Secondary adrenal insufficiency and hypothyroid... - Thyroid UK

Thyroid UK

117,124 members135,934 posts

Secondary adrenal insufficiency and hypothyroid looking to increase thyroid dose smoothly and safely

RB10
RB10

My dad is 72 years old and struggling with secondary adrenal insufficiency and hypothyroidism. About 25 years ago, he had a pituitary tumour and came out of hospital with only a partially functioning pituitary. He's taken coritsol ever since, and added Levothyroxine (T4) a few years later, and then also testosterone.

Being on T4 only (Levo) left him extremely fatigued and his thyroid tests all came back low out of range. So his endo added Slow Release T3. First he had to increase his daily cortisol from 15mg to 25mg to support the extra thyroid meds, and then the T3 helped.

His highest T3 dose was 50mcg around 4 years ago, and it made his blood tests look good, including his cholesterol. He felt better too! He lowered his T3 dose after that though, because he was getting this fast pounding heartbeat at 2am (pulse of 110 bpm) that would last for a couple of hours. We thought he must be hyperthyroid on too much T3.

Now he takes 27.5 mcg Slow Release T3 (made at a compounding pharmacy) and 75mcg Levo along with his daily Sustained Release 25mg cortisol each morning. He only doses once a day due to the slow / sustained release compounding. (His cortisol saliva test from 2 years ago still shows some activity around 2am too, so maybe it's still making some cortisol?)

Here's the problem though: he's hypothyroid again, according to his blood test results for the last 2 years: low T3, low T4, very high cholesterol, signs of kidney disease, etc. He has the symptoms again too: very tired, depressed, easily stressed and I think he has some brain fog.

He needs to increase his thyroid doses. His endo gave him scripts to add 25mcg to the T4 (from 75 to 100) and 7.5 to the T3 (27.5 to 35), but about 10-14 days in, he got hyperthyroid: high pulse and bursting with "heebee jeebees" and a twitchy crazy energy. His temperature was finally up a little to 98.4 (usually 96.9) but he felt awful!

After a rough month, he's now back to his original doses and he needs to try some kind of increase again.

What is the best way to increase his thyroid dose - T4 or T3? how much of each? how long before the next increase?

Any idea what causes the high pulse and pounding heartbeat? I think that's also still going on.

Other possibly unrelated things going on:

- He has a very hard time going to sleep each night and getting enough sleep.

- When he works out (weight training), it takes him 2-3 days to recover.

- He gets really bad headaches that last a few days, mostly when something stressful is about to happen or just happened.

- he has a hard time sleeping before 2am.

Thanks in advance for your help!

Reba.

20 Replies
SlowDragon
SlowDragonAdministrator

Has he had vitamin D, folate, B12 and ferritin tested.

Very common for these to be too low due to reduced gut function and/or low stomach acid when hypo

Many of us need to supplement to maintain good levels

Does he take any supplements? If so what.

Add results and ranges if you have them, or come back with new post once tested

Poor sleep can be low vitamin D and or B vitamins

drgominak.com/sleep/vitamin...

But can also be low T3

RB10
RB10 in reply to SlowDragon

HI SlowDragon,

Thanks for the reply! Yes, he's been tested recently and his vit D and folate are low, but I'm specifically looking for recommendations on how to increase his T3 or T4: how much, how long to wait, which one first, etc.

Any thoughts?

Also, test results below.

R.

He should not have increased both T4 and T3 at the same time. That's too much, and a shock to the system. It's one or the other. But, without seeing his labs, impossible to tell you which one first. But, I would guess the T3, because from what you say, he has a conversion problem.

And, he should not be working out if his T3 is low. For weight training, you need optimal FT3. Just gentle walking or swimming until it's optimal. :)

RB10
RB10 in reply to greygoose

Hi Greygoose,

Thanks for the reply. I knew low cortisol could impact his workout, wasn't clear that low T3 also does that.

What amount of T3 or T4 do you think he should increase by?

How long to wait before another increase? The body needs a little time to adjust to the new dose, is that right?

His latest blood test results (last month) are below.

R.

greygoose
greygoose in reply to RB10

The rules are:

T4 : increase by 25 mcg every six weeks after a retest.

T3 : increase by 1/4 tablet (5 mcg or 6.25 mcg) every two weeks.

Any more that that will stress the body.

Low T3 most certainly does impact a workout. It impacts just about everything!

RB10
RB10 in reply to greygoose

Thank you grey, good to know the rules! Will try that.

greygoose
greygoose in reply to RB10

Your welcome. :)

shaws
shawsAdministrator

First of all I am sorry you Dad has hypo. One of our Advisers (now deceased) - an expert on T3 stated that time-release T3 was a poor substitute for ordinary T3. The purpose of a dose of T3 is to enable it to saturate all of our T3 receptors and we have millions and recommended one daily dose per day This allows the T3 to be absorbed into our T3 receptor cells and then it begins to send out 'waves' which can last between one to three days for that one dose.

When we exercise and not on an optimum dose, it lowers our T3 as it is the 'energy' provider. T4 is inactive and has to convert to T3. Some of us don't convert efficiently.

He needs a Full Thyroid Function Test - at the earliest possible (fasting ) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take it afterwards.

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

RB10
RB10 in reply to shaws

Hi Shaws,

He just had a blood test, results below.

Free T3: 210 pg/dL (range 230-420)

Total T3: 70 ng/dL (97-219)

Free T4: .68 ng/dL (.82 - 1.77)

Total T4: 3.3 mcg/dL (4.5 - 12)

TSH: .47 (keep in mind this doesn't mean much because he has a pituitary injury)

Folate: 16.8 (>18)

Vit D: 24 (30-100)

He is supplementing Folate & Vit D again but they have been normal before with same sleep/ energy problems.

Ferritin: 223 (30-400)

Iron: in range

B12: 1030 (200-1100) (he is taking B supplements)

Shaws: Interesting thoughts on T3, thank you. What are the thoughts about what time of day to take that one dose of ordinary T3?

I have read that the adrenals need the T3 around 4am when they start trying to make cortisol.

Thanks for the quick initial replies. Sorry I didn't include actual test results, but yes, they are all low out of range:

Free T3: 210 pg/dL (range 230-420)

Total T3: 70 ng/dL (97-219)

Free T4: .68 ng/dL (.82 - 1.77)

Total T4: 3.3 mcg/dL (4.5 - 12)

TSH: 47 (keep in mind this doesn't mean much because he has a pituitary injury)

Folate: 16.8 (>18)

Vit D: 24 (30-100)

He is supplementing Folate & Vit D again but they have been normal before with same sleep/ energy problems.

Ferritin: 223 (30-400)

B12: 1030 (200-1100) (he is taking B supplements)

Shaws: Interesting thoughts on T3, thank you. What are the thoughts about what time of day to take that one dose of ordinary T3? I have read that the adrenals need the T3 around 4am when they start trying to make cortisol.

Greygoose: Thanks. I knew low cortisol could impact his workout, wasn't clear that low T3 also does that. What amount of T3 or T4 do you think he should increase by? How long to wait before another increase? The body needs a little time to adjust to the new dose, is that right?

Thanks SlowDragon, I will check on his other supplements too.

R.

RB10
RB10 in reply to RB10

Oops, TSH should be .47 not 47.

If you have secondary adrenal insufficiency

It is a must to take hydrocortisone before

Taking levo

Taking levo without steroids could cause

Problems.

Hope that helps

If that is not possible

I would just take a kelp supplement

Instead of levo

RB10
RB10 in reply to Courtlea

Hi Courtlea,

Yes, he does take his 25mg cortisol when taking his Levo and T3 at 8am. Just wondering about the timing for T3 in particular, since it is supposed to peak from 2-4am, if I remember right. Cortisol peaks after that at 8am, and I've read somewhere that it needs the T3.

Are you suggesting he can take a kelp supplement instead of Levo?

R.

Courtlea
Courtlea in reply to RB10

Hi R

Well, kelp has natural forms of t3 and t4

So yes it probably could be an alternative

But I don't know in his situation

As it would have to be medically monitered

Well, I've heard from doctors that pituitary tumors can grow back

If he has secondary adrenal insufficiency and

Central hypothyroidism ,

It is probably his pituitary again

I would ask for an mri

And see if another surgery may be needed

Until then , see if selenium helps his thyroid

But his medication seems to be good

RB10
RB10 in reply to Courtlea

He's had an MRI recently, no return of the tumour.

His thyroid results are all low, and he feels anxious, fatigued, etc. so I'm pretty sure his medication is not all good :-)

Thanks for your thoughts though.

R.

Courtlea
Courtlea in reply to RB10

Hi R

Yes I realize his medications might not be perfect

But your dad has something called

CENTRAL HYPOTHYROIDISM

it is a rare condition related to the pituitary

Not the thyroid

If you would like to learn more about it

Please research

Dr Lewis Blevins

An expert in this condition

He suggests

Getting the t4 level in the

Mid-normal to upper-normal range

By upping the levo and

Potentially t3 so it is consistant

RB10
RB10 in reply to Courtlea

Yes, we know that already Courtlea. He has damage to the pituitary, not thyroid, but it impacts the thyroid. And yes, we are trying to increase his T3 or T4 in order to get his T4 and T3 in range, that's why I posted this question.

I have Addison’s disease and hypothyroid. I cannot take Levo at all. I went into adrenal crisis due to taking Levo and stopped taking it. I am currently taking Armour Thyroid, 30 mg 3days a week ( I started with a smaller dosage and have increased to the above dosage within a years time) and hydrocortisone, 25 mg daily. I have always worked out or ran but had to stop for a while. I still exercise but have slowed down a good amount due to being really tired and dizzy some days. I can tell when I have low cortisol and have learned how to manage my adrenal insufficiency. But exercising and staying strong and fit will always be important to me in addition to eating healthy. Hope this helps.

RB10
RB10 in reply to Runner95

Hi Runner,

Glad to hear you're managing so well! Yes, my dad is the same way, it's a big part of his personality and worth to be able to be strong and fit. It is hard for him though.

What did the Levo do to you that made you stop it?

And what are the signs that you're low cortisol? He's getting pretty good at recognizing his signs, but sometimes the headache will come on suddenly and it takes awhile to recover, even if he takes more cortisol right away.

Also, did you ever get the pounding high heartbeat he's having? I'm still not clear if that's to do with T3 (hyperthyroid?) or something with cortisol.

Thanks for sharing,

R.

You may also like...