestation)
I don’t reveived any diagnostic for hypophyse it’s just a supposition.
By that I mean, for some reason, my adrenals have been exhausted at one moment and to protect me (and help the body to continue to face) the metabolism slow, and hypo is one of the manifestation. To save energy as the body do not have enough energy. I can be wrong but it make big sense for me.
I will let you know just to confirm or not. Anyway thank you for your help of course!
hey! I just received yesterday the cortisol saliva results and even if the curve is normal (there is a peak in the morning and then decrease) it’s a little bit to low. So I’ve been well inspired to not increased my levothyroxine !
That makes sense that a naturopath is helping you. I have not found a conventional doctor or endo in Paris yet who is also knowledgeable in thyroid - as THIS forum defines knowledgeable! If I do, I will keep you posted (and please do the same for me 🙏 if you remember 🙂) I may have to go to Belgium or Germany - many doctors do online consultations now.
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Your English is very good. But, if you want to lapse into French, that's ok. Many of us speak French.
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