Gut Trusting

[Earth Mother 2 Angels]

((((((HUGS TO ALL))))))

After 6 days of Jon running a low grade fever of 99.1, with fluctuations down to 98.7 and up to 100.3 a few times, we have decided to stop Synthroid for Jonathan.

Last week, Jon battled insomnia for 3 days, requiring Ativan on 2 of those days. He didn't sleep more than he should, but he was generally groggy, wanting to go back to sleep, just unable to do so.

His heart rate has been elevated in the 80's and 90's, where his normal rate is upper 60's to low 70's.

His SATS are excellent.

He doesn't seem to be ill in any identifiable way. He frowned quite a lot, but we were unsure if he had a headache or was experiencing pain in his hips.

We had some warm, humid weather for a couple of days, but our house wasn't overheated, and was cooled with just fans.

But Jon was warm. Too warm. With hypothyroid, he runs a lower normal temp of 97.6 or less. So 99.6 is a fever for him.

We're able to bring his temp down from 100 to 99, washing his body with tepid water, then leaving a thin sheet draped over him.

His doc doesn't think Jon has an infection, and he suspects that Jon is reacting to the hot weather.

Well, our weather has been cooler and quite lovely these past 2 days, but Jon is still in the 99 range.

Today, he slept for 15 hours! I had to open his shutters and make noise to stir him to wake on his own. And that was not Ativan induced.

Jon has been on a very small dose of Synthroid for 3 weeks, when it was started in the hospital. That's just about enough time for some affect to appear, as apparently it takes time for it to do its stuff.

Side effects of Synthroid include: fever, sensitivity to heat, insomnia, muscle and joint aching (which he has had during the past 2 weeks), headaches, and elevated heart rate.

Choose a symptom: Jon has it.

Beyond this, Synthroid affects his Dilantin level, and Dilantin affects his Synthroid level. And our doc doesn't feel that Jon needs a blood draw until next week.

Of course, I still don't have the results of the blood draw on July 5, the one that sent us racing to the ER for a blood transfusion that never occurred.

I called the doc's office this morning and requested a copy of his entire work up sent to me, which I have to do every time his blood is drawn. Tiresome and tedious.

Is Synthroid affecting Jon adversely? What do you think?

My gut says: Yes.

Those tears I shed when he started it in the hospital were partially guilt laden for not trying it sooner, but they were also very fearful tears that he might not tolerate the Synthroid, as I had suspected for the last 7 years.

Those here, who have known me for lo these many years, know that I have two mantras:

1. Trust Your Gut.

2. Look at the Drugs First as the Cause.

Now, Against Medical Advice, the dreaded AMA, we stopped Jon's Synthroid this morning. We will give him a week to note whether his temp and heart rate come down, whether he sleeps better (not that he sleeps well anyway ... insomnia is a side effect of hypothyroid, the drugs that treat it, and Dilantin ... so he's at war with all of that trying to get to sleep), and a reduction in aches/pains/frowning.

If he doesn't improve, then we have to look at other potential causes for his symptoms.

Which devil do I fight? Do I treat the hypothyroidism with Synthroid, which might be making him miserable, or do I leave it untreated, which also makes him miserable? Both have dire outcomes physiologically for Jon.

Right now, I'm trusting my gut, which says stop what is probably making him miserable at this moment and over the past week. Watch for changes. We can always go back on the Synthroid.

Praying that my gut knows what it's talking about!

Love & Light,

Rose

[andromeda31]

Hi Rose,

I agree with trusting your gut....we know our kids so well that even though we may not be able to explain why, we know when something is wrong! I think trying a week off and seeing if there is improvement is reasonable. Is it a med that needs weaning or can you just go cold turkey, or is it so small a dose it doesn't matter? praying for improvement for Jon!

Lisa O.

[mg12061]

Wow so sorry. I too go with my gut often. I have to since Kathleen doesn't communicate a lot to us about how she feels. Kathleen has hypothyroid also and takes Levothyroxine 100 mcg, doyou know if this has similar side affects? There are others we've used also for the hypothyroid. Is it possible the levels are off? Praying you get this figured out.
Mary Grace

[Donna Thomson]

Dear Rose, I have hypothyroidism too and luckily, I have no side effects from the synthroid. But levothyroxine is a good to investigate. If the side effects are the same, I think it's worth trusting your gut and weaning off the synthroid. If he gets better, you have your answer. I would just go with whatever scenario Jon seems better with - and hang the blood work. Good luck, my dear friend.

[Earth Mother 2 Angels]

((((((Lisa, Mary Grace, & Donna))))))

Thank you for your thoughts and prayers.

I haven't read anything indicating that weaning is needed with Synthroid. Jon was taking the lowest dose of 0.025 mcg, and he'd been on it for 3 weeks. I know the docs will say that it's unlikely that it caused Jon's symptoms, but what other explanation is there for them?

Levothyroxine is Synthroid. Here's the link to Drug Info:

http://www.nlm.nih.gov/medlineplus/d...s/a682461.html

So far, the frowning has stopped. His temp has been 98.6 to 98.7 all day. Heart rate is about 84, not going up to 90. Less pain expressed when we moved him in his bed this morning.

Whether that is coincidental, or it is a result of removing the Synthroid, I have no idea. I'm just grateful that he's not in discomfort.

I found this extra information about Synthroid at Drugs.com:

Before taking Synthroid

Since thyroid hormone occurs naturally in the body, almost anyone can take Synthroid. However, you may not be able to take this medication if you have certain medical conditions.

To make sure you can safely take Synthroid, tell your doctor if you have:

a thyroid disorder called thyrotoxicosis;

heart disease, coronary artery disease, or a history of blood clots;

diabetes;

anemia (lack of red blood cells);

problems with your pituitary or adrenal glands;

an untreated or uncontrolled adrenal gland disorder; or

if you have recently had a heart attack, or are having any symptoms of a heart attack (chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling).

****************

Jon has chronic anemia. Perhaps the Synthroid was a factor in his low hemoglobin, which caused us to rush to ER.

Oh, and you can't take iron supplements with Synthroid. Yet, everyone at the hospital was telling me to give Jon iron supplements. And there is iron in his formula.

Why should I not scream right now?

No wonder my gut has been growling. So frustrating!!!

Now to compose a detailed email to Jon's doctor. Heavy sigh. I'm sure that he will disagree with me. They all do.

Love & Light,

Rose

[Donna Thomson]

Your gut is loud and clear, Rose. How many times are you right about Jon when you feel this strongly on an intuitive basis, combined with tons of your research and reading? Sorry I misspoke about weaning, I have no idea about it since I have been on the stuff since my early 20's. I had serious depression back then and after years of in and out of hospital, they discovered that my thyroid was not functioning - suddenly with synthroid, I was well! So I just take my pill every day and there's never been a problem since. But of course that is one story and as we know with our guys, they are not typical and all drugs will have different effects on them. I know you are right in your wisdom caring for Jon. Good luck with the docs and I'm sure you will but do tell them about your strong gut instinct - good doctors pay attention to gut instinct. Hugs, xox

[Earth Mother 2 Angels]

((((((HUGS TO ALL))))))

Today, Jon's temp is still 98.7, and he's awake, alert, talkative, smiling, laughing, and in tip top shape.

What's the difference? No Synthroid for 3 days. It's really astonishingly obvious.

While watching an Elton John concert DVD this afternoon, I took Jon's hand and began dancing. Jon grinned and moved his arm with mine. When I wearied a little during the instrumental solos, I encouraged him to play along, "Jon, Air Guitar!" Jon launched into his air guitar. Then it was drums, horns, and pretty soon we were playing piano with Elton. Jon was giggling, and my heart was soaring.

This evening, I sent a very detailed and lengthy email to Jon's doctor explaining every reason why I feel that Synthroid isn't safe for Jon to take. I cc'd the email to Jon's nurse and nurse practitioner, as well as the hospital nutritionist.

We agreed to "try it," and we tried it. In only 3 weeks, on the smallest possible dose, Jon experienced negative effects from Synthroid. To Jim and me, who know Jon so very well, the negative effects were quite apparent, and his rebound now that he is off of Synthroid is undeniable.

Synthroid messes with: Jon's red blood cells, exacerbating his anemia; Dilantin; Phenobarbitol; sleep; bowel movements and urination. It affects his bones, promoting bone loss. It needs to be given on an empty stomach, but he is fed via pump 18 hours/day. It caused him to have a fever for a week, insomnia, low red blood cells and lethargy, a headache, and joint pain.

In my head, I hear the narrator of every TV commercial for a pharmaceutical: "XYZ Drug may not be right for everyone. Check with your doctor, before starting XYZ Drug, if you have ... (a long list of things)."

We tried Synthroid for Jon, but it didn't fit -- it isn't right for him.

And this is quite sad. I wanted it to work for Jon. There are no other options, especially since Jon is likely to be on Gtube formula for the rest of his life, because he can't tolerate blenderized real food. If I could feed him real food, we could avoid the soy, corn, and sugar in his formula, and that would possibly stabilize his thyroid.

I hope that Jon's doc doesn't argue with me, or try to persuade me to consider other options for why Jon had these symptoms, and now he doesn't.

I kept faithful to my mantras and trusted my gut and suspected the drug. Time and again that proves to be the right path to follow, and I believe it is this time.

What will happen next? Who knows? I'm hoping that Jon and I will be dancing and laughing more often.

Trust Your Gut!

Love & Light,

Rose

[Paul from Australia]

Dear Rose.

You did the right thing in trusting your gut.

You know know that the Synthroid is not right for Jon.

We will pray that the right drug comes along.

God bless and seeya,

Paul, Alison and Grant the champ.

[Earth Mother 2 Angels]

((((((Paul))))))

Thank you for your prayers, but there are no other viable drugs for Jon's hypothyroid. That is what makes it so incredibly frustrating. I can't treat it through diet, and he can't take the drug to treat it.

He is in a similar situation with his enlarged prostate. He can't take any of the drugs for that condition for an assortment of reasons, nor is he a candidate for any procedures/surgery.

These are the unfortunate realities for Jonathan.

We just remain hopeful that Jon can function without the meds to treat his hypothyroid and his prostate for as long as possible. We know that eventually, they will take their toll on him.

Love & Light,

Rose

[Donna Thomson]

Oh, Rose. I have the most beautiful image of you in my mind. I am so happy you trusted your gut. Keep dancing! xo