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Thyroid UK
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1st Endo appointment tomorrow

Finally been referred after a private blood test showed morning cortisol was low - 100.

Mid 20s male with extreme fatigue for years.

'Untreatable' depression, loss of libido, itchiness, weakness, reactive hypoglycemia, brain fog, worsening memory, looking pregnant sometimes (!!) despite eating 1-2 meals a day, tired voice, lower intolerance to heat...

The tests also showed my TSH went from a consistent 0.9 over the years to 2.9. FT4 was 18.

So TSH isn't dangerously high but will they test further as it's gone up and is suboptimal?

Vitamin D, B12 and folate were all slightly low before but with supplements they are normal. Ferritin was low as a kid, but that's been normal since.

Also due to the loss of libido etc I'd like a full hormone panel or something done.

I don't know what to expect but I hope something useful after a 5 month wait. Any advice or comments?

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Essential to test FT3 at same time as FT4, TT4 and TSH

Both TPO and TG antibodies need testing too for autoimmune thyroid disease (Hashimoto's)

Evaluation for central hypothyroidism

endocrinologyadvisor.com/en...

Have you ever had trauma or bump on head, whiplash, born by breech delivery or anything else that might upset pituitary function

MRI of head to check for pituitary abnormalities

Have you had coeliac blood test?

Endo should test all/most of these and sex hormones too

Scan of thyroid possibly helpful too

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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. :)

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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

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I asked for antibodies, he said 2-3% of the population have them so unless the initial test flags something he does not see the use.....

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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

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Conventional medicine still doesn't "get" the importance of good gut health and connection to thyroid

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Thanks a lot, where can I get this £20 test from? :)

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Coeliac test

healthcheckshop.co.uk/store...

You may be able to do one via Medichecks too

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Thank you so much, I ordered it! Have you done it? Is it really reliable?

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My kids have and I know several others have.

I tested negative (on NHS) on coeliac blood test, but endoscopy confirmed as gluten intolerant.

Gluten intolerance is similar to coeliac, but currently no test for gluten intolerance

It's definitely worth ruling coeliac in or out before trying strictly gluten free diet

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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.

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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!

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Thank you, hopefully they run all the tests and don't try to give me an excuse.... I'm tired

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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.

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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

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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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Thank you, I'll keep it in mind :) Hopefully they know their stuff

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Best of luck. Your post made me sad for you, you are too young to be suffering like this, I really hope the endocrinologist you see helps. Hugs

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Thank you so much :)

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I got some results back, they said all normal over the phone:

Morning cortisol - 238 (they are arranging short synacthen test to complete investigation)

TSH - 0.8 (down from December's 2.94 result?!)

FT4 - 16.2

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