Hello all, I'm so sorry my title sounds absolutely pathetic but I really feel like this is it. I'm on 20mcg T3 3 times a day. I have been.on opiates for years due to a back injury at work. This in turn made me tilt to the side called manual scoliosis. That years later and just recently caused me to get arthritis in my right hip. I have been banged from one dept and another and they couldn't decide if it was my hip or my spine. This has gone on for over 2 years or more. I finally had a total hip replacement on November 13th, 2024. After that surgery for a couple of days, I was OK but then I started to feel really ill. I sometimes can't get out of bed due to pain and exhaustion. I wake up feeling like I have a flu virus everyday single day. I have had the glands under my tongue and my face has changed shape due to swollen glands at the side of my ears and also under them and in my neck. I was sent to A/E on Friday by a GP and was told I needed to see an endocrinologist and he said ENT thought the glands were separate from what I have going on and said for my gp to put me on the 2-week cancer pathway. My canceled appointment on Monday with my endocrinologist suddenly got reinstated after I went to the hospital and I actually saw this endo on Monday for all that he didn't help. He said he thought I had a lot going on and it's easy to blame thyroid issues and all they seem to do is put sticky plaster on it. He said it's probably good that I'm not on hydrocortisone anymore as that puts weight on you. He said I needed to come off the mst etc that I have for pain. I have been asking them that for years. I obviously need a replacement for pain that they are not forthcoming to help.
In the last few months, I have put on so much weight which I hate and makes everything harder.
Literally still having hypo symptoms and I feel still have issues with my adrenals too, he is not helping. He has added 50mcg levothyroxine despite it making me ill but part of me thinks shall I try it again as I feel so desperate although I haven't yet. I asked him if I struggled to take levothyroxine would that mean I wouldn't be able to take NDT. He shocked me by saying that he knew nothing of NDT at all but he would monitor me if I wanted to try it. I was very shocked he said he knew nothing.
My estrogen testosterone, SHBG and dhea are dropping and my thyroid is dropping then going up a bit and they did a cortisol blood test that was just over the limit despite me telling him that it has always done that but when given a CRH test it showed the 3 middle tests low. They then said I had partial adrenal insufficiency and put me on hydrocortisone that never made me feel any better. Last year I titrated down and stopped them. They only did the CRH test after I provided them with my Regenerus cortisol saliva tests which are in my posts. I have ordered another from them and I will do it for my benefit and post when I send and receive the results. Apart from all symptoms I have no appetite and if I didn't have to eat I wouldn't. Another really distressing symptom is no libido whatsoever.
I also found from having a low blood pressure and heart rate that in the last couple of months, they are much higher.
What do I do now? I'm worried about the glands and I'm worried about trying to increase my T3 in case that is what is bringing my heart rate and blood pressure up.
Sorry I have blood results but I.need to be less stressed to find where I put them.
My symptoms haven't really changed from my other posts except I'm worse. I also keep getting bloating with horrendous burping and feeling sick with a ring of pain going around my back. I literally feel like I have gone from a person who pushes through pain etc to not being able to push through anything.
Any advice and I would be grateful x
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debsmitch60
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Sending hugs, bae. That's all I got for ya. I feel your pain tho. 'One of life's copers' my old GP called me. 😂 😆 In your moccasins, which have some very big stones in them, I think I'd be tempted to start from the very beginning and see what happened first? Work your way through it? I bet AI could help, find a techie kid and learn from them!
Don't give up tho. Just you and I atm but we'll all pile in soon enough. Forge on. The day may come when it is worth it to do so. Said my shrink, years ago... he was right 🤗
Thank you so much, that's so kind. Sorry it's been a while for replying, I keep being ill. I'm trying to sort it myself but I find it difficult as I really cannot think straight. I wish you all the best too x
When were vitamin D, folate, B12 and ferritin levels last tested
What vitamin supplements are you taking
Aesthetic can substantially lower B12 levels
What are your most recent thyroid results
Which brand Levo have you been given
Which brand T3 are you taking
Retest thyroid and vitamin levels 6-8 weeks after starting Levo
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Hi SlowDragon thank you for all your info. I'm getting these tests done on Tuesday morning. I think the only one missing is folate. I havd emailed for my last 3 months of blood tests. The endocrinologist is also going to scan my neck. The T4 which I still haven't asked are Accord. I'm still on the 2 week cancer pathway and the glands are still swollen, it now bei g around 7 weeks. The T3 i take is generally Mercury Pharma but also Morningside.
I bought the Regenerus cortisol saliva test, the one that is £130. I will do that tomorrow. I'm trying to find things out.
I'm also looking at a Doctor that takes into account thyroid, adrenal and Menopause hormones. The other thing is ? and just like that what I was going to write has gone. It's making me worry more.
Then it's back i remember whst i was going to say and that is i asked the endocrinologist who is a Professor that if I struggled to take T4 then would I not be able yo take NDT. His answer was that he knows nothing about NDT at all. He said he had a few patients try it but always came back to Combined T3/T4 etc. I did find that really odd. He said my long term opiate use was probably causing issues and for the last 3 days I have cut out my breakthrough painkillers and it's been hard . I asked my gp for help and he wasn't very helpful. I asked him if he would have me gastro resistant naproxen because I keep getting really bad bloating with a ring of pain around the top of my stomach and back but he would rather give me omeprazole which I really don't want yo take plus it doesn't help x
I try not to take the omeprazole and only take it when I have the bloating and only take it for a day or 2 when the ring of pain is bad. Do you treat low stomach acid with high stomach acid?
What do ppi do to vitamins?
Also I have not tried either dairy or gluten free as my diet is terrible. But I will definitely look into it as soon as I feel able thank you.
I was on all the vitamins i should be taking but because of my issues with swallowing and bloating I haven't taken them for months. I will have the blood test on Tuesday morning then start them again.
Hey, don't be so hard on yourself. I understand how difficult it is living with a host of symptoms day in day out and not getting any answers, it's very frustrating... But you will get there.
Just reading through the thread I noticed you had stomach acid issues. This can cause a load of problems in itself... I'd recommend researching Dr Berg's channel on YouTube for this, he has info that helped me a LOT in that respect.
Basically for me, the drs put me on omeprizole for some acid reflux issues, but it turned out I had low stomach acid so it doesn't actually solve the issue and also can cause downstream issues having even less acid. From the Dr Berg chan el I found using Apple cider vinegar after meals and particularly before bed helped me increase my stomach acid and it improved things massively (for me).
Just wanted to share that because I can vouch that it worked for me.
That's too many issues for me to untangle. A lot of them sound like endocrine issues, not just thyroid. Is it possible to find a new endocrinologist willing to look wt the broader picture not just your thyroid issues?
Thank you for replying I really appreciate it. I know I feel like that myself. I'm looking but it's hard and I fony want to waste £250 on half an hour if they can't help me x
I finally had a total hip replacement on November 13th, 2024. After that surgery for a couple of days, I was OK but then I started to feel really ill.
Have you had an iron panel done since your surgery? It would be worth doing.
Personally, almost every surgery I've had, apart from the very minor, has caused a big drop in my iron and ferritin, and it makes me feel terrible. It would be worth optimising your levels if it turns out they aren't optimal.
No i haven't but I'm having the tests I have replied to SlowDragon above on Tuesday. If I'm honest I am probably low as I don't really like meat and my diet is not great at all. I'm finding it hard to find an appetite and i don't like a lot of food. It's so so hard to get well which in turn gets me down as I really feel.like nobody can help me and I don't feel like I csn help myself much. Thank you do much for your advice, it's much appreciated x
debsmitch60 You actually have a confirmed diagnosis of adrenal insufficiency (believed caused by opiates). Others (including somebody who runs a pituitary group and really knows her stuff) gave you good advice about 3 years ago regarding this. From your old posts, I suspect that the endo that you had at the time was not very good at communicating information (anybody who talks about "passing" the SST is just sowing confusion IMHO). Whether because of that or not, I understand that you never got the hydrocortisone dosing/schedule to work for you and hence tapered off the hydrocortisone recently. Unfortunately, that may be the reason for much of what you are currently going through, including the pain that you have referred to and some of the other hormone levels being off.
I realise that this is a thyroid group and hence the focus of most people here will be on thyroid, but unless somebody has next to no thyroid hormones, the priority has to be to address the adrenal insufficiency before the thyroid. Untreated adrenal insufficiency is potentially fatal (the latest figures from the ESE show that for those who go into adrenal crisis there is a 5% mortality rate). To that end, I would suggest re-starting your hydrocortisone (I think you said you were on 10/5/5, so have the first 10mg 30-60 minutes before getting up, then 5mg at lunchtime, and the last 5mg about 6pm), find an endo who knows about tertiary adrenal insufficiency if your current one does not, and stabilise everything to have a fresh early morning cortisol blood test done (unless at Sheffield, in which case they might do saliva instead). Stabilising means, not changing thyroid meds until after cortisol test done, stopping biotin, stopping oral HRT and OCP for 6 weeks prior to the test, ideally stopping transdermal HRT for 6 weeks prior to the test (literature says it should be ok to continue it, but anecdotally some people find it makes a difference), stopping ashwagandha, and avoiding liquorice and grapefruit. On the day of the test, don't take anything with steroids prior to the test. If you are still taking opiates, you would have to check about those too. The early morning cortisol test will give an indication of your current state. It's possible that an endo might want to repeat your the SST yet again, but it probably wouldn't add anything. That you have previously had a CRH test suggests that the endo at the time probably did know what he/she was doing, but possibly wasn't very good at communicating results (e.g. "passing" the SST does not mean things are ok, "passing" it means you are unlikely to have primary adrenal insufficiency and that your adrenals hadn't atrophied, which is why they went on to do the CRH - to try to distinguish between secondary and tertiary adrenal insufficiency).
If we assume that you have tertiary adrenal insufficiency, once you are back on hydrocortisone and see the endo again, it is a case of finding the right dose and the right schedule. That is what the day curve is for that was recommended to you 3 years ago. Not all endo's arrange them unfortunately, but if you cannot get the endo to do it, it is possible to experiment with dosing and dose scheduling to find what works for you. It takes time though - it took me 5 months from diagnosis to stabilising and feeling near normal. Some people do it (much) quicker, some people take longer. If your DHEA-S level and sex hormone levels are off, those can be addressed by supplementing DHEA (again, as recommended 3 years ago), but this should only be done with levels being monitored as too high a level has its own risks. Some endo's recommend DHEA, some do not. Endo's that rule it out without a second thought are probably out of their depth.
Once the adrenal insufficiency is addressed, that's the time to sort out thyroid levels, as adrenal insufficiency and addressing adrenal insufficiency can alter thyroid levels slightly.
There are plenty of good sources of information/advice about adrenal insufficiency, in no particular order, the Pituitary Foundation, the ADSHG (membership fee though to access forums), and a good, active Facebook group facebook.com/groups/1759489...
Hello JumpJiving, yes from my taking cortisol saliva tests I managed to ask my endocrinologist at the time to help me. I had an atch blood test thst he said were fine but when I showed him my saliva tests I managed to convince him to do a CRH test that showed he said I had partial secondary adrenal insufficiency as the 3 in the middle were low. And yes he said it was from long term opiate use that I was never warned about. He also sent me to an endocrinologist in Birmingham that was into Dhea. When I got there I saw her underdog who was awful and said I probably didn't need to be on steroids. I said about to him that I had low dhea and had not just low libido but absolutely none which distresses me. He basically didn't care and said I could use dhea for 6 months on 25mg to 50mg but I had to buy it myself from the USAas he didn't prescribe it. He also said I could stop the hydrocortisone. He basically also made out that having no libido was fine and he just didn't care. I stopped the hydrocortisone dead when I got home as I didn't know you had to taper it down and it made me so ill. He rang me the following morning to ask how I was and told me to restart it but I didn't as I think I was giving up a bit. I couldn't get out of bed and felt like I was crashing. A couple days after that my gp rang and I was in bits ill and told him what happened. He convinced me to go back onto the hydrocortisone. I gradually felt a bit better but I have never felt really good so I tapered off it properly. I have paid to go to Newson Menopause clinic to help sort those hormones out which has taken a long time as I wasn't absorbing anything. Finially they found Sandrena estrogen gel thst was more concentrated and it has taken my dose of 4 sachets of 1mg. I am on a testogel sachet to last 6 days but everyday do to start another sachet straight away. I am on 2 x 100mg utrogestan nightly but have to use it vaginally as it knocks me out.
They said as Menopause symptoms cross over with thyroid symptoms and they got me to the level they thought was optimal and I was still symptomatic then they suggested it wasn't Menopause symptoms. Like still not having libido and weight gain and the rest.
Is the CRH test the same as a curve test?
My dhea and sex hormones are dropping again but I stopped all my dhea and vitamins a few months ago as I just couldn't swallow them due to bring so bloated and having a ring of pain around me, unnatural burping and feeling sick. I still carried on with my T3 and menopause hormones though. The other thing that is really stressing me out is the weight gain that is from nowhere, no difference in food or quantity as I don't normally have any appetite and have to force myself to eat.
I'm due to foung a Regenerus cortisol saliva test tomorrow with not taking Menopause hormones for over 24 hours. That's what I did last time but you are saying 6 weeks so shouldn't I do it?
When i did the cortisol saliva tests last time one lovely lady who i can't remind said it was one of the lowest tests apart from one other lady she had worked out in percentages. One question can i ask is what is the difference between secondary or tertiary insufficiency please? Thank you so much for all your information, it's really appreciated by me x
I am going to jump around a bit in answering bits that you mentioned, so forgive this being a bit disjointed.
As you discovered, never stop steroids (whether hydrocortisone or others) suddenly, other than those taken very short term. Doing so can result in potentially fatal adrenal crisis. Even without going into crisis, it can make you feel really rough.
By "fine", I assume your endo meant that your ACTH level was low (a high level would have suggested primary adrenal insufficiency aka Addison's).
With a low ACTH and an adequate cortisol response to the SST, that would suggest secondary or tertiary adrenal insufficiency.
Whilst I explicitly refer to tertiary (as that is what it is when the HPA axis is suppressed), many people including many endo's lump tertiary into the secondary grouping even though that is technically incorrect. My opinion is that this is yet another demonstration of how so many people just think about Addison's (primary adrenal insufficiency) and forget about other forms of adrenal insufficiency. When they really have to think about anything that isn't primary, they then just call it secondary, whether that is correct or not. TBH, a GP's training on adrenal insufficiency is very limited and many GPs will never knowingly see a case, so GPs have some excuse, but endo's should really know better and make the effort to get it right.
For the distinctions between primary, secondary and tertiary, see addisonsdisease.org.uk/what... . The summary is that secondary is a pituitary problem, tertiary is suppression of the HPA axis, normally by steroids, but can be opioids.
Adrenal insufficiency is reported in 9-29% of patients receiving long-term opioid therapy (ref. sciencedirect.com/science/a... ). With long-term use of potent steroids, doctors are supposed to warn patients and steroid cards should be provided. It rarely happens (I was given no warning at all). I don't know whether they are supposed to do the same for opioids, but even if they are I suspect it rarely happens. They might talk about risk of addiction, but probably not adrenal insufficiency.
Regarding DHEA, it is very unusual to actually get a prescription for it in the UK as the NHS gets charged a fortune for it, whereas patients can buy it themselves for a much more reasonable price.
DHEA is a precursor for other hormones, so the effects are far reaching. Unfortunately, in females there will be overlap with perimenopause/menopause symptoms, so it gets a bit more complicated. You might want to ask about how people address DHEA and (peri)menopause symptoms in the Facebook group that I linked to, as there will be people there who will have had to do the same. Note that as DHEA is a precursor to other hormones, the risk factors are similar to those for HRT. As a male, (based on tests over just the last year, so not definitive) when I take DHEA it appears to push my prolactin level up and my testosterone level down.
No, CRH is not the same as the Day Curve. CRH is used for distinguishing between secondary and tertiary adrenal insufficiency. The Day Curve is used to identify if dosage or scheduling of doses of glucocorticoids (hydrocortisone or equivalent) is correct. So CRH is diagnostic, the Day Curve is effectively management of treatment.
Regarding weight, a few things to mention. Generalisations coming up...
(1) This is me summarising stuff from Zoe: In males, fat typically builds up around the belly (visceral fat around the organs it the worst, health-wise). In females pre-menopause, fat typically goes on hips/thighs. During perimenopause, fat starts being deposited around the belly (as per males). This is an expected change. It's hidden, visceral fat around the organs that are the bits to be concerned about health-wise, rather than the more visible fats in the skin around the belly.
(2) When taking glucocorticoids (hydrocortisone etc) for adrenal insufficiency, too high a dose does result in weight gain. It's a delicate balancing act getting dosing/scheduling that makes people with adrenal insufficiency feel well without at various times of day having too much cortisol in the system. Key thing seems to be not taking the last dose after 6pm, unless absolutely required to get through the night (some people find they wake up low on cortisol at 3-4am if they don't take a late night dose). Unfortunately, a balancing act between possibly putting on weight vs not feeling well and potentially risking crisis (although those with tertiary adrenal insufficiency are thought to be at lower risk of crisis if they still have some residual cortisol production).
(3) I won't claim to be an expert, so this is just what I do. I have cut out (almost) all Ultra Processed Foods, been changing to a more Mediterranean diet, replaced snacks with seeds & nuts (I put together a little container of mixed seeds & nuts each morning), and when I really need chocolate to have two cubes of "artisan" dark chocolate (which is high in fibre and polyphenols) rather than an entire bar of the sort of chocolate available in UK shops (which has a horrific amount of sugar in it). I also only eat in a time-restricted window (10 hours is ideal, 12 is more practical). I currently only eat between 11am and 9pm when I am being good, otherwise 11am-11pm. Unfortunately, research suggests eating nothing after the evening meal is better, but I haven't got to that stage yet (although slowly moving that way), although thankfully being consistent is a good thing. The time-restricted eating window is preferable to the more commonly known 5/2 intermittent fasting.
Regarding cortisol blood tests - no oral HRT for 6 weeks beforehand, ideally no transdermal either (but there is disagreement about the need to stop transdermal - the literature says it is ok to keep taking transdermal, but anecdotally people report it making a big difference to their cortisol levels). I do not know whether the same applies for saliva-based testing. I would assume it does, but ask in that same Facebook group - people there will know. Obviously, as HRT can elevate serum cortisol levels, stopping for 6 weeks can make people feel ill, both because levels of oestrogens etc change and because cortisol levels drop.
Hello, sorry I am ill again and by that I mean worse than normal. I also have hypermobility ehlers danlos and didn't realise that can have an effect.I tried to do my cortisol saliva test this morning and couldn't manage as I had no saliva at all. Also because my glands are up I wonder if it's to do with that. I hsve had swollen glands that haven't gone down for 7 weeks now. I have no infection in my blood test and hhry have put me on the 2 week cancer pathway which is worrying. I think I will have to do a few days off my hrt as I can't afford for anything to drop.
I have tried fasting before but probably not for long enough. And I am so fussy plus I eat next to nothing I don't know if l could eat that diet atm. I used to have a normal appetite but now its terrible.
When I took the dhea it did nothing to my other hormones by bringing them up.
But as I said I have felt so ill that I stopped my vitamins and dhea. I then had my hrt hormones done and thry are dropping again.
So no if that's a curve test and different to the CRH test they havent done one.
I forgot to say my endo asked me to have a bloodtest 3 to 4 hours after taking my T3 and also did a cortisol blood test and that came back slightly higher than normal so now he thinks i don't need steroids. I just give up.
I was supposed to go for other blood tests that I put up for SlowDragon to see above tomorrow morning but I just feel rubbish so had to cancel. He said it needs doing at our local hospital as it needs to go to the lab straight away.
Thank you for taking the time to explain things and I hope you are doing well at least too x
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I feel like I'm loosing it! Thyroid?!
Why is my body reacting like this? Levo & NDT. Please help
Is this anybody else's life??
How ill did you feel before diagnosis? 
