Hi everyone, can someone please help me understand my Short Synacthen test results. Test was done at 9.55 am and then at 10.25.
Basal Cortisol was 257, and after 30 mins cortisol was 597 nmol/L
TSH 0.03 range (0.35 -50)
ft4 5.6 range (9-21)
T3 1.8 range (0.9-2.5 nmol/L)
I'm on T3 only trial. Endo will only give me 3 x 5mcg per day, so feel very under treated. Was previously on 2 grains of NDT before trial but Endo made me come off cold turkey and then start T3 the same wk. Have been feeling very unwell. Any advice would be welcome. Thankyou x
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Montague54
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I know that's exactly what I feel too. I have asked him to increase my dose and he keeps refusing. He says he wants me to take it very slowly and also that he dose not recognize NDT Armour as NHS do not prescribe it. He says that there could be anything in it. I get my NDT from American pharmacy online. So basically he is not considering the fact that I have been taking 2 grains and has reduced my medication without any thought to how I will feel. I feel very bad now and am really hypo again. It is a T3 trial and I am trying my best to get through it as I dont want him to take me off. It would make life so much easier than trying to source thyroid meds myself. I had a 24hr urinary cortisol and a dexamethasone test done 3 months ago and he sent me for the SStest right after. I have been on T3 x 5mcg 3 times daily for over 2.5 months.
24hr cortisol results 45 range (45 to 140)
Dexamethasone test (1mg )results 30 ( less than 50 means no cushings). Dont really understand these tests very much also.
So, is it Armour you take? I just picked that one out at random, since different brands of NDT tend to have the same levels of T4 and T3 in them whichever brand you take.
Your Endo is talking absolute bullshit. NDT (Natural Dessicated Thyroid), also known as DTE (Dessicated Thyroid Extract) was first developed in the 1890s and was the only hormone treatment available in the UK and the USA for hypothyroidism for about 70 years. It got sidelined when US manufacturers started developing Levothyroxine drugs and used a "dirty tricks" campaign to discredit NDT. The UK used to make its own NDT until about 1985, I think.
If you felt up to it you could complain about your Endo. His lack of care for you has been terrible. Were you supplying your own NDT or have you been prescribed it by someone in the UK?
I said in my previous post :
Two grains would be equivalent to :
76mcg of T4 and 18mcg of T3.
If you consider T3 to be 3 times as potent as T4 then you were on the equivalent of 130mcg of Levo, and now you are on the equivalent of 54mcg of Levo, which is a starter dose for someone who has previously been unmedicated. So you are now taking only 41% of the dose of thyroid hormone you were taking before.
If you consider T3 to be 4 times as potent as T4 then you were on the equivalent of 148mcg Levo.
If you consider T3 to be 5 times as potent as T4 then you were on the equivalent of 166mcg of Levo.
From my own personal experience I would say that T3 is no more than 3 times as potent as Levo, so you were never on a high dose of NDT in the first place. Your Endo simply doesn't have a clue what he is doing and you would be justified in making a complaint, if you have the energy.
I'm afraid I can't help you with your questions about cortisol. The only results I know something about are saliva cortisol results.
Wow! when you put it like that, no wonder I'm so ill. I am thinking about having the saliva cortisol test done next just to give me a better picture. I am having apnea again and breathing problems and have no energy or brain left lol. I have put on about a stone in two months without changing anything and now have what looks like a goiter starting to form or its my nodule getting bigger very suddenly. feel like ive been dropped from a very high height.
Your help is so appreciated, thank you will contact Pauline
Hi, your SST results are good, your base cortisol levels are slightly on the low side but might be normal for you. What symptoms have you been getting? Loss of weight, needing to sleep, feeling dizzy, low BP? The fact that your cortisol levels went up to 597nmol/Ls shows that your adrenal glands are working well. Did the do an ACTH blood test at the start of the test? The blood would have needed to go on ice straight away. The ACTH shows if the issues is with you pituitary gland. I suspect that he did the SST following the low result with your 24 hour urine, although it's not accurate for low levels but rather for testing in Cushing's. You suppressed on your Dexamethasone test, which suggests that you don't have Cushing's. If the result had been higher then it would have pointed to Cushing's. Personally I wouldn't bother with saliva cortisol, you've had some consistent results that show your adrenal glands are working well. It might be worth asking to have your ACTH checked if they haven't done that. You mention that you are having apnoea's, have you been tested for sleep apnoea? I didn't think I had it but when tested found I was stopping breathing 72 times an hour so now use a CPAP machine with good effect. Hope this helps you a bit?
So kind of you to reply so quickly, that's good my adrenals are responding to stimulation, but I thought that the baseline was low considering it was taken at 10 am. Symptoms are exhaustion, fatigue, lack of motivation, very dizzy, falling all over the place sometimes, hyperpigmentation, vitiligo, hair loss, tremors, pounding palpitations, muscle weakness, pale pallor, lack of hair in my legs, underarms and pubic area (too much info🙈). Its really weird my apneas had all gone for the last year but after I had the SST a couple of weeks ago I have not felt well, having apneas again, tremors in my back and mid back pain. Very pale pallor and muscle weakness, just feel like I'm going down hill again. Said to the endo nurse and she said no one has any reactions after.
My cortisol is well under range 95 (150-550) and no endo has ever addressed it other than give me 10mg hydrocortisone, they dont know much about thyroid, they seem to know even less about adrenal stuff. Your cortisol is well within range, I would recommend reading Paul Robinsons book CT3M or join the fb group. If you tweak the times you take t3 you can improve your cortisol, unfortunately mine is much too low for that to work for me.
The difficulty you have is you are on a trial, i do think they set us up to fail. If you say you feel rubbish your endo is likely to say 'well obvs its not working so no point continuing' you have to be a bit crafty with endos. I would say i am feeling quite good but room for improvement, on 2 grains its roughly 18mcg of t3 so i would gently suggest an increase of 5mcg. You need to keep your endo on board as they are they gateway to the next obstacle of getting GP to fund it and keeping the t3 on nhs.
Your t3 is low and your t4 will be low as you are not taking any. Can you also take half a grain alongside till you feel better or manage to get endo to increase the dose, my experience has been i get nothing if i am confrontational and ask them to get me well and do their job (not unreasonable as it was their insistence my thyroid was removed)
When i am pleasant and take in a list of symptoms that have gone since t3 and tell him what a clever boy he is i get an increase and keep my prescription, its a balancing act.
I am on a huge dose but still have the last 3 symptoms joint pain, fatigue and anxiety after 5-6 years on t3. Some people fully recover on t3 some dont. I know NDT is getting hard to source but if i am totally honest if you were well on ndt i would stick with it, also ask if anyone knows an endo who is open to ndt, mine deff isnt but there was a lady i knew who fought to get ndt on nhs and won with a very supportive GP. x
Thank you for taking the time to send me all this info. Poor you, you must have been through the mill too. How long has your cortisol been so low, that's awful. They need to be finding out why its so low, pretty shocking they aren't doing more to help you. Is the hydrocortisone helping to raise your cortisol levels. You are very clever, I would never have thought of that, I will try being extra nice and massage their egos next time. I always get it wrong and ask too many questions and I think I annoy them. I will take your advice and smile and keep in with him. My endo doesn't believe in NDT and thinks its really bad, because he says we don't really know what's in it, and could be anything🙄, because I source it myself. He does not prescribe it and says NHS wont prescribe it. I still have some left so will take half a grain per day and see if it helps. Thank you
My cortisol has only been tested twice 2017 107 and 2018 95 i also did the saliva test. Tbh not much point testing if i dont have a dr who knows what to do with the results. The hydrocortisone helps but it is artificially boosting, i wont help my adrenal gland get better. The info regarding cortisol is so contradictory, i joined a group, many took various supplements and often ended with opposite problem, too low cortisol becoming very high cortisol which has its own problems. Messing with hormones can be very risky, so until i find a dr who knows what they are doing i will stick to what i am doing.
Getting fully well with the usual Drs judging by this group is not achievable, so we get what we can from them and self source and supplement the rest. I have great days, ok days and absolutely rubbish days. For me its about quality of life, i am much better than i was but by no means the dynamic person i was before my thyroid removed. I have a good life, much quieter if a little boring when i am fatigued but its better than the few years i spent bed bound, in pain and what felt like a slow death.
My Endo told me yesterday that a baseline cortisol over 150 is not a problem, under 150 is. My baseline is all over the place which apparently is what happens and I'm convinced on some days my level drops very low 🤷♀️
yes on both my nhs tests the ranges were (150-550) i am well below on both:
2017 107 (150-550)
2018 95 (150-550)
I dont have auto immune problems so its unlikely addisons but extremely low. Having followed 2 adrenal/cortisol groups lurking in the back ground, i have come to the conclusion that messing with cortisol can do more harm than good. I use to take NAX but they started to make me feel nauseous. I take good multi B's, B12, high vit C, take adrenal cocktail (salt, potassium and orange juice) 10mg hydrocortisone when under stress. I did try low dose estrogen cream and progesterone cream, made no difference at all after 6 months so i stopped.
I definitely know when mine is low, i get an internal humming like a tuning fork, i feel jittery and agitated, it is adrenaline surge. Its much better since the hydrocortisone and i keep stress as low as poss.
Have you thought about trying Paul Robinsons CMT3, its supposed to help some people with low cortisol boost it a bit. I have bought his books. I get that humming sort of a vibration or tremor inside when I'm not on enough meds. I also get a really fast pounding feeling in my back, around about where my adrenal glands are.
I often recommend CT3M but it can only help low range cortisol, anything under 150-200 is too low. It can only improve a bit, mine is way under range, it didn't help at all.
Why does it not help with really low range cortisol, it it because the adrenal glands are too damaged or weak. Sorry just trying to understand all this. Its so complicated and a lot to understand.
Yes mine are unlikely to pick up. CT3M is only for tweaking it won't change really low cortisol, in the same way vitamins can help support but won't change or fix anything. X
I had a surgical menopause 12 years ago under the age of 45 which is not good as I have discovered now. I take bio identical hormones estrogen and testosterone gel, but I read recently from Dr John Lee book "What your Dr may not tell you about the Menopause" that taking some natural progesterone can help your adrenals and cortisol levels.
I used well springs natural progesterone cream for 6 months . Its hard to quantify if somethings works but it never reduced morning anxiety that was from low cortisol, only hydrocortisone settles that. I am on big single dose of T3 and if the progesterone helped i should have been able to reduce t3 slightly. It took few years to get settled without thyroid and find t3 dose that made me feel better (not great) hormones are such a complex subject that i think its best i dont mess about with it. I need a dr pref bio identical specialist who knows what they are doing and regular testing, iv known people make themselves really ill self treating with DHEA, steroids, hormones etc. Whether such a dr exists is another thing
I am going to try progesterone cream, have just ordered it to try it. I tried having one dose of T3 and then 2x dose of T3 and felt as if I was getting a boost after meds for a couple of hours and then crashing again, so I now take 3 x T3 doses per day and that is so much better for me. Paul Robinson suggested that If u take your T3 dose earlier at 3 am it may help to raise cortisol for some people. I have started to do that the last couple of weeks and do feel a lot better in the morning. Its still very early days though. If you find one let me know, it seems to me there is few and far between of hormone experts that look at all your hormones together and your body as a whole, and help balance them. My Endo is a diabetic specialist and does not seem to know that much about Thyroid issues.
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