Seeing Dr S tomorrow. Need advice re Low Cortisol. - Thyroid UK

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Seeing Dr S tomorrow. Need advice re Low Cortisol.

30 Replies

Hi Everyone,

What is Dr S likely to do tomorrow? Does he take much notice of Adrenal Stress Profiles? My total Cortisol is 15.3 (21-41) I haven't been responding well to Levo or Armour. Still very hypo and now getting cholesterol lumps on my eyelids.

I think my leg and foot pain is due to low cortisol. I take B12 and D3 everyday and have had no improvement. the pain is so bad i can't walk any distance, and it stops my from relaxing and resting in the evening. i have to take Gabapentin or I wouldn't get any sleep.

Thanks,

Helen. X

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30 Replies
Issy profile image
Issy

How much D3, what were your original blood test results for D3 and B12?

in reply to Issy

My B12 was in the 500's but I've had low B12 for 10 plus years and used to get 50mcg prescribed by the doctor. I take 1000mcg a day, re Vit D3 it was borderline insufficient. I take 100mcg a day which I'm sure isn't enough. I tried the solgar sublingual, but the flavourings hurt my bladder so I had to discontinue that one.

nobodysdriving profile image
nobodysdriving

Just talk to him about your worries, show him the result and see what he says, we can't assume what he will say or do in your case :)

I see him in 2 weeks time, can't wait, I 'miss him' :)

in reply to nobodysdriving

Hi NBD,

I faxed him my results when I received them last week. I don't think it's worth carrying on with the Levo, I'm sure I must have RT3 as my T3 result in January was high and out of range. He wanted me to go on T3 in Jan but I was worried about the cost. I have some on order now, (not from the UK :-( )

I don't have any blood test results to take tomorrow, because I'm avoiding tests like the plague. The fallout from my GP is just crazy.

I miss him too. I have 2 glossy before and after pics to give him, lol! Be nice to have a "cured" one someday. XX

nobodysdriving profile image
nobodysdriving in reply to

yes your rT3 was sky high because of your low cortisol :(

when you start the T3 you may only be able to tolerate TINY amounts (ie 5mcg) and only tiny increments because of your low cortisol, clarebear knows about this LOL :D

in reply to nobodysdriving

Hi! That's really useful info to bear in mind, especially as i have no patience, lol! I'll take it very slowly! Xx

JLTsirius profile image
JLTsirius

Hi, are you taking adrenal support supplements?

Whilst B12 and D3 are excellent to take, a lot more adrenal support is required when cortisol is low.

I have never seen Dr Skinner. I do know from endless research and self treating that unless Adrenals are supported and start to recover then Levo or Armour will not be working optimally, even in some cases putting more strain on low cortisol & struggling adrenals.

Have you ever looked at 'Stop The Thyroid Madness' website? It is invaluable. Written by someone who was extremely ill cos Drs in US are also not up to speed with HyPO.

So her mission was to get better by researching and self treating - and she did.

There is a LOT on adrenals & HyPO on this website.

JLTsirius

in reply to JLTsirius

Hi There, I owe you a reply from a previous post, sorry!

I took Nutri Adrenal two years ago, I didn't notice much happening, and money is tight, so I discontinued them. I have some low acid Vit C on order. The other VIt C burned my poorly bladder.

I have read some info on "Stop the Throid Madness" thanks, very helpful. I think I now know why I've had diarrhoea since 1999, the leg pain started 8 years ago, and my feet are dreadful, that started 5 years ago. I think it is to do with adrenals. Nothing I have taken has eased the pain at all.

I did have steroid injections over an 8 year period into various joints as I have a lot of damage. I don't think they have done me any favours re my adrenals.

I've been hypo 20 to 30 years according to Dr S, I was only diagnosed 2 years ago. So far between Armour and Levo I haven't yet recovered, my body temp is still too low, still have the same Hypo symptoms, only improvement is I'm not getting the strong palps that woke me in the night. I take 175 mcg Levo and 2 1/2 grains of Armour, but like you say this isn't going to work well until my adrenal function improves. I don't sleep, the most I get is between 3 and 6.30 am, I know this doesn't help at all.

JLTsirius profile image
JLTsirius in reply to

I hope you get some help 2mo with Dr Skinner...........

JLTsirius

in reply to JLTsirius

That's very kind, thank you. X

Heloise profile image
Heloise in reply to

Maybe you have seen this. I thought it was very informative.

stopthethyroidmadness.com/a...

in reply to Heloise

Hi, yes i've see this info before i had my results. Good to have a read again. Thanks!

shaws profile image
shawsAdministrator

Dr S believes that when you are on optimum thyroid medication that your adrenals should recover.

JLTsirius profile image
JLTsirius in reply to shaws

I have read books by Dr's who say the adrenals have to be helped first - is a balancing act......Yikes so tricky ..........with so many conflicting opinions

JLT

in reply to JLTsirius

It does all get very confusing. As everything is linked I would think if adrenals are bad that's going to affect the thyroid and vice versa.

I've cut sugar out of my diet, trying so hard to go to bed earlier, upped my protein, etc etc. I get night hunger though, if I can medicate myself enough to get to sleep say 12am I'm up at 3 am needing to eat something, as I feel sweaty sick, weak and my heart starts pounding. It's impossible to sleep through this.

I've had other chronic health problems for 15 years now and severe pain at times, this will continue and have an impact on my adrenals. It's just so hard getting to a place where you feel any improvement.

Heloise profile image
Heloise in reply to

thyroid-rt3.com/backgrou.htm

All about reverse T3 and T3.

in reply to shaws

It's a bit like a chicken and egg situation though Shaws. We've tried 200mcg of Levo and adding in Armour and neither have been successful. I'm definitely going to agree to T3 if he thinks this is the way forward.

I don't think I have any chance of getting it on the NHS, even if supplies were forthcoming. I've been waiting 7 months now to see an Endo, who I do know prescribes T3. My GP said what do you need T3 for? look how high your T3 is on the blood test :-(

It's a scandal trying to get treated optimally in the UK, but that's why we're here. Thank goodness we are able to get support and advice on this site. :-) XX

poing profile image
poing in reply to shaws

I think that is mostly true... the adrenals have the most amazing power to recover when you take away what is stressing them.

The problem is when you can't take that stress away... high antibodies would be a serious stress. I think the antibodies can come down when you're on the right dose of thyroid meds, and that does help the adrenals to get back to normal.

But in some people it doesn't work out like that. Eventually the adrenals are so strongly downregulated that they "forget" how to work properly... but by that time you are in adrenal failure territory.

Angel54 profile image
Angel54

Hi Helen,

Please show your saliva tests to Dr S and see what he says.

My blood tests when i was on a lot of levothyroxine were always high in the FT3 but i felt deadly. My Endocrinologist said mine is high in the blood but unless it gets to the tissues it doesnt mean anything. So i presume mine wasnt getting to the tissues as had every symptom going.

Can you push to see this Endocrinologist as then hopefully you will get T3 prescribed.

Good luck with your appointment.

Love Angie xx

in reply to Angel54

Hi Angie,

I hope you're having a better day.

I faxed him my results last week, but I'm going to take a copy of the results with me too.

We're back to the blood tests not being an accurate representation of what is getting through to the cells! I said to the doctor last time, judging from the blood tests I should be manic and full of energy, but I feel so ill!

I've been pushing about the endo, but Shropshire seems to have some of the longest waiting times in the UK. Whether the hospital in Shrewsbury get patients from Wales and further afield I don't know, because a lot of Shropshire doesn't have a high density of people.

Love Helen. XXX

erfathyroid profile image
erfathyroid in reply to

what did Dr. S. say about saliva test ? wonder if it was the same remark that he told me.

in reply to erfathyroid

He said all the results look the same! I was in shock!

erfathyroid profile image
erfathyroid

hi. said the same to me, said saliva tests no good. That was about 2 years ago. still very ill. He put me on n.d.t. always says increase dose. Now get no reply. feel there is something wrong, now up to 3.1/2 grains. what did he tell you to do? what are you taking?Have you been ill long?

Hi again, i was very disappointed by his lack of advice re adrenals. My pulse was lower than last time and i do feel i've slipped back. He agreed i was taking a hefty dose and still hypo. I'm taking 175mcg levo and 3 grains of Armour. I was taking 200mcg of levo. I'm reducing it, i've ordered T3 and i'm going to take a tiny bit and see if i improve. Diagnosrd Aug 2011, but i've been ill for 15 years. Dr Skinner said i'd been hypo for 20 plus years.

Do you have low cortisol? Do you have leg, foot pain and diarrhoea? I'm getting nowhere with this.

erfathyroid profile image
erfathyroid

I am getting nowhere. no foot or leg pain. very very weak. the longest i have been well in 13. years 6 weeks last year. have a few good days, then go down. he never says what to do, just take more. why are you taking both levo and Armour? i am taking only Erfa. 3 times a day. last week had morning 9.am. cortisol=223.nmo1/l. 13 years ago ,was going too doctors feeling weak. did blood test. Never been right. Going tonight to see private Endo. I did see him on the 2nd. he told me to up dose to 31/2. grains. taking blood tests he wonted done. You take a lot of thyroid meds. Is there a good Endo you could see.

in reply to erfathyroid

Hi i'm sorry you feel so awful:-(

In jan he advised me to take T3 but i was worried about cost. Previous time to adf in some Armour. I don't think i'm absorbing anything much to be honest. Having terrible double vision the last 5 months. I've been waiting to see an endo for 5 months, and it's not going to be until at least the end of july.

Good luck with your appt i hope it gets to the bottom of what you need to get well. Xx

erfathyroid profile image
erfathyroid

Hi. Will let you know how i get on. Might have info to pass on to you. Long time to wait for your appointment. Can you go private, NHS. you only get 10. mins.

How can you go through your history in 10 mins?? I usually take my history typed up, then you're less likely to get letters from them and you think they're talking about a different patient!

That's really kind if you want to share info, i'll do the same.

I think Shropshire's waiting lists are some of the worst in the country, it's not even densely populated!

Good luck with everything. Xxx

erfathyroid profile image
erfathyroid

Went for second appointment. Did not have my file, so did not remember what he had told me to do. I had to keep repeating. 2 weeks ago told me to increase dose to 31/2 grains. Now 2 weeks later at appointment. You are not over dosed, Go back to 3. grains. I have lost the plot. Cortisol blood test in range, but i asked for 24 hour urine test. told by thyroid support, that this shows low adrenal. So he is going to do this. I am going to stay at 31/2. only been taking 16 days. wont to give this a go first. feeling not so ill today, still weak. what do you think of him saying drop dose when i have not gone over

Hi! All tbis is so hard to take, up your dose, cut you dose, i honestly think they have no answers and we'd be better of treating ourselves. Be a lot less expensive too!

The 24 hour urine test i think can be quite revealing. Doesn't it show how much of ther meds are getting through to the cells too?

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