Regenallotment2 months ago

Sorry to hear this, sending you my best 🌱

It looks like you have tried a lot of what I was about to suggest.

Could it be that you are still undermedicated?

Have you done the whole gluten dairy free things

Anything else that’s affecting absorption?

🌱

Incoguto in reply to Regenallotment2 months ago

Thank you so much Regenallotment, it means a lot, I'm having a though few days and weeks.

I am running out of ideas.

It could be, as I retain water and have several hypo issues.

Yes, have been gluten and dairy free before, no difference I'm afraid.

I do have SIBO, which affects my absorption and I'm being told by my endo it reduces also conversion of hormones. I will be taking medication for it soon.

I was trying to take 1/8 grain of Armour more than what I take currently, that was mid January and after 11 days I was overdosed with FT3 85% - was shaking, had tremors, was very hungry, waking up sweating with pulse of 100, my BP also shot up.

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Regenallotment in reply to Incoguto2 months ago

hmmm poor thing, sounds rough. I’ve been working through SIBO and learning more and more. I started with Izabell Wentz diet and (all introduced one at a time 2 weeks apart) tried black seed oil, NAC, S Boulardii, much improved but still not ideal. Reading Supergut by Dr William Davies and learning lots. Going for it again with curcurmin and homemade L Reuteri yoghurt.

Maybe a look and options for SIBO might help. I just read in Supergut that the toxins from unhelpful bacteria in SIBO cause depression, anxiety and this really resonates.

It sounds like you are onto something to me 🌱

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Incoguto in reply to Regenallotment2 months ago

Thank you❤️

Sorry to hear that you also have SIBO, that's awful. Thank you for all the recommendations, super helpful.

I have xifaxan waiting for me, afterwards my dietician will be applying herbal therapy and prokinetics plus low fodmap. I just wasn't able to do it earlier unfortunately.

My endo also thinks that SIBO is responsible for anxiety and depression! She said there is enough research there to show gut- brain connection.

They also want me to try to LDN.

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Regenallotment in reply to Incoguto2 months ago

excellent then you have something to focus on and try. 👏 let us know how it goes. Xx

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Incoguto in reply to Regenallotment2 months ago

Will do for sure x

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Beau552 months ago

What was your cortisol and what were the ranges? It’s not just about them not being bad, they need to me optimal for the T3 to work properly.

Do you mean your cortisol levels drop on a higher dose of thyroid? It sounds like they are struggling to keep up and all of your symptoms point to adrenal. Have you tracked your temps? If your average daily temps are fluctuating by 0.1/0.2 then this points towards an adrenal issue.

Have you ever tried adrenal cortex?

Incoguto in reply to Beau552 months ago

They drop into range from high and over range, have tested these several times in the last 3 months. I have read that hypos sometimes have also high cortisol and when adequately treated cortisol goes back in range.

My temps are not fluctuating, everyday it seems to be 36.8 under armpit or 37.4 in ear.

I have tried adrenal cortex and it made me feel more jittery.

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dontforgetcortisol in reply to Incoguto2 months ago

Hey Incoguto, I’m so sorry you are struggling, it is a horrible place to be.

Just a few things that come to mind reading your situation -

The fact that ACE made you jittery is a very good indication that you need adrenal support. When introducing cortisol support you can initially expect an increased thyroid hormone uptake (according to Peatfield & STTM) which can manifest as HYPER symptoms or feeling jittery as you say, so it may be worth sticking with the ACE and raising the ACE slowly to help slow uptake. Some even suggest dropping thyroid hormone for a few days to let it run low and then introducing ACE because the initial surge of uptake from the presence of cortisol can make you feel so stimulated and off.

Secondly, morning temps is not that useful in assessing adrenal health. Ideally DATS (daily average temperature) are better for adrenals, for adrenal health it’s the fluctuation that matters, for thyroid it’s the number itself. For 5 days, take temperature every 3 hours, then calculate your daily average. If there is more variation between those numbers than 0.2 degrees as Beau55 says, then this means adrenals are unhappy.

Have you tested rT3? According to STTM in some people over 1.5 grains of NDT can create a rt3 issue. They recommend 1.5 of NDT + pure T3 thereafter and since you have done so many trials of other combo variations, it might be worth giving that a try.

Another thing to mention that I don’t know if you’ll have heard of is iron overload. This is where iron appears low (or very high) on bloods but in fact is high just not available for use, it’s due to a number of factors but copper plays a big role. I know you have issues raising your iron and iron overload may be something to research. I can’t speak with any authority on it as I haven’t read enough about it but it could be worth looking into

I am so sorry you are struggling so much. I really hope you feel better soon xx

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Imaaan2 months ago

Ferratin is super low

Incoguto in reply to Imaaan2 months ago

This might be due to SIBO as it hasn't been yet treated. Also, I am taking a lot of iron and my iron is 80% of range. If I take even more than now, would that not make it over range? Just curious.

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Imaaan in reply to Incoguto2 months ago

I'm not sure. Hopefully someone else with my knowledge can guide you on that front

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Incoguto in reply to Imaaan2 months ago

Thank you Imaaan. I think I need to treat that SIBO pronto.What's interesting that my hemoglobin, rbcs and all the rest are perfect, not even pointing to anemia🤷‍♀️

I wonder if might be just utilising a lot of it and I have enough since it's in blood.

Just loose thoughts on it.

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Imaaan in reply to Incoguto2 months ago

Interestingly enough , the sibo bacteria uses up iron. I cant recall if it's all 3 types or 1 of them. I watched a video of a naturopath that gave really good advice regarding this matter.

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Incoguto in reply to Imaaan2 months ago

That is true with SIBO and iron, my iron was midrange 2 months ago, had same lowish ferritin, but I was taking more iron and now it's almost 80%.

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Regenallotment in reply to Incoguto2 months ago

my iron counts are good but ferritin tends to go low too… it would be good to know more about this. Reminds me, didn’t have liver this week, must get some tomorrow 🌱

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Incoguto in reply to Regenallotment2 months ago

No way, so I'm not the only one?Maybe SIBO affects ferritin more than iron for some reason? Or maybe some people just have low ferritin and good iron and it's normal for them if full blood count is also good? Have no clue.

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Regenallotment in reply to Incoguto2 months ago

I wondered this too…. I’ve been avoiding reading up on this as I get so easily confused but maybe I’ll have to challenge myself 🤣

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Incoguto in reply to Regenallotment2 months ago

Sometimes it is better not to read I feel my mind is calmer then and I am still doing my best 😅

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Partner20 in reply to Incoguto2 months ago

As your rbc is over range and your haemoglobin and haematocrit are close to the top of their ranges, be very wary of introducing extra iron either in supplements or food. Should all three go above range you should be referred to a haematologist for further investigation.

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Incoguto in reply to Partner202 months ago

Thank you Partner20❤️The only reason these 3 are high or elevated is because of Armour. For some reason T3 stimulates my RBC and the other two. When I was on Levo only they were normal. I even thought I might have Polycythemia Vera, but read that hormones stimulate erythropoesis.

Another good reason for me to tweak the dose I think!

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Imaaan2 months ago

youtu.be/r6V57JqLKcg(Not working as expected?)

Incoguto in reply to Imaaan2 months ago

Thank you Imaaan❤️

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Incoguto in reply to Imaaan2 months ago

This is amazing! Thanks, might get some bifidobacteria tomorrow 😊

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Imaaan in reply to Incoguto2 months ago

She has some really good videos. If you're interested in learning more about SIBO I have a few more links to share. Let me know

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Delilahmy in reply to Imaaan2 months ago

hi Imaaan links to Sibo would be great could I share some too please or even a new post many thanks

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Imaaan in reply to Delilahmy2 months ago

Sharing is caring so pls do. I'm always down to learn something new but how about you start a new post so we dont hijack the post.

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Hopetoheal22 in reply to Imaaan2 months ago

wow Imaan, this video is amazing thank you so much 🙏 I hit my head badly years ago and my neck has never been right since, I’m increasingly convinced it was the start of my SIBO (along with food poisoning) and links with my hashimotos too. Everything about the vagus nerve and its functions points to this- thinking damaged from fall maybe? Love to see more videos, I will check out her other stuff! Thanks again, really hope you’re doing well 🤗

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Imaaan in reply to Hopetoheal222 months ago

Sorry to hear about it. We should compare notes in pm or a new post because I hit my head when I fainted face forward on cement in my early teens. Hopefully there was no damage for the both of us but maybe it triggered or altered how our vagus nerve functions. Who knows.

What I do know is that Dr Pimentel who's the leading authority on SIBO has mentioned food poisoning having a direct link to developing SIBO. Hypothyroidism is another major player.

I'll try to compile a few videos I found helpful. Give me some time pls because I'm in worshiping mode for Ramadan. Also haven't been in the best shape due to my apnea and adrenals

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Hopetoheal22 in reply to Imaaan2 months ago

thank you Imaaan - so sorry about your head injury 😣 I’ve sent you a pm

Yes some of my gut issues started after the food poisoning, although I didn’t really realise at the time.

Ramadan Mubarak and take care 🤗

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Imaaan in reply to Hopetoheal222 months ago

I meant to write that I hit my head on a concrete floor instead of cement. I blacked out before hitting the floor so I didnt feel any pain. My friend witnessed the whole thing and it was more horrific for her...lol

Thank you soo much for the beautiful greeting. I'll respond to your pm 💕

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Imaaan in reply to Incoguto2 months ago

Spore probiotics and l reuteri yogurt helps your gut and is sibo friendly

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Eeyore100 in reply to Imaaan2 months ago

I like her style! Thanks Imaaan

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Imaaan in reply to Eeyore1002 months ago

I find her words easy to digest. You're welcome.

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Ajva2 months ago

I know you have said you have tried adding in levo. I am on armour.. I can’t go over 1 grain as my t3 goes well over range and like you HR and BP go crazy. BUT I managed to source tirisont and added that in, took me a long time to adjust as I very sensitive with meds.

Next issue is tirisont is now out of stock in the uk until at least July. I have managed to get a compounded levo with just rice powder as the filler. I need to start this next month.

Would this be worth trying? I actually attempted to come off of armour various times. I was on tirisont and compounded t3 for a year, Honesly I felt like I was going to die I felt that bad. Went back on armour and within a few days I felt so much better.

I just need a small dose of armour along side levo to feel ok. I am still not great by any means..

I am on 1 grain armour and 75mcg of tirisont (probably more near to 100mcg of t4 levo) as tirisont absorbs better and you do not need such a high dose.

dontforgetcortisol in reply to Ajva2 months ago

when T3 runs high from a small amount this can mean there is low cortisol

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Ajva in reply to dontforgetcortisol2 months ago

yes without a doubt. My cortisol is low, trying to work on iron at the moment to hopefully improve

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dontforgetcortisol in reply to Ajva2 months ago

That’s great.

Cortisol is probably what you really need to get the gateway opened and the cells using the T3 properly. I don’t understand why but high blood levels of T3 on a small amount of T3 with no symptom resolution is *often* remedied by cortisol supplementation.

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Ajva in reply to dontforgetcortisol2 months ago

what would you recommend for cortisol supplementation. I just can’t seem to get mine up. Keep being tested for addisons and getting nowhere as their testing methods are awful. Scenathen, urine 24 hour are all useless. Medichecks have stopped their saliva test.

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dontforgetcortisol in reply to Ajva2 months ago

I'm not surprised Medichecks have stopped their salivas, their results weren't very reliable, I'm glad they've stopped. If you want to test it then Regenerus is OK although here is some controversy about Labrix. What are the results of your Synacthen? It's quite unlikely you have Addison's and using a doctor for adrenal help is a bit like using one for thyroid help - unless they actually understand it, you won't get anywhere.

Cortisol treatment - it is recommended by Peatfield & STTM to use Adrenal Cortex Extract, NOT whole adrenal. You can try Paul Robinson's method of CT3M but many don't find it works. If ACE proves too weak then hydrocortisone may be needed, you can use OTC creams if you can't get a prescription from a doctor who is willing to treat you properly. Some ACE brands include Thorne, Adrenavive & Klaire Labs. Thorne is expensive. The STTM recommendation is: 150mg on waking, 100mg at noon, 50mg afternoon, 50mg evening if you have low results across the board and it is recommended to test beforehand to know for sure. Peatfield recommendation is to use anywhere from 150mg to 600mg in the morning and nothing after midday. Initially cortisol presence can increase thyroid hormone uptake so much that you may feel over stimulated/strange. Peatfield advises to let thyroid hormones run down a few days before starting ACE to avoid this. Hope that's helpful!

EDIT: DATS - after 5 days on those ACE doses you can do DATS - measure BBT 3 times, 3 hrs after waking, 3 hrs after that, 3 hrs after that. Add them up and make an average, do this 5 times. If there is more than 0.2 degrees fluctuation between the temps then ACE needs to be increased.

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Ajva in reply to dontforgetcortisol2 months ago

this is helpful! Thank you. I did look at the Thorne adrenal support but they were out of stock for a while. I drink electrolytes all day and as soon as I wake up. I use the relyte ones that have a substantial amount of magnesium in. My bloods are always coming back low cortisol am, I have attached my results. I am due a 24 hour urine test but endo thinks I have cushings, I do not if anything my cortisol is low and I have symptoms of addisons.

Blue

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dontforgetcortisol in reply to Ajva2 months ago

What is your dosing on these results and how long after last dose?

I don't think electrolytes are going to cut it, your blood cortisol is pants. Have you got the results of the Synacthen?

Thorne is available here; yourhealthbasket.co.uk/prod... best use Thorne for titrating doses up and down as it comes in 50mg tabs. Thereafter you can use cheaper brands once you know your dosing schedule.

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Ajva in reply to dontforgetcortisol2 months ago

what do you mean by dosing on results, as in thyroid meds? For those results I was on 125mcg of tirosint and 5mcg of t3. I am now on 1 grain armour and 75mcg tirsont. As I felt so terrible for a year on the tirisont and t3. I will buy some of the Thorne to help my adrenals.

Thyroid meds t4 I didn’t take for 24hours and t3 was 12 hours before labs

Unfortunately I don’t have the results for synathen as they were done by the local hospital. Although I am going to request all my results.

I have been dignosed with ME but I honestly think it’s my thyroid and cortisol causing the chronic fatigue.

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dontforgetcortisol in reply to Ajva2 months ago

Yes sorry, I meant what thyroid dosing gave you those results.

Are you a poor converter? Your FT3 is really high for someone on 5mcg + 125mcg of T4, I really think IMHO adrenals are big for you. The only thing I am wondering is did you wait long enough between last dose and the blood draw for these results?

Yes, until you are optimal on thyroid dosing I think all other diagnoses are under suspicion!

If you need reminding/clearer instructions re. Adrenal cortex extract supplementation then read my bio, I have put it all in there now

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Ajva in reply to dontforgetcortisol2 months ago

thank you. If you click back on my last comment I did edit my dose but. No t4 for 24 hours prior to labs t3 was taken 12 hours before. Fasting labs, 9am, no biotin or supplements for a week prior

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dontforgetcortisol in reply to Ajva2 months ago

OK, so those aren't falsely elevated then... Yes, I think cortisol is king for you. I hope you get on well with the adrenal cortex extract! x

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Ajva in reply to dontforgetcortisol2 months ago

thank you so much for all your help. Very few people even specialist understand cortisol. How my endo thinks I have high cortisol is beyond me. When all my bloods come back low 🤣

Also do you think I need to be on meds for the cortisol being that low?

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dontforgetcortisol in reply to Ajva2 months ago

He might have an idea that your total (blood) is low but you free is high?! That's literally all I can think of to explain that mad hypothesis from him... Sounds like he hasn't even looked at your results, which wouldn't surprise me.

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Incoguto in reply to Ajva2 months ago

Thank you Ajva❤️This is frustrating, isn't it? Is your ft4 very low and ft3 high over 1 grain?

Definitely worth trying, I actually have two packets and Tirosint SOL ampoules, but in 75mcg, my Polish endo wanted me to give it a go, but it might be better to start really small, like 12.5mcg?

Like you I did come off Armour to levo and t3, it was a disaster, put loads of weight on, struggled with symptoms cycling throughout the day, while Armour or Naturethroid always make me feel more even.

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Ajva in reply to Incoguto2 months ago

yep very low t4 and t3 over range or top of the range on armour. The tirsont I seem to cope quite well with a small dose added to the armour. I started like you on 12.5mcg then I just built up over a good few months to 75mg with the armour. Where do you manage to source the tiro sol from? What place? You can private message me if you would like as I don’t think we can discuss on here. That’s the same with me I was on a large dose of tiro and compounded t3 and I felt so terrible I could hardly move or get out of bed for a year. Kept preserving and upping the dose. Then 2 days back on armour I felt like myself agaun

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radd2 months ago

Incoguto,

‘I don't know what else to do. I have been trying so hard and I feel today that this is it, it won't get better.’

You have kept T3 levels quite high, even asking at times if others need over-range T3 to gain well being. Because a few members appear to thrive well on high T3 levels it can invite thoughts we may too but I would guess the majority fair better with T3 levels around two thirds of the way through range. 

Your previous posts have all indicated excess T3 ‘feeling very warm, hungry, shaky sometimes, greasy face and hair, left eye twitching etc. ) and possibly hypo (fatigue, cold late afternoon, dizzy, brain fog, still retaining water)’ and ‘swelling’ and ‘My biggest issue is insomnia, I still retain 9-10 kg of water, get fatigued etc’, etc 

You can be hypo with good labs, even over-range labs because the way thyroid deiodinase work (activating/deactivating enzymes) is if we locate and recognise our sweet spot with the right meds, we’ve cracked the jackpot. However, because of all the other numerous Hashi related issues going on it becomes easy to miss the sweet spot and then not only have we missed the jackpot and our chance of well-being but the proportion of those meds not required risk working against us. Double whammy! 

This is because we don’t just pee away excess as the body has a far grander methods of protecting tissue and brain from the damaging effects of too much thyroid hormone, and that is to turn it into inactive metabolites such as the infamous RT3. We all need these inactive metabolites to retain equilibrium at tissue level, but too many throw the ratio out and they start dominating, eg our meds become inactive. 

When we continually strive to found an eluded wellness, it can become hard to see the wood from the trees. You have continually titivated your dose and tried particular approaches at different times without success, so maybe it would be prudent to revisit everything again.

If this were me with your labs and symptoms I would be reducing thyroid meds right back to at least 2 grains as a total and holding it for 6 months. You can not assess true progress by constant readjustments. The only adjustment to make would be to decrease T3 levels if they remained high by reducing NDT further to 1.5 grains + 50 mcg Levo for example. You are not going to become seriously hypothyroid on these doses through lack of thyroid hormone. You say you had previous difficulties with Levo but they were most likely caused by other factors and not the med per se. If NDT T3:T4 is too T3 potent then T4 has to be added in to achieve the correct total.

If symptoms don’t improve or worsen look at the surrounding supports that might be suboptimal as opposed to blaming the dose/meds revisiting things like iron, vits, minerals (maybe selenium, zinc, Q10, salt, etc), adding more primary dietary protein (as opposed to secondary) important as (indirectly) what steroid hormones are made of and what other hormones are transported around the body on. Adopt a glucose balancing diet that hormones act best on (excess T3 is known to induce damaging high blood sugar levels), ensure self-time: are you regularly doing an activity you love, or indulging a want. These elevate neurotransmitters that help thyroid hormones work better, and don’t forget such is it’s power T3 is a neurotransmitter in its own right as well as a thyroid hormone. But whose efficacy will only work best in the correct ratio when accompanied with T4. 

The other thing I noticed was you previously said when you felt physically improved, your mental health declined. If you read my profile this scenario was mine and it turned around when sex hormones were optimised. If we’ve had long term undiagnosed thyroid issues, then compromised adrenals can fail to take up the slack when ovaries produce less.  I was menopausal anyway but when evaluating previous menstrual patterns realised my sex hormones had been massively out of kilter for many years. Have you investigated O & P levels? 

Good luck with your SIBO protocol. And that’s yet another positive step in the right direction 😊. 

Supermisshelen in reply to radd2 months ago

hi Radd May I ask.. you mentioned sex hormones and addressing imbalance, was this with HRT?

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radd in reply to Supermisshelen2 months ago

Supermisshelen,

Yes, the usual body identical.

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Incoguto in reply to radd2 months ago

Thank you radd I have read your reply several times, it is very helpful, kind and supportive, means a lot, thank you❤️I have a couple of questions on the back of your message:

1. Glucose - is this always high with T3? I'm on insulin resistant diet (since 2021), I don't have IR, but implemented it to hopefully improve wellbeing. With T3 higher than 63% my glucose was 91 fasting last year. It is very hard to know what is causing what 😕

2. My O and P were checked few months ago, were in a good ratio 10:1, and not low in ranges.

3. Prolactin- gyno says it is too high. Since lowering Armour slightly end of January my libido diminished. Gyno says high prolactin can be hypo. Would you know if this is true?

4. On 2 grains of Armour both my ft4 and ft3 fell under range and tsh stayed supeessed. This is why I do little adjustments. Even removing 6.25 Levo in November caused my FT4 to drop from 75% of range to 39%.

I am so tired of this all. Tried adding various amounts of Levo for 18 months and reducing FT3, always ended up feeling worse. Maybe my FT3 was still to high, hard to say.

Forgot to say, my cholesterol is still high too.

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radd in reply to Incoguto2 months ago

Incoguto,

1. Glucose - is this always high with T3? I'm on insulin resistant diet (since 2021), I don't have IR, but implemented it to hopefully improve wellbeing. With T3 higher than 63% my glucose was 91 fasting last year. It is very hard to know what is causing what 😕

No, glucose can become high with high T3. It is an indicator that T3 is too high as happens because gluconeogenesis becomes elevated leading to increased liver glucose output and higher & higher blood sugar levels. All research refers to insulin resistance in the state of hyperthyroidism as the result of mainly heptic influence. Thyroid hormones exert both insulin agonistic and antagonistic actions in different organs for normal glucose/carb metabolism, in particularly the liver. Reduce T3 levels and blood glucose levels reduce also. 

For more info read my fourth answer down  …. healthunlocked.com/thyroidu...

.

2. My O and P were checked few months ago, were in a good ratio 10:1, and not low in ranges.

Great news 😊

.

3. Prolactin- gyno says it is too high. Since lowering Armour slightly end of January my libido diminished. Gyno says high prolactin can be hypo. Would you know if this is true?

Yes, I meant to comment on this and forgot. Prolactin is our milk hormone after giving birth when we cry a lot 😬. It should not be raised in normal circumstance. High prolactin correlates with TSH and so becomes high in hypothyroidism when TSH rises in response to inadequate thyroid hormone. I don't think prolactin responds directly to thyroid hormone and your TSH isn't raised so I would question this and ask for further investigations.

Loss of libido can be excess thyroid hormones, thyroid hormones that aren’t working well but most commonly caused by low testosterone. Again speak with your gyne. 

.

4. On 2 grains of Armour both my ft4 and ft3 fell under range and tsh stayed supeessed. This is why I do little adjustments. Even removing 6.25 Levo in November caused my FT4 to drop from 75% of range to 39%.

Sometimes we become obsessed with thyroid numbers because we are so desperate to get well. I know. I’ve been there too. You are on these supposedly ‘good’ labs now but failing to see improvements. That’s why if it were me I would forget the numbers, forget the past and start again. If labs are driving you crazy, reduce your dose and don’t do any for a while (opposite advice to usual! 😬). You need to get over that you have to have such high in range T3 levels. Not everyone does, I don’t. Don’t forget labs are not always reflective of what is happening inside, and in cases like this not worth the paper! 

.

I am so tired of this all. Tried adding various amounts of Levo for 18 months and reducing FT3, always ended up feeling worse. Maybe my FT3 was still to high, hard to say.

Yes, who knows what is going but because your way hasn’t worked and other markers are indicating high thyroid hormone, don’t be afraid to try another direction. 

.

Forgot to say, my cholesterol is still high too.

High cholesterol is another hypo symptom to join all the rest! 

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Incoguto in reply to radd2 months ago

Thank you ❤️

1. Interesting about glucose - I will reduce Armour and check it, will be curious to see what it is.

2. O&P - might have to check it again soon

3. Prolactin - thankfully this is mildly elevated and only if I wanted to get pregnant. Otherwise he wasn't alarmed (still within range, but he prefers it a bit lower). I need to go back to him for cervical check so will ask him about testosterone. Should I test it anyway? I have access to a lab around the corner, results in 1 day. Should I test just free testosterone? Any time within the cycle?

4. Cholesterol- when taking 3 grains of Armour my cortisol was in range and then both ft3 ft4 were top of ranges and was experiencing overdose symptoms, so when reduced Armour the cholesterol went up. Do you think this is to do with ratio ft4 to ft3?

5. I am definitely scared to try another direction, but I have done what could already trying out higher Armour doses.

On cortisol - would you know if there is an increased cortisol clearance on high ft3? I have noticed that my blood serum cortisol is over range on lower doses and then it is in range and over midrange on higher doses.

Out of curiosity - you did mention that you need your frees lower in range, would you mind sharing what that looks like? How low do they get when you test?

I was programmed to think I should have everything high to feel well and for a while that worked too😕

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radd in reply to Incoguto2 months ago

Incognuto,

I rarely test but TFT’s were necessary after a recent switch from self sourcing Armour to a private prescription (meds 1 grain Armour + 50 mcg Levo)

Oct 2022 (MMH)

TSH 0.03 (0.27 - 4.2 mU/L)

FT4 14.7 (12-22 pmol/L) - 27%

FT3 4.2 (3.1-6.8 pmol/L) - 29.73%

I felt ok on these results but mouth issues continue and haven’t been sleeping well so endo suggested a quarter grain increase (to 1.1/4 grain Armour + 50mcg Levo)

02.03.2023 (Medichecks Advanced Well Women)

TSH 0.01 (0.27 - 4.2 mlU/L)

FT4 19.9  (12 - 22 pmol/L) - 79%

FT3 5.0  (3.1 - 6.8 pmol/L) - 51.35%.

I’m still not sleeping well. Actually I don’t feel a lot of difference! 🤷‍♀️. I accept mine are lower than most but there are other member who function best with low.

I was programmed to think I should have everything high to feel well and for a while that worked too😕

If you continually take more than you need you might feel great for a while but eventually it catches up as the gap widens between other systems put out of sync, and thyroid hormone deactivating enzymes take over.

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radd in reply to Incoguto2 months ago

Incognuto,

On cortisol - would you know if there is an increased cortisol clearance on high ft3? I have noticed that my blood serum cortisol is over range on lower doses and then it is in range and over midrange on higher doses.

I assume you make your observations from performing the saliva stress test? Thyroid hormone has the ‘U’ bend effect on cortisol, eg too much or too little thyroid hormone will always elevate cortisol release whilst reserve is good. However, you can not make assumption regarding cortisol clearance based only on the free cortisol.

It’s not as simple as we make, use and excrete, as it gets taken up by different glands that have the ability to keep it as cortisol or convert it into inactive cortisone (a kind of storage) that is can switch back and forth from. There are also other metabolites.

Most is bound to CBG (and a little bit to albumin) with 'free biologically active' fraction only making up about 1%. The stress saliva tests recommended on the forum are extremely useful in evaluating circadian patterns but is actually only measuring a tiny percentage of our over-all output. This is why the saliva test is poo-poo’d by conventional medicine because is in no way representative of total output. 

So going back to clearance  .......

I understand the best way of measuring clearance used to be the 24 hour urine collection I lugged to the GP surgery time after time, straight through the waiting room and lining up at reception with my gallons of pee! (I have always drank [water] for England!).  Now a days the modern method is the spot urine when you pee on several bits of paper over the day (aka DUTCH). Then all metabolites of cortisol are measured including  aTHF, bTHF and bTHE (these other metabolites are bit over my head). 

You are right to consider clearance though because through this can be better established total (metabolized) adrenal gland output, that may be normal or even high when saliva free is measuring as low. 

Years ago cortisol was only considered in the context of Cushings and Addisons and even when I started exploring, my bible was 'Adrenal Fatigue in the 21 C' by J L Wilson. (I still love that book 😊) but now we have advanced testing and the science behind it. There is an ‘Education” link on the DUTCH website with webinars, etc and recently I’ve been listening to Dr Carrie Jones’s podcasts. 

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Incoguto in reply to radd2 months ago

Interesting and you're right, I have made these observations based on blood vs saliva. My circadian pattern with saliva is perfect, it peaks and goes down, however, it says cortisol is in ranges, but not exactly optimal. On the other hand blood shows anything between over midrange to over range depending on my thyroid dose.This is why I was wondering about clearance.

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Incoguto in reply to radd2 months ago

Hey radd do you think it would be a good idea to do a 24hr urine test for cortisol? I have easy access to it, can do it next week. I understand this measures free cortisol.

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radd in reply to Incoguto2 months ago

Incoguto,

Urine is a more comprehensive recognised measure of total output, than either blood or saliva.  

Blood measures both free and bound, saliva measures free but only indicates levels at set points whereas urine gives total output of free (unconjugated) over 24 hours . In a system that is working or working too well, this value is thought to correlate with plasma cortisol levels (bound and free). However, in a poorly working system, this is not the case so 24 hour urine is usually only offered to investigate Cushings and not Addisons.  

If you have this test you will need to stop oestrogen based meds, eg  HRT or birth control, and don't do as I always did which was to drink excess water due to thirst, as it warps results. I had one 24 hour cortisol urine test but several  24 hour urine osmolality tests which measures the metabolites of potassium, sodium, urea, creatinine and plentiful others, because of previous low aldosterone blood labs. (It excludes Diabetis Insipidus.)

The first morning pee you collect from mid flow but the second you collect all of it. The reason being it contains more germs and will have less time to proliferate.

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Happytiredbunny2 months ago

have you ever had the type of bacteria overgrowth checked? I saw a biochemist a few years back who said I had an ovrrgrowth of Candida, I cut sugar and yeast out for 8 weeks, took oregano tablets and acidophilus 4… and I have never felt as good as I did when I did that… need to do it for long enough to starve the bad bacteria and replace with good

waveylines2 months ago

I just wanted to send you all my sympathy. You are really having a rough time. With your ft3 at 80% it doesn't sound likely that you need to boost ft4....that's simply a storage form. So if it were me I'd stick with what you are doing re thyroid and focus on the Sibo. I dont have Sibo so can't suggest or comment on that but I well remember not feeling well and blaming my thyroid meds. Infact for me it turned out I'm gluten intolerant and I also needed b12 injections. Addressing those two things enabled me to lower my thyroid meds a little & feel well. I'd ask your specialist if low ferritin is a feature of Sibo. I'm keeping my fingers and toes cross that sorting out Sibo will be the final.piece in the jigsaw for you.

Please don't give up. You've worked so hard to get this far. Big big hugs xx

Delilahmy2 months ago

hi Incoguto ….I too have had similar. Needle in the haystack but at least you are in this forum where they give great advice. I see your b12 is within range

B12 601 (187-883)I assume that is that serum b12 …. I wonder what your active b12 is …. It’s one thing that I have added in that has made a difference. The Nice guidelines do suggest treating as a trial if symptomatic. Everyone’s normal is different. Just a thought …. And check vit D levels …. Good luck

Brightness142 months ago

I suit NDT and was on Thyroid s for years until it was altered and never worked. After 6 months of trying to get well on Levo plus T3. I have just started Armour and after only a few days I am starting to feel well again, already.

I have no gut problems, perhaps you could try something else. These NDT's usually start working within about 8/10 days. Maybe try 2.25 instead of 2.5 grains. Do you split the dose in two.

Incoguto in reply to Brightness142 months ago

I used to take Armour and Naturethroid since 2015 and was thriving on both. Mid 2017 I stopped tolerating 3 grains and got overdose symptoms and since I have been trying different things. On 2 grains my ft3 and ft4 are under range. I have to be titrating very slowly by small amounts otherwise it backfires.

Like you, I didn't do well on Levo and t3, I gave it about 18 months.

I could also try Erfa, will see if I can get a prescription for it potentially.

Thank you❤️

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Incoguto in reply to Brightness142 months ago

I don't split the dose, how do you do it? I tried in the past into 3 and 2, still wasn't feeling well

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Brightness14 in reply to Incoguto2 months ago

I always took 2.5 grains to start with but after only two months my FT3 levels were over range. For years I took 1.25 grains at 6/7am and the other 1 grain at around 1.30pm this suited me. Thyroid s could be split into four easily. I don't think Armour can be split. I have no thyroid it was removed in 2015.

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Happyfairy092 months ago

Hi, sorry to hear you're feeling rubbish, it takes time to raise you levels, it can't be rushed, I'm doing the same and had to add levo to my armour to see if it makes a difference, didn't initially but it is now, it's taken months, please persist with it, you will get there.

Can I ask do you have your vitamin d checked?

Happyfairy09 in reply to Happyfairy092 months ago

I don't understand the percentage % you've put for your test results ?

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Incoguto in reply to Happyfairy092 months ago

I calculate where I am in the range, because ranges sometimes change in labs and it is not easy to compare results with different ranges so I prefer to calculate the percentage of a given range to compare like to like

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Incoguto in reply to Happyfairy092 months ago

Thank you Happyfairy09❤️ I will do my best to keep going as I finally want to feel like myself ❤️

May I ask how long did it take you to feel a difference? Has it been low and then it raised? What dosage are you taking at the moment?

My vitamin D is just under top range, I take 6000 units a day.

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Happyfairy09 in reply to Incoguto2 months ago

I was on 1.5 to 2 grains of armour daily, I feel due to starting hrt 2021 it has had an impact on my thyroid levels plusI got COVID twice that year, my thyroid levels took a downward turn, still in range but right at the bottom, I felt awful, emotional, tired, aching to name a few, but with an ace GP, who agreed to add levo to my daily medication before she would test me for chronic fatigue syndrome and ME, we have eventually got my levels to rise, not massively, it's been a slow process with lots of regular blood tests, tweaking of meds, so now I take every other day 1grain armour with 75mcmg levo

The next day

1.5 grains armour with 50mcmg levo

Brain fog has massively improved but not perfect, still ache sometimes but the menopause has cross over symptoms with hypo, but I'm getting there, I'm still off work but I have really had to take this time to sort my health out, I'm no good to work or my family if I didn't.

I've recently re introduced very high strength vitamin d, due to have that tested Monday alongside my thyroid bloods. The practice nurse wouldn't test me last year for Vit D stated not needed, however, my GP has agreed, ideally Vit d should be tested twice a year - around September ish then 6months later, but we are talking about the NHS here, you need to have a good reason to back up why you need it doing, does depend on who you see at your GP practice, if you have an ace GP like me, try and see them every time.

If not already have books on thyroid can be recommended to you, alongside one on vit D, we do have to take our own health in to our hands, a lot of us know more than GP practitioners but that's only because they touch on it very little in their GP training, however, if they specialise in that field totally awesome, I would never discredit a GP, but some are like jeez no words.

Keep going, you're doing awesome, you've reached out, keep reaching out, no matter how many times you might have to ask the same question, we all suffer from forgetfulness, I can be terrible.

Enjoy your rest time, you deserve it, don't feel guilty either that's another lesson I've had to learn, if I'm not functioning I'm no good to anyone so if I want a chilled out they can sort themselves out day then I take it, they're not babies and can handle mums day off day.

Sending a hug 🤍

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Happyfairy09 in reply to Happyfairy092 months ago

Sorry you did ask how long it took.I've been off work since the summer, it took a good few months before it started to turn around, we are all different, the main thing is don't try and rush raising any of your levels if you do it can come with its own backlash, I get heart palpitations if I do, that's another past lesson learnt.

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Incoguto2 months ago

I am so moved and positively overwhelmed by all of you responding to me, thank you from the bottom of my heart ❤️It will take me a while to respond to all of you, I will rest today to regain energy to keep going. I need to and want to keep going xxx

Woodyscooby2 months ago

Can I ask where you got all your testing done pls

Incoguto in reply to Woodyscooby2 months ago

Some of it in Ireland (SIBO), UK (Regenerus for cortisol) and other bloods in Poland

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GlassoBubbly2 months ago

I am not sure I have any "advice" per se, as I too have been struggling on 3 grains of Armour...and even if my labs seem "fine" the hypo symptoms are never ending; nighttime overheating, puffy face and tongue, impaired thinking and fogginess, water retention, constipation, significant and speedy weight gain. I am just sharing my experience to commiserate, and to say that maybe it's not us - not our vitamin level, not our "compliance" with how we split or take our meds, maybe it is actually the Armour (or the porcine API and/or supplier) that is at issue. I know there are people doing "fine" on Armour, but I am one of the many - like you - who are not. This cannot be just coincidence. I was perfect on Naturethroid, and since its demise have been struggling...so much so I have even purchased Thyrogold and other beef thyroid products as maybe my options with pharmaceuticals are now done. It's a slog, but it's even more difficult when we keep hearing we must be the problem and not the meds themselves. I even did T3 only for a while (branded Cytomel on a significantly high-ish dose) that was not a magic solution either. This dance is exhausting but. don't give up on yourself, you are not the problem.