Mum has suffered from adrenal insufficiency over the past 15 years, as well as pernicious anemia, hypothyroidism, low WBC count and was hospitalised several times with low electrolytes. The electrolyte imbalance was caused by the cortisol acetate supplement she takes.
She was numerous doctors and naturopaths.
Over the past year, she has a cup of soup every day at home and her sodium levels have stabilised.
She also takes B5, B6, B12 and other supplements including Selenium, Zinc, Vitamin C, COQ10 and so on.
Since supplementation and introducing regular exercise, her health was much better until she woke up with unbearable neck pain. A physio came to her house and said she’d be better in three days. We also got a locum out who prescribed naproxen.
We initially thought It was a pinched nerve but the pain was so bad she was eventually hospitalised and then released on pain killers after all of the blood tests and scans were fine. She had no mobility in her neck turning side to side but could move her neck down to her chest. She also had the worst conjunctivitis I’ve ever seen, possibly also due to the hypothyroidism. She wouldn’t be able to open her eyes in the morning because there were was so much gunk and stickiness.
A week later, she was hospitalised with unbearable pain in her foot and was unable to walk.
An MRI scan showed soft tissue damage but I suspected it was all due to, her neck and foot pain, hypothyroidism.
They tested her TSH in Hospital after I requested a thyroid test.
Her TSH is 5.92 and her T4 free serum was 13. The endo says the test won’t be accurate because she is suffering from health problems.
The posts on this forum have been eye-opening about the links of hypothyroidism to foot pain. The endo did visit Mum in hospital but he just said she didn’t have an enlarged gaiter. He also doesn’t believe in supplementation. I had to make a special request for B vitamin tests.
We plan on getting her thyroid levels check again next week and I have purchased a Life Extension supplement for Mum to treat her hypothyroidism.
The endo thinks Mum will always need to take cortisol acertate but we haven't done a cortisol test for a long time and I think she will be producting some cortisol.
Your thoughts?
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quicklyinsignificant
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So sorry to hear about your mum's problems - she's really been through it, hasn't she.
I have purchased a Life Extension supplement for Mum to treat her hypothyroidism.
What exactly is in this supplement? Be very, very careful because most supplements that say they are for hypothyroidism contain things that a hypo really shouldn't take. Like iodine.
When you say cortisol acetate "supplement", do you mean this is a supplement that you or your mother buy somewhere, rather than being prescribed by the endocrinologist?
Is your mother prescribed hydrocortisone, prednisone or dexamethasone for the adrenal insufficiency?
If your mother has diagnosed or suspected adrenal insufficiency, she needs to have her cortisol level & response to ACTH checked, and if the adrenal insufficiency is confirmed to be prescribed medication rather than make do with supplements. Even if adrenal insufficiency has been formally diagnosed already, tests need to be done at intervals to check that she is getting the right amount of cortisol - the thing to ask the endocrinologist for in this case is a "day curve". Untreated adrenal insufficiency is fatal, attempting to treat adrenal insufficiency with over-the-counter supplements is dangerous. Even with the correct medication, missing a dose or getting the dose wrong is dangerous. If your mother does have adrenal insufficiency, the pain could certainly be caused by low cortisol levels - the list of things that low cortisol can cause is long and varied, and includes painful muscles and joints. Because of all of the symptoms it can cause, lots of doctors will not recognise adrenal insufficiency - it's hard to identify without up to date blood tests.
Thank you for replying with that excellent information.
This forum is such a great resource.
She takes 2x5mg tablets of Cortisol (cortisone acertate) as prescribed by her endo. One Doctor in the past told her the medication suited her, which I think is bollocks. She doesn't have primary adrenal insuffiency eg Addisons or Hashimotos or Graves disease, she has secondary adrenal insuffiency. One Doctor even suggested
I asked for a cortisol test in hospital but Mum cancelled it. The Clinician team didn't want to do it. They doubed her dose and that made her have more fluid retention in her feet and the sore foot even worse.
Before all of this happened, I thought Mum might have been producing some cortisol herself with the supplements and regular exercise. She said she had been feeling the best she had felt in years. The blood tests confirmed no anemia, low WBC or sodium problems, in Hospital. The pain killers for the neck and foot pain had side effects, though so she stayed on panadol. One even has a heart attack warning.
Endo wrote coristol test and thyroid test which Mum will get done soon but no vitamins testing. They just say go to your GP.
"Before all of this happened, I thought Mum might have been producing some cortisol herself with the supplements and regular exercise" - Unfortunately, that's not how adrenal insufficiency works. The medication suppresses the body's own cortisol production, and prolonged medication results in atrophy of the adrenal glands, so it is the medication keeping your mother alive.
The hospital is correct to double her dose under "sick day rules". However, I would definitely get the cortisol test done, the full day curve if possible. Treating AI is always largely guesswork as there are currently no real-time cortisol monitoring devices generally available (they are in research), but the full day curve gives a good indication of whether dosage and splitting of doses is close to correct.
I am not going to pretend to know about cortisone acetate - that's not the usual treatment in the UK (I am guessing you are not in the UK?), so I don't know if having it split into two doses per day is enough to maintain close to the desired cortisol curve through the day.
Unfortunately, different endos use the term "secondary" AI differently. Some include steroid-induced AI in the secondary group, whereas some classify it as tertiary. Is your mother's AI, pituitary-related or steroid-related?
Through the joy of Google, hydrocortisone acetate requires conversion by an enzyme to become active, whereas hydrocortisone (the usual treatment in the UK) is immediately active, the result being that there is a delay in cortisol levels peaking when using the acetate form. If (and I don't know this for sure) the dosing is the same, 2x5mg tablets per day would be inadequate for the vast majority of patients (most AI patients on hydrocortisone take 20mg per day taken as 10/5/5, but some take more, and few take less). Is 2x5mg your mothers daily dose? Is it taken in one go, or split across the day? I would definitely ask the endo about that. If that is really her full daily dose, I would prioritise the cortisol test even more.
Mum's health is improving on the thyroid supplement.
She is starting to exercise tonight.
Her neck pain has gone and her foot pain is minimal.
We arranged a new blood test from the Endo and he is testing (I requested additional tests based on advice from this forum and my own research so THANK YOU) -
ACTH, am Cortisol, FBC, U&E, LFT, Glucose Random, TSH, free T3, free T4, Thyroid Ab, Ferritin, B12 Red Cell Folate and Vitamin D.
If you want info you can show to doctors about secondary adrenal insufficiency you might find this link of use. It discusses both primary and secondary AI :
It’s always a good idea. The prevalence of diabetes among people with adrenal insufficiency is high and there is no harm in checking. I’d add aldosterone, renin and DHEA to the list too.
I reiterate what I said before - your mother’s daily dose of cortisone acetate appears low, and may want to be split into more than two doses if it behaves like hydrocortisone but with a lag
The major concern is the high TSH (>8), the neutropenia levels (negatively affected by cortisone acetate, like sodium levels?) and Haemoglobin as well as AST and ALT (liver function).
Her sodium levels are OK, which is good. She has a cup of soup a day to keep them levelled out.
She doesn't take levothyroxine, which seems to be the most popular thyroid medication.
We're eagerly awaiting the results of her cortisol test.
The major concern is the high TSH (>8), the neutropenia levels (negatively affected by cortisone acetate, like sodium levels?) and Haemoglobin as well as AST and ALT (liver function).
...
She doesn't take levothyroxine, which seems to be the most popular thyroid medication.
...
Why isn't your mother taking thyroid hormones for her hypothyroidism?
(Ignore the above question - I see it has been discussed elsewhere in the thread. One point I want to make is that low nutrient levels will often make thyroid hormones difficult to tolerate. )
...
I have had high levels of ALT a few times in the past. I can't say anything about AST - it never gets tested for some unknown reason.
I've managed to reduce ALT substantially by reducing my intake of sugar and carbs. By carbs I'm referring to (mostly) baked goods and puddings. Unfortunately I am a bit of a sugar and carb addict, and my success in reducing ALT will last for a while then my intake of junk food will rise and ALT increases again.
In previous tests, her ALT and AST levels were fine and she doesn't eat any sugary snacks and keeps her sugar intake to an absolute minimum. She doesn't even drink, for example, orange juice.
Red Blood Cell: 3.52 (Reference Interval: 3.80 - 4.80 ×10¹²/L)
HCT: 0.33 (Reference Interval: 0.37 - 0.47 L/L)
MCHC: 319 (Reference Interval: 320 - 360 g/L)
All the above low results indicate that your mother is anaemic and this is most likely to be caused by low levels of one or more of the following:
Iron
Ferritin (iron stores)
Vitamin B12
Folate
You should ask for a full iron panel and for your mother's vitamin B12 and folate to be tested.
An iron panel usually consists of tests for serum iron, ferritin, transferrin saturation, and TIBC (Total Iron Binding Capacity). It would be helpful if it included CRP too.
If she hasn't had her vitamin D level tested in recent months it should be tested too.
She's not keen on leovthyroxine. Could increasing the cortisol acertate while she was at Hospital affected her TSH reading? is there any other supplement you'd recommend?
I think the cortisol acertate suppresses her immune system, hence the low neutrophils. But her platelets are in the normal range, for the first time.
quicklyinsignificant 'She's not keen on leovthyroxine. '
We see this sort of comment every now and then on this forum. Very often, it stems from the fact that people think levothyroxine is some sort of nasty 'drug'. And don't realise that it is actually a replacement hormone.
Thyroid hormones are as necessary to the human body as food and drink. Without the appropriate level of thyroid hormones, the human body cannot thrive. If the thyroid gland cannot produce sufficient thyroid hormone by itself, for whatever reason, then the only way to remedy that in the long term is to take replacement thyroid hormones.
NB, I have not followed your posts here, so am not advocating that your mother should take levothyroxine. I'm simply pointing out that people will resort to taking all manner of 'supplements' in order to avoid taking thyroid hormone replacement medications. Often, these supplements are taken in very large doses, in the mistaken belief that 'more is better', which it is not.
Looks like she is taking 2350 micrograms of iodine a day. That is more than 15 times the standard daily requirement (150 micrograms). In other words, quite a lot.
And Proprietary Cruciferous Vegetable Blend 550 mg (Broccoli super concentrate extract (seed and plant) [providing glucosinolates]; watercress 4:1 extract (whole herb); wasabi powder (rhizome))
Both of which would need considered regarding thyroid management. Afraid I run out of understanding but higher intakes of cruciferous vegetables can cause goitre and hypothyroidism. Is this a high intake? Sorry, have no idea.
I've scheduled to have a chat with LifeExtension tomorrow and will discuss the iodine in the supplements, as well as increasing Vitamin A and B12 to address neutrophils and anemia.
Thanks to everyone who contributed.
We also have an appointment with Mum's endo next week.
If she is not suffering from anaemia actually caused by lack of B12, I think adding more B12 won't do anything to help. (Anaemia is a relatively late stage symptom in Pernicious Anaemia. Many are diagnosed with PA and treated without ever becoming anaemic.) If she can absorb B12 supplied orally, 200 micrograms a day should be plenty.
When it comes to vitamin A, some supplements suggest that beta-carotene is vitamin A. But that only applies of the person can convert beta-carotene into vitamin A. And supplementing with pre-formed vitamin A needs to be done very carefully as an excess can be dangerous.
Looking at Mum's old blood tests from 2013, it looks like she had a cortisol saliva test and they initially suspected thrombocytopenia but ruled it out with stool tests and other blood tests.
I think long term, she needs to gradually reduce the cortisol in a safe way and exercise and handle her stress better with, for example, meditation.
It has too many side effects, like suppressing the immune system.
I've introduced so many supplements but they haven't really changed the results in a dramatic way.
I think in the medium term, we'd like to weane off the cortiol acertate and introduce more exercise (incl cardio and weight training) and more supplements to support her body and how it handles stress. There are too many side effects with the cortisol negatively affecting her immune system and her electrolytes.
I'm very aware that you have to be very careful so you have to weane off very slowly and we'd get more regular blood tests, perhaps every month or three months.
I'll discuss this further with the Endo and the Life Extension team.
Thanks to everyone who has contributed to my post requesting help and advice.
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