Hi...I have just finished reading STTM and it confirms what I have been thinking, that with low TSH, low T3 and low T4, I may have a problem with my pituitary. I also have high(ish) cortisol but that wasn't considered much of a problem after GP had spoken to the endo!
But in the book she suggests doing a five day measurement of body temperature at every 3 hours which I did (with a mercury thermometer) and also a digital thermometer but I think it's inconclusive. In the book it says if you are swinging from more than 0.1 C (or .2 - .3F) every day then you have an adrenals problems. However I swung on some days and not others eg if I take the Celcius measurements: Days 1 to 2 there was a 0.1 difference (not significant), days 2 to 3 a 0.2 swing (significant), days 3 to 4 (no swing at all) days 4 to 5 a 0.2 swing (significant). In other words half the time it was significant and half the time not. It was quite an ordeal remembering to do the measurements every three hours. I suppose I could do another batch sometime but not sure it would throw up that much additional info.
However there is 0.3 difference between the lowest average (taken on 2nd and 3rd July) and the highest taken on 30th June.
TIA
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FoggyMoggy
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Yes, the Cortisol tests (they've been repeated) were serum and taken around 10 am. I have read about the accuracy of saliva tests to get the measurements throughout the day. But how do I get them? I don't suppose you can get them on the NHS? If not, how much are they? And I'm worrying about having to post them and them deteriorating.
Thanks for that. So when you get the results and if they are significant...do you then take them to your GP or is that a waste of time? Is it better then to use the supplements or natural meds suggested in STTM or other places. Thanks
Hi Que6t - no I've not even got as far as endocrinologist. The GP consulted with the endo so it was indirect contact. Three of my Cortisol readings were high but not that high but I have no indication of the spread throughout the day. But I guess the serum shows them averaged out for the day.
I've not really started any thyroid therapy as it's difficult to know without a diagnosis. But yes...I could do an adrenal saliva too but I'm guessing that's another expense and again I expect i would have to treat myself if the results confirmed adrenal fatigue. Thanks for your help and support
The reason being my TSH, T3 and T4 were all within the lab ranges. I've only had free T3 and free T4 done twice but even when the T3 was .2 below the range my GP said it was borderline and she wouldn't treat it because of that reason. Hence I've not seen an endo.
Yes I was worried about self-medication...I am caught between a rock and a hard place...it seems it has to get considerably worse before anything will show
Where you low before treatment? The low TSH, low ft4 and ft3, only show pituitary issues if you are NOT on thyroid meds..this is before treatment. Altho you could have a pit. issue, but thyroid and TSH labs, aren't useful when on meds, is what i mean.
Please contact Shaws, who is an admin. on this forum. She has all the links to Dr. Lowe's info and archives. He cured all his patients of fibromyalgia with thyroid medication, exercise, therepy and vitamins. He found it was due to a low metabolic rate. He wrote much research and it has all been ignored. I hope this is useful. Either way tho, you are just going to have to get some testing done or buy thyroid meds yourself online, do something to pull yourself out. There is no real treatment in mainstream medicine other than pain meds for fibromyalgia.
I have read so much and am just getting confused...with foggy brain it's even harder to know where to focus. In STTM they suggest exercise is a no-no (makes you more fatigued) if you have adrenal fatigue. This is confirmed by many people with ME and Fibro who just make themselves worse with exercise. Also another person on my thread suggested not to self-medicate and I kind of agree without a diagnosis otherwise I'm just peeing in the wind...however I have posted my results. My results suggest a pituitary problem and possible adrenal fatigue
I would not put much stock in the Adrenal Fatigue. You have some kind of pituitary damage, which will alter your cortisol levels, as well as the low thyroid from the pituitary, which will also change cortisol levels. In this case, with suspected damage to a actual gland, herbs, vitamins whatever, won't help anything. You would need actual hormones to fix this, but need to know why it is happeneing. You should not have been diagnosed as Fibromyalgia, with your low thyroid/pit. issues. High prolactin is Hypothyroid, but also possible tumor. Once/if you find out what is causing this, you will have a terrible time getting proper thyroid treatment as you may always have a low TSH and this will cause them to not offer treatment as it looks as tho you are hyper thyroid, if the doctor is TSH obsessed, if that makes sense. I have thaes problems myself. I have been on every thyroid med and steroids, for my low cortisol and i am no better, wasted thousands on books and vitamins..i am done. Low thyroid can also cause high cortisol, at least for awhile.
I wouldn't have been diagnosed with Fibro if I hadn't suggested it. That was a light bulb moment and it's only as a result of being diagnosed with Fibro and it's similarities with hypothyroidism that i pressed for the bloods in the first place. I know you are all anti-fibro on this board but I was diagnosed with that before the explorations I am exploring now. If I'd not had the diagnosis of fibro (at my pressing) then I'd never even have considered hypothyroidism.
I'm sorry about all the problems you've had...reading STTM though it seems that high Cortisol can be caused by adrenal fatigue
My point is that Adrenal Fatigue is not an excepted medical condition and you have a problem with your Pituitary, which could cause it. Also, there is this.
Ray Peat wrote:
“Thyroid is needed for the adrenals to function well, and adequate cholesterol, as raw material. It’s popular to talk about ‘weak adrenals,’ but the adrenal cortex regenerates very well. Animal experimenters can make animals that lack the adrenal medulla by scooping out everything inside the adrenal capsule, and the remaining cells quickly regenerate the steroid producing tissues, the cortex. So I think the ‘low adrenal’ people are simply low thyroid, or deficient in cholesterol or nutrients.”
— Raymond Peat, PhD
My point is that the Adrenal Glands do work at all, if not from a signal fropm the Pituitary, which is ACTH. This seems to be ignored by those touting Adrenal Fatigue. Also, the glands are very hearty..
I no longer read STTM or believe most of what they say, after becoming ill on dessicated thyroid, which they push and say you will not become well without it...at least they said that years ago.
I also meant that fibromyalgia symptoms are seen in Hypothyroidism.. it is what the pain is all about.
Thanks for your response, Faith. I thought everybody recommended STTM on here, that's why I had it bought for me because everyone seemed to be endorsing it. But having just read it, she doesn't just say take NDT. She most emphatically says that you won't get any benefit unless you deal with the adrenals first - that is how I understand it.
Again, her insistence on Adrenals..what does that mean exactly?!!! Adrenal Glands are very hardy and regenerate. Adrenal Glands don't work without a signal from ACTH. Also, they cannot address what is wrong with an individual. You will need proper understanding of what is happening with your pituitary, to determine treatment. It makes the suggestions in the book, many, well..they just don't apply to those with Addison's or Pituitary damage. It is well known too, that low thyroid causes low cortisol. You can't look at "Adrenal Fatigue" when your "control" panel is not working correctly..do you see what i mean?
Yes, I am taking bits from the book out of context...I would never swear by any book but as Clutter says below, Dr Peatfield and the author are of this view whereas the others, Dr Lowe and Dr Skinner are not. I can't speak about any of the others as I've not read them. But STTM did mention that TSH and low T3 and T4 were useful in diagnosing pituitary problems. That is all I really have to go on and that is what I'm trying to explore but as with any approach everyone has their own perspectives. The author of STTM was a patient-led approach ...obviously the examples given worked for those people. I don't have low cortisol, btw, I have high Cortisol. I'm trying to piece all the bits together but I feel I'm p***ing in the wind with all the conflicting info.
It seems I should just insist on them looking further into my low (but within range) scores. My usual GP just gave a nonsense explanation for my low scores
Yes..insist on checking the pituitary, i cannot believe how incompetent they are. I guess my point is, speaking from experience, that the forums, the books, don't tell you what is happening in your particular situation and once you have actual Adrenal Gland or pituitary damage, the whole thing, the advise and protocols may not work.. the advise doesn't apply and symptoms from low GH could be going on too. Like the ct3 m, method, of raising low cortisol and herbals, don't work to raise cortisol, if you have damaged glands. Yes!! Find a doctor who will listen.
Dr Lowe did indeed say that Cortisol should be tested and finding out why it is low needs investigation. He would not treat with thyroid meds, if cortisol was at a very low level, or if the person couldn't tolerate meds.
Growth Hormone..it also comes from the Pituitary. Many people with Pituitary issues have brain blood flow issues, that can cause body pain, or so i was told. My blood flow is low in areas of my brain. I do not recall what Dr. Lowe said about high cortisol exactly, but i know that he believed the cause of cortisol issues needed to be examined. Like, if cortisol was low, extensive testing would be done, then if no cause found, thyroid meds were thought to help that. Adrenal Glands, like every other bodily organ and function, needs Thyroid hormone. People with Hypothyroidism often have low growth hormone...the pituitary uses it too. Too bad for us!!!
Foggy, there are different opinions on whether to treat the adrenals first. Dr. Peatfield certainly favours that approach but the late Dr. Skinner and late Dr. Lowe believed treating low thyroid enabled the adrenals to cope.
Thanks...yes, this is what I am concluding. It's very hard for me to get them to act on on my levels. All my scores had gone up slightly this year...only my FT3 was minimally outside range last year and they didn't act then so even less likely to act now so I have to decide how to go forward from here.
Foggy, T3. It's absorbed quicker than Levothyroxine and will improve your FT3 faster and if it doesn't suit it will be out of your system 3 or 4 days after the last dose. It's not a quick fix, it might take a year or more to relieve symptoms you've had for years, but you should know within 3 months whether or not it is helping.
yes..i think you are right about the pituitary involvement here. Not to make you afraid but there is a tumor, benign tho, that will raise cortisol..an ACTH producing Tumor, then it squishes the pituitary thus causing low TSH and thyroid. Why do not the doctors at least recognize the possiblity and check your ACTH level at least?!!! Please find a new doctor!!! You could be suffering low Growth Hormone from this as well, which may cause symptoms too. Have you consulted with an Endocrinologist?
Thanks Faith...our posts keep crossing! I have read that there's a possibility of tumour - isn't that Cushing's though? But GP didn't think it was Cushing's. A friend of mine had a tumour on her pituitary...
By the way my prolactin was high but they said this is often the case with anti-depressants. The GP did say he could give me steroids to test my Cortisol - does that make sense - but said the endo didn't think it was necessary at the level my Cortisol was at. Also that I would be awake all night on steroids which didn't exactly sell it to me. He consulted with the endo, I didn't directly. He isn't my usual GP but my usual GP didn't think my levels were anything to worry about either. I am due for a health check up so can discuss it all then but I don't hold out much hope with them
You do not test high cortisol with steroids..no makes no sense. Yes, the tumor would be Cushings, but what are they waiting for? It's just a frickin' MRI, for God's sake!!! You may need to find another doctor..no you need a new one. You are getting no where with these idiots. You have low thyroid, from the pituitary..forget the cortisol then..they still need to have a look. Did you have an MRI..i'm sorry, my brain is foggy too.
Well maybe I got that wrong about the steroids or what he was testing...it was something I had to take at night and that would keep me awake. Does that make sense? No, I've not been offered an MRI...I guess that would be something to ask for. There are many other doctors within the practise. I thought the second one was taking it more seriously but now it seems not. My usual GP is very good in other areas but not this one obviously but then seems to be the story everywhere
Never give up, keep trying..you can even go to the hospital and say you are suffering from a terrible headache, to get what you want. Tell the doctors that in ordeer to get the tests you need.
See Que6t-33's response below. That was what I was referring to...taking the steroid before the serum test to measure ACTH...I think this is what GP was offering.
I know the tests is not an ACTH test. I don't know what it is but maybe you should ask about it, research it, then do it, if it is appropriate. I have had a doctor offer me outdated tests, that are not accurate for GH and other things.
Thanks Que6t - I probably did misunderstand...but yes...that sounds like it, the taking steroid then serum to test response of ACTH, that is what I think he was suggesting. Thanks for your advice. No, I don't want to assume tumours either...that did have me worried although I wouldn't want them to miss it either. The thing is, I've heard endos can be as bad as some GPs...those that are good and those that are well...not so good!
Thanks lots, Que6t. Yes, I am grateful for advice and recommended reads which is what I'm trying to do...although already there seems to be divided opinion re Dr Peatfield. On another thread of mine, or maybe it is further down on this one, I was advised that Dr Peatfield concentrates on getting adrenals sorted (as did the author of STTM) whereas D Skinner and Lowe say if you sort out your thyroid the adrenals will be sorted too!
Thanks for your support and understanding...I don't know that I can afford a private specialist especially if outside my area, there would be travel and accommodation costs on top of the cost of treatment
I know next to nothing on the thyroid but I just wanted to commend you on your diligence in trying to find answers. My illness took me through many pathways but eventually I found answers that helped. So I'm sure you will eventually work out what best works for you. Keep asking and trust your own instincts!
Thanks Tugun. Four years on I have just had a diagnosis of ME (I had one for FM 9 years ago). I suspected I had ME for years but in my area they treat it as a neurological illness thank goodness. That doesn't mean I will stop searching but have to trust the experts. I do want to rule out Sjrogrens as a cause. I wanted to rule out MS but was advised just to keep an eye on symptoms. So many things to rule out and all of these conditions can be misdiagnosed if more information comes to light but seems the main cause isn't the thyroid or adrenals from all my tests and research but that the thyroid (HPA axis) is compromised. One of the main diagnostic criteria for ME is PEM (Post Exertional Malaise) and also Autonomic Nervous System Dysfunction which would account for my temperature problems and sweating when cold. Take care - Mogs
I hadn't known about the HPA axis - very interesting. The below is just information about the overnight test taking a steroid pill.
The overnight dexamethasone suppression test checks to see how taking a steroid medicine called dexamethasone changes the levels of the hormone cortisol in the blood. This test checks for a condition in which large amounts of cortisol are produced by the adrenal glands (Cushing's syndrome).
Normally, when the pituitary gland makes less adrenocorticotropic hormone (ACTH), the adrenal glands make less cortisol. Dexamethasone, which is like cortisol, lowers the amount of ACTH released by the pituitary gland. This in turn lowers the amount of cortisol released by the adrenal glands.
After a dose of dexamethasone, cortisol levels often stay very high in people who have Cushing's syndrome. Sometimes other conditions can keep cortisol levels high during this test. Examples include major depression, alcoholism, stress, obesity, kidney failure, pregnancy, and uncontrolled diabetes.
The night before the blood test, you will take a dexamethasone pill. The next morning, the cortisol level in your blood will be measured. If your cortisol level stays high, Cushing's syndrome may be the cause.
An ACTH test is sometimes done at the same time as the cortisol test.
Hi, yes, Cushing's was another one of those I tried to rule out! I had a batch of tests last year, the last of which was to be the Dex Suppression Test and I got the tablets and everything. But as the previous tests I'd had, a chest X ray an abdominal X ray and a 24 urine test came back negative they decided it wasn't really worth taking the Dex Suppression Test as it didn't seem to be that. My blood Cortisol also had come back within range after being just outside range previously!
It's so frustrating not knowing and at the same time having to handle the symptoms. I wish you all the very best and hope either the symptoms go or you find out what you are dealing with.
Thanks Tugun. You too. I have been diagnosed with ME recently. The specialist mentioned that I asked about MS and Lupus etc but said one test wouldn't be able to give me an answer so has suggested I have my bloods done annually.
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