Hi,
I have symptoms of adrenal insufficiency, with pre-existing hypothyroidism and pernicious anaemia.
I haven’t ever seen an endocrinologist, but A&E ran a SS test for me.
My results:
9:30 baseline cortisol: 197
30 mins cortisol: 436
At my hospital, >420 is fine. However, mine seems to be borderline and I have hyperpigmentation in lots of areas.
I’ve paid to see a private endocrinologist, but wondered if anyone else had borderline results and what happened?
Do you already have a thyroid condition? Are you on levothyroxine?
Adrenal insufficiency is common when hypothyroid
Can be difficult to raise dose of levothyroxine up when adrenals are exhausted
For full thyroid testing you need TSH, FT4 and FT3 plus both TPO and TG Thyroid antibodies tested
Vitamin D, folate, ferritin and B12 need testing too
Hi,
Thanks for your reply. Yes, I have hypothyroidism (75 mcg of thyroxine). And I have pernicious anaemia (tri-monthly injections).
I’ve only ever had my TSH tested... never seen an endocrinologist and GPs stress me out because they blame everything on the chemotherapy I had in 2013 (ABVD for Hodgkin’s lymphoma). Took 4 years of bugging to get a b12 test and it was very low.
I always feel like people don’t believe me that I’m not well. I had a large pulmonary embolism in my main artery of my left lung once and the GP I went to when I couldn’t breathe told me to go home and breathe into a brown paper bag!
Hypothyroidism after Hodgkin lymphoma is recognised problem
nejm.org/doi/full/10.1056/N...
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if under medicated
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Vast majority of patients on here forced to test privately to make progress.
75mcg Levothyroxine is only one step up from starter dose of 50mcg Levothyroxine
Do you have any recent blood test results and ranges you can add?
If not, recommended to get full Thyroid and vitamin testing and come back with new post once you get results
Recommend getting a Fitbit ....gives digital weekly records of resting heart rate and activity levels
Thank you...
I didn’t know that about not taking thyroxine before a test - I hadn’t been doing that. I’ve recently had lots of bloods done (due to my symptoms and them worrying it was a lymphoma relapse). But only TSH in relation to thyroid.
However, I read that it’s not safe to up levothyroxine intake if there is cortisol deficiency as it can stimulate a crisis. So, I guess that ideally needs addressing first?
Autoimmune disorders run in my family - so, getting them doesn’t surprise me.
My B12 is always through the roof because of injections. I know my ferritin was 20, but the dr said I wasn’t anaemic. I take strong iron supplements, but I think I have absorption issues, same as I did with B12.
I take vitamin D daily, and that’s always been in range. They also said my sodium and potassium were normal. But I’ll ask for a copy and post it. My haematology nurse is very good at sending me things. The nurses tend to be wonderful.
I also have a very good haematologist - I’m seeing her on Tuesday, so I may ask her about all of this. See what she says and if she can help at all. But I think they struggle with endocrinology, as it’s not their area.
My heart rate can go up to 130 bpm when resting... they talked about doing a tilt table test for me but who knows?!
We want to have children soon and it’s a concern that my body won’t cope with it at present.
High pulse rate can be due to being hypothyroid and still on inadequate dose
I got my blood results from my nurse. They are as follows:
Calcium - 2.40 (2.2 - 2.6)
Protein - 64 (60-80)
Albumin - 43 (35 - 50)
Globulin - 21
Phosphate - 0.97 (0.8 - 1.50)
Alkaline phosphatase - 61 (30 - 130)
Magnesium - 0.76 (0.7 - 1)
Cortisol - 197
30 min cortisol - 436
TSH - 1.53 (0.27 - 4.20)
Free T4 - 18.1 (11 - 25)
B12 - 1832 (I get injections)
Folate - 18.6 (>3)
Ferritin - 48 (15 - 300)
White blood cell - 6 (4 - 11)
Haemoglobin - 135 (115 - 165)
Platelet - 315 (150 - 400)
Red blood cell - 4.24 (3.8 - 5.5)
MCV - 94 (80 - 100)
So there's no vitamin D, FT3 or thyroid antibodies tested
You could get TSH, FT3 and FT4 plus both TPO and TG thyroid antibodies tested via Medichecks or Blue Horizon
Vitamin D via
TSH is almost at 2 and likely too high for someone on Levothyroxine
FT4 only 41% through range
No FT3 test
Useful calculator for working out % through range
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Ferritin is low. Eating iron rich foods plus daily vitamin C may help improve this. Aiming for at least half way in range
Hi Rowbow88,
I am having the same sort of problems with low cortisol levels. Mine was 235 4 months ago rising to 437 on an SST. This is not a problem apparently as the levels have to below 170 initially, and above 420 after 30 mins. The Endos do not recognise Adrenal Insufficiency, they only recognise and treat when the blood tests lie outside the magic 170 and 420!, ie Addisons. Apparently there is no problem which exists outside those ranges except normality despite having chronic problems like fatigue, dizziness and chronic 24hhour nausea. My cortisol levels have been dropping slowly over the last few years so I suspect I have pituitary failure as I have already lost my TSH completely and have to take T3. I had a head injury many years ago and I suspect this is now causing the problems.
This has effected me so much now that I struggle to get out of bed and I just cannot do anything so I have taken the decision to self medicate with very small doses of Hydrocortisone. Whilst I know that this will probably make my own cortisol levels drop further, at least it gives me the chance to live my life a little and do something other than lie in bed all day just waiting. It seems that Endos do not need ears anymore, they simply go on blood tests and they are not interested in patients, just wanting to get them out the door asap.
My Gp will not accept any instructions from a private Endo so I am stuck with the NHS and have found that their knowledge very basic and out of date. The Endo I saw had no idea about pituitary issues after a head injury either, he was completely clueless and useless. I hope you have better luck with your Endo, and I would be interested to hear what he says to you as there aren't many of us with Adrenal Insufficiency.
Heather
Hi Heather,
Sorry to hear that you’re struggling!
I spoke to a very nice lady at the Pituitary Trust who said many hospitals would treat us as borderline and prescribe hydrocortisone - so if some hospitals would, all should!
I’m paying to see a private endocrinologist as I’ve never been referred to an nhs one - which is remarkable seeing as my endocrine system clearly has issues.
I never really recovered after having chemotherapy 6 years ago, and I think that treatment, in conjunction with inherited autoimmune genes, has lead to my problems.
I’m hoping the fact that I’m changing colour will lead my endocrinologist to understand that my adrenals are on the way out. The pituitary trust nurse said that it’s likely I have Addison’s, but I just haven’t gone down the rabbit hole yet. But she also said that it would be bad to leave it to get to that point.
I bought a BP monitor and my BP is fairly low all day. I think I may also have POTS, but getting that diagnosed is just as difficult!
I’m fairly convinced my body is trying to kill me haha.
I saw the endo - he was very nice but he said adrenal response was adequate and he wouldn’t be concerned about it. I felt he was knowledgable. He has increased my thyroxine by 12.5 mcg and hopes that will help!
Yet another Endo with his head in the sand, yet in the next breath when your cortisol does fall below the magic 170 there will be a mad panic because its now classed as life threatening! How do you feel in yourself? I note he has increased your thyroxin, yes, you will need more as the cortisol and thyroxin actually work together and you need adequate amounts of both to do the job, but increasing the thyroxin with a very low cortisol is not going to compensate.
I am busy sliding down the ramp into feeling very unwell, presuming my cortisol is dropping as I am now shaking like a leaf, my chest is as tight as a drum and I can't breathe very well. The small doses of hydrocortisone that I am self medicating with are simply not enough and I think its time to land myself in my Gps lap before I have a full blown asthma attack. Perhaps if he sees the state my breathing is in, he will actually do something. As usual here you cant get an appt for at least 6 to 8 weeks so thats going to be fun!
Heather
Can you get yourself a cortisol test on medichecks to see what your level is now?
I plan to check my cortisol again in 6 months. Just to keep an eye on it. I did ask the endocrinologist why I was getting pigmentation and he said it was probably just normal for me... so I dunno!
My TSH is too high at the moment, so maybe more levothyroxine will help. I’ll give it a go and see. My only concern was that levothyroxine increases can lower cortisol further. It’s a magical mystery ride!
I’m going through an okay patch at the moment. Fatigued but as I’ve been resting a lot, I am doing better. I just have to avoid stress at all levels.
There’s a few other things I need to checked for (Ehlers-danlos) as I have had various aspects of that from birth - but it didn’t exist back then!
I hope you feel better soon but I would recommend getting your blood done privately and making sure you do have open dialogue with your GP.
even when cortisol is below 170 they think its normal, I had 3 serum cortisol with GP 168 then 2 x 140 thats bottom of the range I saw endo and baseline was 127 and because I stimmed ok to 527 30 mins and 499 at 60 mins the endo says thats good so below 170 is ok I think they only act on it when it is below 100 ..
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