I’m hoping someone might be able to help me as I’m really struggling. Apologies for posting this here as I don’t suffer with thyroid issues, but a lot of posts about Addison’s have popped up here so I’m hoping someone may be able to help.
I’ve been struggling for a few weeks now when I started with a cold virus that I had for 2 weeks and then after it started to go, I started with shoulder and chest pains and a really awful feeling of being generally unwell. The walk in centre sent me to my GP, who sent me to A&E who checked me out and established that they could find anything that was an emergency and sent me away with advice to rest up and take paracetamol for a few days, and to go back to the GP if it doesn’t improve. Well it hasn’t improved and I’ve now got many other symptoms, but the primary ones are fatigue, dizziness, nausea, headaches/migraines and I have totally lost my appetite, so I’ve also lost half a stone in about 2 weeks (I didn’t really have half a stone to lose).
After several blood tests, everything has come back as mostly mid range, although my ferritin is low in the range, and vitamin D is high (I supplement since a deficiency 3 years ago).
Dr Google pointed me to the Addison’s page on the NHS pretty much immediate which seemed to fit with the exception of the darkening skin. I’ve had a cortisol test which has come back as 377nmol/l (range is 184-623), and I’m on HRT which I believe can increase it?
I’m waiting for a call from my doctor as she also asked for renin activity, ACTH and Aldostrone, but those results aren’t back yet. Does anyone know what this result might mean and what I should ask my doctor when she calls?
Many thanks for any advice!
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CharlieRN
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What time of day was your cortisol test done? Cortisol varies throughout the day with it being the highest first thing in the morning, if your test was done around 9am then it's is not too bad, it is slightly on the low side of normal but not significantly so. although as you rightly say HRT can give an elevated result. Some End's would do further testing but others may not. If you've had your ACTH blood test done, was it put on ice straight away? It's invalid if it wasn't put on ice or taken to the lab straight away.
It was done at 9.05am, and the ACTH was down at the same time and they knew it had to go straight down to the freezer. That’s one of the ones I’m still waiting for.
So it is on the low side of normal. If you aren't under an Endo then make sure you go to one that understands pituitary/adrenal issues as not all of them do. The Pituitary foundation have a list of Centres of Excellence so you could give them a call. I have secondary adrenal insufficiency due to a pituitary tumour, the treatment is more or less the same as Addisons
Three years ago, your TSH level was 4.0. That’s not normal and I wouldn’t call that “no thyroid issues”. Have you had thyroid function tested more recently? I’m just wondering whether your thyroid is now finally giving up the ghost...Your B12 was also very low. Are you still having injections? I see you had a loading dose back then—did you have any more treatment?
I had my TSH done recently and it was mid range although I can’t remember exactly what the number was. I stopped the B12 injections as they weren’t making any difference to how I felt, and once I discovered the low stomach acid issue, I figured that was the reason most of my levels were a little out of whack. When I started taking the stomach acid tablets, all my symptoms cleared up within 3 months. B12 was over 500 this time but I’ve been supplementing recently, so I know that’s a false reading anyway. Ferritin was a bit low, but not as low as last time so I’ve put myself back on the iron tablets.
My doctor rang late yesterday to advise the other 3 were pending as they’ve been sent to Leeds for the tests, but said my cortisol was normal. I mentioned I’d read that adrenal issues would normally be ruled out if it was over 420, but lower than that could warrant further investigation, especially because of the HRT. She was interested to hear that and wasn’t dismissive and said let’s see what the other results are and we can make a plan for next steps. So I’m happy she’s not just taking the fact that I was within range as being not something to have a look at further. I just hope the other results are back on Monday. It’s frustrating not knowing what’s going on.
Mid range is not a good place for TSH to be, so if I were you I’d be looking a little closer at that. The TSH range is stupidly wide. From observation, a normal TSH for someone with no thyroid issues seems to be somewhere between 1 and 2. Anything over 3.0 is indicative of a problem.
Hypothyroidism, however “mild” can cause low stomach acidity—that’s one reason why being undertreated for hypothyroidism can trash your vitamin and mineral levels.
Honestly, I’d be pushing to get FT3 and FT4 tested—especially FT3.
Hi there - sorry you are not feeling well. As an Addison's Patient - the symptoms you are suffering would seem to be textbook low cortisol - including the loss of appetite and weight loss - I once had an infection and didn't updose and lost 5 lbs in two days without trying. Might I suggest for further information you go to Addison's Disease Self Help Group (ADSHG) and they can further advise what you should do. It is most important you get this sorted out as it can be dangerous if you get ill and don't have enough cortisol. On reading your post again - the HRT would be having an impact on the adrenals in one way but in another the adrenals will need it - if that makes sense. Your stomach issues can be attributed to low Vitamin C that makes stomach acid - your adrenal glands need Vitamin C big time - the adrenals are the biggest user of C - I myself notice when my adrenals are under pressure as the C is removed from elsewhere in the body i.e. skin issues. Can I also say be careful taking iron tablets at the moment unless you have too. ADSHG is free for the forum still I believe. Here is something interesting that helped me ;
Quote
Vitamin C. This powerful antioxidant vitamin is directly involved in the production of cortisol in your adrenals. So besides the other health benefits it carries (boosting your immune system, protecting from free radicals), vitamin C is also an essential building block for the recovery of your adrenal glands.
Of all the vitamins and minerals involved in adrenal metabolism, vitamin C is probably the most important. In fact, the more cortisol made, the more vitamin C used. Vitamin C is so essential to the adrenal hormone cascade and the manufacture of adrenal steroid hormones that before the measurement of adrenal steroid hormones became available, the blood level of vitamin C was used as the best indicator of adrenal function level in animal research studies. Vitamin C is used all along the adrenal cascade and acts as an antioxidant within the adrenal cortex itself.
1. Healthy adrenal function requires vitamin C, and some of the highest
concentrations of vitamin C in the whole body are found in the adrenal glands.
2. Vitamin C is utilized by the adrenal glands in the production of all
of the adrenal hormones, most notably cortisol. When you are faced with a stressful situation, your vitamin C is rapidly used up in the production of cortisol and related stress-response hormones.
3. "The adrenal gland is among the organs with the highest
concentration of vitamin C in the body. Interestingly, both the adrenal cortex and the medulla accumulate high levels of ascorbate. Ascorbic acid is a cofactor required both in catecholamine biosynthesis and in adrenal steroidogenesis." Unquote
I have a lot of experience with adrenal issues and thyroid so please feel free to ask and I will do all I can to help - the information I have gleaned is over a 25 year period of finding out eventually that my issues were more adrenal related more so than thyroid !!!
NB When you speak again to your GP etc. mention Adrenal insufficiency - and for information my cortisol SST rests never showed I was low. It can come from another root and won't show in blood tests etc.
Thank you that’s really helpful. I’m not sure I have low vitamin C as I’ve been taking a Berocca every day for about 3 years now since my original problem, and that contains 476mg of vitamin C. So I’m hoping that would be enough to ensure that things would be working properly. I have noticed my skin is taking a much longer time to recover injuries/spots than it normally does though and has been struggling for weeks.
Do you think I should stop the HRT? Or keep it going so as not to make my symptoms any worse? But then am I masking the problem and then could potentially hide the issue in any future tests? It’s so hard to know what to do for best!
I’ve lost another half a pound, which doesn’t sound much but I’m now under 130lb which I don’t think I’ve been since I was a teenager.
My massage therapist was round last night (I normally have a monthly aromatherapy massage) and she did a bit of reflexology on my and said my adrenal glands appear to be struggling and my pituitary gland also. I’m a little skeptical about it to be honest, but it really flipping hurt when she pressed down on the part on my foot labelled as adrenal area!
Hi there - Berocca was a fantastic product until they put aspartame sweetener in it and I could not take it any longer - I ached like I had the flu. Better to take another product if you can. No don't stop the HRT stay with it as it will cause more problems at the moment until you have the adrenals sorted out. HRT stimulates the adrenal glands. I trained a little in Reflexology and can tell you it is accurate. Having been pulled aside in class and told I had a lump in my left breast (which was benign) and I was amazed as I had been told about the very same thing the day before by breast clinic. Try taking 1,000 mg of Vitamin C if you can - not slow release as it can stay in system too long and cause pain in stomach. Anything else just ask.
Still no news on the test results but I feel absolutely shocking today. So weak I can hardly stand just to brush my teeth, still got no appetite and losing weight, pains in my body and feel wiped out. And emotional.
Given that a referral on just my cortisol result is unlikely at this stage, is there ANYTHING I can do to make myself feel any better? I can’t get into my GP until Thursday at the earliest. I may be able to get in to see a different GP tomorrow (but I’m not guaranteed to see one that will actually listen to me and not fob me off with go home and rest and take some paracetamol, as I’ve experience of this with many of the GP’s in this surgery unfortunately).
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