HC - making me feel worse

[Maya_83]

Hi everyone,.

From May year i reluctantly self medicated with hydrocortisone 20mg after saliva test showed really low in all 4 points.

I initially felt well , drowsiness and feeling groggily in the mornings disappeared along with headaches and yawning all day long. I still needed naps here and there, but much better overall. I had to tweak t3 and reduced it from 25 to 6.5mcg . I've been on the 6.5mcg for sometime now.

It's been a couple of months now where I'm feeling unwell again (how I used to feel before) I always crash around 4pm EVERY SINGLE DAY - is the HC not working any longer?

I don't know what my next steps are and feeling down and lost. Any suggestions welcome.

[TiggerMe Ambassador]

Have you re-checked your thyroid levels as dropping from 25mcg to 6.5mcg is a lot and perhaps left you low?

[FallingInReverse in reply to TiggerMe]

Maya_83

Agree. Previous post shows low Free Ts to begin with, and 25 to 6.5 is huge, plus I think you’re on a relatively low dose of Levo along with it? Let us know.

[Maya_83 in reply to TiggerMe]

Hi. Yes I got tested recently

TSH was around 1.49 ( 0.27-4.2)

T4 10. ( 10.5-24.5)

If I increase it to 12mcg I get horrible headache pressures

[TiggerMe Ambassador in reply to Maya_83]

So without fT3 results is doesn't tell us the full story, have you tried increasing your T4? When you increase your T3 do you split the dose?

[caledoniancat]

Have you been splitting your hydrocortisone intake into smaller doses to take during the day? Hydrocortisone has a short halflife, so if you take the full dose in the morning, you likely will crash in the early afternoon. Those who get prescribed, normally split the dose into around 3 doses during the day, this better represents the circadian rythm of natural cortisol.

[greygoose in reply to caledoniancat]

That's not always a good thing to do. Depends if you hope to be able to come off HC at some point. And depends why the cortisol is low. Is it Adrenal Insufficiency or Adrenal Fatigue? If it's Adrenal Fatigue then the adrenals can recover given time, so just taking it before 1 pm - in two doses - to give the adrenals a helping hand during their busiest time, means that the adrenals are forced to work for themselves for the rest of the day. But, if you take HC throughout the day to mimic adrenal action, the adrenals will shut down. And once they've shut down they will not start working again.

This is why it's such a risky thing to self-treat with HC, without full investigation of the whys and wherefores. It's not something I would advise anyone to do.

[Maya_83 in reply to greygoose]

Hi.I was trying the CT3M again it worked for a bit where I felt much better but not still well.. 4 point saliva test showed it wasn't doing anything for my cortisol so tried LDN for a bit.

How do you know the difference between Adrenal insufficiency and Adrenal fatigue?

I was hoping to give my adrenals a boost and come off HC in May.

One of my blood test from morning cortisol showed 164 ( 133-537) so endo started me on 10mg of HC.

[greygoose in reply to Maya_83]

Perhaps you aren't taking enough T3.

How do you know the difference between Adrenal insufficiency and Adrenal fatigue?

That's a very good question. And I'm not 100% sure of the answer. I think with insufficiency the cortisol is very low all day, but with adrenal fatigue it tends to be low in the morning, but high at night. That is because the adrenals struggle all day to make their quota for the day and don't manage until bedtime.

Your morning cortisol was very low but you have no idea what it's doing the rest of the day.

HC doesn't give your adrenals a boost, it gives them a rest. It's like taking thyroid hormones, they don't do anything for your thyroid itself, except to put it to sleep. Neither levo nor HC cure anything, they just replace the hormones your body can no-longer make in sufficient quantities.

[ainslie in reply to greygoose]

Does it not depend on the amount of the total dose as opposed to the timing, JEFFRIES reckons 25mg or less doesn’t suppress normal production, personally I stick to max 15mg split 7.5 at 9am, 5mg at 1pm, 2.5mg 4pm. Hertoghe takes 30mg all at once first thing in the morning, sounds strange, he also reckons as you say none after 12 noon. Others such as Jeffries and Peatfield reckon take it throughout the day small doses. Having studied HC for ever my conclusion is as so many docs disagree on dose and dose timing nobody really knows. My view is only take it if you really really need it, try and find a more natural solution.

[greygoose in reply to ainslie]

I think it's more about the timing than the total dose. I was prescribed HC by a Hertoghe doctor - not Hertoghe himself - and told to take it when I first got up and then around midday - I cannot remember the dose but it was a pretty high dose, more than 15 mg. And I was able to wean myself off it after a couple of years. But it was a long time ago, and I can't remember the precise details of dose and duration. But I do remember what I was told.

[ainslie in reply to greygoose]

Small world , it was Hertoghe who put me on it 15 years ago

[Maya_83 in reply to ainslie]

Have you been on it ever since?

[ainslie in reply to Maya_83]

Yes

[Maya_83 in reply to ainslie]

Wow. How do you feel? I felt since being on HC I'd get alot of cough and colds like nearly every week with a lot of phlegm.. acne has been bad too with alot of weight gain. Currently have a severe ear ache 😞 which I never get ..

[ainslie in reply to Maya_83]

I feel normal, pretty healthy , could do with more energy but who doesn’t, alleg 15 mg doesn’t suppress

[ainslie in reply to greygoose]

Can I ask you you what was your procedure for coming off, I am considering coming off myself

[greygoose in reply to ainslie]

As I say, it was a long time ago and I don't remember the details, but I just gradually - very gradually - reduced the dose until I wasn't taking any at all.

[Hidden in reply to greygoose]

Good point! I read about someone who had been put on HC by a functional doctor and told she could safely go up to 40 mg a day in divided doses. She has had a really hard time coming off it and is still struggling. Unfortunately, some alternative doctors are not very knowledgeable, they just assume all hypothyroid patients have adrenal fatigue and need HC.

[connyankee in reply to Hidden]

The "functional" docs over in the US are nothing but Chiropractors who have bought into a marketing package to bring in more cash. They prey on Thyroid patients and charge $4K/yearly (excludes price of numerous vitamins they tell you to take) for monthly visits which include all of these laptop apps which can provide an "EKG", and all of these other phony "medical" tests. Also, they perform electro-magnetic testing of the e-m circuit surrounding your body using small glass bottles containing minerals, plant products to test for allergies. You hold a bottle in one hand and rigidly extend your other arm in the air. The Doc then pushes against your extended arm. If your arm moves a fraction, they deem you to be allergic to what's in the small bottle that you're holding. Circus act rubbish!

[Maya_83 in reply to caledoniancat]

Hi.Yes. I've been taking 10mg on wake 5mg at 12pm and 5mg at 8.30pm.

I felt good for couple of months. But I still crashed around 4pm needing a nap.

[Hidden in reply to Maya_83]

Lol you never posted your labs so why would you come to the sweeping conclusion you need to reduce your dose?

[ainslie in reply to Maya_83]

8.30 pm seems late , most docs like last dose noon or 4pm

[greygoose]

From experience, I should imagine.

[greygoose]

Well, it does make sense. And if one of the world's greatest hormone experts says that's the way it is, then there must be something in it.

[Incoguto]

If you supress acth for the whole day even if highest concentration happens in the morning, there still is a curve that is being blunted in the afternoon where our cortisol still should be high enough to function. Less ACTH produced, but still some. If HC works for 4 hours then ACTH would not be supressed for half of the day. However, everyone reacts differently, potentially depending on that curve, their thyroid dose they land on and other factors. There are people that wean off and others that absolutely can't and it's a huge issue for them.

[Maya_83]

Ok, are you saying to try 1st dose of 10mg at 12pm or between 10am-12pm? I really struggle to get out of bed also.I've never done well on any t4 it made me more miserable.