9am cortisol 150. Passed a SST with over 500 peak. Endo consultant said my thyroid was 'borderline underactive' but I don't have any actual reading of anything for that. My growth hormone is slightly high but I passed a suppression test.
So I've been discharged because I'm fine. However I don't feel even remotely fine. GP says it's probably chronic fatigue causing my symptoms. I don't feel they've properly investigated the low cortisol.
I've had a constant headache for two and a half years. I wake feeling hung over, nauseous and exhausted. I have trouble sleeping even though I'm so tired I could fall over. I've a big list of symptoms I won't bore you with. I feel fobbed off.
Endo and GP say because I passed the synacthen test that it doesn't matter that my cortisol is low. GP says I'm looking for problems. I'm looking for a reason WHY I feel so awful. Nothing else is being done because GP says it's ME/CFS so there's nothing that can be done. As far as I can tell the SST only rules out primary insufficiency and not secondary? I've also had an MRI on my pituitary and they said it looks fine.
Any advice please? I feel so so ill and I've been told basically to put up with it.
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BobGF
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Hello, I can’t answer your question- but could be please teach me how to check your cortisol level in the morning? I read a lot of people report about cortisol in the morning being high- how do we measure cortisol? Best wishes, EZ
Conventional medicine use a serum blood test drawn before 9am to assess cortisol levels because the natural circadian pattern indicates levels should be highest at this time, it is thought to offer a look at adrenals highest capacity.
Unfortunately because long term thyroid issues can compromise the adrenal glands and mess up HPA axis signalling we often end up with a dys-regulating circadian behaviours. Therefore, measuring only a one snap shot moment before 9am whilst the remaining 24 hours remains unknown is viewed by many to be woefully inaccurate.
Functional medicine uses saliva testing where samples are taken several times over the course of 24 hours. Comprehensive tests also measure DHEA which can help offer further clues to the extent of the adrenal reserve insufficiencies. These results allow members to address imbalances with adaptogens known to regulate the HPA axis.
Can you add any recent thyroid and vitamin test results
Looking at your Forum name does GF indicate you’re gluten free?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies (but 20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in the U.K.?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hi thank you for your reply. No not gluten free. No dietary issues that I'm aware of. I've not had any vitamin level tests. I've had thyroid function test 'normal' from the GP. Serum TSH 2.82 That test was done late morning. The previous 9am one was at the hospital which was the source of the 'underactive' thyroid comment from Endo but no one appears able to get me the actual results. I only know the 150 cortisol because he told me at the time. By the time I had the SST several weeks later my start reading was 250 or so I think. So it doubled during the test by going over 500.
Thank you. I'll look at private cost because GP won't do any more tests. Although he says it's ME/CFS and I think I might need the vitamin tests to confirm that diagnosis. I'll push for it.
It's good your adrenals have been shown to respond well but with a 9am 150 cortisol I agree secondary AI should be investigated. You need an ACTH stim but some members have struggled to receive ongoing investigations when an SST has yielded good results. The other test that can be used to assess pituitary dysfunction/disease is the ITT (Insulin Induced Hypoglycemia).
Have you had any further labs such as electrolytes, aldosterone/plasma renin, other pituitary hormones or antibodies associated with Addisons? Its good you have had a pituitary MRI but not everything always shows up. How did they explain the elevated GH?
Long term undiagnosed/mismanaged hypothyroidism can have devastating effects on the adrenal glands and an endos definition of 'borderline underactive' could likely translate to you being quite deficient in thyroid hormones. This can cause cause irregularities in the HPT/HPA axis signalling.
You are entitled to see your blood test results and many of us use a NHS/GP Surgery phone app to view our records/results on-line. Alternatively you can ask your surgery to supply. If you post results complete with the ranges (numbers in brackets) members will comment. To assess thyroid function ideally we would be looking for TSH, FT4 & FT3, and thyroid antibodies TPOAb & TGAb, but post any other results you have too.
Endo consultant said my thyroid was 'borderline underactive'
I was told that in roughly 1990. I got my first prescription for Levothyroxine 23 years later. Find out what your results and reference ranges are so we can give you information that might help you get treated, so you don't get left to rot like I was.
If you live in the UK or the EU you are entitled to copies of your medical records including blood test results. I don't know the rules in other parts of the world.
Options :
1) Phone up and ask the receptionists (not the doctor) for a copy of your results (be fairly specific) and say you will be coming in to collect them tomorrow. Take identification with you.
2) Phone up and ask the receptionists (not the doctor) for online access to your medical records, including historical records and blood test results. You will have to go to the surgery to collect the codes required for access. Take identification with you.
3) Buy a private test which requires a finger-prick sample of blood, or pay extra for phlebotomy, depending on the requirements of the test you pick.
See discount codes for various companies in this link :
Wouldn't surprise me. I had to have an all day test redone because they did it wrong even though I repeatedly told them they weren't doing it properly and even then I had to argue to stop them doing it wrong the second time.
TSH was 2.82 (0.27-4.2) on another blood test. No one can find the 9am test result that the Endo based his underactive comment on. They've refused to check ACTH level.
Prolactin is normal although I have breast discharge (I'm female).
Endo says IGF-1 is high just because it is and maybe I ate a lot of protein before the test. He said if I ate a whole chicken for example I'd have a higher reading. I'm veggie and hadn't eaten anything actually since the night before
MRI wasn't the one with the dye. Endo said nothing obvious found. My mother has had 2 pituitary tumours but not sure it's hereditary.
Financially private care isn't possible. Single parent and all that but I can get a few private tests if they'd be helpful.
I lost 3 litres of blood and had a transfusion 5 years ago when I had a baby. Someone did mention that can cause pituitary issues.
You may have Sheehan's Syndrome. A GP wouldn't be able to diagnose this and could be missing a lot of health problems as a result. You need to be referred to an endocrinologist with experience of the condition. Unfortunately they can be hard to find, and I wouldn't know where to start.
There was someone who mentioned it recently - they mentioned having been diagnosed with it - but I can't find it, because this website has the worst search options I've ever come across.
Thanks I'll search. I was low on blood until unconscious because the ambulance took forever to arrive. I had a funny turn in hospital the following day but they did do a head MRI and found nothing.
It can take a while for symptoms of Sheehan's to show up. Doing an MRI head scan the day after the blood loss is not enough to exclude Sheehan's.
The other point of course, is that damage can occur that doesn't show up on MRI. But the pituitary might still be damaged. The pituitary is responsible for producing quite a few hormones, and damage doesn't necessarily imply all of them will be low or absent. Sometimes just a few of the hormones could be affected.
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