Update #5: Back to front : Hi all, Continuing... - Thyroid UK

Thyroid UK

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Update #5: Back to front

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Hi all,

Continuing on from my adrenals results… healthunlocked.com/thyroidu... I have spent some time researching and experimenting with adrenal support.

This is what I understand. If I am off about any of this please do feel free to correct or challenge 🙂

The adrenals are split into 2 major chunks; the medulla which secretes adrenaline and the cortex. The cortex is made up by 3 zones that combined secrete cortisol (corticosteroids), aldosterone (mineralocorticoids), and androgens (male sex hormones).

Cortisol in particular is highly relevant for thyroid hormone metabolism. Together cortisol & thyroid hormone have a powerful partnership that contributes towards metabolism, and metabolism (making energy & using that energy well) is the golden ticket to vitality💫

When things go wrong - In the face of failing thyroid hormone (hashimoto’s, central hypo etc.), cortisol levels may rise to try and battle on alone. Because the state of thyroid diagnosis & treatment is so heartbreakingly abysmal, adrenals are often heavily over-recruited to help this now very one-sided partnership.

Over time we may then see the adrenals begin to flag. This is twofold (I think) -

1. The adrenals are “fatigued” from overproducing cortisol to compensate metabolism without enough of its partner thyroid hormone to help. (This is defined as a primary adrenal problem, ie. The problem is with the adrenals themselves).

2. The pituitary (that sends the ACTH signal down to the adrenals to wake them up) is a very T3-dependant gland, so this can become low and the signalling can drop so adrenals are not stimulated enough. (This is defined as a secondary adrenal problem, ie. The problem is with the brain that has a consequential impact on the adrenals)

For me, my results demonstrate a poor (but not dreadful) response to ACTH indicating I have a primary adrenal issue, ie. The adrenals themselves are overworked. I hypothesise that there are 3 reasons why I personally have poor adrenal output -

1. I developed hashimoto’s at 13, but was not diagnosed until 21. At that stage I was under treated on T4 only and remained symptomatic - prolonged hypothyroidism.

2. I engaged in a highly restrictive form of ketosis/carnivore diet without realising that I actually just needed T3 in my treatment. (At that time I didn’t even know my health problems were because of my thyroid, I was told my labs were normal…🫠 but closer inspection shows rock bottom T3 and high T4 on levo). One of the major roles of cortisol is breaking down fats & proteins into sugar (gluconeogenesis), so the demand on adrenals was made greater still by ketosis because when we run on fat for fuel our body must find a way to make sugar for us as there are some cells that simply cannot run on fat/protein.

3. I personally have a genetic need for vitamin C - adrenals are the most vitamin C-dense organs of the body, so I would have likely always had a weakness in adrenals.

So, I have begun trying hydrocortisone (HC). In preparation, I dropped my NDT by 0.5 grains to avoid speeding my metabolism up too much with the long-awaited arrival of cortisol.

Initially I tried 10mg as one dose in the morning, but my midday I was in a crying heap with blood sugar issues. So I switched to the STTM approach (Do Not Come For Me!🙈) which is 10mg waking, 7.5mg noon, 5mg PM, 2.5mg before bed. However, after reading around I began to feel nervous about taking steroids after 1pm as this may impact my adrenals’ capacity to reawaken once I try to wean off them. (Adrenals apparently do not tend to wake back up once they have been overreplaced for a sustained time. Someone told me that something in the region of 40mg HC for 3+ Weeks would likely shut adrenals down completely) So I have had to think hard about how I approach this adrenal situation. Additionally, my response to the steroids has been very mixed - I have had very high anxiety, a flushed face, thundering heart, blood sugar issues, intense tearfulness, headaches and head pressure, light sensitivity, dissociation, fatigue, high tinnitus with random bouts of joy, energy, no tinnitus and very warm feet. My BBT has swung from 35.6 to 36.8 within hours of taking the steroids - which is all to be expected when pouring lighter fluid on my weak metabolism that’s been wonky for 17+ years.

After much consideration, I have decided I want to strip it all back and begin again. It is advised by STTM & Peatfield that beginning thyroid hormone after adrenal support is preferable. The chaotic mental state I find myself in (is it the steroids? Is it increased uptake? Is it the dropping of NDT? Should I drop my NDT more? Should I add some T3? Should I decrease the steroids? Will I get stuck on steroids now forever? Should I follow STTM? Should I stop steroids before 1pm?) is driving my anxiety through the roof. I can’t think of anything else. I have, ofc, considered introducing steroids slowly and titrating them up but I have also read that this can cause worsening of symptoms as under-replacing steroids can exacerbate the situation instead of improving it… I cannot risk this.

So, considering all of the above I have decided to begin again and take the approach of the triangle. This will include coming off the 1.5 grains of NDT I am already on - HEAR ME OUT - I am gaining no benefit from this 1.5 NDT. I had some initial improved response, but I have lost my period again (I tried increasing my dose, it just gave me chest pains and more fluid retention - I think because my adrenals couldn’t keep up?) and all other hypo metrics are no good. So the next month I will be slowly weaning myself off my 1.5 NDT to start from scratch.

I should also add that I have been ill for many decades now, I have trialled many medications and thyroid hormone formulations. My situation is specific to me, and I do not recommend in any way that others copy what I am choosing to do.

Stripping back means I will be able to add things in in the correct order - something I have never known I should do, in spite of the Tens of thousands I have spent on the best doctors Google can find. It also removes this chaotic uncertainty about what is creating which reaction.

I will begin by tackling insulin sensitivity and then work my way up the pyramid.

If anyone has any recommendations for insulin sensitivity supplements or ideas please do suggest them 💡

My insulin sensitivity regime will be as follows -

👉🏻Ovasitol

👉🏻Cinnamon

👉🏻Berberine

👉🏻Chromium Piccolinate

🥗Mediterranean style diet

🥾Walking & light weight training

☀️Circadian Rhythm - blue blockers after sunset, watching sunrise (🙈maybe a few days a week at first) and avoiding artificial lights

📲CGM to track glucose response to foods

💊 I am considering Metformin (it has been offered to me before for PCOS but I turned it down) so I would welcome any feedback on that. I am aware it depletes specific nutrients.

——————————————————

I just want to add, I sincerely hope I do not come across as a know-it-all-know-nothing. My aim is simply to use the forum to keep myself accountable for my decisions, leave a trail for a future “me” who is totally lost and gain the invaluable feedback from others in this forum. I don’t claim to know everything, and in reality ofc I know very little but I am doing my best.

Unconditional love to those blighted by this terrible disease,

Relentless xx

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45 Replies

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HopefulMe232 years ago

I just wanted to say I am very grateful to you for sharing your experience and plans in the forum, I will be really interested to hear how you are getting on with your plan and wishing you the best outcome.

• in reply toHopefulMe232 years ago

Thank you Hopeful 💙 I appreciate that very much. It can be very lonely, the forum is a great comfort x

HopefulMe23• in reply to2 years ago

It is so lonely, I am suffering dreadfully with anxiety/ocd as my main symptom so I wanted to reach out and say I am grateful for your posts as they have helped me to feel less alone and also you seem to understand the science behind it all really well, which is a big challenge for me. I so hope this next step works for you and it is great that you will keep the forum updated because that gives others hope too. I have got my regenerus adrenal test coming soon so I am hoping I might also have some work I can do on adrenals and that might help me. Either way I will follow your journey and wish you better at every step.

• in reply toHopefulMe232 years ago

I’ve been there, I completely understand and you are not alone at all 💙 The mental stuff, for me, is the hardest. I would take the fatigue, weight, infertility, PCOS, cold, dry skin etc. if I could just feel happy and calm in my mind.

I appreciate you saying I seem to get the science but there is still so much I just don’t know, and it’s not right that I should have to grapple with this science. I did a philosophy degree, and foundation level GCSE science that I nearly failed! I am a humanities person through and through, not naturally sciency at all, but I see no other option than to try and work it out myself. With the help of this forum we will work it out faster x

HopefulMe23• in reply to2 years ago

Hi DFC, I just got my cortisol test results back and it made me think of you, so I wanted to check in and see how you are getting on with this latest update? I hope it is going well.

TiggerMeAmbassador• in reply toHopefulMe232 years ago

I was thinking the same! Bet she's out gambolling around with puppies 🐶

TiggerMeAmbassador2 years ago

I see you as the intrepid explorer looking to find a lost trail which many have heard about but few have dared change course to discover 🕵️‍♀️

• in reply toTiggerMe2 years ago

😂 I would be honoured if you’d be my mule ? 🏇

TiggerMeAmbassador• in reply to2 years ago

🤣🤣Hell yes! Lead on

radd• in reply toTiggerMe2 years ago

Hidden

Oh dear god! 🤣

Is this a mule by any chance with a donkey face?

• in reply toradd2 years ago

that’s correct! 😂 Me and TiggerMe waddling off into the great HPA axis unknown 🌵

TiggerMeAmbassador• in reply toradd2 years ago

Come on Radd.... you can wear your kinky boots 😁

Imaaan2 years ago

Hi hun,

I know you're suffering and I pray what I say next doesn't ruffle your feathers . I dont think its wise in any shape or form to wean off your thyroid meds completely. You'll just place the stress back on your overall stressed adrenals. You might feel as though the amount you're currently taking isnt doing much but I cant imagine that your hypo body hasnt benefitted at All since it's been deprived all those yrs.

Im assuming you're on porcine ndt so would you consider bovine thyroid glandular since they have have a lower amount of t3 in them??? I feel like it would possibly be more gentler. Another option is to briefly go back to t4 meds whilst working on the adrenals. At least that way , you haven't totally deprived your body of thyroid hormones.

Another thing I thought about is, if its possible to take adrenal glandulars along with your HC ??? Maybe reduce the amount of HC and then take glandular passed 1pm to support your system.

Metformin scares me and I hope you can benefit from inositol and berberine instead

I'm hoping all the best for you babygurl.

• in reply toImaaan2 years ago

No feathers ruffled 🦚 thank you for your thoughtful reply 🤗 I appreciate it 💙

I spent 6 months last year off all thyroid medications following horrific advice gone very wrong from Paul Robinson, and I actually felt OK. It wasn’t an ideal scenario - I had weight on, my period was gone, I was fatigued etc. but at present I do feel worse for being on NDT/T3/T4 (they all produce the same outcome more or less for me) and I have additional symptoms being on thyroid medication that doesn’t work properly - like palpitations, high anxiety, fluid retention, constipation - weirdly my bowels worked better in the 6 months off than on the meds (?) I feel like it should be OK because I am not removing medication I have been on for years and years, and the dose of 1.5 NDT still leaves me really under replaced, eg. my TSH is still 10 on 1.5, so I don’t know how much different being on nothing would be. I wouldn’t plan to be off thyroid meds for longer than about 2 months. And I do think it’ll be worth it to be able to systematically add in one ingredient at a time with a clear bird’s eye view strategy.

I did try adrenal glandular, but sadly it gave me the same problems - I think I cannot get away with doing it back to front, altho I know many can.

Berberine in the past has given me dodgy bowels, but metformin is a real nutrient thief which is not ideal… I think I am leaning towards Berberine only.

also yes! That is my plan when I reach phase adrenal of the plan - HC before 1pm, ACE after. Great behinds think alike 💙

Xxx

greygoose2 years ago

Have you considered that maybe NDT just isn't for you? It doesn't suit everybody. I didn't suit me - even after sorting out my adrenals - and I'm better on synthetic T3 mono-therapy. If you want to know my journey, have a look on my profile.

• in reply togreygoose2 years ago

sadly I have done T3 only, T4, T3 with T4 in various different ratios 😕 I have read your journey in your bio GG, it was very informative and gave me a good laugh x

Beau552 years ago

Forever in awe at your ability to write so concisely. The start of the adrenal voyage and the start of a new chapter 🙌

• in reply toBeau552 years ago

Thank you Beau 🤗maybe it’s a touch self indulgent? I hope not. I hope in a few years this may help someone else who is hopeless and confused… 🫠 xx

arTistapple• in reply to2 years ago

Not self indulgent. Brave.

radd2 years ago

dfc

Really thorough and interesting review 👍 (thank you for sharing 😊). Points I consider are:

I thought you had stopped the HC after initially starting it as got an endo appointment where investigations were going to be undertaken. You’ve also gone from 10mg to 25mg which is over double!

There is research saying you can gain same benefits from berberine (that does lots of other good things) as you can from metformin (that brings unwanted horrid side effects).

Also, I get where you are coming from and wanting to start afresh, etc but I would NOT stop thyroid meds completely. There is no saying they will work better if you stop and reintroduce them, and risk things actually worsening on multiple layers because inadequate thyroid hormones (particularly T3) can cause hyper/hypoglycemia by : slowing the uptake of glucose by the cells , decreasing glucose absorbtion in the gut, impairing insulin response to elevated blood sugar, diminishing insulin clearance from the blood.

And when glucose isn't freely available (energy), your adrenals will try releasing further cortisol in an effort to increase the glucose amount available (for energy), so stressing adrenals further.

Presume you know you can direct good insulin sensitivity with diet and food timings. I reversed a pre-diabetic status but my protocol did include T3 😬. I would also include a mitochondrial support.

Imaaan• in reply toradd2 years ago

Can you suggest a mitochondrial support supplement?

• in reply toradd2 years ago

Hi radd thanks for your considerations, I really appreciate it.

I have really been back and forth in my mind about this “clearing of the decks” approach, and as you and Imaaan say, it is definitely a risky strategy to reduce my thyroid medication down.

The main reasonings I am using are -

In the 6 month thyroid hormone hiatus I had I actually felt better in many ways - Just as a small example, on thyroid hormone I always wake up an hour after falling asleep with a racing heart and panic, I also reduce my tinnitus significantly when off thyroid hormones.

My current TSH is 10, so I’m pretty hypo anyway - it’s not as if my system is currently sitting pretty (when I raise thyroid meds I get chest pain and fluid retention etc.) For some reason this makes me think reducing my NDT would be less damaging than if I were “optimally” treated even if just on paper.

I have only been on NDT for about 6 months, and before that I’d had a 6 month break from any thyroid medications so I’d hoped that this may mean my system won’t be too shocked by a reduction.

However, I do not want to risk further upsetting my adrenals & glucose metabolism. Perhaps I shall simply wean to half a grain or something very mild.

Re. 10mg to 25, yes! I did 5 days of 10 only and the hypoglycaemia I was getting was savage, I was crying in pieces on the floor. I asked in AI forums & STTM and all said I was likely feeling dreadful on such low replacement, “low BG is a sign of needing the next steroid dose” I have been told, so I upped it. Then panicked about upping it. Then reduced it. And now I’m wanting to bin it all and start again 🙃

I think as both you and Imaaan have said the Metformin is nasty stuff, I’ll just stick to the Berberine - thank you for sharing that.

I have a very careful diet. As I try hard to avoid ketosis in any form (IF too) but also don’t want to spike BG I have a Mediterranean template diet. And yes I’d bloody love to be able to use T3 if only it would love me back! 😂

Imaaan• in reply to2 years ago

I'm really pleased you're reconsidering the thyroid meds. I was absolutely sick with a TSH of 11 a few yrs ago. Youre in a tough predicament and trying sooo hard and my heart goes out to you. Keep hope alive babygurl

• in reply toImaaan2 years ago

thank you my friend xx

• in reply toradd2 years ago

radd I’ve just woken up and suddenly thought doesn’t T3 increase blood glucose?

radd• in reply to2 years ago

dfc,

Yes, and exactly why you need your thyroid hormone meds!

You talk about reestablishing healthy insulin sensitivity, and thyroid hormones exert both insulin agonistic and antagonistic actions in different organs (particularly the liver) for normal glucose/carb metabolism.

For instance with excess T3 levels gluconeogenesis becomes elevated leading to increased liver glucose output and higher & higher blood sugar levels.

Inadequate T3 amounts reduces gluconeogenesis decreasing liver glucose and as already explained above will also slow glucose uptake, decrease glucose absorption in the gut, diminish insulin clearance and so do the the opposite of what you are hoping to achieve by impairing a good insulin response.

You need the right amount of T3 to accomplish healthy insulin sensitivity.

• in reply toradd2 years ago

but radd I don’t think I am metabolising my thyroid hormones so does it make a difference? 🫠 I feel deathly on them. I bought a dexacom last night so I will see when I raise my NDT if it helps my BG reduce. But I am taking on board all feedback and think I’ll reduce down to 0.5 grains, instead of just nothing. 🙏🏻😮‍💨

arTistapple• in reply to2 years ago

I cannot begin to contemplate yet the whole of this post. However I am trying and I will be back to it. Just wanted to comment on this part, through experience. I am certain this part happened to me when experimenting/attempting T3. I have teetered in the cusp of type 2 for years and years. However around taking the T3 Ha1c suddenly went into confirmed diagnosis of type 2. Only about 5 points made the change. Now things have settled again (since no T3) it’s dropped. No other changes have been made. I wish I understood this bit better too. My brain fog is definitely worse when I just do not have enough ‘sugar’ rattling around my body. I am truly driven to make pancakes on those occasions!

• in reply toarTistapple2 years ago

arTistapple I couldn’t speak (from an amateur standpoint) to your adrenal function without seeing some results but I can tell you that my brain/body function without sugar is AWFUL. I get all sort of problems - dissociation/brain fog/confusion/sensitivity to light/light headed/tearful/anxious, and I thoroughly believe this is adrenal for me. Furthermore, a poor response to thyroid hormone can mean your adrenals are unhappy.

You are also not the only person I’ve heard say that T3 tipped them into T2DM or pre diabetes. I’m afraid I haven’t read enough yet to be able to understand why, but I think Paul Robinson has some articles that look into it. X

arTistapple• in reply to2 years ago

Thanks. I am pretty sure I am going to get adrenals tested along with deiodinese. Feel I need more info before making any more decisions.

2 years ago

If anyone is interested, I have found an offer on for a month’s trial of a Dexacom 6. Basically eat every food type and combination you can in a month and note down how you respond!

uk.store.dexcom.com/en-GB/d...

helvella I know a lot of people are on the Zoey (I think it’s called that?) waiting list that includes a CGM. I don’t know how this offer compares but could be worth posting? I have ordered one for myself so can feedback on it soon.

RegenallotmentAmbassador2 years ago

Hey DFC you brave warrior!

I love this approach to decision making, good for you. You have a very methodical plan and justification made there.

I’m with the… ‘are you sure you want to do that’ gang.

I hear you though, it sounds messy, this is your life and your symptoms which no experts can fully explain, it’s been going on so long etc. totally get you need to do something.

blood glucose - my contribution would be black seed oil 5 ml a day. Wonderful stuff. Can’t take it forever but it really helps. I read about it in Izabella Wentz. Used it last summer with her AI diet, was an early step in improving things for me.

Other thoughts… have you looked at gut health? I’m all in with Supergut (Dr William Davis), no sugar, no grains, (but still eat potatoes, carrots etc so not keto) I’ve been making his LReuteri coconut yogurt from gastrus (BioGaia) tablets, which should rid me of any residual unhelpful gut microbes and his approach is helping me, along with turmeric he recommends oregano oil, Berbererine, clove oil too. I haven’t tried the last two on account of trying not to introduce too many things at once.

Final thoughts, don’t be offended, I learn so much from you and fully appreciate your experience in this field, but are you by any chance sabotaging yourself with a bad habit/improvable routine? We all do it, no eating plan/ life regime is without it’s days off. I ate 6 enormous American style marshmallows on Tuesday night!!, hunted the cupboards for sugary raisins this week, I’ve also not paced myself, overdone it on a good day and the felt dreadful, only myself to blame there, could there be something … a suboptimal vitamin, a high tannin interaction, a timing error or something else? Just a thought, sometimes it can be something so simple.

Wishing you well and looking forward to #6 and positive news 🌱

• in reply toRegenallotment2 years ago

Hello Regen,

Thanks for your kind thoughts. I will look into black seed oil! My Dexacom arrives tomorrow, I am looking forward to seeing which supps make the difference.

Yes, on balance and thanks to everyone’s time and efforts reading my journey and adding their thoughts I think 0.5 grains is probably an acceptable level to go to, to quell some fears I do only intend to be without thyroid hormone for 2 months max.

You are totally correct about habits, while my diet is pretty much bang on, my habits are not good - I am on my phone too much and too late, I’m alone too much, I’m ruminating too much, under stimulated in some ways, over stimulated in others etc. I’m sure you know what I mean 🙄 and as you say, this has been my life for 2 decades nearly, the pressure and panic to prevail increasingly mounts… but I think I am getting slowly closer. I’ve realised that there is no doctor/guru out there who can fix this, no medication that will remedy it all and there are no shortcuts in understanding, I have to properly research and understand what I am doing. I made the great error of not questioning the Professor XXXX on Harley St. all those years ago who diagnosed me with hashi’s and told me rock bottom T3 didn’t matter. But there needs to be a line where I decide I’ve gathered enough information and I must get out into the world as best as I can and live to some degree.

yes! Optimising vitamins is also high in my list 🙂 they risk being forgotten when I’m getting carried away by lofty cortisol ideas…

Truly thank you for your support and time, I appreciate it. The HypoPups - now newly named my ParasympatheticPups - remain a fabulous decision! More time with pups + less time on phone will be a good thing, I am sure xx

Dogs in cats collars

TiggerMeAmbassador• in reply to2 years ago

I hope you removed the bells!! Poor pups will get a complex 🤣

• in reply toTiggerMe2 years ago

😂😂 I did! I do feel embarrassed for them really… poor little catdogs.

TiggerMeAmbassador• in reply to2 years ago

They'll need therapy once the local big thug of a tom cat bullies them 😆

• in reply toTiggerMe2 years ago

we can all go to therapy together 🫠

Imaaan• in reply toRegenallotment2 years ago

Blackseed is highly regarded and widely used longterm in the Middle East, Africa and many other parts of the world for its medicinal properties for pretty much every ailment and I'm a fan of it.

Hidden I hope you do some research it and get to try it

On another note, I went to look at your last test posted and it showed a low free t4. I think adding t4 in the form of t4 or bovine glandular might be helpful. It certainly would change up the 4:1 ratio making it more gentler in your system. Also, it may help to have some lingering t4 as the t3 slowly wears off.

Personally I couldn't get to optimal without including t4 meds with ndt and later on I added in some bovine glandular from Ancestral supplements after my doc refused to renew my t4 meds because of a low TSH. It helped a lot. It took over months to wean off the extra t4 I was taking and now I'm currently only on ndt (Erfa).

Btw another thing to think about is trying Erfa rather than Armour. Some find it more gentler. That said, in your shoes I would take Ancestral Supplements Beef Thyroid and slowly switch over to Erfa.

arTistapple2 years ago

The stuttering levels due to Hashimotos itself may account for a lot of stuff going on. Unlike you brave person I have decided to take a step back recently. It’s been two years since diagnosis. I gave the first year over to my GP. All the while reading everything I could get my hands on. Second year I discovered this forum. Far more info here (and support) but overwhelming just at the moment. I have gone for a kind of reductionist look at the problems. In itself it has not been the best approach - especially when I have clearly not understood what I was told sometimes. My approach has been too narrow (I think) hence the step back. I cannot help admiring your approach and wishing you well. Dare I say for all of us. If you do well we can all learn from it. However I do not want you damaging yourself in any way!

birkie2 years ago

Hi❤️

Can I pick your cortisol brain 😁, firstly I have no thyroid, total thyroidectomy in 2019 due to graves thyrotoxicosis, I struggled with thyroid medication... Still am I suppose as I really don't feel I've recovered.

Must also point out my calcium and parathyroid hormone went over range twice in 2020 with the endo saying I possibly had primary hyperparathyroidism, this was the second time in my life I got that diagnosis the first was in 2004, but endo did watch and wait, and they are doing the same now in 2023, eventho a parathyroid surgeon as identified a nodule in my neck by ultrasound scan (private appointment as nhs would not do the scan) 😠

In 2020 I had bloods done and they did cortisol on the recommendation of the endo, it came back low so endo requested the test where you go in to hospital for a number of hours and they take your blood every hour and test it.. Forgot the name of it🤦‍♀️ anyway the report to my gp just stated I reacted to the test.. in that I produced cortisol so everything was normal no further action required!

I never really got a good answer when I asked my gp, and the report which I requested was sparse at best just saying I responded to the cortisol 🤦‍♀️ no graph or range of what I reached!

I have never had my cortisol check since that test in 2020 .. Another thing I feel I should mention, I was rushed into hospital in 2015 with server stomach /bowle issues bleeding from my back passage and stomach, eventually Diagnose with colitis, I was put on steroids for 4 months.. Those 4 months were the best time of my life... The best I'd ever felt.. When I weened off them everything came back, body pain fatigue, just went back to feeling very unwell again 😣 I asked my gp if I could be put back on the steroids, he refused saying we can't keep you on steroids indefinitely they can harm you body... But he prescribed me opioids for 9 years😳 I managed to get off those Thank goodness.

So my question is do you think I could gleen anything from having my cortisol done again... Gp refuses to do it as he says it has no baring on my health, I've been looking into getting it done privately 👍

Sorry for the long draw out post.. But my life is soooo complicated at the moment with everything going on in my body😢😢

TiggerMeAmbassador• in reply tobirkie2 years ago

Short answer... YES 🤗 get the 4 point saliva and DHEA to see where you are at!

regeneruslabs.com/products/...

• in reply tobirkie2 years ago

the report which I requested was sparse at best just saying I responded to the cortisol

that sounds like a synacthen test? It’s very common to have a good response to synacthen but not make enough ACTH yourself, it’s possibly secondary adrenal insufficiency and can be helpful in some circumstances by T3… I assume you have some in your treatment?

As TiggerMe says, a saliva cortisol is seemingly the best test you can get to see where you are x

birkie• in reply to2 years ago

Hi thank you for responding ❤️

After my full thyroidectomy I was given T4 for around 4 months my bloods were awful I was very hypo (not absorbing the T4 as I had bad bowle issues) I reacted badly to it, as it contained lactose I'm lactose intolerant and have colitis so the endo eventually gave me T3 teva I started low on 10mg then went up by 5s but the bowle/stomach issue remained that was due to not getting along with teva, this was all through may 2019 (thyroidectomy) right up to 2022 when again my gp changed my T3 to Roma started on 10mg got to 20mg been on Roma since around Oct 2022 I was due to have bloods done in Dec 2022 but my surgery couldn't give me an appointment due to us amalgamating with another surgery which took 4 weeks, I eventually got my bloods done on Jan 31st 2023, my TSH was over range I was clearly borderline hypo.. I'm now on 25mg T3 split 20mg.8am 5mg 6.30pm..my next bloods are due in 2 weeks time so I'll see what the increase in 5mg has done for my T3 and TSH.

Yes the test was the one you mentioned 👍

OK great I'm going to order the slaiver cortisol test as Eeyore100 sugested👍 thank you both for responding ❤️

RegenallotmentAmbassador2 years ago

been thinking about you and your post… this could be old news, I know you do so much research. But…. Do you have a copy of Dr Barry Durrant-Peatfield, Your Thyroid and How to keep it healthy?

He explains exactly what you describe with inability to tolerate/benefit from thyroid hormones when adrenal reserve is low. He even suggests your approach but only for 8 days not longer, he also makes the link with hypoglycaemia which I think you also mentioned. It’s Chapter 8 🌱

Jamima2 years ago

Hi DFC - I salute your bravery and determination in your quest to feel well. Like you, I too showed low results on an SST, not as low as yours but low enough to cause symptoms, and like you, I’m not progressing using thyroid hormone, in fact any attempt to raise levo up to 50 or metavive I more than 2 capsules leaves me feeling more hypo. The days I’ve stopped taking thyroid meds are the days I feel best, today is one of them. I’m still dosing a small amount of HC 5-7.5 mg per day and that’s the only thing that makes me feel better. I’ve also increased topical progesterone dose and feel better for that. Like you, I’m going to do a trial of no thyroid and introduce sex hormones. My thyroid levels have increased in the year I’ve been self medicating but I seem to be at stalemate with thyroid hormone and wonder if supplementing the very low sex hormones will add something to the mix, I know they’re involved in optimal thyroid/adrenal function so I’m giving it a shot and will continue with low HC alongside.

Good luck with your experiment, I hope it gives you more insight to workings of this quagmire we know as the HPA.