Blood Cortisol -10.30am SST- 216 rising to 611 after synacthen injection
I've consulted 2 endos within the past couple of months, I've outlined very clearly the symptoms I have and how they have a cyclical pattern through the day ie. rough, brain fog hungover feeling first thing to tired but wired in the evening. One said theres nothing wrong with me and the other said I have Alkali Blood which is causing my brain to be too excited and thereby causing the brain fog.
After my short synacthen test I felt absolutely amazing - it was like rolling back 4/5 years, so I sourced some 10mg hydrocortisone tablets and I've been taking them for the past 3 days. Once again, I feel absolutely fantastic, not my old self, but something approximating that.
I'm reluctant to keep self-medicating with hydrocortisone as I know it has some serious side effects but usually at much higher doses, but I feel so well, I'm also reluctant to stop! Would anyone who can offer some help please let me know what they did in a similar situation. For reference, I've tried Levo 50 dose, and whilst I felt better, after around 6/7 weeks I felt much, much worse and the hydrocortisone seems to be fine solo, so far.
I'd appreciate any thoughts/help.
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Jamima
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Hi Snooperkitty - I tried a couple of days of levo and just felt crap again, really spacey and weird - which I don't feel with just the HC on its own. Levo is defo not for me! I hope you can find some relief, it's absolutely exhausting.
Levo and HC are not interchangeable. If you are hypo you need levo.
It sounds like you have a pituitary problem. Has no doctor ever suggested that? Those two endos you consulted sound like they live in a fantasy world! Especially the second. Alkali blood affecting your brain! Never heard of such a thing.
So, how much levo have you tried taking? And, have you don't private bloods whilst on it to see how well you convert?
Thanks Sparklingsunshine, that's exactly what I thought, particularly when I asked what the recommended therapy is and apparently it's breathing exercises to calm my buzzy brain, this was despite the fact that I'd just mentioned that 10mg HC was giving me clarity and stamina again.
Thank you greygoose. I'm still pretty convinced it's a pituitary problem. I took 50 levo for around 6/7 weeks at the beginning of summer, and yes, I did a blood test after the 6 week mark which showed my tsh under-range and increases in both ft4 and ft3. I've got a post from back then, I'll try and find it.
OK, but you cannot expect to feel well on just 50 mcg levo. It's only a starter dose.
First thing is the right time to take HC. But, the question always is: should you be taking it throughout the day. That's where the difficulty comes in. But, if it's helping, stay as you are for the time being and see how it goes.
The problem is, of course, doctors do the synacthen test but seem to have no idea why they're doing it. Yes, it will show you if you have a problem with your adrenals. But if cortisol levels rise with the injection, they say, oh your adrenals are working, and leave it at that. They don't seem to ask themselves the question, well, if the adrenals are OK, what is causing the low cortisol? Answer: a dodgey pituitary! But, I doubt some of them even know where the pituitary is! It's really shocking. And, then, you have the low TSH with the low thyroid hormones, which again indicates a pituitary problem and they just fail utterly to join up the dots!
But, there are some endos around that understand pituitary problems. The difficulty is finding them.
Thank you. I'm going to continue with the HC for a month and see what happens, so far it's not making me feel any worse. I'll get tested again and consider adding levo again. Would T3 be an option?
One of the endos I saw recently is meant to be a pituitary specialist, but I also think some of the private endos are money-making specialists and a swift diagnosis is cheap.
Well, obviously T3 is an option, but not one I would go for at this stage. If you can optimise your FT3 on levo only, that would be the easiest solution. But you need to take more and give it longer to find out how you convert first. Taking T3 won't help unless you need it.
Hello there. I was just about to post a question and I saw yours. Well, after a week or so on 5-10mg, I started to feel tired again, so I introduced levo back at 50 dose. I’ve had some really good days on levo and HC and some not so good eg tired, foggy. I’m just not sure how to proceed.
thanks so much for the insight, that’s very interesting. Did you feel the benefit of increasing the levo at all? According to sttm and Barry Peatfield you need to make sure you increase your thyroid meds while on the HC to maximise its effects, just wondering if you did this? Also if you’re self treating I’ve read from both sources that 25mg HC is the right dose and maybe you’re flagging because not on enough? X
Yes, that’s my problem just now, and I’m too scared to increase HC as I’m self treating and it’s got some pretty dodgy side effects. I know when I use levo solo it seems to compromise adrenals as I return to light headed on standing, crashing after food and low bp and temp. I’m really just feeling my way around on my own, but levo solo doesn’t work.
yea I understand your hesitance, and I agree that self treating steroids is quite a different ballgame to self treating thyroid. I wonder if you might add some t3 at this stage or maximise levo to 150? May I ask, what are the side effects of the steroids?
Even at 5-10 mg HC seems to cause water retention, no other side effects, I can feel the benefits really quickly ie, brain fog and tiredness lifts. I also seem to have the traditional low cortisone pattern of very tired in the morning and increasing cortisol/adrenaline (not sure which) throughout the day. At 2pm, 5pm and 11pm I have a surge of something. I get very low blood sugar at 5pm. I’d considered T3 but previous thyroid tests have shown good conversion.
Thanks for sharing that 😊 the water retention may be a product of low thyroid function, perhaps leave the steroid as it is and increase the levo to a full dose. The 5pm blood sugar drop makes sense to me, that must be it wearing off as cortisol plays major role in blood sugar production.
Thank you, so I’m really using the HC as a crutch until I get thyroid levels stable, or will I always need HC? I’m due a levo increase soon so I’ll see how it goes and I’m testing next week too. I really must do some reading around thyroid/adrenal interplay, do you have any recommendations?
it’s hard for me to say as I am only an amateur myself, but I’ve read lots around it. My understanding is there is a kind of hierarchy of hormones and that is -
Adrenals
Thyroid
Sex hormones
Some are lucky and taking thyroid hormones is enough to get adrenals and sex hormones functioning normally again. Others taking thyroid hormones ends up revealing an adrenal issue which means we have to go back, treat the adrenals and THEN the thyroid followed by sex hormones. This is why you’ll see so many here with “optimal” thyroid bloods/nutrients but still symptomatic (this is all according to the books I’ve read, I’m ovi not a medical professional and others may have different opinions) So if I were in your position I’d increase thyroid hormones until they reach optimal point in range, leave the HC as it is and then see how you feel. Eventually, according to what I have read, the HC can be withdrawn but the levo is for life. The withdrawing of the HC needs to be done long after you are feeling fully well and very slowly over time.
Thanjs so much. I’ve tried introducing sex hormones at very low dose but that seems to muddy the waters so I’ve decided to just stick with HC and levo and self testing. Do you have any book recommendations?
just read this through - that is me! I will get the books you mentioned and try to make more sense if this. I’m not Hashi, I think more likely secondary or central hypo as I can’t manage thyroid hormone alone, it makes me quite ill. Thanks again, so glad I came on here today.
tbh, being hypo but not from hashi’s doesn’t really matter. It just means you don’t have antibodies to faff with, the fundamentals remain the same so at least there is less confusion there 🙂
Yes, but if it is central, HC is always recommended before thyroid hormone, according to what I’ve read, as it’s the pituitary not getting feedback. I don’t know if I’m central as No-one will diagnose me but I’ve had low readings across the board, and under-range DHEA with low cortisol across the board.
oh that’s interesting. I am hashi’s and also have adrenal issues from going long term without appropriate treatment and doing a prolonged ketogenic diet. Because the pituitary is so T3 reliant, I wonder if I induced central hypo additional to my hashi’s. In any case, people with hashi’s can also develop adrenal issues (according to stop the thyroid madness it is as common as 50% of the time)
Your thyroid and how to keep it healthy - Barry Peatfield
Why do I still have thyroid symptoms? - Datis Kharrazian
Hashimoto’s Root Protocol - Isabella Wentz
It’s good to bear in mind that these books are not studies, they’re based on a collection of patient experience and are also, to an extent, written and sold for profit.
However, I don’t tend to read studies because they are mostly badly put together and contribute to the reason thyroid disease is so badly managed so I don’t regard them as a useful authority. And indirectly they are also designed for profit (tho a much larger one!)
We have to pick through the bones of it all and find the nuggets that make most sense to us x
Wow. Thanks so much, when brain fog is absent, I’ll try to wade my way through. By the way, I’m going to do another 4 point saliva (regenerus) test, should I take my HC or not that day?
Annoyingly the 4 point saliva test will be a total waste of money while on HC, you’d need to be off it for 2 weeks minimum, and stopping it without a taper is potentially dangerous. If I were you I’d do the DATS to get a handle on where your adrenal function is (DATS is described above in stop the thyroid madness section and involves body temperature) x
What are these labs that show good conversion? 50 mcg is not enough to show conversion one way or the other. But, I wouldn't increase too quickly if I were you - 25 mcg increases every six weeks maximum.
HC is notorious for causing water retention at any dose.
And, if I were you, I'd be very warey of anything I read in STTM. They get an awful lot wrong!
If you are taking your HC in the morning - which, of course, you have to do - are you taking your levo at night?
Thank you for replying grey goose, these tests are from the last time I was using levo consistently and I think taken at around 7 week mark, there’s pre levo for comparison, and someone on here said my conversion was good. Results pre levo
3/3/22TSH -1.03 (0.27-4.2)
Ft3 - 3.9 (3.1-6.8)
Ft4 - 12.8 (12-22)
Results 18/5/22 after 6/7 weeks on 50 levo - same range as above
TSH - 0.07
Ft3 - 4.98
Ft4 - 16.3
Yes, I take levo at bedtime and yes, all nutrients were optimal at last test which was nhs endo test. I’m testing again next week. Is it problematic to take levo and HC together?
OK, and I can see why someone said it was good. But, both FT3 and FT4 are much too low, so not a good way to judge conversion. The TSH is very low and that is ultimately going to affect conversion. So, you need to be on a higher dose of levo, for longer, before you can conclusively judge your conversion.
Have you ever had your Human Growth Hormone (HGH) tested? If - which looks more than likely - you have a pituitary problem problem, your HGH is going to be low, too, and that is also going to affect your conversion. You need good levels of HGH to convert well.
If, by taking HC and levo together, you mean taking them at the same time, yes, it is problematic. You can't take anything at the same time as levo - except possibly vit C - without affecting absorption. There would need to be a gap of at least two hours between the two.
Thank you grey goose. My tsh was always low and levo seemed to push it lower - is that a problem? No I’ve never had HGH tested - is it possible to home test for that? Would small doses of cortisol/levo affect HGH? Are there any other pituitary hormones that might reveal a clearer picture? Sorry for all the questions but still trying to unravel this. I don’t take meds together always leave at least 2 hour gap.
Yes, exactly, that's what indicates a pituitary problem: a low TSH that doesn't correspond to thyroid hormone levels. And, with the lack of TSH stimulation, the thyroid makes less and less thyroid hormone but the TSH doesn't rise.
I'm afraid I don't know if you can get HGH tested privately. You'd have to look on the private testing sites. But, no, neither levo nor cortisol would have any direct effect on HGH if the pituitary is defective. Although, you do need good levels of T3 for the pituitary to be able to make sufficient HGH.
The pituitary makes quite a few hormones, but not all of them are tested. FSH often is, though. But I believe quite a few things can cause that to be low. As far as I'm concerned, the synacthen test plus the low TSH that doesn't correspond to thyroid hormone levels are the clinchers. But, as I said above, when you first posted, doctors don't seem to understand why they're doing the synacthen test, and draw the wrong conclusions. They just don't seem to understand how it all fits together. How Adrenocorticotrophin hormone (ATCH) is a pituitary hormone that stimulates the adrenals to make cortisol, so if the pituitary isn't functioning correctly, cortisol is going to be low even if the adrenals are in good health. Or - and I know I'm a cynic - they just don't want to understand because, basically, they really don't want to diagnose anybody with hypothyroidism!
Thank you greygoose, I’m grateful for your input particularly as I see you have some personal problems. I’ve recently contacted the pituitary org and they’ve supplied a nurse helpline number where I can chat things through - are they a reputable org? I agree that medics seem to have a closed mind, my last private endo was happy to talk about my 2 childhood concussions and periods starting very early until he read my nhs Endo’s report at which point he u-turned and agreed with everything she’d said (essentially nothing wrong with me) and concluded that I had excited blood and needed breathing therapy. Oh dear. I shall plough on…
That's very kind of you to say so. Actually, quite a lot has happened to me lately, and I just need time to go to pieces then put myself together again.
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