Should I do a cortisol test privately? - Thyroid UK

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Should I do a cortisol test privately?

Bioluminence profile image
12 Replies

If my tsh is low ft4 normal and t3 high....? Been on 2 grains armour for 4 weeks and I feel worse than ever today. So tired very depressed contipated masses of hair falling out.freezing!!! I'm in bed now with two fleeces on and a heated blanket!!.. I did read it could be high cortisol that t3 isn't being absorbed?

Doc said Lower the dose of armour medication as t3 too high??? But why am I feeling worse and worse?

What can I do? Leave things as they are? Doc said go back for another test in a month. Do I have to suffer like this for another month? Has anyone actually got sorted out on their medication???? Is tw as good as it gets? Feeling more hopeless daily....

So willing to pay for treatment if I know there someone out there that will help!!!

How exactly does cortisol be treated? Can it be done with diet? Supplements!???

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Bioluminence profile image
Bioluminence
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Clutter profile image
Clutter

Bioluminence, what are the thyroid results with ranges (figures in brackets after results)?

Bioluminence profile image
Bioluminence in reply to Clutter

serum free triiodothyronine level (XaERq) above range 8.0pmol/L (3.5-6.2

serum free T4 level(XaERq) 9.6 pmol/L8.0-16.0

Serum TSH level (XaELV) 0.36mU/L (0.54-4.25)

I started on one grain for 6 weeks, i was put up to 2 grains on 4th December, these blood were taken on monday

The doctor said that i needed to reduce my medication back to one grain. I was resistant as i still have symptoms, i thought that maybe i needed to wait to see if they would work, they did initially give me a bit of a boost and i felt a bit better but I've been feeling wore this last couple of weeks....i was surprised to see an elevated t3 thinking it would still be low.

I felt so poorly today. I got up went into town and had to come home and go straight to bed, i had two fleeces on and the electric blanket on full! i feel so tired all the time and earlier whilst washing my hair it was coming out in handfuls still.....

my vitamin D was under range but my iron had crept up into the 'normal' range again.

I honestly thought that NDT was going to help.im on Vit D supplements and iron supplements still .

they are trying to fill me up with antidepressants but I've refused them....im not neurotic, i know this isn't normal for me and its dragging me down..I know you all heard it before and i feel like I'm joining a multitude of other sufferers. How do we get sorted, please please give me some hope, i just want some hope that maybe one day ill feel better???

thank you for your patience x

Clutter profile image
Clutter in reply to Bioluminence

Bioluminence, If you took NDT before your blood draw that is probably why FT3 is elevated. If you left 24 hours between last dose and blood draw you are overmedicated as FT3 should remain within range ie <6.2. If it was the latter I think reducing NDT to 1.5 grains will be sufficient.

3 months on replacement really is very little time and realistically you'll be looking at 9-12 months to feel well, with improvement along the way. Symptoms usually lag behind good biochemistry by a couple of months but it can take longer. Aim for optimal ferritin and vitD levels, normal just means within range.

Hair is slow to respond to good thyroid levels. It took 5 months for mine to stop shedding after I was optimally medicated. Temperature can take a very long time and doesn't always recover although you won't always feel so cold. It was more than a year after I was optimally medicated that I stopped feeling cold to the core, and into my second year before I began to perspire slightly. This is the first Jan in years that I don't need bedsocks and two hot water bottles to feel warm in bed.

If you feel worse now than when you started NDT it may be a good idea to have serum cortisol tested for adrenal insufficiency. NHS doesn't recognise adrenal fatigue and doesn't do, or recognise, cortisol saliva testing but a private cortisol saliva test will show whether cortisol is high or low at the right times of day.

____________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Bioluminence profile image
Bioluminence in reply to Clutter

i did leave it a good 24 hours before testing :-(

i guess i can get the test done via a link here?

Clutter profile image
Clutter in reply to Bioluminence

Bioluminence, FT3 over range can make people feel unwell and you may feel better for the dose reduction. I had FT3 8.4 last year and wasn't symptomatic apart from my hair coming out in clumps. I didn't feel hypo when I reduced dose and hair loss resolved 7 weeks later.

You can order private cortisol saliva tests via thyroiduk.org.uk/tuk/testin...

Bioluminence profile image
Bioluminence in reply to Clutter

did you have hypo symptoms when your t3 was elevated? should i just go down to 1 1/2? have another test in a months time?

Clutter profile image
Clutter in reply to Bioluminence

Bioluminence, not then, but when I was first treated with 200mcg Levothyroxine to suppress TSH both FT4 and FT3 were over range for several months and I felt very hypo at the time.

I'd try 1.5 grains and retest in 8 weeks. It will probably take 3-4 weeks for FT3 to drop into range on 1.5 grains.

__________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Bioluminence profile image
Bioluminence in reply to Clutter

thank you

Crlnfly profile image
Crlnfly in reply to Clutter

I Personally think feeling Over medicated feels a LOT worse than under medicated :( :(

shaws profile image
shawsAdministrator

Usually if on NDT you start of with an equivalent of levothyroxine if you've been on it, i.e. 50mcg of levo is equal in effect to around 1/2 grain of NDT and 100mcg of levo = 1 grain. You start off on 1/2 grain NDT if you haven't taken thyroid hormones before and increase by 1/2 gr. every two weeks until you feel well. Sometimes we find it a bit of an effort as we've never had to judge things ourselves. Take note of your pulse/temp preferably before you begin but if not, start now. If your pulse/temp goes too high reduce slightly.

stopthethyroidmadness.com/m...

Bioluminence profile image
Bioluminence in reply to shaws

i was on levothyroxine in januaray last year. they stuffed me full of it 150mcgs in 6 weeks it made me feel so ill i stopped it and didn't bother again until i saw the doc when i got back form my holiday at end of August. I finally asked for NDT and started on one grain at end of september last year. I've had a couple of blood tests.

I do not trust the doctors at all especially after them filling me with drugs at the beginning of last year; HRT antidepressants and Levothyroxine, all prescribed over the phone without being seen once.....i stopped the lot.

I've lost faith in doctors. I was told initially i was sub clinical hypo and at no stage had anyone ever sat me down to explain any of this. For example women going through menopause may suffer but it could have righted itself, i had to find out about NDT through books and forums. I simply do not trust doctors anymore

All i want is some hope that I'm not going to feel like this for ever :-(

im 51 and going through menopause.

shaws profile image
shawsAdministrator in reply to Bioluminence

I was shocked that I remained unwell/undiagnosed for many years despite having clear clinical symptoms. I think that's one of the most serious consequences of relying on blood tests only (I never had one for Hypo) and doctors not knowing or taking into account clinical symptoms.

They cannot explain to us about our illnesses fully as they don't know anything but to look at blood tests and take more notice of the test than patients' symptoms when they should be combined for an accurate diagnosis. Giving you such a huge rise in levo so quickly is negligent I believe. Shows they don't know the action hormones have on our whole system.

You are now on this Group and the majority have had experiences similar to ours and we can learn from others' experiences thankfully and find out way through the maze

We can right our ill-health with the help of good doctors/hormones. This seems impossible all over the world so many go it 'alone' and feel much better for so doing. We should have the possibility of trying several types/brands of hormones to find one that suits us.

You can get much better. I am now and as our bodies are individual what works for me might not work for you and so on. Because we complain to doctors who never take into account our FT3 but prescribe antid-'s in place of some T3 as they are fed up of us complaining too much. They don't realise that we think the are 'learned' but are disappointed when we find out they're not in regards to thyroid gland dysfunctions.

Others who are also in the 'change' might be able to assist too.

I think what drives most of us on this forum is anger that we've been left floundering.

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