Continuing gut problems on NDT, could adrenal i... - Thyroid UK

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Continuing gut problems on NDT, could adrenal issues/hypocortisolism be the problem?

TheDave profile image
20 Replies

Hi, So I posted before about my problems on T4 and on NDT - you can look at my previous posts for details if you want but basically I have pretty bad gut issues at night and the only way I am able to sleep is on an old bed that has a dip in it - not ideal. When I try and sleep on a normal bed I literally have to keep getting up to the loo with diarrhea. Sleeping on the bed I am currently on reverses the issue and I have to keep getting up to burp instead. It has been this way for years now.

A number of things have been suggested for me, namely iron which I am increasing but going to try a different source. I can't take much iron in one go since the night time issues begin to mount up. I have been juggling things around lately, and since I didn't get relief from increasing NDT which was the advice of Dr P way back (and I have gone up to 3 grains in the past), I decided to try T3 only. I've tried all sorts, including diet which helps a bit, but the real thing that seems to upset it is thyroid.

I tried T3 as I mentioned in a previous post, I got on ok with it - one thing that I noticed is I got to sleep a lot quicker - in 1 hour where normally I take a few hours to go to sleep which is clearly absurd. I have been thinking lately that my problem is stress - normally I don't feel too bad but one night (and there have been awful nights in the past) that I was so stressed and it made my problem 10x worse.

Now due to the cost of T3 and non-availability I reverted back to NDT - I can now only handle so little but it just keeps me going and if I cut it out completely my symptoms get worse.. I'm really hoping there's something else that will work but I think there's got to be something big that I'm missing - things are actually severe and are being masked, if I was sleeping on a normal bed I don't know what I'd do and methods for helping with gerd do nothing at all.

I'd like to show my old genova adrenal stress index test results - what do you think of them? I'm considering getting tested again but I don't know what to do about a practioner.

I posted before about lower day time cortisol and higher night time cortisol, but I don't know where I got that from- if the issue is cortisol then I've been trying to help with that and I have been trying to sleep at night and go to bed early 10-11 pm to try and correct, but I frequently wake at 2.00 am and lay awake with gut symptoms till dawn or such - I often get up due to pressure pain in my chest. Also there seems to be a point in the early morning around 5.00ish that I am able to get to sleep a little more easily though I am not quite so sure about that.

Thanks.

Last blood tests (I don't know about the ranges for some of these since they don't include them in the letters?):

4th November 2019

TSH 0.1 (0.30 - 3.18), T4 27.7 (13.1 - 21.3), T3 11 (4.10 - 6.70), Ferritin 69 (30- 400), B12 766 (200 - 900),

12th April 2019

creatinine 48, HbA1c 5.5%, calcium 2.37, ALT 45, T4 33.2, T3 13, TSH 0.01, Iron 14 (9 - 30), Ferritin 91 (30 - 400), Vitamin D 61 (75 - 200), Haemoglobin 153

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TheDave
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20 Replies
SeasideSusie profile image
SeasideSusieRemembering

TheDave

Looking at the results of that Adrenal test, every sample is marked as high and I'm struggling to understand Dr P's comment.

As for your thyroid results, both of those tests show overmedication whatever you were taking, with both FT4 and FT3 well over range.

Your Ferritin was quite low, recommended is half way through range.

Serum iron last April was quite low at 23.81%through range whereas for males it's optimal at about 70%.

Vit D was also quite low, the Vit D Council recommends a level 125nmol and the Vit D Society recommends 100-150nmol.

Your November B12 was OK.

If I were you I'd get an up to date complete thyroid/vitamin panel with either Medichecks (UltraVit test) or Blue Horizon (Plus Eleven test) after being on a stable dose of thyroid hormone replacement for 6-8 weeks then post new results.

You could also repeat your adrenal test with either Genova or with Regenerus who so do cortisol plus DHEA.

TheDave profile image
TheDave

Hi, thank you. I forgot I had a test done recently with Blue Horizon in January -

Albumin 34.2 (35 - 50 g/L)

Ferritin 71.2 (30 - 400 ug/L)

Magnesium 0.84 (0.7 - 1.0 mmol/L)

Sodium 133 (133 - 146 mmol/L)

Calcium 2.39 (2.2 - 2.6 mmol/L)

Corrected Calcium 2.51 (2.12 - 2.50 mmol/L)

Vitamin D (25 OH) 54

Vitamin B12 600

Serum Folate 19.00 (8.83 - 60.8 nmol/L)

Zinc 13.34 (11.1 - 19.5 umol/L)

Selenium 1.31 (0.75 - 1.46 umol/L)

What I don't get is the night time symptoms definitely respond to thyroid- getting to sleep within an hour is significant, on T3 I wasn't burping with meals but on NDT I am. I've lowered the NDT to low doses less than 1/2 a grain and still felt rubbish with bad night time symptoms. But then all the other symptoms get worse, worse brain fog, worse fatigue etc, it helps in the day especially but at night things are worse.

What would I do if I had diarrhea all the time? What would happen to the iron I was taking, I wouldn't be able to hold onto anything? How can I even find a stable state? I've had these symptoms back when my TSH was high and they went away first with T4, then came back with the rest of my symptoms and then T3 and T4 made them go away. What is a stable dose? The gut issue is definitely due to thyroid.

SeasideSusie profile image
SeasideSusieRemembering in reply toTheDave

Did you have any thyroid tests in January?

If so, what thyroid hormone replacement were you on and for how long had you been on that dose? Please post results with reference ranges.

Are you discussing your low albumin, low ferritin, bottom of range sodium, over range calcium with your GP?

TheDave profile image
TheDave in reply toSeasideSusie

No I haven't had any thyroid tests in January, last was November 2019.

I'm on 1/2 grain of Nature Throid NDT, there is no dose that doesn't aggravate the gut issues but coming off it entirely makes things worse (you can get an idea since the T3 alone helped me sleep), I've been on it since the beginning of January

GP doesn't think ferritin is low, endocrinologist knows I am trying to raise it. I haven't seen a doctor since I did the Blue Horizon Nutrition 9.

Endocrinologist knew I wanted to try NDT and T3 and suggested to include 24mcg of T3 split into two (I think), morning and afternoon in addition to NDT I was on - 1 grain, he has always said tests suggest over supplementation. I can't handle 12.5mcg T3 in addition to the 1 grain, let alone in addition to 1/2 a grain. So I tried T3 only, which he said to do if that fails.

I wish Dr P was still around, I've been looking at his old letters. He suggested for me to take Nutrigest - which before aggravated me, but then I had surgery to remove polyps in my duodenum I think, and then I could tolerate the stuff. Its weird because I couldn't handle it at all, but then suddenly I could. Other capsules of HCL aren't the same as nutrigest for me and react more violently, I can't even handle one of those capsules.

SlowDragon profile image
SlowDragonAdministrator

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, or NDT make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

TheDave profile image
TheDave in reply toSlowDragon

Yes

SlowDragon profile image
SlowDragonAdministrator

What supplements are you currently taking?

Your vitamin D is too low.

GP will only prescribe to bring levels to 50nmol.

But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Magnesium on low side

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

Do you take Vitamin K2 mk7. Better You now make bit D mouth spray that includes K2 mk7

betterbones.com/bone-nutrit...

intechopen.com/books/cell-s...

TheDave profile image
TheDave in reply toSlowDragon

Hi, I'm taking Selenium 200mg

Vitamin D 2000iu

Vega Iron Bisglycinate 50mg

Solgar Chelated Magnesium 400mg x 2 with meals

Swiss BioEnergetics Co-Enzyme Q10 300mg

Solgar Vitamin B Complex "100" x 1

SlowDragon profile image
SlowDragonAdministrator in reply toTheDave

Magnesium needs to be four hours away from levothyroxine

Vitamin D, many of us need more than 2000iu, even as maintenance dose.

Personally I found I needed 5000-6000iu to increase levels and 3000iu daily as maintenance dose (plus plenty of sunshine)

Remember to stop taking vitamin B complex a week before any blood tests as biotin in vitamin B complex can falsely affect test results

TheDave profile image
TheDave in reply toSlowDragon

Thanks, I will try increasing the vitamin D and get the spray version of it as you suggested.

mandyjane profile image
mandyjane

Have you tried a food diary to see if this is down to particular foods. If it is happening all the time is there something you eat everyday that could be affecting you> Is there something you crave most days? I have found taking digestive enzymes, the brand 'NOW' really helpful for indigestion and I know this sounds strange but have you considered showing you tummy some regular kindness. You can talk to it and rub cream, massage oil into it to show that part of your body you care about it.

TheDave profile image
TheDave in reply tomandyjane

Carbs/bread tend to aggravate things. I mean I crave bread if I cut it out, I tried enzymes ,and I tried Nutrigest that contains digestive enzymes but neither seemed to do anything for me.

I find I get easily stressed by things, so any sort of quiet meditative activity of some sort is probably good, it's just annoying how sensitive things are.

mandyjane profile image
mandyjane in reply toTheDave

It might be the pesticides in our food. Wheat is sprayed just before harvesting so stuff with wheat in can cause probs. Linseed might help, good for tummys.Wish I had better to offer.

Teras profile image
Teras

In the last few months, I found out I have a genetic issue with converting T4 to T3. (23andme raw data fed through Promethease app). Still, NDT works okay for me. I just have to not to overdose. Once or twice a week, I cut my 2 grain dose back by a half grain to deal with a build up of T4, which gives me hyper/hypo symptoms at the same time. This seems to work for me. I'm keeping track of what I do on a calendar so I can get a long term picture of what's working.

As far as your gut goes, I've had gut problems since the 70s. I think somehow I picked up a nasty bug that I never got over. Someone on on a candida group mentioned the efficacy of oregano oil in treating gut issues. I taking it, and it's the best remedy I've tried so far--Garden of Life organic oil. I take 6 drops a day. There's 200 doses per $13 bottle. It has a strong taste, but it seems to work very well. No more white tongue.

I hope you feel better soon.

Annkapp profile image
Annkapp in reply toTeras

How long did you take organic oil before you started seeing results?

What kind of digestive issues were you experiencing?

Teras profile image
Teras in reply toAnnkapp

Immediately

Teras profile image
Teras in reply toAnnkapp

I had diarrhea and discomfort. I woke in the night from the pain.

TheDave profile image
TheDave in reply toTeras

I did the regenerus DIO2 test but haven't heard back yet and its been a few weeks now. Will probably do a DIO1 test next, the age old problem with me is I can not stay stable on a dose, it starts off fine and then I begin to feel worse, have to cut- occaisonally come back on a higher dose and experience relief, then it stops working again.

I was tested for candida a few years ago when I first saw Dr P, but I'll look into the oregano oil, I'm going to have to change my diet too - cutting grains and drinking green smoothies seemed to help a bit but then in about a month I began feeling like rubbish. In the earliest days I swore that yoghurt helped a bit but then, and I had a test that showed I had no Lacto Bacillus.

Teras profile image
Teras

I didn't change my diet at all. Just took the oregano oil.

Catseyes235 profile image
Catseyes235

Thyroid issues aside can I ask what your diet is like? People are very good at discussing results and meds but apart from some advocating gluten free/ dairy free it’s not really mentioned much. Nor is it mentioned much if at all by the medical profession who would stick you on antacids, anti diarrhoea meds rather than check out what you eat. Just a thought!

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