I also found I am clear for adrenal antibodies 🎉 so I don’t have Addison’s.
In 2022 on 88 T4, 10 T3 without hydrocortisone my bloods were:
TSH: 1.2
FT4: 18.4 (12-22) 64%
FT3: 5.3 (3.1-6.8) 60%
I was highly symptomatic despite the relatively high levels of thyroid hormone. Vitamin levels were optimal, diet was cleaner than it is now. Bloods were drawn after 8 weeks on treatment.
Last week on 100 T4, 27.5 T3 with 25mg hydrocortisone my bloods are:
TSH: 0.28
FT4: 15.4 (12-22) 34%
FT3: 5 (3.1-6.8) 50%
I am still symptomatic, but I am registering waking temperature of 36.6 and chronic brain fog is clearing. I have warm feet for the first time in living memory. Vitamin levels are still optimal. Bloods were drawn after 8 weeks on treatment.
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Adding in adrenal support is clearly helping me to metabolise my thyroid hormones, it seems undeniable. I'm taking 12 T4 and 17.5 T3 more, yet bloods are significantly lower, BBT is finally rising. I don’t think the higher TSH is enough to explain this. It's also worth mentioning that the dose I am taking is quite a whopper, I'm really surprised that on such a high dose I am still not reaching the "ideal" place of 50% T4, 75% T3.
I know that "pooling" is a contentious topic in the thyroid world and seems to have little scientific backing, it refers to the phenomenon of FT3 being high in blood results in spite of persistent hypothyroid symptoms & signs and/or being on a relatively low dose of T3/T4/NDT. STTM argue that this issue of "pooling" can be overcome if we take cortisol (either in the form of pharmaceuticals such as hydrocortisone, or ACE, adrenal cortex extract) to enable thyroid hormone metabolism. For whatever it is worth I believe I was "pooling" in 2022.
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Hydrocortisone is obviously a serious medication and it has taken great consideration and research to understand how to carefully take it, I don't mean to imply it is some kind of magic bullet or to encourage anyone else to take it without due care.
However, if, like me you are someone who has trawled around thyroid forum after forum hopelessly looking for answers, have had no response to T4 mono, T3 mono, have added in T3 to no avail, have spent untold years fiddling with T4:T3 ratios, optimised vitamins, restricted your diet, trialled NDT, swallowed more supplements than seems physically possible, seem to get "optimal" blood results and still don't feel well I think it is well worth considering adrenals.
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By no means am I "well." My mood and energy have not improved enough, but my bloods and BBT are encouraging me more than anything previously ever has.
Unconditional love to all those affect by this hideous disease,
Great post, lots of food for thought there. I love your updates, so well considered and I learn so much from reading them so pleased to read that some of your measures are improving and you are actually managing to metabolise your dose now, that’s such a win! Great stuff 🤗🌱
Thank you Regen, I appreciate how kind and supportive you always are. I feel stupid that I trudged on for so many years ignoring the significance of adrenals, but must try not to lament the past too much. I am so grateful to be making progress at long last! 🙂
Hi Everywhere2. Initially I self-sourced it after I got private tests done. Then I sent the tests to my GP not expecting much, but they then sent those results to an NHS endo who has taken over the prescribing of it. I do still self-source because it is very dangerous to run out of steroids, but I get it on NHS prescription for now. I have a repeat synacthen on August 30th to see how my adrenals are doing.
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I’m really struggling to understand why in spite of these blood results you still don’t feel well. Is it time to reconsider the use of hydrocortisone? Are you focussing too much on blood results?
I would say that you need to increase Levo and decrease T3 - and don’t rely too much on anything said in STTM. They have some crazy ideas imho
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I think it's probably a combination of 3 things -
1. My T4 & T3 are still low in range, so I need to increase my medication some more
2. I've not been on the medication long enough
3. I've been quite profoundly hypothyroid for 19 years, so I think it will take me longer to recover than average.
I think that it's said you need to be on an optimal dose for around 6 months before you can feel fully well again. Of course everyone is different though. I am seeing certain gains that make me optimistic.
I appreciate what you say about STTM - I know they aren't popular around here and they can be dogmatic to the point that it is off-putting. However, in reality nothing they say about treatment and how to get better has been wrong for me so far. In fact, I wish very, very much that I had listened to their stance on adrenals much sooner, they have been bang on. People say they have crazy ideas but no one can ever actually say what those crazy ideas actually are...
I won't be reducing my T3 as it's only 50% in the range and I'd like to see how I feel at 75%. I don't have any signs of tissue overstimulation, but I will look out for them
Oh yes, I know it, but not really used it. I mostly take advice from here. I am having a conversation about cortisol tomorrow with a phone call from a gp. Hope I get somewhere.
Not really. A consultant carried out a test in 2019 and he said it was equivocal and repeated the test and it wasn't much higher, and I got no further tests! It was 288nmol and then 333nmol which some people think is ok but not according to NICE CKS topics.
For what it’s worth, I’ve been basing my regime on Dr Durrant-Peatfield’s YourThyroid which is clear about the need for adrenal support, ideally before tackling thyroid issue for reasons he goes into detail over. My condition has definitely improved. (I have PA too, so take daily B12. This in accordance with advice from consultant at Nuffield Iron Clinic.)
So your early morning Cortisol was within normal range but saliva test showed low cortisol? That suggests that your cortisol, instead of going down during the day, is increasing. Not a happy scenario. Doctors would suggest lifestyle changes. Some people use adaptogens.
Glad you’ve been tested though. I thought for a long time that I had high cortisol. When tested Iearned that it was very low and my symptoms were due to adrenaline at crazy levels.
Sarahpoppe232 what was your blood cortisol value? Similar to thyroid labs, you can be told you’re in range, but if it’s 9am and languishing at the bottom of the range then that’s low.
Saliva measures what is unbound and therefore available for us like seeing “Free T3.” Blood measures bound and therefore is more likened to “total T3.” I’ve seen it suggested that this can be related to transporter proteins being less available than they ought to be.
There is a condition called secondary adrenal insufficiency which is not quite as severe as Addisons and may not have all the clinical signs such as darkening of the skin, but still needs treatment with HC in many cases. The fault lies with the pituitary, not the adrenals.
Our guidelines do not allow identifying individual medical practitioners.
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Hidden are you able to tell me which bits of STTM you find dubious?
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Much of it is gleaned from the ‘hearsay’ of patient experience (anecdotal) and not based on any evidence based medical or scientific evidence.
It’s presented in a dogmatic and condescending way
The section on how to change between Levo/NDT/T3 is not helpful
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Yes, I also listened to hearsay… and it hasn’t served me well at all. It led to me ignoring their advice and wasting many years not addressing my adrenals.
In life I prefer to take people and things as I find them, not listen to Chinese whispers of others. I don’t know why I let that rule be broken for my thyroid.
I don’t find them condescending but I know what you mean about the dogmatic part.
I don’t find their presentation confusing, and I’ll forgive them the odd typo as they’ve given me the most hope and instruction I’ve ever had for my thyroid and adrenal health. I’d honestly be completely lost without them.
This is all very encouraging isn't it... it would seem that more could be making it to your cells which is showing in you finally feeling warm and the lower blood levels.... seems it's starting to reach places it hasn't previously been able to access 💃
That is a very pleasing temperature... let's hope it means you are nearing saturation and a sweet spot 🤗
I remember when I started on T3 my body just seemed to soak it up and then after 3 months on 25mcg T3 my cells seemed to be full and I cut back to a tick over level... for some of us there does seem to be a need to blast quite high levels to wake the system up... bit like hollering to wake a sleeping teenager 😆
I am picturing your newly awoken cells staggering around crashing into things all bleary eyed and wobbly
I think you are right that over time my dosage should drop - I think I’ve seen it said before that after a while people need to drop their dose.
I guess as everything gets up regulated by improved metabolism my body will hopefully use the medication better, I think I just need a massive, system wide software/hardware update!
god knows how my teenage cells are feeling… I’ve not felt my feet since I was 13… it’s all quite the shock. Being genuinely warm has been quite the novelty!
I’ve had cold feet most of the time all my life. When the temperature outside gets to at least 22 deg I wear flip flops. I yearn for autumn when I feel cosy and protected in socks and boots again. (This summer has required socks and trainers a lot more than last year and I prefer it 😎). My feet were warm ish today, but I’m looking forward to tucking them under a blanket whilst watching tv this evening 😂
When it gets past September I have to fill up the sink with warm water and dunk them in one after another to get them warm enough for bed 😭 try a warm basin of water while you watch TV for a treat 🙂 but watch out for the urge to pee…
I don’t need any reason to be tiddling any more times a day 🫣🤭
I also have some slipper boots that are warm and comfy.
When it’s warm at night (I don’t do well in the heat, can get migraines from that too), I have an ice block wrapped in a towel for my head and neck, a sheet over my body and a duvet over my legs and feet from the knees down. Before I added T3 to my T4 the duvet would have been up to my chest.
The things we go through to function. I still recon it’s because we are special 😇
A couple of years ago I started having cold feet in bed, even with an electric blanket. I put an electric heating pad (wrapped in a towel underneath the sheet) under my feet, which helped immensely. The heating pad automatically shuts off after half an hour, or maybe an hour, but by then the foot of the bed is warm enough that I am comfortable after that. If I get up to use the bathroom, I turn the heating pad back on when I return to bed.
I’m glad that you have a plan but it’s very ‘numbers based’ at the moment. You sound sensible enough not to be driven by blood results. Each to his/her own.
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Thanks Everywhere2 - Hopefully in 6 months time I'll have some symptom relief to report. As BBT is a very strong indicator of metabolism, I take this as a promising sign that improvements could be ahead 🤞
Basal body temperature, I take it when I wake up and at 3pm
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BBT never works for me as any sort of indicator. My temperature is always ‘normal’ even when I’m undermedicated.
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That's very odd, BBT is one of the greatest insights into metabolism. The only major issue with it is it's prone to other influences by other hormones like progesterone, aldosterone etc.
What is your "normal"?
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37.7
There are many people on this forum who find that BBT doesn’t work for them.
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37.7 is much too high, that's technically almost a fever!
If I were in your position I would definitely research what is going on to make my BBT so high. This is from a website I really like that could be useful:
Hypothyroid individuals typically have low body temperature reflecting their reduced metabolism. However, temperatures can be falsely elevated from several imbalances. This includes low iron, high progesterone, low aldosterone, low sodium and high cortisol. If infection is the cause of high temperatures, it will generally show up in a white blood count.
"There are many people on this forum who find that BBT doesn’t work for them."
It might be less that BBT doesn't work for them and more that people aren't sure how to interpret it/use it to understand themselves. It's an objective measurement, so it's more likely that the issue is with how we are using it to understand ourselves. It is a complicated metric to interpret as it can be influenced by many other factors but remains a very good insight into metabolism.
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In my case it’s a thermoregulation issue. I have autonomic neuropathy with anhydrosis. My body is not able to ‘sweat’ to reduce temperature. I have to take great care in hot weather /environments. Conversely, I switch between feeling hot and cold very quickly.
In my case, this is compounded by medication. See the list in this link.
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Hidden that sounds very difficult for you, I'm sorry you have that. Do you know why/how you developed that, do you have diabetes?
It's unlikely many other forum users have this specific condition so they should be able to use their BBT.
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I don’t have diabetes. Mine has been labelled as idiopathic but they continue to look for an autoimmune connection. It is very difficult. In hot weather I find it very difficult to cool down. When I do, I’m shivery and chill quite quickly.
You’re right in that most people can use their BBT as an indicator but several members here have claimed that this doesn’t work for them. There are medications which affect BBT.
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You’re right. It’s a good indicator of metabolic rate for most people - provided that use the correct type of thermometer in the correct way.
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Idiopathic is very frustrating! I'm sorry you are struggling with that. It's difficult because I see AN also impacts your blood pressure so you can't use many of the metabolic metrics like RHR, HRV, BP, BBT.
If it is autoimmune then it could be worth trying LDN.
Yes, I should have been more explicit - assuming members don't have a clear contraindication that makes their temperature unusable it is an important and very insightful metric.
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Yes. It affects so many things. BP, heart rate are especially difficult to manage. I don’t know what this is but my mum had similar symptoms and was diagnosed at my age (72) with late onset Lupus. Doctors say that sometimes the blood markers are late to the party.
You’ve asked me to comment but I don’t feel I have a lot to offer as haven’t medicated HC. However, I will say your resilience and enquiry are commendable, and often required for us to regain wellbeing.
You are now able to tolerate higher levels of meds 👍, and starting to feel the benefits so must be doing much right. My own cloudy thinking evaporated the day after I started T3 but it took another five years to regain good thermogenic control and feel warm feet and nose, so remain mindful that each has their own journey.
We have no way of knowing if your original dose was in fact your sweet spot but accompanying factors (insufficient cortisol) disallowed it from getting you well. I needed 20mcg T3 when first medicating for around two-three years and then started reducing slowly and today remain well on just 11.25mcg T3 daily in 1.25 grain NDT (and a bit of Levo).
Your present labs are reflecting how long it takes for ALL systems to ‘normalise’ and apart from remaining within range are almost meaningless at this stage. However, I would suggest you are watchful of HC and thyroid hormone levels as when/if they start to 'really work' you might have to reduce BOTH to find your sweet spot (eg don’t make the common assumption that you will have to keep increasing). Equally some cortisol might need to be replaced forever.
It's so great to read of your progress. Onwards and upwards dfc 😊
Thanks Radd, appreciate your support 🙏 I hope very much to keep making slow progress… you were around a lot when I first found I had primary AI, I like you to be kept abreast!
I am extremely keen on trying to get off the HC one day, reading all about light and the suprachiasmatic nuclei, leptin and receptor sensitivity… hoping that now I appear to finally be metabolizing thyroid hormone my adrenals may somewhat repair if I use circadian rhythms to my advantage - have you read much Jack Kruse?
As I said to Eeyore I am hoping that a system wide software/hardware update may do my HPA in particular some good enough to one day say goodbye to the HC. I forgot to mention in my post that I have been officially cleared of adrenal antibodies, so that is at least on my side 🙂
I wish it was as easy as taking HC, I struggled for years, my tsh was all over, but I was never diagnosed as it was subclinical and I just wasn't aware of what was wrong, when doctors said my tests were normal, I believed them. Then it all started going wrong around 2014, I lost a lot of weight (I already struggled maintaining and gaining weight, always had. Then withing 6 weeks I put on 2 stone. And felt really ill, this time, my tsh had shot up to 8, my FT4 was put of whack, my results were no longer 'normal'and I was diagnosed in 2016 as hypothyroid. I started T4, all seemed well... for a while. Suddenly it went downhill again. I lost 2 stone in less than 4 weeks, over the space of 6 months I went from a size 10 to a size 4, and at 5'7 I looked extremely ill. No one could figure out what was wrong, my eyesight was getting so blurry and double vision was really bad, falling asleep mid way through conversations and then just before I was due to get married in Sept 2017 I lost the sight in my left eye, ended up in hospital for a week, loads of blood tests and scans. Ended up having a lumbar puncture done to relieve high pressure in my brain, which they said was causing my double vision and sight loss, it eased, finally regaining most of it back 4 days before my wedding. I was discharged on the Tuesday, got married that Saturday, 10 days later my world collapsed. I went for an appointment with a pain specialist (I have spinal and pelvic issues) she wanted to do blood tests, I told her I'd had some done while in hospital just a couple of weeks before. She checked them, saw something she wasn't happy with. Asked of she could repeat a couple. I had a phone call that afternoon telling me that she was worried about my cortisol results, told me a specialist nurse was going to ting me to go for a specialised test, and to do it asap. I had that phone call 20 mins later, next morning I was having an ACTH test, still not really understanding what the hell was going on and what the urgency was. Afterwards I was told they didn't understand how I was still functioning, the cortisol test I'd had done while I was in hospital should've been red flagged and I shouldn't have been allowed to leave (it was 57nmol/L!) It was about the same when she retested it that day I saw her. With the short synacthen test it didn't even hit the minimum, it was 154nmol/L and they think the only reason it hit that high was because the day before I'd had an oestrogen injection (it messes with cortisol and ACTH)
I've been on HC since, they struggled for years to get my Addisons under control, it took me seeing Prof. John Wass to even get it on an even keel. He diagnosed me with Hashimotos after testing my antibodies.
He also put me on combined T4/T3 (apparently I don't convert well) DHEA, and advised me on the best vitamins to take including SI B12 as I have a B12 deficiency that isn't helped with just a normal supplement as mine is a functional deficiency. This he said also explains why I have a high tolerance to pain meds, need a higher dose of HC than what endos are normally happy to prescribe and don't do well on 'tablet form supplements' my body just doesn't absorb them through my gut, and what gets into my blood stream doesn't get absorbed into my cells.
Even on 5mg Pred and 5mg HC in the morning, my cortisol levels at 9am are only 462 nmol/L
And on 100mg T4 and 20mg T3 my TSH, T4 and T3 are....
TSH 0.01 mIU/L (0.27 -4.20) -6.6%
Free T4 (fT4) 9.7pmol/L (11.0 -25.0) -9.3%
Free T3 (fT3) 3.8pmol/L (3.1 - 6.8) 18.9%
T4:T3 Ratio 2.553
Folate - Serum 4.1 ug/L (≥ 3.0)
Vitamin B12 2000nmol/L (180 - 900) 252.8%
Ferritin 34 ug/L (15 - 300) 6.7%
Potassium 3.8 mmol/L (3.5 - 5.3) 16.7%
Sodium 141 mmol/L (133 - 146) 61.5%
I wish my HC did help my Thyroid in some way. As you can see it doesn't. My T4 and T3 have been falling since Feb (maybe before, but that's my earliest test this year) they don't know why. My T4 has been put back up to 125mg to see if that helps (he's not holding out much hope considering how badly I convert) I go back in 6 months to see whats next, but for me, the worst thing that happened to my Thyroid was my Addisons. Maybe my adrenals were already on the brink of giving up, but after I was diagnosed with hypothyroidism, and out on T4, it seemed to speed the decline of my adrenals up and it feels like I've just been windmilling ever since. I want to feel well again, I would love to go back to work. I'm 43 but feel older than my Nanna most days, in fact she's 84 and apart from a gammy knee, she's in better shape than I am!
Apologies, I have rambled and taken over your post. But.... I don't know, I just wish it was as simple as taking HC sometimes I guess..
- Firstly I’d say that if your pred & HC don’t feel high enough then you need to be on more. It’s less common to be mixing pred with HC, have you ever tried just sticking with HC? I have detailed a possible explanation below as to why your cortisol needs are unusually high.
- Secondly, your sodium and potassium look like you need to speak to your doctor about fludrocortisone for mineral replacement. If you are already on fludrocortisone then you need some medical grade extended release potassium because yours is too low. This can happen on mineralocorticoids.
- Thirdly, your bloods would suggest that you are very, very, very VERY under medicated on your thyroid meds… it is not that surprising you don’t feel well.
- Fourthly your ferritin is very poor. Do you supplement iron? Are you a veggie?
“I wish HC did help my thyroid in some way, as you can see it doesn’t”
This is not how it works. Your thyroid is never going to work for itself, whether you take HC or not. All HC will do is make you metabolise your thyroid medication better because thyroid hormone and cortisol are metabolic partners. Thyroid hormone being metabolised better by cortisol medication will not necessarily result in “better labs” it will more often result in “lower labs” which is your prompt to then increase your thyroid medication.
Your low labs suggest that the HC and pred is very much doing its job - you are clearly using lots of thyroid hormone because your labs are very low and you’re on a high-ish dose. You are taking the pred & HC, so that’s good, this means you have sufficient cortisol levels to metabolise the thyroid hormones that you're taking. But you are not taking enough thyroid hormone, evidenced by your labs. To have your FT4 below the end of the range is overt hypothyroidism - I would (and most others) would feel DREADFUL with these results.
“My T4 and T3 have been falling since Feb (maybe before, but that's my earliest test this year) they don't know why. My T4 has been put back up to 125mg to see if that helps (he's not holding out much hope considering how badly I convert)”
I don’t know why your doctor hasn’t realised this but it is extremely common for thyroid labs to fall on cortisol replacement - please read my post again, it’s the “pooling” phenomenon. Your labs are falling because the cortisol is helping you actually metabolise your hormone. An additional 25mcg T4 will help but if these were my labs I would increase T4 and T3.
“after I was diagnosed with hypothyroidism, and put on T4, it seemed to speed the decline of my adrenals up”
Thyroid hormone speeds up the clearance of cortisol, the T4 didn’t speed up your adrenals’ decline, it just helped to reveal their insufficiency. What little cortisol you were making was being cleared from your system even faster, making you feel even worse because you have both a thyroid and an adrenal deficiency.
Your thyroid labs are so low because you are not taking enough thyroid replacement, everyone would feel lousy with labs like those. I implore you to consider increasing your T4 and your T3 substantially.
I don’t know which doctor is letting you walk around with labs like this! And it really concerns me that your doctor has such a poor understanding of thyroid hormone-cortisol metabolism. He doesn’t seem to understand how any of this works! It’s very worrying.
You deserve to feel much better than you do and increasing your thyroid medication by a lot should help x
The doctor that did this was apparently the top in her field when I was rushed in with my BP soaring (again) my heart rate in triple figures even at rest and all the signs of a crisis imminent. The ED consultant got me on a HC drip straight away, started bringing my BP down slowly along with the other meds he was giving me. Then SHE waltzes in, declares the ED doc oesnt know anything, that my TSH is dangerously low (well yes my dear I have Hashimotos and I'm on T3, it is suppressed and kept like it for a reason!) Oh no that didn't go down well, she proceeded to lay into me telling me I was making myself ill, that I didn't have a clue the damage I was doing to my body. And when I told her that I did indeed know what I was doing as I'd been doing it for some time and under one of the best endocrinologist in the country, she told me Prof Wass must be a quack who knew less than I did! I was gobsmacked at what she was saying! But she reduced my levo from 125 to 100 and had me change my t3 to once a day. I asked the nurses to remove her from my room before I helped her on my way... she discharged me. The ED doc was disgusted and advised me to see my own wndo asap. That appointment was due in June, unfortunately I missed it due to ending up in hospital again, saw him finally last week. He was not happy when I told him why my meds were reduced and he was concerned that my levels had already started falling efore this and yet she hadn't taken any notice. He's put my T3 back to twice a day, increased my levo and I have to have bloods redone before I go back and see him in a few months. Hopefully my levels will be better then. My actual endo, not the idiot I saw in hospital, is actually pretty good. He doesn't just look at the numbers, he listens to how you feel and what you think too. He's said to me often, your body, your condition and your knowledge are far more superior than what I learnt in a classroom for an hour or two way back when. Whatever the issue, we discuss, research and learn together. Then we'll figure out how to make it better. The first time he said those words to me, when I moved here from another health authority almost 4 years ago, I cried. It was such a huge relief after having to fight my original endo. Aside from the Prof, he's the only one that has made any sort of effort or difference.
Also if your are Primary AI, I don't think there will or can be a day where you are HC free. Primary basically means your adrenals are knackered and no longer make cortisol. There is no reset button for that unfortunately. And once you've been on HC for some time it's unlikely your body will start to produce it once you stop taking it. That's my understanding anyway from the Prof.
I think as I don’t have addison’s I have more of a chance of getting off the HC. In the STTM forum I have spoken to many who’ve managed to wean after 2 years, but I will just focus on getting better first before I worry about that.
I don’t think it’s very helpful to scare someone on HC by saying they may not be able to come off. I know most people who have no choice but to finally take it have probably spent years to try and resolve the situation with any other means. It’s normally their only and last ditched attempt at recovery and they monitor the situation carefully.
I am sure that Hidden will be able to come off once their thyroid situation is improved as the post says, she doesn’t have andrenal antibodies. HC at physiological doses and for short term use is very safe if managed properly and is absolutely necessary to get the thyroid meds working.
The wonderful Dr P once explained to me, in layman’s terms, that when a long term thyroid problem persists and the medication is not helping (was on T4 mono 20 yrs getting worse and worse) that the adrenals kick in to try to compensate but if left inadequately treated, eventually the adrenals start to struggle too. He also said that unless the adrenals are up and working well enough you will never get the thyroid function working right. He talked about an enzyme, which I now think he meant the DIO2, which stops converting T4 to T3. He explained that when the adrenals are working better the enzyme might kick back in but thought with me, because I had struggled for 30+ years at that point, it may not. I started on adrenal supplements then (2010) and continue to take them. I tried several times over an 18 month period to reintroduce T4. When I stopped it many of the symptoms had lifted, within a few days. When I reintroduced it they all reappeared, again within a few days, CF, Fibro, Migraines, were noticeably on T4. With hindsight I recalled the migraines building slowly over a long time, starting with blind spots, then some time later zigzags, then the headaches started, this just became more frequent and sever over the time. Does anyone ever question the long term harm T4 mono might be doing to some?
A couple of years ago I had a host of tests under an endocrinologist, one that stood out to me, although it was considered ‘in range’ and ‘normal’, was the adrenaline reading. It came back as 20 in a 0-200 range. One thought a friend and I had was ‘how can you have a normal level of adrenaline as 0? I did wonder if that relatively low level might be a factor, those of us who have suffered or suffer with the ‘non existent’ adrenal fatigue, know, all too well, the effect it has and that it exists. Maybe if our adrenaline is in the lower end of normal, when we need it to rise it is unable to rise enough to cope, maybe when it then drops it drops below the ‘normal’ 0 and hence takes us so much longer to recover than the person with a higher level of adrenaline as a norm.
It seems such a closed thinking to think that adrenal fatigue, cannot exist because when we are faced with a crisis our adrenaline rises to cope. Is there never a consideration for ‘what if it doesn't'??? Do they check out adrenaline levels? That was the first time anyone checked mine.
Aren’t they suppose to check our cortisol levels prior to issue of T4, I don’t recall mine being checked at that time. It was checked, perhaps as a tick box, prior to being sent to an endo in 2007, after 20 yrs on T4 mono.
It seems madness to me, for the Drs to acknowledge that thyroid disease can be so complicated, yet to dogmatically Dr us by TSH and T4 only.
I’ve been on 60mcg T3 mono since 2010. I have never had palpitations or other adverse side effects. It gave me a life back. Can this be placebo as some would have us believe?
Maybe all those with hypothyroidism do not need T3, but surely it would only be harmful to those who do NOT need it? Likewise, are not the expected adverse effects of T4 the same? I am sure I read that on the BTA or BTF site some years ago, seemingly removed since. So too much T4, especially when it is not beneficial is likely causing harm? Surely the studies should now focus on causes and why some DO need T3 and others need more, or mono when some get benefit and well on T4? linda96
I recently posted that I was unlucky enough to get hit with a dose of Pericarditis, inflammation of the fluid around the heart. Due to allergies I cant take Ibuprofen or NSAIDS, the usual treatment. I was on Prednisolone 30mg for 3 weeks.
Coming off was rough at there was no taper given. I spoke to a GP who gave me more Pred and I've been tapering off slowly. On about 1.25mg now. I've felt pretty good whilst on the steriods, more energy, except they caused insomnia, which is weird as I've had 5 day courses of Prednisolone before for acute asthma but not for several years and not since being Hypo and on Levo. Never had sleep issues before on them.
I've often wondered if I have an adrenal issue as my Hypo isnt autoimmune as far as antibodies show. Not sure what's the best way to test though.
For testing I have it all listed in my bio I'll copy and paste here -
Adrenal testing: 4 point saliva test from Regenerus Labs is good if you suspect moderately low cortisol.
If you think you have a more profound cortisol issue then you need to ask your GP for -
SYNACTHEN
ALDOSTERONE
RENIN
ELECTROLYES
ADRENAL ANTIBODIES
Blood tests are inferior to saliva tests because bloods show what is total, saliva shows free and therefore available. But bloods are still valuable and a very important step in ruling out anything more serious than adrenal fatigue.
This might be slightly off topic, but I ran across a you tube posting by a Dr. Eric Berg, D,C, How to fix the Adrenal Body Type. Very informative and I found helpful considering my experiences since 2013! Hope you all find this helpful
Thank you for sharing I used to low Eric Berg, but the ketogenic diet actually caused my adrenal insufficiency, so I don’t like to take much/any of his advice anymore 🙏
What I liked about this particular post was how to evaluate the function of your adrenals. I have found doctors don't seem real up on them and jump right to something they can write a script. It would have been helpful information for me to have had . I kinda avoid extreme diets myself. I rather like the Diet for Life as laid out in the Ty Bollinger book "The Truth About Cancer" . I don't have cancer, but would like to avoid it if I can . It seems to have ravaged our society like many diseases linked to immune system failures linked to a multitude of toxins. Thank for the response!
I have primary AI which is Addisons, if you don't have Addisons then it isn't primary, it is secondary and more likely to be an issue with your pituitary than your adrenals themselves. It's also not strictly true that with primary AI you have to have antibodies, I dont- or not enough to qualify as having them as they came back within 'normal levels' Also UrsaP if you have AI it's not adrenalin that's the issue, it's cortisol, adrenalin is something else entirely, Adrenal Insufficiency is due to the lack of cortisol in your body, not adrenalin or epinephrine, these are made in the medulla (the inner part of your adrenal glands while cortisol is made in the outer part- the cortex.)
Many doctors don't believe in the term adrenal insufficiency, a lot call it tertiary AI, because its usually caused by taking high disease steroids and can be reversed by tapering those steroids over weeks or months.
I do believe that if you have a true AI especially primary, then being told, believing or even trying to wean off steroids is highly dangerous. At the beginning of my diagnosis when they did a follow up ACTH test, I wasn't told that it was essential to keep taking my steroids, so as with my thyroid meds/ testing protocols, I missed the morning dose before my test, the test was done at 8.30am, and 9am. By the night time I was in intensive care, I was too ill to take my meds when I got home, I just fell asleep not realising I was going into crisis. The hospital was ringing my phone from the early afternoon, I didn't answer because I was out cold, barely conscious, my husband eventually answered it, getting concerned it was one of my adult children ringing as it was ringing constantly. He got the shock of his life when it was the hospital demanding I be taken to ICU after being given a rescue injection, not waiting for an ambulance as they were worried I wouldn't make it if we did. Just missing that one dose meant my cortisol had dropped to <27nmol/L barely detectable, cortisol is ESSENTIAL to life, as AI patients we are given only what we need as a replacement dose, and no matter how much I detest the weight I've put on since starting the steroids, how much I may moan about the extra weight, it will never outweigh the alternative- not being alive to see my children grow up!
I have primary AI which is Addisons, if you don't have Addisons then it isn't primary
This is not entirely true, you need adrenal antibodies to have Addison’s but you can have PAI without antibodies, like me. You might not have them because your adrenal function was so poor by the time they discovered your AI there was not tissue left to attack. Additionally, I failed my synacthen test by 6 points but I did make double my baseline which means I half failed and half passed. I have been diagnosed with “very mild adrenal insufficiency” and I only just make the cut off for it. I believe I have adrenal fatigue - but I don’t have the energy to argue the toss on whether that’s a real thing! My bloods are inconsistent with PAI, I don’t fit any conventional medicine AI boxes, I do fit with adrenal fatigue.
I do believe that if you have a true AI especially primary, then being told, believing or even trying to wean off steroids is highly dangerous.
If you are saying this generally, then I agree. If you are speaking about me then I can tell you I don’t have any plans to wean off steroids unless I am well and no longer need them.
Horsecrazylady79 I have written a very extensive response to you above about your thyroid panel, I hope you have time to read it and you find it helpful 🙂
I didn't see it until after I wrote that response, for some reason it didn't come up, I apologise for that. And yes it is entirely possible to have Addisons without antibodies, I am an example of that. Prof John Wass is one of the leading experts in the UK on Adrenal Insufficiency, Addisons and pituitary issues. He's the clinical lead for the Addisons Disease Self Help Group and was my consultant at the beginning of my journey when I was getting nowhere with NHS consultants and struggling to get my Addisons under control. I was on HC only at the beginning, but even with really high replacement doses, they couldnt get it roght. So i was put on Pred with a small HC dose first thing as a kick start, as I still struggled first thing. HC only has a short half life of 4-6 hours, while pred is slow release, the HC gives me enough cortisol to get me functioning until the pred kicks in. I'm a lot more stable now, and no longer falling asleep by 3pm, if I do then I know I'm coming down with something.
I'm only as well as I am thanks in large to him.
I was on fludricortisone but due to something going wrong with a procedure on my spine, my blood pressure shot through the roof and went from 90/60 (even on fludro) to over 250/180 they struggled to get it down and kept me in while trying, as you may know fludro is used in Addisons patients to keep your BP UP, mine needed to come down. My BP has been out of whack since. They won't do anything about those levels because they're 'within range' believe me I've tried! It's frustrating!
Beau55 I'm not trying to scare anyone, I am honestly just stating a fact, if you are taking HC to replace cortisol because your body doesn't produce it because it cant, then to stop taking that medication is dangerous. I don't believe in scaremongering or being a keyboard warrior or anything else of that ilk. I do however believe in free choice and informed choices. Cortisol is essential to life, it is responsible for hundreds of processes in your body, and essential to hundreds of others. My apologies if you think I'm trying to scare people off, that's not my intention.
As many of us are aware with the conditions we have we have to be pur own advocates and we have to become the patient expert in order to do so. My knowledge isn't as a medical professional, but comes from hard earned lessons, many hours of research, experience and talking to those with more experience than I have. If you've not already visited it, this is a good website that has sound clinical knowledge and forums... it also has some of the best and foremost experts in their field on the advisory panel.
I know of Dr Wass, a friend of mine has had terrible dealings with him. It worries me he is such a significant figure in the addison’s world because your thyroid panel suggests he doesn’t have sound grasp of the thyroid-adrenal relationship.
Please do read over the possible thyroid / cortisol metabolism explanation I have written out, I think it could help you a great deal. You are woefully hypothyroid/under medicated. I don’t think Dr Wass is treating your thyroid correctly.
He has nothing to do with my current issues or levels. I haven't seen the Prof in over 4 years, I haven't needed to. My current endo has been great, these levels are due to one idiotic endo I had the displeasure of dealing with when admitted as an emergency in February.
Apologies if you have taken my responses as disparaging in anyway. Wasn't my intention, only to say that I wish my journey was helped in the way yours has been by the addition of HC. I've been deemed a medical mystery on more than one occasion by more than one specialist. I wish you well on your journey DFC
Don’t worry 🙂 I understand. You are very under medicated and you will probably appareciate the benefit of the HC/pred if you take enough thyroid hormone.
Glad you are feeling better DFC. Adrenals are hugely important in well being and I appreciate you addressing this. Don't forget the other adrenal hormones; perhaps adding in a bit of pregnenolone and DHEA will further help your hypoadenalsim. Your own production of these other hormones (along with cortisol) will be mostly shut down because of the exogenous hydrocortisone.
That's interesting, but a good sign I think that you have some solid adrenal function left (even though it's not enough cortisol). Thanks for posting about your cortisol/thyroid journey!
I'm glad you're feeling better. Apologies if this comment is covering ground you've already mentioned in other updates - which I haven't seen. One thing to think about is that on 100 T4 and 27.5 T3, you are getting around 60.5mcg T3 - providing your body can convert T4 to T3 well. ((100÷3)+27.5).
If your adrenals are having a problem, in my view it is likely you are not a good converter of T4 to T3 and you might well do better on mostly T3 (all T3?) thyroid meds.
In my experience, most people, including me need 60-80mcg T3 if they don't have a functioning thyroid. I need around 60-65mcg T3 in summer and 65-70mcg in winter.
By the way, for the people who don't know (and I had to think):
BBT = Basal Body Temperature.
T3 thyroid medication = liothyronine, which is colloquially referred to as T3. Just to confuse things, T3 is also the hormone in our bodies that liothyronine meds are trying to increase. Free T3, or fT3, is what the blood tests measure to try and establish how much T3 is in your body.
thank you for your comment yes - I would definitely be willing to do T3 only if combo doesn’t work out for me. I’m wary of rt3 as I believe I have high systemic inflammation. Let’s see how things progress.
’ve been seeing a kinesiologist who has been guiding me on my supplements and medications (she isn’t meant to do the medications but she does it anyway).
She thinks my dose at the moment should be 150 T4 and 40 T3, which looking at my bloods on 100 T4 and 27.5 T3 above seems to make a lot of sense. I am raising by 2.5mcg T3 every 10 days or so, but if I go too fast I really feel it so I’m trying to be patient 😮💨
I think overtime I’ll be on a lower dose but I am really hypothyroid at the moment and have been for two decades. Even on those thyroid levels above my prolactin is 886 (102-496) so I’m still very hypothyroid on a cellular level, I think.
My creatinine level seems to be a good way of telling if I'm at the right T3 level. If creatinine is below range, I'm on too much T3. If creatinine is above range, I'm on too little T3. Maybe this is another measure you could use to check your thyroid levels.
You can measure GFR too, and liver enzymes. Kidney & liver function slow in hypo whilst protein and enzyme markers elevate due to impaired clearance.
Interestingly hyperthyroidism (or elevated T3) obviously creates the opposite effect, except creatinines loss is even greater due to the reduction in muscle mass caused by elevated T3.
Creatinine is a byproduct of the breakdown of creatine which is used for muscle contraction. Raising creatine will raise creatinine but when we refer to hypo and raised creatinine it is more likely related to an impaired kidney functions inability to process it rather than raised creatine levels seen in over-exercise or when supplemented by athletes, as hypo leaves us unable to exercise properly.
Another negative is we also need creatine for good glucose metabolism and a lack risks insulin resistance that is also common in hypo. The dots are joining.
Because liver function also slows in hypo, liver enzymes commonly raise. Labs usually normalise for everything when adequate thyroid hormone is taken although I guess is dependant upon the amount of time one is left hypo and the extent of the damage .
Hi, I've always had low cortisol but it is now much better and I feel much better since I split my levo and T3 doses and I take about half my levo+ a little T3 around midnight. I think this helps the adrenals work well: they are most active at 4-8 a.m. and they need levo and T3 in order to function. I now have decent cortisol levels, and after the raise in cortisol had to increse my total daily levo and T3 and I feel much better than I used to.
The only thing is it has taken me a while to figure out how much T3 I need at night, beacause if it's too much that keeps me awake.
I think it’s lacking research regards the adrenals and the connections with autoimmune conditions. I’m uat as was my sis and mam. My son was being treated as a young teenager for uat before getting a dx of Addison’s. My Grandad also had pernicious anaemia. Both my son and I are on B12 injections. I was dx with ME & fibromyalgia prior to B12 injections.
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