Excuse me, SlowDragon, but I have to jump in and say what a great link that it. Someone else on here is trying to get a diagnosis of CH, Kittybaker , so I hope you don't mind if I pass it on to her.
Thank you, apparently when I was born the cord wrapped around my neck and I went blue. Don't know if that affects anything? Some head bangs too but nothing that knocked me out etc. Never had a coeliac test either
But most people with Hashimoto's (high antibodies) need to know because then they can take proactive approach. Changing diet and checking vitamin levels.
The fact you vitamin levels have been low suggest gut might be involved
Hashimoto's often affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Or low stomach acid can affect vitamin levels
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies. Hence why it's important to test antibodies
Ideally ask GP for coeliac blood test first or just buy online for £20
Thanks very much. I've just ordered a Thyroid Check Ultra (TSH, FT4, FT3, TT4, both antibodies, active B12, Folate and Ferritin). I opted not to test Vitamin D again as it's £40 more and it was a good level in December, it's sunny a lot now and I'm supplementing daily with 1-2x 1000 IU tablets. Can always get it checked again in the future.
I also ordered the coaelic home test and my endo is arranging an SST for my low cortisol.
I pray I get somewhere. I'm dragging myself through life, literally crawled up the stairs on my hands earlier (not always that bad!).
Failing that, I will be looking at something like a male hormone panel, a pituitary panel (?) and a sleep apnoea home test, as apparently I've always snored.
Your am cortisol level is very low, first thing in the morning it should be around 400-500nmol/ls. No wonder you feel so unwell! At that low level you should have an emergency appointment with an Endo. They should do a synacthen test to see how you respond, but at that level they should be doing urgent tests & start you on hydrocortisone. Please push for an urgent appointment, seek immediate treatment if you start having diarrhoea & vomiting or if you become confused, you may be going into an adrenal crisis & need emergency treatment. If you are on Facebook then go onto the Addisons information & support group for more advice & help. Your thyroid panel will be messed up if your cortisol levels are low. Good luck!
Sorry I missed that you were seeing an Endo tomorrow - waiting 5 months is a long time with a low cortisol!! Where are you being seen? Be aware that many Endo's don't have a lot of experience with pituitary/adrenal issues, they mostly deal with diabetes or thyroid issues.
At a local hospital in the UK. if they don't seem to know and their tests don't show anything, I will go private and maybe do the 4 part saliva test, maybe even an MRI
The problem of seeing someone privately is that they are mostly NHS Endos' trying to make a bit extra cash, you will need to find one that understands adrenal/pituitary issues. Also saliva isn't a good way of diagnosing Addisons as they are not good picking up low levels of cortisol.
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Newbie
GP Appointment
1st Endo Appointment
New member with Medichecks thyroid results that I need help with.
Update on Endo appointment this morning! (warning long post!)
