Thyroid s and high cortisol : hello. 9months ago... - Thyroid UK

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Thyroid s and high cortisol

MiaMam profile image
23 Replies

hello. 9months ago I switched from 100 mcg eurothyrox to thyroid -s and have been having major issues. Today I threw in the towel and am trying out a t4/t3 combo instead. Question - on ndt 1 grain my cortisol saliva test at 8-12 and 16 are double then they should be , 2 or even 3 times higher at 16.00 after my ndt dose kicks in. Why would it be? I’ve read that low cortisol hinders absorption of ndt but I’ve not read that ndt can cause high cortisol levels. This would explain my feeling of always being ‘on’ and hyper even though my tsh was 11 yesterday on 1 grain. I’m now trying out 50 mcg levo and 5 mcg t3 (combo drug with 25 levo added).

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MiaMam
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SlowDragon profile image
SlowDragonAdministrator

When hypothyroid adrenals try to compensate for lack of thyroid hormones

Your results show you are not on high enough dose

50mcg levothyroxine is only standard starter dose

Retest after 6-8 weeks on 50mcg plus 5mcg T3

Likely to need further increases over coming months

Important to test vitamin D, folate, ferritin and B12 too and maintain at optimal levels

MiaMam profile image
MiaMam in reply toSlowDragon

Thank you. I used to be on 100 mcg t4 only. I am wondering if I should increase to 75 mcg t4 just now to bring my tsh down and keep t3 at 5 mcg. I am definitely hypo and have just overnight put on 2 kg from switching from ndt to t4 and my face is puffed. I am bummed the ndt didn't work out for me but I plan to work on my vit D and other vitamins and try again at some point. What would be the ration of t4 to t3 that one is looking at or does it depend? what are the lab values one is looking for as "optimum" on a t4/t3 combo?

SlowDragon profile image
SlowDragonAdministrator in reply toMiaMam

If you were previously on 100mcg levothyroxine…..yes you could probably increase to 75mcg daily

Retest in 6-8 weeks

NDT doesn’t suit everyone….levothyroxine plus T3 is more flexible

NDT can also increase antibodies in some Hashimoto’s patients

MiaMam profile image
MiaMam in reply toSlowDragon

Aha makes sense. yes my antibodies did go up from 500 to 800. Just one more thing - how does one know you are getting enough t3, i.e. what ratio of t4 to t3 usually works and are the "optimal" labs same as on ndt or ?

Thank you :)

SlowDragon profile image
SlowDragonAdministrator in reply toMiaMam

Trail and error

often takes quite a while of micro adjustments

Some people need 3 small doses T3 per day …… usually 2.5mcg or 5mcg

Others find 2 doses is ok …..usually 5mcg twice day ….but could be higher

Others do best on single dose

Some are fine with Ft3 50% through range

Others need at least 70% through range or higher

humanbean profile image
humanbean

I grain of NDT is actually equivalent to about 65mcg Levothyroxine. The manufacturers of NDT of various kinds usually claim it is equivalent to 100mcg Levo.

The fact that many people on NDT need 3 - 5 grains or even more to have a hope of feeling well suggests the 65mcg equivalence is more likely to be realistic than the 100mcg.

With a TSH of 11 on 1 grain of NDT you are clearly massively under-dosed.

And I agree with SlowDragon . It seems likely that your adrenals are trying to compensate like mad for your lack of thyroid hormones by producing lots of cortisol or possibly even adrenaline, and high levels of both of those can make people feel "hyper".

You might find this thread useful / interesting :

healthunlocked.com/thyroidu...

MiaMam profile image
MiaMam in reply tohumanbean

Thanks and you are right. At 2 grains my labs where good but with t4 just slightly over the minimum and I hadn’t slept in a week, was sweating every night thinking I’m in menopause which stopped when I reduced the dose and I’ve actually lost my periods since March I believe due to ndt. Therefore I was underdosed but could not increase the dose. Yes my iron and vit d could/should be higher but I couldn’t take that hyper feeling anymore. Was going mad. I’ll read all I detail, thank you 🙏

humanbean profile image
humanbean in reply toMiaMam

I struggled to tolerate any product with T4 in when I first started taking thyroid hormones. I just about tolerated T3 only. My biggest problems were :

1) Extremely low iron and ferritin.

2) Over the range saliva cortisol.

I tried both NDT and Levo over a number of years but every attempt was a failure. It wasn't until I had got my iron and ferritin up to optimal - or as close as I could manage - and reduced my cortisol that I found I could tolerate T4 and T3 together.

Your issues might be other things, but getting cortisol and nutrients optimised is vitally important.

MiaMam profile image
MiaMam in reply tohumanbean

Yes you are correct. Both my iron and ferritin are low which I am working on. How did you manage to get yours up? And yes my cortisol is now very high. Did you eventually wind up managing on ndt or a combo of t4/t3. I know we are all different but just curious.

humanbean profile image
humanbean in reply toMiaMam

I raised my iron and ferritin with standard iron supplements of the type that doctors prescribe - Ferrous Fumarate 210mg which I can buy without prescription in pharmacies in the UK. But a lot of people struggle with tolerating iron, and I was no exception. I could only tolerate them with food, and that slowed down my absorption.

But since I raised my iron other products have come on the market that people tolerate better. They are described in these two threads :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

If I was raising my iron now I'd try one of those products before taking more of the ferrous fumarate 210mg.

It's worth taking 500mg or 1000mg of vitamin C with each iron supplement you take because vitamin C helps with iron absorption.

Please note that raising iron and ferritin can take a very long time, particularly in someone like me with a probable genetic issue with iron absorption. It took me nearly two years to raise my ferritin to mid range taking the maximum dose of my iron supplement every day. Then I reduced to a lower dose just to maintain my ferritin where it was. It took another few years to raise my serum iron to a reasonable level. Throughout this whole process I was testing my iron and ferritin regularly with an iron panel, because too much iron is poisonous.

If I had my time over again I would pay for an iron infusion to speed up the process enormously.

...

I lowered my cortisol very slowly with Holy Basil. This product :

dolphinfitness.co.uk/en/swa...

I started on a very high dose and gradually lowered it as time went on. I've been taking it for years. These days I only take 1 or 2 a day.

...

I take separate Levo and T3 tablets now but only because Levo and T3 are cheaper than NDT.

When I discovered that I could tolerate Levo for the first time I started raising my Levo dose (slowly) until my Free T4 went slightly over the range. Then I reduced it back to the level which kept it just in range and added a small dose of T3 which reduced my T4 again as well as raising T3. Then I just kept testing and raising either T4 or T3 to keep them both in range. So if T4 was 45% through the range and T3 was 55% through the range I would raise my T4. If the figures were reversed I would have raised T3 by a small amount.

The way I raised my levels :

I only have 50mcg tablets of Levo. So I would take 2 tablets twice a week and 1 tablet five times a week. When I raised I would take 2 tablets three times a week and 1 tablet four times a week. I kept on raising extremely slowly. I would also take 12.5 mcg T3. I took T3 alone for several years so I have no problems adjusting to it. When unfamiliar with T3 people should start with much lower doses that I did.

MiaMam profile image
MiaMam in reply tohumanbean

Thank you for the detailed explanation. I really appreciate it. Im amazed at the precision and patience that you have done to raise your meds. I need to adopt patience to my strategy for sure.

Would you be able to help me out with the optimum iron and ferritin levels?

I have on stop the thyroid madness the US ranges but they don't apply to my Europe testing. My lab reports are:

iron 18.9 umol/L (9,0-30,4)

ferritin 27,1 ng/ml (4,6-204,0)

Much appreciated :)

MiaMam profile image
MiaMam in reply tohumanbean

"It took me nearly two years to raise my ferritin to mid range taking the maximum dose of my iron supplement every day. Then I reduced to a lower dose just to maintain my ferritin where it was. " May I ask what daily dose where you taking? Ive started with Iron 36 mg from now, which is 180 mg Ferrous Bisglycinate (Ferrochel) and am taking two tablets daily with a vit C. Im wondering wether 2 a day is too much or should I space them apart....

humanbean profile image
humanbean in reply toMiaMam

I was taking ferrous fumarate 210mg (FF).

expresschemist.co.uk/pics/p...

I would take any brand of the above, not just the ones in the picture.

I started taking FF about 10 years ago. I took what was maximum dose at the time, which was 1 tablet, 3 times per day. I took this dose for nearly two years. I never took the tablets together, I would always spread the dosage throughout the day while keeping them away from my thyroid hormones. In order to tolerate the iron pills I had to take them with food.

Once I got my ferritin to mid-range I started looking for my maintenance dose which varied over the following few years, and was anywhere from 1 tablet 2 days per week up to 1 tablet 5 days per week.My serum iron stayed low for years by the way.

Eventually, after about five years of the maintenance dose my levels of both ferritin and serum iron started to rise so I stopped taking iron altogether. I've continued to monitor my iron and ferritin levels with an iron panel 2 or 3 times a year, but they are staying at levels I find acceptable and tolerable to me.

Current info about dosage :

bnf.nice.org.uk/drugs/ferro...

I see from the link above that the maximum dose has been substantially reduced, and there isn't a separate dose for treatment and prophylaxis.

The reason for the big change in recommended dose is most likely because of this :

healthunlocked.com/thyroidu...

...

Having given you my history, I have been off iron now for about three years. But if I could go back in time to 2013 knowing what I know now I would do something completely different!

I would try some lower dose iron tablets first - probably ferrous gluconate or ferrous bisglycinate. If that didn't raise my iron and ferritin very quickly, I would save up and do a private iron infusion to speed the whole thing up. This is one that has branches in a few places and I'm sure there must be other around the country :

theironclinic.com/

People who've had iron infusions seem to come in two varieties - either their iron and ferritin stay quite good or their levels drop like a stone. It is important after iron infusion to keep on testing every two or three months to find out what is happening, and to start taking iron supplements to keep levels up if necessary. Some people have had multiple iron infusions, but I don't know how well that goes.

humanbean profile image
humanbean in reply tohumanbean

I forgot to mention... I would try haem/heme supplements before trying ferrous gluconate or ferrous bisglycinate. helvella has said people can actually take heme supplement and iron salts together because they are absorbed by different routes, but I don't know if anyone on the forum has tried this.

Some recent posts on heme supplements :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

MiaMam profile image
MiaMam in reply tohumanbean

Thank you so much. All great advice. So you were taking 630 FF total a day initially … how far away did you keep them from the thyroid tablets? With 4-5 hour spacing I have a problem with the afternoon dose of thyroid so I’ve started taking it all at once in the morning for now just to see. Although I know twice is recommended. I’m only at 1.25 ndt for now and will need to increase soon so will try to split but need to organize my timings … health can be stressful 😊

humanbean profile image
humanbean in reply toMiaMam

Ferrous fumarate 210mg doesn't contain 210mg iron. Each tablet contained 69mg pure iron. So with three tablets a day I was taking 207mg iron per day.

I would take my thyroid tablets once a day, first thing in the morning, then take my iron pills at my midday meal, evening meal and bedtime snack.

The other alternative is thyroid tablets just before bed, and taking iron pills at breakfast, lunch, and dinner.

If you end up splitting your dose of thyroid hormones in any form it will make things complicated. The gap between iron and thyroid should be four hours.

MiaMam profile image
MiaMam in reply tohumanbean

Ok that makes sense. Thank you. I don’t need the added stress right now of afternoon dose and timing so will try once a morning only for now until things stabilize. I really appreciate all your inputs. Did you/do you drink coffee at all? I believe it’s at least an hour between thyroid tabs and/or iron with coffee as well? Mine is always black but it still has an impact from what I read ?

humanbean profile image
humanbean in reply toMiaMam

I drink coffee just once a day, an hour or more after my thyroid hormones (it depends when I wake up). Probably not ideal, but if the coffee is affecting my hormones then the tests will (hopefully) reflect that and I would alter my dose accordingly.

Brightness14 profile image
Brightness14 in reply tohumanbean

I agree with you regarding that 65mcg of Levo is about 1 grain NDT.

healthkiwi profile image
healthkiwi

1 grain of NDT seems incredibly low dose. I think most people end up on 2 - 3 grains. The usual recommendation is to s l o w l y increase (1/4 grain at a time) up to 2 grains, then hold for 8 weeks to stabilise, see how you feel, then consider whether need further increase. Did you not try that? It's normal whether on T4 or NDT to get some uncomfortable symptomatic periods during this slow increase period, but that shows the body is adjusting. May take 6 months or more to get the dose just right for you.

MiaMam profile image
MiaMam in reply tohealthkiwi

you are right its a low dose but at 2 grains my labs where good but with t4 just slightly over the minimum and I hadn’t slept in a week, was sweating every night thinking I’m in menopause which stopped when I reduced the dose and I’ve actually lost my periods since March I believe due to ndt. Therefore I was underdosed but could not increase the dose. Yes my iron and vit d could/should be higher but I couldn’t take that hyper feeling anymore. Was going mad. Its been 9 months I’ve been trying to get ndt to work for me and therefore started over with 1 grain … I would love it to work for me , just can’t figure out how

healthkiwi profile image
healthkiwi

This below may all be irrelevant if you're now in the process of getting T3T4 combo to work for you. Which again is likely to have ups and downs.

If you are still on Thyroid-S 1 grain, try increasing by 1/4 grain - use pill cutter, craft knife, razor blade. Thyroid-S is hard, splits well. After AT LEAST 2 weeks, try another 1/4 if necessary. Repeat this process but take each increase slowly. Might take a few months. You might find your best dose is 1 1/2 or 1 3/4.

Personally I found I'd feel better after each increase for a few weeks, then would feel rubbish again, which meant time for another small increase. And keep a daily log of symptoms, resting heart rate, body temp when wake up. If you monitor yourself it's easier to see where you improve.

MiaMam profile image
MiaMam in reply tohealthkiwi

Thanks I was just thinking the same. I tried levo today and dislike it immensely! From tomorrow I will try

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