How long until I can re-introduce thyroid meds?

[Msmustang1981]

Hello everyone. After a long 27 months of my health getting worse and becoming deathly ill after ingesting thyroid meds, I am finally being treated with hydrocortisone for adrenal insufficiency. I am in the United States and all of the Endocrinologist’s I’ve seen really have no clue how to treat adrenal insufficiency and/or monitor it once on medication. They certainly have no clue about reintroducing thyroid meds. Can someone tell me when it’s a good time to start again after beginning hydrocortisone? Do you start on a low dose of thyroid medicine and have to work up again? Thank you in advance for any advice!

[greygoose]

I started HydroCortisone when I was taking levo + T3. I didn't stop the hormone at all. And, a week or so later, I changed from levo to Armour, on an equivalent dose to the dose I'd been taking on the combo. It worked for me.

How long have you been on HC? How are you taking it?

[Msmustang1981 in reply to greygoose]

Thank you for your answer! I appreciate your time. Today is day #1 on the hydrocortisone. I have been told to take 10mg upon waking, 5mg early afternoon, and if I feel like it is necessary to take 2.5mg no later than 6pm. These are just “guesses” by my doctor. I haven’t found one yet who really knows and that’s after visiting Mayo Clinic and Cleveland Clinic as well. Lately my thyroid medicine has been causing me adrenal crashes and I’ve been going back and forth to the hospital verging on adrenal crisis. I felt 50% better today just after the first hydrocortisone dose, so I’m really hopeful this could help me.

[greygoose in reply to Msmustang1981]

Yes, it's good stuff in some ways, not so good in others! If I might make a suggestion, I wouldn't take HC after 1 pm, if I were you. Not for adrenal fatigue, and not if you hope to come off it some day. I came off it after about two years, but I took one dose when I first got up, then one at 1 pm.

[Msmustang1981 in reply to greygoose]

These are the tips I need - thank you! May I ask what dosage you took upon waking and at 1pm? And how did you settle on that dosage? I’m hoping I can reintroduce thyroid meds sooner rather than later as well.

[greygoose in reply to Msmustang1981]

I can't remember, really, it was about ten years ago. But, it was a lot more than you're taking. About 40 mg in total, I think. And the doctor gave me extra on my prescription so that I could increase my dose if I felt I needed it.

[Msmustang1981 in reply to greygoose]

Oh wow, that is a large dose. Was it for adrenal insufficiency as well? Did you notice any side effects from Hydrocortisone? I’m sensitive to medicine so I worry what I might encounter along with the good benefits. Thanks again for your help! It’s so hard to find people who know anything about it.

[greygoose in reply to Msmustang1981]

It was for adrenal fatigue, the doctor said. Have you been diagnosed with Addison's? Because that's what people usually mean when they say adrenal insufficiency.

The main side-effect - perhaps the only one, actually - was water retention. I blew up like a balloon!

[Msmustang1981 in reply to greygoose]

Right now I’m being told secondary adrenal insufficiency only because we can’t find any lab, office, or hospital to give me the ACTH stim test. It’s remarkable the obstacles I’m encountering. It’s definitely an area of medicine that isn’t widely practiced. Imaging of adrenals and pituitary were normal thankfully.

[greygoose in reply to Msmustang1981]

Goodness me! Where do you live? That's terrible!

So, you don't have Central hypo, then?

[Msmustang1981 in reply to greygoose]

I live near Orlando, FL. It’s a very sad situation. I’ve traveled around the country seeing Endocrinologist’s and specialists, functional medicine doctors, and then went to Cleveland Clinic and Mayo Clinic. Not one group could help me or send me for the right testing - they all said they didn’t believe in adrenal problems. I’ve suffered a long time. Finally I found an endocrinologist here who ordered the ACTH stim test and Cushings test with Dexamethasone, but they don’t have their own lab to perform it. I was able to get the Cushings test done at a lab, but when I called all the local hospitals and lab facilities to schedule an ACTH Stim test, you’d think I had 3 heads when I asked about it!

I don’t believe I have Central hypothyroidism - I’ve always been told it’s just regular hypothyroidism. Negative antibodies, but a lot of nodules. I’ve had it about 8 or 9 years now - runs in my family. I used to take Synthroid and lived a happy life on it until I started getting very sick with this 27 months ago after I went through a traumatic and stressful event. Since then I’ve tried all different brands, generics, compounds, NDTs, dosages, T4 only, T4/T3, T3 alone - you name it! It just about all kills me now and I wind up in a crisis.

[greygoose in reply to Msmustang1981]

I thought the US was so much more advanced than the rest of us with medical treatment. I'm surprised to learn it's not true. Mind you, I've never tried to get an ACTH test here in France, so for all I know, it might be just as bad. I was just diagnosed with adrenal fatigue with a blood test, but as the doctor in question had it himself, he knew what he was looking at. I was probably lucky. How can an endo say he doesn't believe in adrenal problems! Any part of a body can develop problems. It's ludicrous to deny that.

I was just thinking that if you had Central hypo, then it could be a pituitary problem causing the adrenal problem. Pituitary problems don't always show up on scans.

[Msmustang1981 in reply to greygoose]

It is ludicrous. I’ve been let down and neglected by the medical community here. Endocrinologist’s here know mostly about diabetes, a little about thyroid, and nothing else!

I don’t know much about Central hypothyroidism but without medication, my TSH stays around 7 with bottom range free T3 and free T4. Am I correct in saying that’s not central?

[greygoose in reply to Msmustang1981]

I think that's true of most countries. It's very difficult to find an endo that knows about thyroid anywhere in the world. You only have to read on here to find that out. They're all diabetes specialists!

If your Frees are both bottom of the range one would expect a TSH higher than 7. You would never have got diagnosed at all in the UK! There, they like the TSH to go over 10 before diagnosing. So, could be that the pituitary is a bit sluggish.

Normally, Central Hypo would be Frees bottom of the range or under, and TSH low or low in-range. But, 7 just doesn't sound right for 'regular' hypo. But, if it's difficult to find a doctor that knows anything about 'normal' hypo, it's almost impossible for Central hypo. Most of them have never even heard of it.

Must go to bed now, it's quarter past four in the morning, here in France! Talk tomorrow, perhaps.

[Msmustang1981 in reply to greygoose]

Sorry to have kept you up so late! Central hypothyroidism never crossed my mind, but I will bring it up at my next appointment on July 16th. Maybe that explains my troubles lately. Is treatment the same? Regardless, I still can’t take the thyroid medicine without some form of crisis, but maybe with hydrocortisone support I’ll be able to. Since they performed a brain MRI focusing on pituitary and hypothalamus, do you know any other tests I should ask for?

[greygoose in reply to Msmustang1981]

It was too hot to sleep, anyway. But, when it cooled down, I drifted off blissfully, and had a lovely - but short - sleep.

Treatment for Central hypo is the same, yes, as far as the thyroid is concerned. But, the point with a pituitary problem is that it doesn't just affect the TSH. It affects the adrenal, and all the other hormones that the pituitary makes. For example, you could have low HGH (Human Growth Hormone), and that will really make you feel bad. I had that, even though I didn't have a pituitary problem. It's horrible.

So you do need your ATCH (pituitary hormone) tested, and your HGH, and all the others. There is a test for the hypothalamus - TRH (Thyrotropin Releasing Hormone) - but I don't think anybody does that anymore, as it's rather risky, I believe, not just a simple blood test.

[SlowDragon Administrator in reply to Msmustang1981]

Are you aware of Dr Lam

drlamcoaching.com/adrenal-f...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

When were vitamin levels last tested

What vitamin supplements are you currently taking

Are you on, or ever tried strictly gluten free diet

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

thyroid.org/thyroid-nodules/

Hashimoto’s is associated with an increased risk of thyroid nodules.

[Msmustang1981 in reply to SlowDragon]

Thanks for your reply. I have read several of Dr. Lam’s papers. It was reading his work that encouraged me to see a functional medicine doctor, but he could not figure out my problem. He ran many tests and tried me on many supplements, vitamins, and even gluten free, but nothing helped. He was the one who ran my first 24 hr saliva test as well. It came back showing low dips throughout the day and he diagnosed stage 2 adrenal fatigue with HPA axis dysfunction. He thought vitamins would solve it, but ultimately couldn’t figure out my problem as I kept getting worse the more he tried to push things into my body. No one can understand why I get so terribly ill - toxic really - after ingesting thyroid hormone. Here are my symptoms after ingesting thyroid hormone. It always starts around day 3 and then I need to stop the meds and let them clear. I have been to the hospital many times on the verge of what is now thought to be an adrenal crisis.

Symptoms:

Excessive urination

Pain and pressure in head

Jaw pain and tightness

Right Ear pain/crackling

Facial pain

Right Leg pain and swelling

Bone pain

Nausea

Diarrhea

Extreme fatigue

Loss of appetite/inability to eat/gastroparesis

Extreme nausea after eating

Mood disturbance/sadness/depression

Anxiety

Palpitations

Itchy skin

Feeling cold/chills

Brain fog

Inability to handle any stress

Acne

Gerd

Horrible mornings with improvement in the afternoons and evening

My latest labs while trying to force in 1/2 grain of NDT for the last 5 months are:

TSH 2.43. (.4-4.5)

Free T4 .9 (.8-1.8)

Free T3 2.8 (2.3-4.2)

TPO and TG antibodies <1

Ferritin 55 (16-154)

Folate 10.6 (>5.4)

B12 707 (200-1100)

Vitamin D 33 (>30 optimal)

DHEA 52 (23-266) On the 24 hour saliva test, however, DHEA is below range.

If I don’t take any thyroid meds my TSH went up to 7 and my frees were at the bottom of the range and I just felt awful. This was after successfully taking thyroid meds for 8+ years. Popped a pill every day and felt great and then I had a traumatic and stressful event and suddenly have felt super sick since and can’t take thyroid meds without going into a near crisis. Emergency room usually just gives me nausea meds and fluids and sends me on my way.

I have had problems with my Ferritin and iron running low and iron supplements made me sick, so I’ve been focusing on eating more iron rich food and taking beet root supplement. If I stop the beet root the ferritin drops very quickly. Again, the more vitamins or any medications I try to push in, the worse I get. I currently take beet root, vitamin c, NDT thyroid medicine when I can, and if the anxiety and palpitations get really bad, I have propranolol to take. As of yesterday, I also started hydrocortisone but couldn’t sleep at all last night so I need to play with that today. Every few days now I need to take some NDT to hold it all together but can’t take too much or I have a crash. Without it though I also get very shaky and anxious.

I know my story is a long one and I really appreciate your help!

[Marz]

We have a 24 Hour Saliva Test in the UK for Adrenal Testing. A test done privately through the post - would that be a possibility for you ?

[Msmustang1981 in reply to Marz]

I’ve had a few actually. Most showed low cortisol except for when I was taking NDT - then I had low morning and high rest of the day. When I stopped the NDT, it all went back to low.

Morning 8AM blood cortisol was at the lowest end of the range with low ACTH as well.

[Marz in reply to Msmustang1981]

Yes adrenals love T3 and VitC ..

[waveylines]

I had that test done in the uk done privately.....& was tood all was well. sadly I was with an endo who knew nothing about hypothyroidism & effective treatment & was focuse on raiding my TSH into range despite being on a combination treatment so we parted company shortly after.

I was told the saliva test is more reliable as its more sensitive. Maybe thats the way to go?

I really feel for you. Finding a knowledgeable specialist on thyroid or adrenal is like gold dust. Sad to hear America is no better.

[Jamima]

Hello Msmustang - your results are quite similar to mine but I’m not medicated yet. I’m waiting on a phone consult next Tuesday with private endo who, I hope, will throw some light on things. I’ve got low cortisol and low dhea, low everything really and low would pretty much describe how I’m feeling. Like Grey Goose has mentioned to you, I’m beginning to suspect I’m central hypo. If you haven’t already, please read Dr Myhill’s site, she recommends a low dose HC protocol which might work for you, without side effects. Good luck.

[Msmustang1981 in reply to Jamima]

Sorry to hear you are feeling poorly as well. It’s just awful. Are you struggling trying to take thyroid hormone as well?

[Jamima in reply to Msmustang1981]

I don’t take any meds, just starting out on this ‘journey’. I’ve had warning signs of low cortisol for around 3 years now, ignored them and continued living at a ridiculously stressful pace. 2 weeks ago by body decided enough was enough, I just crashed and not recovered this time, the body is clever that way. I’ve since had a thyroid check come back with low everything so as well as the low cortisol, it’s time to get a diagnosis, I can’t live a half life.

[Msmustang1981 in reply to Jamima]

I’m with you on that one. I’m not living life at all - just existing - and it’s awful. Best of luck to you! I hope your journey goes well.

[Jamima in reply to Msmustang1981]

And to you. Please read Dr Myhill, she’s got some great advice.