Brief background - Hyper with Graves diagnosed Feb 2012. Aug 2013 I had Total Thyroidectomy. Ever since op TSH has been ridiculously high, until 1 month ago when it finally fell into range. During this time I had specialist bloods done as T4 and T3 were both in range, and found out my T4 was unreliable due to an antibody in my blood (not Graves - something else).
I'm also on Thyroxine and T3 since February 2015. Felt great until Aug 2015 and started to feel tired, little energy, low etc. Thyroid results were all great - optimal levels, so ended up having a full blood test of all hormones/vitamin levels including Cortisol.
Results show I have very high cortisol levels. Range 171-560 - I'm 1172!!
I also have low FSH and LH
I'm now being sent back to my endo for further investigation. GP mentioned possible Cushings/problem with my pituitary. My Mum had a Pituitary tumor 25 years ago, but has no other endo issues.
I'm so upset and low about it all. I'm desperately wanting to try for baby as hubs is a fair bit older than me and doesn't want to leave it too late, and now this. FSH and LH being low isn't a good sign either.
Anyone had high levels or Cortisol? What was treatment etc.
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ChelleBelleX
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No. My problem was the exact opposite...my cortisol levels were falling to a ridiculous level. When I hit 25 I had to start steroids. They've told me that they still don't understand my case even now. But interesting a few weeks back when I last saw my endoc he asked for cortisol testing as he always does...and I had taken a steroid prior to seeing him and my levels came back at 400....which is the highest they've been since I've had this illness. So as you can see cortisol levels vary a lot and it's best to have them checked at different times of the day/eve. Good luck xx
Hello ChelleBelleX,
Welcome to our forum and sorry to hear that you are not feeling well.
If you have had 6 months of wellness on T4 & T3, these meds obviously suit you and something else now is stopping them from working.
Your cortisol is very high and should be investigated, equally your operation and then having high TSH levels will have placed huge strain on your body and encouraged high cortisol secretion.
Are you gluten free? Have you got thyroid antibodies (& other) under control?
High antibodies levels will cause inflammation in the body that will suppress thyroid receptor sites even with "normal" thyroid hormones blood test results (a bit like insulin reisistence.) High cortisol interferes with the HPA axis which in turn suppresses thyroid function and weakens the immune system.
The adrenals manufacture a number of hormones, such as cortisol, adrenaline, aldosterone, oestrogen and testosterone. LH and FSH are produced by the pituitary gland and stimulate production of estradiol, progesterone, and testosterone, etc.. These steroid hormones act upon the endometrium to make it receptive to embryo implantation.
When one is low, the either is low also and can be due to a pituitary or hypothalamic problem.
I wouldn’t suggest supplementing your adrenals until your consultant has completed his investigations. A low-glycemic diet balanced in protein, healthy fats, and complex carbohydrates like vegetables has a positive influence on hormones. Protein is important for the adrenals but requires adequate stomach acid (HCL) for digestion.
Also ensure all nutrients are optimal. People with low thyroid hormone are often deficient in Vit B12, Vit D, folate and ferritin which are indirectly required for good thyroid function.
This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.
You need to discuss your planned pregnancy with your consultant as normal thyroid hormone levels are critical in the development of the baby’s brain and nervous system.
During the first trimester, the fetus depends on the mother’s supply of thyroid hormone, which comes through the placenta. At around 12 weeks, the baby’s thyroid begins to function on its own. TSH should be kept in the low-normal range (0.4–2.0 mU/L) and an FT4 concentration in the upper reference range.
TSH & T4 levels should be monitored every four weeks and your Levo dose titrated during the first trimester, and then at 16 & 28 weeks of gestation.
These recommendations are based on information from a consensus guideline produced by the Association for Clinical Biochemistry, the British Thyroid Association, and the British Thyroid Foundation [BTA et al, 2006]; expert opinion in a guideline produced by the Endocrine Society [Abalovich et al, 2007]; expert opinion in a learning module [Edwards and Vanderpump, 2007]; and the opinion of CKS expert reviewers. Some of the evidence to support these recommendations is based on observational studies.
The recommendations on monitoring of thyroid function (TSH and FT4 levels) are based on expert opinion in guidelines [BTA et al, 2006].
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I am not Gluten Free, but I have cut out bread and reduced pasta etc just for the fact its stopped making me bloated. I have a good diet, and have been slowly loosing the weight I put on after op by calorie counting to 1600 calories (or more if I've been exercising - eat back the calories I burn) I've lost 10kg since 1st April. I run and go to Gym too, so quite active.
Additional Vitamins - D, B12 etc are all very good. I have them checked regularly.
Thyroid antibodies from what I gather have not really been checked since my op. I think this needs looking in too.
I have spoken with Endo about pregnancy, and his guidelines for me are even more strict given I'm on T3 and have no thyroid. If I get pregnant I'm to see him weekly until levels are where they should be (like you put above), and I also have to stop T3 as this can block the placenta of Thyroxine, which Baby can't produce until 16 weeks. Thankfully I've done a lot of research into my disease, and have a very good endo - at least I think I do.
GP also said Pituitary is responsible for asking Adrenals to release Cortisol - this is the reason he said I could have an enlargement or growth (which my mum had 28 years ago)
The strange thing as I said, I had 6 months of feeling great - yet TSH was around 30-40 at this time - clearly not right!!! T4 was usually at top end if not slightly over range, but as I said I felt good then.
As I had Graves, obviously these antibodies do not go away, is it possible that they have changed their attacking target to something else - pituitary, adrenals etc?
I was under impression that having TT would solve Graves, but I don't feel that is the answer
I'm on Liothyronine (T3) as well as Thyroxine, and been told I would need to stop Liothyronine if I got pregnant, not Thyroxine.
Hi Sorry to hear that you've got high Cortisol levels. Firstly have a look at pituitary.org.uk/ you will find many answers there.
Cushings can be caused by either a pituitary tumour (almost always benign) or by a tumour on your adrenal glands. It can also be caused by having too many steroids., but as you've already got problems with your thyroid it is more likely to be due to a tumour somewhere.
Your cortisol levels are high so you are well on your way to a diagnosis, some people take ages to get diagnosed as it's a supposedly rare condition. You will probably have many more tests including 24 hr urine collection an MRI to see if the tumour is on your pituitary - that's where most of them are.
For Cushings the only real solution is surgery.
Have you got any other symptoms of Cushings? ie excessive & rapid weight gain, high blood pressure, muscle weakness, fat face, buffalo hump, which is a lump at the top of your spine; face gets red, acne, stretch marks on your tummy. You may have some of these.
There are some groups on Facebook for Cushings; alot of people are in the US but there are quite a few from the UK as well. "Cushings!" & "Cushings disease". I have learnt a lot from the internet.
I had surgery to remove a 8mm tumour in September & am slowly recovering. Do feel free to pm me.
I hope you get some answers soon; I do know that there are several younger ladies on the forum who have had a baby when diagnosed with Cushings.
Pauline
ps I know it must feel all a bit overwhelming at the moment x
Thank you for your response... strangely I don't feel I have any of those symptoms. If anything I've been slowly loosing weight due to healthy eating within 1600 calories and regular exercise (mainly running).
only reason I went to GP was because I thought I had adrenal fatigue - opposite to what I've now found out. I'm tired, limited energy, feeling very low and depressed, no appetite, unable to sleep etc.
And yes, its all very overwhelming especially as I was feeling so much better a few months ago and now this x
This is what I thought! I will ask to have antibody levels checked. I'm now seeing endo on 8th December to discuss Cortisol levels and will bring this up with him too
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