Hi all. I posted before about synacthen test, and I've finally had my result and thyroid results.
So I had the synacthen test on 11 May, my baseline cortisol at 9.15am was 163 nmol/l, but my adrenal glands acted normally to the synthetic hormone so they're ruling out adrenal dysfunction. I asked is the low cortisol not a sign of pituitary malfunction and she said no, if pituitary not working my adrenal response wouldn't have been normal and they think I just have a low baseline cortisol. Now looking at NICE guidelines they say if cortisol less than 100nmol/l in morning then hospitalise and treat! Like how is my cortisol that low and they think that's normal?
They are going to try me on a low dose of levothyroxine to see if that improves my thyroid levels as my last two tests shows low TSH and T4
Serum TSH level 0.58 mU/L [0.35 - 5.5]
Serum free T4 level 10.7 pmol/L [10.5 - 21.0]
This is where I'm going mad, if my T4 is that low my TSH should be up, but it's not. So couldn't that also be a sign of pituitary malfunction because my thyroid isn't getting the signal to make more T4 just like my adrenal glands aren't getting the signal to make more cortisol unless they stick a synthetic hormone in me.
I'm not medically trained but her response just seems totally illogical. Am I barmy?
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Low thyroid levels tend to result (eventually) in low cortisol levels
Just testing TSH and Ft4 is completely inadequate
Normally low Ft4 and Ft3 results in TSH rising……but other things can affect TSH…..low vitamin levels, high thyroid antibodies and low cortisol
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
Have you had thyroid antibodies tested?
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
Or an ultrasound scan of thyroid
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 slowdragon, sorry I should have said they tested thyroid antibodies and that came up normal. Not sure if TPO and TG she just said no antibodies. All vitamin levels normal. They tested for pituitary function which was also normal apparently but they didn't do the ACTH test that goes off on ice. I haven't had a scan of my thyroid but she tried to feel for it and she couldn't feel it with her fingers so definitely no goitre.
She said they'll prescribe 25mg (or mcg can't remember) of levothyroxine and retest and 3 months but that I'm being discharged as there's nothing obvious from an endocrinology perspective that's causing my symptoms.
I have wondered about private tests but what do I do once I have them? Take them to a private endocrinologist?
Not sure if TPO and TG she just said no antibodies. All vitamin levels normal.
First step is to get actual results and ranges
You are legally entitled to copies of your test results.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
NHS only test TG antibodies if TPO are high.
Significant minority of Hashimoto’s only have high TG antibodies and struggle to get diagnosed unless test privately
20% Hashimoto’s patients never have high antibodies. Ultrasound scan of thyroid can diagnose if both antibodies are negative
Vitamin tests,
NHS only tests and treats vitamin deficiencies. We need OPTIMAL Vitamin levels
Eg B12 range is typically 180-680. NHS would say anything within this range is normal. On levothyroxine we need B12 at least over 500
Standard STARTER dose levothyroxine is 50mcg
Obviously they are starting you cautiously on 25mcg…..but dose will need increasing slowly upwards in 25mcg steps (or possibly smaller increase of 12.5mcg ) over many months
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Many people find different brands of levothyroxine are not interchangeable
Which brand of levothyroxine are you starting on.
Unless you know you are lactose intolerant, best to avoid Teva brand, especially initially as Teva upsets many people
Levothyroxine doesn’t top up failing thyroid, it replaces it….so likely to eventually need at least 100mcg levothyroxine daily (unless extremely petite)
I think you're right and your doctor is wrong. You do have a pituitary malfunction. And, she was totally wrong when she said if pituitary not working my adrenal response wouldn't have been normal. If that were true, there'd be no point in doing the test! lol
I have recently been tested with low cortisol at 212 and will be booked in for the Synacthen test.
Interestingly, I had low/normal TSH on diagnosis at 2.9 despite a below range T4 at 10.9 (12-22). I have long argued that I have Central hypothyroidism, but so far have not had agreement from my Endo. I was put on Levothyroxine monotherapy for 7 years which didn't help.
My case is complicated further because I also have genetic polymorphism DIO2 which affects conversion of T4 to T3. So in 2016 I had T3 added which made a huge improvement in my wellbeing. Still not optimal, but so much better.
Recently I asked for a small increase of T3, but my Endo thinks I'm overmedicated, so this led to blood tests showing the low Cortisol.
Lol course. I decided to get a private blood test done of my cortisol, ACTH and DHEA but I'm still waiting on those results. I'm also stills waiting on the letter from endocrinology, but my request for a second opinion has been listened to but I now don't get to see endocrinology again until November! I've put in a subject access request because I want to see everything they tested so I can go fully informed when I see them in November. I have started levothyroxine in the meantime though which I think has already helped a bit, so it's just sorting the low cortisol now and understanding why. It's a long old slog for answers.
I am currently in the same situation like you for the low cortisol thing, although mine is higher than yours 190s ( I have been told). They wouldn't let me see the blood tests result done by the endocrinologist at all. My synacthen test came back as 'satisfactory'. How was your private blood test cortisol, ACTH and DHEA result?
I'm still waiting on the results of the private test. It takes two weeks and I asked for Dr comments on the results so that adds a bit of time too. I don't get how they can view a 9am Cortisol test that low as being "ok". Sure a good response to synacthen shows the adrenals can work, and that they've not atrophied. It doesn't prove the pituitary gland is working though and it's awful they don't investigate that at the same time.
So I had the synacthen test on 11 May, my baseline cortisol at 9.15am was 163 nmol/l, but my adrenal glands acted normally to the synthetic hormone so they're ruling out adrenal dysfunction. I asked is the low cortisol not a sign of pituitary malfunction and she said no, if pituitary not working my adrenal response wouldn't have been normal and they think I just have a low baseline cortisol.
Read pages 68 - 70 in this document known as the "Endocrine Bible" :
Does it match what happened in your test? It is quite common for hospitals not to test ACTH even though they should do.
If ACTH isn't tested then the diagnosis of secondary (and possibly even tertiary) adrenal insufficiency will be missed.
In secondary adrenal insufficiency the adrenal glands can be perfectly healthy but they aren't getting enough stimulation from ACTH produced by the pituitary to produce adequate levels of cortisol.
And take a look at "Associated conditions" in this link to the ACTH article in wikipedia:
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