I have been gluten and dairy free for many years and I have a clean diet
Last dose of T3 12 hrs before test
I think my T4 looks to high for the small amount I am on! I have tried to put the T4 up by 6.25mcg but can’t tolerate it.. I get more ulcers in my mouth, shaking and feeling awful
I spilt T4 37.5mcg am and 25mcg afternoon.. I can’t tolerate any meds bedtime, or in the early hrs of the morning.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
You may need to take prescription around to different pharmacy
Ring or ask around to find a helpful pharmacy
Small independent pharmacies often much more helpful
Hi- im not 100% sure but I thought when you are taking ACE you should stop it for at least a few days before doing saliva cortisol test as it will give you a falsely high reading.....
I'm just guessing here, but is Klaire AC an Adrenal glandular product? If it is then it probably explains your above range cortisol, because Adrenal glandulars contain cortisol.
You provided these results from a Genova saliva cortisol test.
7am. 14.82. Ref range. 2.68-9.30
12 3.37. Ref range. 0.75-2.93
4pm. 1.88. Ref range. 0.36-1.88
10pm. 0.99. Ref range. <0.94
DHEA. 0.15. Ref range. 0.25-2.22
And this result from a cortisol blood test
15th Feb
538. Range 133-537
The reason the saliva tests and the blood test for cortisol produce results that are wildly different is because they aren't measuring the same thing.
The saliva test measures Unbound Cortisol, the blood test measures Bound Cortisol.
Unbound Cortisol can be thought of as "Free" or "Active", although those aren't the descriptions used by doctors.
Bound cortisol can be thought of as "Total" or "Inactive", although those aren't the descriptions used by doctors.
Assuming that your blood test for cortisol was done at about 8am - 9am then it is actually a good result because that is the time when cortisol should be at its highest, and being at the top of the range would be optimal.
However, your saliva cortisol is too high. Optimal levels for a saliva cortisol test are listed on this link (see Example 1) :
However, I think your adrenal glandular leaves us with a problem in interpreting your results.
Be aware that taking supplements that increase Cortisol can, if taken for long enough, affect your natural adrenal gland output permanently, but hopefully your dose is low enough for that to be a minor problem for you and your adrenal glands will cope without your Klaire AC.
How do you feel if you come off it? How long have you been taking it, and if you have come off it since starting it what is the longest you've managed without it. When you first started taking it was it before or after you started taking thyroid hormones?
Regarding your thyroid results, there are two sets of results.
Thyroid Test
FT3. 5.3. Range 3.1-6.8
FT4. 16.9. Range 12-22
TSH 0.02. Range 0.27-22
Blood test taken as recommended in this group
62.5mg T4
15T3mcg
My T4 is too high! When taking 50T4 my blood results were 11
What date and time were these two tests done? Was there a change of dose between the two sets of results? If yes, from what to what. Were there more results than just T4 for the second test?
Klaire AC is Adrenal cortex.. I have been on AC since seeing Dr Peatfield many years ago.
it’s hard to tell how I feel off AC as I’m always feeling very poorly! I have reduced the AC today to 50mg and hopefully will come off it to re test in a couple of weeks.. I can feel my dose of T3 when it hits! Fast Hr spacey feeling in my head.
My blood pressure is always low and I have hypoglycaemia so I thought I needed the AC!
Blood test for cortisol would of been done at 8.30/9 am
blood test when on 50mcg T4 11
FT3 4.5. (10T3)
TSH 0.02
I think from 50T4 to adding another 12.5T4 the results have gone up to high! This test was done June 2021
Hi Bean, I'll flag up that your folate is a bit low or quite a lot low depending on the range, sometimes it is really vague with >4 being the aim others 3.89- 19.45 some go up to 60
Also the mention of mouth ulcers rings the zinc deficient bell, I have just been looking into this, you like me being dairy free mightn't be getting enough without supplementing... I'm under range
It’s not a popular opinion on this forum with some but I think rt3 is worth considering if you have an issue with T4. It could be that the increase in D3 enzyme is preventing your T3 from getting to where it needs to and you are missing out on some conversion. Have you ever tried increasing T3/being T3 only?
I have done a rt3 many years ago and it was ok then, but I was only taking 90 mg Erfa. I don’t seem to do well on too much T4
My health hit a wall two years after being on 100 mcg T4
I use to take 60mcg T3 many years ago and felt better than I do now, then menopause hit and I couldn’t tolerate it, changed over to Erfa couldn’t take more than 90mcg.. I was housebound most of the time, then thought T4/3 might be a good idea! I have been on that for 18 months, tried every combination and get stuck with 62.5T4 and 15T3. I’m housebound/bedbound much of the time.
I try and reduce T4 to 50mcg and put T3 up but I can’t tolerate it.. can’t tolerate what I am on either.
Bean101 I’m terribly sorry you are bedbound, my heart goes out to you. But I really think we can crack this.
This is only a theory but reading what you say I wonder if you are a candidate for T3 only, and that the intolerance to it and Erfa was actually something else preventing you from using your thyroid hormone.
IMHO there are two main reasons why we can’t tolerate T3 - iron and cortisol.
What are your symptoms when you try to raise the T3?
I tried T3 only January 2022 I felt dehydrated, blurry vision, dizzy couldn’t think, exhausted, vibrating, very high anxiety, shaking.. passing out feeling
I tried Paul Robinson CT3M and thought I was going to die
I would like to do an iron panel but my Dr won’t do it and I’m not sure of the accuracy of medichecks
I don’t take HRT due to Dutch test and genetics ( my mother passed away young due to breast cancer)
I tried T3 only January 2022 I felt dehydrated, blurry vision, dizzy couldn’t think, exhausted, vibrating, very high anxiety, shaking.. passing out feeling
How much T3 did you get up to? Do you find taking T4 gets rid of these symptoms or was it because your T3 dose was higher than 15?
I tried Paul Robinson CT3M and thought I was going to die
Was this on T3 only? What dose of T3 did you use to do CT3M?
I would like to do an iron panel but my Dr won’t do it and I’m not sure of the accuracy of medichecks
Yes I understand. How about a Monitor My Health one? Apparently they are part of the NHS I believe?
I got up to 27.5 mcg T3 then added 25T4 and the ulcers started.. I never had ulcers on Erfa.. I have tried stopping T4 and adding Erfa but my Hr went so fast I was awake all night! I’m not sure what happened..
I have the doom feeling and passing out feeling this afternoon.. I have just done my BP 117/76 Hr 83 blood sugar 5.4 I’m not sure if it’s adrenal, but BP looks ok
I wonder if your cortisol is too high and that is why you cannot tolerate the T3? Your response to CT3M really seems that you do not need your cortisol to be spiked any higher. How do you feel about lowering your AC?
I wouldn’t halve it so fast, I’d reduce it much slower if you’ve been on it years. And yes I’d say you need to give it a good few months of reducing the AC and monitoring your response. It would certainly take a while to rid your system of the AC if testing rules are something to go by. Monitor BP and RHR every day and see how you go 🙂 I wouldn’t increase your thyroid hormone as best to change one variable at a time to avoid confusion.
my bp this morning is 100/69 Hr going fast!! Only reduced AC by a smidge. I don’t understand if cortisol looks high on saliva test, then bp would be high! Do you think results could be high adrenaline?
I think we can disregard these saliva results, they aren’t designed for AC. No it won’t be adrenaline, adrenaline is created in different part of the adrenals and isn’t measured on cortisol saliva panel.
That BP has dropped a lot from what you said the other day. What is your HR? How much did you drop by?
it's very expensive to test Reverse T3 . so before ordering it you need to ask what /if any practical difference the reverseT3 result will make to what you chose to do next .... and answer the question "what can reverseT3 testing tell you that testing fT4 and fT3 cannot ?"
there are loads of possible reasons for rT3 to be high ... but when the reason relates to thyroid hormone levels ( eg fT4 levels are too high ) then this can usually be deduced by looking at the thyroid hormone levels (fT4 and fT3).... and if fT4 is relatively high the obvious thing to look at is try reducing dose accordingly ....you don't need to pay for an expensive rT3 test to tell you this .
Tatty this makes a lot of sense but I was struggling on t4 containing medication and my t4 was midrange (16 ref range 12-22) with a high RT3. Do you think it’s always possible to determine this from thyroid levels alone?
I wish mine had been obvious because I would have stopped trying to push the NDT a long time ago. I just continued on completely confused and bewildered x
whether fT4 is 'too high 'for an individual is presumably relative , not an absolute.
yes 'obvious' would be nice , but it rarely works that way in reality .... like when was i getting overmedicated symptoms with fT4 at 119% on 150mcg Levo ,.... then a few yrs later not getting any overmedicated symptoms with fT4 200% on 125mcg Levo
If the reverseT3 test was reasonably priced and didn't involve sending samples across the altantic to get it tested ,then i'm sure we'd all be much more relaxed about the subject of testing it , as it definitely has it's uses as an extra pointer/ clue ... it's just unfortunately a very expensive one .... and in a lot of cases it's an unnecessary expense .
plus ~ misunderstanding is still rife... people thinking rT3 is the problem , when it's the result of the problem not the cause.
I’ll have a go, I don’t have an opinion on it, just learning. There seem to be a camp that think it’s irrelevant as a bi-product of excess hormone and the body just packaging it neatly and safely out of the way. There is another camp that think it’s a sign of trouble and we should all try to get ours down, and an additional offshoot that say so many things can cause rT3 you’ll never know what caused it so waste of time and money, you will know it’s high but not why. I will now take cover as my misconceptions are spotted and corrected 😬🌱
As someone in the latter camp we think this because we believe rt3 is likely a. reflective of higher D3 activity which is known to block T3 access to cell nuclei (which is possibly its worst offence) it could go some way to explaining why some people must be T3 only b. Indicative of losing T4 to rt3 conversion when we’d prefer it as T3 altho it’s also an important metabolic brake so that point needs to be viewed in context c. Can be used as a general inflammation marker / illness / slowed metabolism etc.
Possibly the body is so overwhelmed by chronic inflammation / illness / chronic hypothyroidism and all its associated damage that the body makes rT3 to our detriment, so a way to get around that is to lower T4 medication and raise T3.
makes perfect sense to me and is actually the way Roseway suggests I deal with my current flare/swing. Reduce T4 further and continue with T3, 2 days in my HR is back down. I must have been swimming in rT3. CRP was raised and so were antibodies, so lots of correlation perhaps no causation to be drawn though. So many variables. Fascinating area.
Yeah, for sure and so much still just don’t know… I’m sorry you’re in a flare but I’m glad Roseway seem to have a solid plan! Those guys sound like gold dust! x
yep very reassuring in a ‘seen it all before’ kinda way. When someone says the words…..’well the numbers don’t tell us everything, tell me how you are feeling’ then you do feel properly looked after. Yep feel better already only spoke to them on Weds. 🌱
I have looked for information about rT3, but it is only mentioned as a problem on US sites, not European sites. Does that mean we do not have as much knowledge about it in Europe (yet)? Or was it only discovered pretty recently? I have read all of Dr. Peatfield´s books (written some 20 years ago), but I don´t recall him mentioning rT3, at least not as a problem.
When people start running low on thyroid hormones the body tries to compensate for the low levels with cortisol, one of the stress hormones. It isn't a good substitute, but it helps to keep people alive. Some people are good at creating cortisol, some aren't, or might only be able to create high levels of cortisol for a while then their levels drop.
If people are low in thyroid hormones and high in cortisol for a long time then it becomes their "new normal" (and makes them feel terrible).
If the patient is then prescribed thyroid hormones the cortisol level should reduce again, but if the high cortisol has become "normal for the patient" it can take a very long time to reduce. I sometimes wonder if some people find their cortisol never reduces.
I think of the thyroid hormone/cortisol problem as being something like a balance problem.
Using completely meaningless numbers...
Suppose I need a total of 50 thyroid hormones and 50 cortisol hormones to feel well. But my thyroid hormone levels reduce to 20 as a result of hypothyroidism and my cortisol rises to 80 in response.
When I start taking thyroid hormones I might end up in the early stages with thyroid hormones = 40 and cortisol is still 80, making a total of 120. This is when the internal vibration/trembling might happen. If the cortisol drops back to 70 then the patient might tolerate thyroid hormones a little better. Then the thyroid hormone dose is raised to 50. If the cortisol stays at 80 the patient will feel awful, but if it drop back to 50 they will start to feel normal.
Another problem would be if the patient isn't good at creating cortisol and their cortisol level ends up being only 60, while thyroid hormones are stuck at 20, making a total of only 80. This could cause poor tolerance of thyroid hormones and internal trembling might happen too.
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I thought I had low cortisol about 10 years ago, but saliva testing showed the opposite. My cortisol was over the range in saliva samples 1, 3, and 4. It was in range but high in range in sample 2. I was taking T3 only at the time. I actually made use of this information and started taking T3 around the same time as I had created sample 2 because it was when my cortisol was closest to "normal". It did help to increase my tolerance.
I also had very low iron and ferritin at the time I started taking thyroid hormones. I found my tolerance increased as my iron and ferritin improved. I'm sure that low levels of any nutrients could have an effect on tolerance. In my case my iron/ferritin were my bug bear. But for other people it might be some other nutrient that they struggle to optimise.
Your reactions could be a combination of the thyroid hormones and your excess cortisol. I really think you should try to do without the adrenal glandular for a couple of weeks if you can, then get a blood test and a saliva test done.
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Your feet symptoms sound rather like peripheral neuropathy, and vitamin B6 deficiency or toxicity can cause this. (They aren't the only causes.)
We suggest on this forum that people take brands of B Complex with quite small doses of B6 (no more than 25mg, or possibly 10mg, I can't remember which).
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Do you have regular testing for your potassium and sodium level? Getting those levels wrong could be dangerous. Do you know why you are losing potassium? How do you treat the problem?
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I will have to find more info about it.
I need help with my cortisol results. 
Crazy high saliva cortisol results
Cortisol and ACTH low? I'm so confused now.
Stress test back and cortisol rubbish
High Cortisol Results-thyroid link?
