Cortisol test result

[heathermr]

As I have not been too well recently I asked my Gp for a cortisol test as I have had a head injury in the past and its likely that my pituitary is failing. My TSH has already failed and is permanently zero and my sex hormones (and sex drive) are non existent. My Gps reaction was that my Cortisol level -253 (range 150 to 500) is completely normal for a morning test. I am really struggling at the moment, even the slightest physical task leaves me shaking like a leaf and the constant nausea is getting unbearable. My normally well controlled asthma has ramped up and I seem to permanently need my inhalers. I am lightheaded and clumsy and the brain fog has descended again. I take 75mcg of T3 broken into small amounts daily and increasing or decreasing the dose has no effect. I have no energy and virtually a permanent headache. Anyone any ideas?

[jezebel69]

Hi Heather - the saliva test for cortisol taken 4 different times in one day is much more accurate. I'm puzzled by the amount of T3 you take. 75 mcg of T3 is like 300 mcg of T4 and thats a large dose. If taking T3 your TSH would most likely be less than zero If you dont feel the thyroid meds are working it could be vitamin deficiency getting in the way. Have you had B12 and D tested lately? Also vit C is needed. What would help you on here is a copy of your full thyroid blood test (with ranges) which is available from your GP

[heathermr in reply to jezebel69]

Hi jezebel69,

This was a blood test taken by the GP. He refuses to acknowledge anything other than blood tests. My TSH has been zero for a long time, long before I started taking thyroid medication, and does not alter even if I stop all thyroid medication completely. I nearly died because the Drs were just watching the TSH and refusing me thyroid medication and I was very close to going into a myxoedema coma before a private Endo finally took a T4 and T3 blood test. She was astounded I was still alive as the levels were so low!

I just seem to be one of those people who need a large dose of T3, anything less and the hypo symptoms return. I was taking a lot more but have been able to reduce the dose slowly and steadily down to the 75mcg I am taking now. I have been feeling well on that dose for some time being very active playing tennis 3 times a week, walking up to 10 miles at a weekend and I do take B12 and Vitamin D regularly. I also take a multi-vit and magnesium to cover anything else that my body is short of.

I don't have any blood test results as my results are always the same, ie TSH is zero, T4 is zero, and T3 varies as to when I took my last dose and what I have been doing since then. Even my Gp says its pointless trying to just track the T3!

Heather

[greygoose]

Your sex hormones are really non-existant? Do you have the numbers? If that is true, then your doctor should be doing something about it - sending you to an endo, at least.

Your cortisol is less then mid-range, but doesn't indicate a drastic problem. And, your TSH is zero because you are taking a high dose of T3 - I take 75 mcg T3, too, and my TSH is zero. Which is what I would expect. But what is your FT3?

What you need tested, if you think there is a problem with your pituitary, is your HGH (Human Growth Hormone) tested.

[heathermr in reply to greygoose]

Yes, my sex hormones are too low to be measured and my Gp sent me to see a Gynae as I was having a very tough time with menopause hot flushes. They have given me some oestrogen patches at the lowest dose but keep threatening to take them away as I have been on them a number of years.

My TSH was zero before I started thyroid medication, -see above reply. I had a head injury about 30 years ago and had a basal skull fracture and bad concussion at the time. The Neuros now think that that caused damage to the pituitary as it hangs down through the skull around the fracture site.

I don't have an FT3 as I don't have blood tests. My TSH will always be zero(as it has been for years) and my T4 is also zero as I have taken only T3 for well over 6 years now.

Heather

[humanbean in reply to heathermr]

You could still have an FT3 test done privately with a finger-prick test for £29, if you were interested in seeing what your level is :

medichecks.com/thyroid-func...

[greygoose in reply to heathermr]

I agree, there's no point in testing your TSH or FT4, but they could at least - and really should! - test your FT3. How do they know you're on the right dose? Obviously treating by symptoms isn't working out!

I don't want to put the cat among the pigeons, but I have read two things about estrogen : 1) you'll never get your thyroid hormone levels right if it's too low and 2) you shouldn't take estrogen without progesterone. Something to think about, to research. Do they at least keep an eye on your estrogen levels? Why do they want to take them away? No matter what your age, you do need some sex hormones in your system. How's your testosterone?

So, what are the neuros doing about anything if they now believe your pituitary is malfunctioning? Surely they should be doing a battery of tests? Just thinking about it, isn't going to help much, is it? Have they tested your HGH? Because, believe me, if that's low, you won't feel at all well!

For your cortisol, as was said, you do need to do a 24 hour salive cortisol test, to know what's really going on. But you won't get that on the NHS. Have they at least tested your DHEA?

Sounds as if it's really time your doctors got their fingers out and started doing something. I've nothing against self-treating but there's only so much you can do by yourself.

[heathermr in reply to greygoose]

I had to force the Endo to give me T3 and once he had given in and allowed me to have it, he just wanted never to see me again as I was a "difficult" patient! I know more about thyroids than my Gp so they have left me to manage it and it has worked well until the last couple of months.

I have been on the estrogen patches for a number of years and because I am now 62 they think that I should not be needing them now I am almost a pensioner! No tests, I just see a gynae once a year and so we go on! I have not been offered progesterone as I do not have a womb since a hysterectomy in my 40s. I don't know about my testosterone levels but I do know that my sex drive has long ago left town!

I saw the Neuros because I started with Epilepsy, something again they have put down to my head injury. That has finally settled with drugs and it was them that suggested that my pituitary might be failing given my lack of TSH and sex hormones. I have now been discharged from them and no-one seems to want to listen to my concerns. I am just waiting for the drs to start on the anti-depressants angle as they seem very reluctant to even think that I might have pituitary failure.

Heather

[greygoose in reply to heathermr]

Well, all that sounds true to form! They honestly are so useless! It's not difficult to know more about thyroid than a GP!

I'm going to have to do a bit of research about sex hormones, because it's a long time since I ready up on it all. But, if your gynea thinks that you only need progesterone when you have a womb, then you need a new gynea!!!

I think you're going to have to start making a nuisance of yourself with your GP, to get back to a few specialists, because you're not going to get anywhere without any testing. I don't know, but I don't believe you can do all the necessary tests privately. But, if that interests you, you could have a look on the ThyroidUK home page to see what is on offer in the way of private tests. But, you most certainly do need to do an FT3 test. You need to know where you are. I know doctors think that testing FT3 is pointless, but they are utterly wrong. Of course it varies as to when you took your last dose, but that is why we say to leave 8 to 12 hours between your last dose and blood draw. How often do you take your T3?

You are not a 'difficult' patient, you just have rather a lot going on. The main problem is, they're too bloody lazy to actually get down to it and start sorting things out. It really is a terrible state of affairs.

[greygoose in reply to greygoose]

OK, so I've checked up in my 'little' book of hormones, and it says that after the menopause, a woman should have the following levels of sex hormones :

Estrogen : 70 -120 pg/ml

Progesterone : 2000 - 8000 pg/ml

Free Testosterone : 1.2 - 3.0 pg/ml

So, your gynea is totally wrong to say you don't need progesterone because you don't have a womb! If you want to know more about these hormones, I can give you a bit more information, if you like.

[Joesmum in reply to greygoose]

Hi greygoose.

This could b a little confusing for levels as in the UK we measure in

pmol/s NOT pg/ml

E.g. 70-120 pg/ml estrogen would be approximately 250-440 p/mols.

X

[greygoose in reply to Joesmum]

Oh really? Sorry, the book I got it out of is French. I didn't realise it was different. Thanks for pointing that out.

Could you possibly translate the other two ranges for us, please? No idea how to do that myself!

[heathermr in reply to greygoose]

Thanks for that and I will get my husband to translate if he can. However protocol here in the uk says that no progesterone treatment if you have no womb.

I take my first dose of 25mcg of Cytomel as soon as I wake up and then have the rest in half a tablet doses spread out during the day. I have tried moving the doses around but this regime seems to suite me the best. At least I have pushed the Gp into giving me Cytomel rather than the useless British T3 but I am just waiting to see if they try and stop prescribing the T3. I have been on it over 6 years so I am hoping that demonstrates a definite "clinical need"!

Heather

[greygoose in reply to heathermr]

So, do you always take your Cytomel on an empty stomach and wait an hour before eating, etc.?

[heathermr in reply to greygoose]

I take my Cytomel by dissolving it in the mouth and leave a good gap before I eat anything else. This works better for me than fiddling about trying to ensure an empty stomach and I can feel its effects in a matter of minutes. I have tried swallowing it but find that far less effective.

[greygoose in reply to heathermr]

That goes against science, but ok.

[heathermr in reply to greygoose]

Sorry but my husband who is a Biochemist by trade with a long career in the Pharmaceuticals industry and has a long string of letters after his name says the science actually goes like this:

Blood vessels are made up of the same size cells throughout the body be they in the gut, stomach,mouth etc. There are gaps between the cells that allow particles in and out of the blood stream. T3 passes in through this gap quite easily as it drops the sodium ion which is carried separately in the blood as ions are carried normally. All this is exactly the same be it either in the gut or the mouth. This is why GTN spray is given in the mouth to help in cardiac cases. It is simply the best and easiest form of entry.

[greygoose in reply to heathermr]

I agree it is for some things, but we have always been told that the sodium needs stomach acid to separate it from the T3.

If it worked just as well sublingually as it does swallowing it, why do the manufacturers insist it has to be swallowed?

[helvella Administrator Thyroid UK in reply to greygoose]

Both T4 and T3 are more soluble in an alkaline solution such as occurs in the gut rather than the mouth or stomach.

[heathermr in reply to helvella]

One tablet takes up to 20 seconds to dissolve in the mouth completely and naturally without chewing. That is fine by me! I can feel its effects very quickly, often within a couple of minutes.

[heathermr in reply to greygoose]

When taken sublingually T3 does peak in the blood stream and as we know Drs and manufacturers have been told that this causes Atrial Fibrillation. We know that this is not true. Manufacturers therefore insist that the drug is swallowed to flatten off the peak. I know that I need a big boost to just get out of bed in the mornings and I can't wait for 2 to 3 hours ( this is a typical time taken for things to reach the gut) for the drug to take effect when swallowed. Within 10 minutes of taking T3 this way my brain is functioning better and I am ready to get up and face the world. I take the rest of my doses in half tablets at intervals throughout the day to try and even out the peak and trough effect.

No you do not need stomach acid to remove the sodium, ions are always carried separately in the blood so they will naturally detach in the blood. The problem with swallowing T3 is that the stomach acid will still be generated by the act of swallowing and as the tablets are small they could over act on the T3 and not just remove the sodium part, some of the T3 itself will be digested too.