T3 only 30mcgs and Hydrocortisone 30mcgs. Help please?

[Sally56]

I just spent the last few days in hospital as my BP hit amazing heights. Average 190/110. I was in the pharmacy when I had a severe spike and became confused and weird. The pharmacist called the ambulance. I rang the Primary Aldosteronism Speicalist's Nurse, who said to come to their hospital. Whilst in hospital I was seen by a few Endos who all said to stay on my Endo's regime, as they didn't want to interfere with his protocol! (he's powerful) I begged them to contact my P.Aldo Professor and they said No.They brought in a Pyschiatrist! Who said they're's nothing wrong with her! I checked myself out. I'll call my Aldo Doctor on Monday. Of course it's the weekend, it always is when things go wrong. And my Endo is away for a month. I am being lashed by these adrenaline rushes.

I don't know what to do. Stop T3/start T4? I only got these on T3. That was mentioned. Get off the HC that was mentioned? One asked why did your Endo put you on HC without a Cortisol test? Oh and the hospital didn't have any T3. They don't stock it. (I had to get my own from home) I am desperate. This is my city's largest hospital!

I am becoming progressively weak from the rushes. I'm scared but not about the rushes, I have had these before. About their longer term effect., I developed CFS because of them. I only s

leep every second day.

I was on T3 at 15mcgs (3 months) because I couldn't raise over without having rushes. 2 weeks ago I was told to double T3 and take HC. Well it's not working? (As you know from me previous posts.)

TSH 11 0.3-4.0) coming down, but normal according to the hospital)

T3 5.7 (2.6-6.0) normal according to hospital.

I completed and sent away my saliva tests on Wednesday. I needed a profile to start from. Any advice? Thanks.

[Hashi-Monster]

Did you mention the cortisol to the endos at the hospital? It would have been an easy blood test for them to do if you were there for a few days.

[Sally56 in reply to Hashi-Monster]

Yes, well they mentioned it. He asked me why my Endo would put me on Hyrocortisone without first doing a cortisol test? I said. I am wondering that myself. But it went no further, because they are old school. I was hoping for a test but the Endos boss said leave her on the Private Endos regime. Our work is done (that is no work).

[Hashi-Monster in reply to Sally56]

That’s crazy they should have just tested you then decided whether to change the regime

[Hashi-Monster in reply to Hashi-Monster]

The fact that you are sleeping every 2 days is another sign that the cortisol is high

Have you considered stopping the HC for a couple of days ?

[Sally56 in reply to Hashi-Monster]

Yes I am weaning myself down. This is just madness.

[Hashi-Monster in reply to Sally56]

Okay well I think having lower cortisol will be more manageable for you at least until you get the results

[Sally56 in reply to Hashi-Monster]

Actually should I ask my GP to do a test? What is it called?

[Hashi-Monster in reply to Sally56]

I think it’s just called serum cortisol ... it’s a fasting blood test done before 9am

[Sally56 in reply to Hashi-Monster]

Thanks Missimal. I see her Tuesday. I'll ask for it then.

[Hashi-Monster in reply to Sally56]

You also need to get your Primary Aldosteronism endo up to speed with what you are taking and inform them about your hypertension as I don’t know if HC is a contradiction

[Sally56 in reply to Hashi-Monster]

Yes, good advice. I will call Monday and try to get an appointment urgently.

[Sally56 in reply to Hashi-Monster]

You know, the more I ponder o =n this, with your help, the more I think this is too complex for all of us and my Prof in the Primary Aldo part of my life, although not an Endo, will know enough to advise me what's what. Thanks again.

[greygoose in reply to Sally56]

Sally, I suggested in your last thread that you ask your GP for a serum cortisol test and you insisted she wouldn't do it!

[Sally56 in reply to greygoose]

Hi Greygoose. Yes, she doesn't take me seriously, I am starting to feel like a nuisance. But after the hospital visit and how I had to kick and gouge for answers, I think she'll be more responsive. I'll tell her it was mentioned at the hospital. Maybe it'll be in the letter they send her. She sent a letter tom the hospital ahead of me arriving. I was surprised, maybe she is going to listen to me now? Also I feel braver. I'm angry that's always good motivation! Thanks.

[greygoose in reply to Sally56]

Yes, anger is good - as long as you keep it in check. I do hope she will test now. But, it's crazy the didn't do it in the hospital, wouldn't have taken them long. Just too lazy to do their jobs properly.

[Sally56 in reply to greygoose]

Greygoose,

I went to the public hospital and they were dreadful. My Primary Aldo Nurse told me to come there because my Prof was there. Then the eejits didn't contact them! I could have gone to the private hospital where I could have asked for anything. Regrets. Yes I'm angry but it's okay I had a melt down yesterday and screamed at my lap top. I don't do anger well.

[Sally56 in reply to Hashi-Monster]

Yeah I know. Nothing is being done for me.

[Sally56 in reply to Hashi-Monster]

Missimal, I did a saliva cortisol test on Wednesday, I went off all drugs to see if I could get any idea for a baseline. I feel very much on my own with it all now. I would swear here, but that isn't appropriate!

[Hashi-Monster in reply to Sally56]

Try not to panic ... when are the results due back ?

[Sally56 in reply to Hashi-Monster]

They said 5 business days. I posted it Friday early morning.

[Sally56 in reply to Sally56]

Thanks for your replies and support. Yes I shall try not to panic.

[greygoose in reply to Sally56]

You did the test on Wednesday and posted it Friday? Why not Thursday? It would have arrived on Saturday, when they don't work. So, it will probably take longer to get the results back.

[Sally56 in reply to greygoose]

Brain fog Greygoose. Thursday was my birthday and the day I ended up in hospital. But on the way to the chemist, I stopped and posted the test. It was Thursday morning. I apologise. I'd hate to play Trivial Pursuit with you Greygoose, you're far to quick witted for this Brain fogged old gal!

[greygoose in reply to Sally56]

Well, I used to be brain-fogged, too. It's a matter of getting the treatment right. And that took me about 15 years!

[Sally56 in reply to greygoose]

Greygoose, I had this for many years (6 maybe lost years) But I was great again with the T3 until I crashed that is. I think fog is the scariest thing. It's like wading through treacle, or looking under water. It's just plain revolting! I'm sorry you had it so long, you have a sharp mind and it must have been hell for you. I'm doing my PHD and I can't even remember what I read. Makes no sense. I have to wait again for it to clear.

What I am doing: Not following the advice of the hospital or my Holidaying Endo (Hope he gets sunstroke, very uncharitable of me!) and I am enduring the waves of adrenaline. I have introduced 100mgs of T4 Levo. I am titrating T3 down from 30mcgs to 25mcgs, aiming for below 15mcgs by 4 weeks and titrating down the HC from 30mgs to 20. I am feeling better already. But still weak. My BP has normalised. I am going to get a new Endo tomorrow.(Not that easy) I believe (and so did a young Endo at the hospital) that I shouldn't be on the HC, that it's causing my BP spikes.

Something you said weeks ago was that I shouldn't have had such a sharp rise in the T3 (from 15mcgs to 30mcgs). I also think your're right.

I await these cortisol tests. Thanks.

[greygoose in reply to Sally56]

Sally, you can't just 'introduce' 100 mcg levo just like that. It needs to be done slowly. Start with 25 mcg if you like but not 100. You're changing too many things at once, and too fast.

T3 should be increased/decreased by 5 mcg every 2 weeks. T4 by 25 mcg every six weeks. HC much slower than the others, or you'll put your body into shock. These are hormones you're dealing with, not aspirin. But I agree with you about your endo, and think you're being rather charitable, actually. I would have wished something much worse!

[Sally56 in reply to greygoose]

Oh crickey! Ok can go back to 25 levo for next 6 weeks. Hospital Endo (in the if I were you from the side of his mouth, ) said 80 but I'll go with 25. T3 well been on 30 mcgs for 3 weeks except for 2 days without because hospital didn't gave it in Stock. Mm mm so will stay with 25mcgs doing 5 down each 2 weeks. Day 2 now will excell sheet this. Hc Doc said probable high BP cause? Dunno. But took none for 2 days. (Hospital) then only 20 mgs for past 2 days. I ll stay here for another week and see how it feels, then try for another 5 mg drop unless I get more rushes.

Questions: I have 2 pieces of advice conflicting. Should I take HC 30 mins before T3? Therefore Should I take it titrated the same way ie.

HC 7 x 3 approx 20 mcgs. t3 8.5 x 3 approx 25 mcgs. I hope make sense.

Yes Endos. Have sent emails out to Endos with whole story, so only those willing to take on a complex adrenals/thyroid patient and current patient if HRH Holidaying Endo, will respond. Mmm it's a plan. If it doesn't come off I shall ring around and if that fails I then go to private hospitals emergency departments. I'm exhausted. Thanks for your patience with me.

[greygoose in reply to Sally56]

You're taking HC 7 times a day? Who told you to do that?

[Sally56 in reply to greygoose]

Sorry unclear. 7 approx mcgs of T3 by 3 times a day,

[Sally56 in reply to Sally56]

No that's not it either. It should be7mgs HC x 3 times a day. Sorry

[greygoose in reply to Sally56]

Well, you should only be taking HC twice a day. Once first thing in the morning, once before lunch. Never after 1 pm. That was the advice of the hormone specialist that put me on it.

[Sally56 in reply to greygoose]

Alright can comply. Thanks