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Old 08-17-2009, 02:14 PM   #1
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Many thyroid questions from an addisonian

Just getting the hang of all this~

Having Addisons (dx 1994), low estrogen (premature ovarian failure dx at age 30, and now age 53!), and hypothyroid function (started thyroid hormone replacement 2006), I have many many questions. I have Zero adrenocortical function. I have a lot of thyroid function left, only need a ‘top up’ I think. I replace cortisol, mineralocorticoid (aldosterone), DHEA, and a bit of estrogen, progesterone, and also I use a testosterone cream to raise androgens.

I’ll attempt to sort from impending importance (‘acute’ questions? haha) to those general issues that plague and perplex the mind (‘chronic’ questions? )

1. When my heart races (usually as Cortef dose is wearing off), endo has me take extra Cortef to resolve it. This usually works within 20-45 minutes. He says, if it doesn’t work, then the cause of raised pulse was not adrenal insufficiency. My question: COULD the heart rate going above 100 BPM, be due to excess Free T3, and could this be due to the state of mild adrenal insufficiency? Overconversion, some might say? And would this resolve so quickly, within 25 or 30 minutes, if it was due to Excess conversion to T3? OR with Zero adrenal function, is dehydration due to adrenal insufficiency the larger issue? It comes on insidiously I think, when it occurs… (How could this be sorted out?)

2. Any time steroids were raised for infection, briefly, I had to taper down. Even three days on higher dose, caused me to have terrible symptoms trying to wean down. With dropping only 2.5 mg. Cortef (1/2 mg. prednisone) for a week at a time, I had numerous events of heart racing to 103 to 138, and atrial flutters. Extra cortef did not help very quickly in resolving it, did help in about 2 hours time. This finally subsided when dropping Armour dose of 1 grain a day, split ½ early AM and ½ at noon after light lunch, lowered to ½ grain AM and ¼ grain PM. We actually decided the variability of the T3 in 1 grain of armour might be causing my heart to be sensitive to my body’s own adrenaline, which was produced when I was adrenally insufficient. !! (so crazy it could be true!) Thoughts on this welcome.


3. After mentioning to endo, decided to introduce some Synthroid to stabilize the T4 a bit. A foundation of T4 from which to spring, perhaps, and have Armour as a Top-up, eventually. Figured my heart would behave better. SO after going hypoT enough last January I added just a tiny 6.25 mcg Synthroid. Went very hyperT four days later, heart raced with that tiny bit. ONE day in the week! Crazy. Added in 6.25 mcg, that is ¼ of a 25 mcg pill, every two weeks or so, and ramped up to 6.25 mcg T4 every day. That is where I am at. All the while stayed on ¼ grain of Armour daily. Got through it, and realized that ANY time I have to up thyroid hormone, I should probably Raise Cortef first. In order for heart to tolerate the rise. (cardiologist workup shows just Sinus Tachycardia, no issues with the pattern and no problems, just FAST.) Question: if PART of the day I have higher cortisol, and Part of the day lower cortisol (cortef wearing off), what do I do about optimizing my thyroid numbers?

4. What is the best form of thyroid replacement for me? *endo and I sort of figured that having T3 of the Armour as part of my dose, could be very helpful in times of tapering steroids… I could just cut the Armour and keep the synthroid constant, and ‘fix’ the heartrate problem til all adjusted again.. .he says, that is a plus with T3… you can fix it fast…! Make sense? A foundation of T4, with a top up of either armour or cytomel… ?

5. Possibly due to multiple gland failures, my ACTH and my TSH are always high in AM before any replacements are taken. Cortisol is ZERO before I take Cortef dose! When ACTH is tested later in the day, it is low or within normal range. I wonder whether a true TSH reading can be had, before my steroids are on board in the AM. I just think it could well be artificially suppressed due to mild adrenal insufficiency, or it could be higher before my Armour hits my system. Question: is this the optimum time for me to get thyroid levels done? Funny, Endo says Go By Symptoms. Don’t even worry about the labs at all! But I am searching for a scientific explanation of what I see and feel. Symptoms are somewhat delayed, and how in the heck can I know whether to raise thyroid or not? Maybe I shouldn’t get labs at all.

Well, looks like all my questions are related after all. Nothing trumps anything else. Just CRAZY.

from a Crazy new member~
vintageviolets

 
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Old 08-17-2009, 06:28 PM   #2
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Re: Many thyroid questions from an addisonian

Oh my, this is quite a state of affairs for you isn't it? It sounds like you really know a lot about what is going on and need to keep tweeking your levels to get it right. I don't know how many here are familier with Addison's and how to treat hypothyroidism with AD as a complication. I have a brother with AD but he's not hypo too so he doesn't have to deal with this.

I'm not a fan of synthetics but since you are so sensitive to T3 it might benefit you to look at Cytomel instead of Armour to get the T3 levels just exactly right. Armour T3 levels are a bit variable and most of us can handle that just fine but in your case this might not be so.

Congrats on the Endo who wants to treat you by symptoms though! Most of us pray for such a doc. But it might be good to take a look at your free T numbers to see where you are at as well as your reverse T3 to check for pooling and conversion issues. If your cortisol levels are too low you can't move the T3 into your cells and your tachycardia and other hyper type issues might be stemming from that.

Last edited by moderator2; 08-23-2009 at 06:50 AM. Reason: please do not solicit pm's, as per the posting policy

 
Old 08-17-2009, 07:23 PM   #3
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Re: Many thyroid questions from an addisonian

Mcaimless, thanks for reply...

I see what you are saying about Armour and a bit of variability with the T3 in it. But i really like that it also has the T2, T1 and when deiodination occurs, the enzymes that are inhibited (by steroids being a bit high or low) in these conversions can really cause trouble I think... So my thought was, Synthroid plus Cytomel worked, I got my mind back by adding the T3... but endo really wanted me to try the Armour because of these other factors, I think. There aren't many like him out there, I know I am exceedingly lucky.

Do you know what I did?? I did actually find a compounding pharmacist about a half hour away from me, who was willing to come up with a Modified Release Armour capsule for me!! I can't believe it, he has much experience, best compounder around, and all the regular pharmacies recommend him when patients need something prepared.

He had not ever done Armour, only T3, in Modified Release. but said he could, and 1/4 grain would keep the size of the capsule down too. SO now I am taking the capsule at the same time as Synthroid, hour before breakfast. And it releases throughout the day, not just once in a burst. YAY. I was so excited, quality of life much better for me now. BUT i have to decide whether to up the synthroid or not. labs show still a bit low on both T4 and T3, so I am thinking I'll up the T4 a bit more, and watch what my body does with the converting.

The other option, compounding pharmacist told me--if the MR armour cap doesn't work for any reason (digestion trouble, inconsistent absorption due to timing of meals, other bowel stuff, etc.)--he has developed a compounded T3 cream. A very low dose, it has helped hundreds of women become balanced in their levels. He says the skin is actually a good absorber, and there is not any interaction with food intake, absorption, etc. And he says most of the women just apply a little of the T3 cream to their skin in early AM, one time, and it works to raise levels for the whole day. It is a very mild, small dose of T3. helps FM patients, etc. So I could also try that option.

I am really considering that every moment of my T3 levels depends upon my cortisol level. cause if it is up, i am low on T3 and if cortisol drops, I am not low anymore.

Regarding addisons forum info, always learning, that's the ticket I think, on this autoimmune journey... (I do alot with two Addison's Lists, great people there... and so many newly diagnosed have to get questions answered, etc. also colead local support group for the national adrenal foundation.) keeps me busy

Please tell me, what is PM? A way to contact another member privately?
that would be great, but I don't know how?

thanks for all your help & support!

vintageviolets

'The more I learn, the more questions I have.'

Last edited by vintageviolets; 08-17-2009 at 07:26 PM.

 
Old 08-18-2009, 09:40 AM   #4
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Re: Many thyroid questions from an addisonian

Help me understand. Why would a racing heart and adrenal insufficiency go hand in hand? I thought adrenal insufficiency resulted in the opposite, low BP and heart rate? When I saw an endo for what appeared to be hyperthyroidism, he thought it was due to overactive adrenal function.

 
Old 08-18-2009, 10:19 AM   #5
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Re: Many thyroid questions from an addisonian

Quote:
Originally Posted by sparkie View Post
Help me understand. Why would a racing heart and adrenal insufficiency go hand in hand? I thought adrenal insufficiency resulted in the opposite, low BP and heart rate? When I saw an endo for what appeared to be hyperthyroidism, he thought it was due to overactive adrenal function.
Hi, Sparkie, thanks for your reply. Let's see... IF I become adrenally insufficient, my blood pressure initially will start to drop. Because of this lowered bp, the body must compensate in order to send Oxygen, etc. to the brain and vital organs. SO my pulse increases. If you track your bp and pulse for awhile, you will see this tendency even for 'normal' person. bp falls, Heart Rate rises. bp rises, HR falls. So endo has me track my heart rate in order to help identify mild adrenal insufficiency, and i can then correct for it early enough to avoid a full adrenal crisis, a shot of dexameth. and an ER visit. !

Now my understanding of bp and pulse in my own thyroid hormone-circumstance, is that if bp AND heart rate are both on the lower side, it is a hypothyroid state. If bp and HR are BOTH on the higher side, it is more likely a hyperthyroid state. Clear enough, right?

The Fun starts when, as my endo explains, this all works as it should up until about age forty. THEN if adrenally insufficient, heart rate goes up, and bp MIGHT have initially fallen, BUT it could then have risen to a higher level before I noticed and checked it; he says this is because many more factors influence bp as we age. !!

If you were adrenally overactive, you would have too high cortisol. my bp rises in that state, and HR drops lower, cause the heart doesn't have to work as hard to get blood to the brain, with higher BP. hyperT situation I think would be likely to raise both bp and HR.

Hope that I am on the right track here, as far as thyroid issues go. Adrenal stuff is pretty sound for me, I have had it for 14 years! but thyroid is a little newer. these are my understandings, anyway, hope someone can verify for us.

VV

 
Old 08-20-2009, 06:29 AM   #6
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Re: Many thyroid questions from an addisonian

You wrote, "it might be good to take a look at your free T numbers to see where you are at as well as your reverse T3 to check for pooling and conversion issues. If your cortisol levels are too low you can't move the T3 into your cells and your tachycardia and other hyper type issues might be stemming from that."
Could you explain? If cortisol too low, Free T3 would be high and Reverse T3 would be lower? Is that what's meant by 'pooling T3'? or do I have it backwards?

I do think i read that with higher steroids (cortisol), Reverse T3 would increase and Free T3 would go down. (something about competing for the receptors?) That would be opposite of pooling, more of a conversion issue cause more FT4 would go to RT3 and not FT3? egad, toooo complicated

thanks, vv

 
Old 08-20-2009, 09:26 AM   #7
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Re: Many thyroid questions from an addisonian

So in your case, a bad RT3/T3 ratio would indicate excess cortisol and this would cause hypo symptoms. And I agree, pooling is a separate issue (even though I did wrongly group them all together in my post) when you are too low in cortisol to transfer T3 into the cells. It's a very confusing issue and in your case, where you don't produce any cortisol at all, one that has to be monitored very closely to keep in balance.

Last edited by moderator2; 08-23-2009 at 06:49 AM. Reason: posted disallowed website, copied from website - please read the posting rules

 
Old 08-20-2009, 09:55 AM   #8
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Re: Many thyroid questions from an addisonian

Thank you for very helpful post.

best,
vv

Last edited by hb-mod; 08-24-2009 at 02:47 AM. Reason: Reason: posted disallowed website(s) - please read the posting rules

 
Old 08-20-2009, 04:17 PM   #9
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Re: Many thyroid questions from an addisonian

Also, can you tell me, what is a 'bad' RT3/FT3 ratio? If I can get close to a FT3 at 50% of the normal range, I wonder what my RT3 should be. Any thoughts on criteria here?

thanks!
v violets

 
Old 08-21-2009, 04:47 PM   #10
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Re: Many thyroid questions from an addisonian

* Disallowed website link and related information removed by hb-mod, moderator *

The actual levels or RT3 aren't as important as the ratio of RT3 to T3. You have to divide the FT3 by the RT3 and multiply by 100 and it should be 2 or higher. Lower ratio levels indicate you are converting too much T4 to RT3 and the way to clear out excess RT3 is to use T3 only.

My RT3 ratio was about 1.08 so I was low but I decided to try to go with the desiccated hormones as well as high dose vitamins to raise my low B12 and D levels. I will retest next week when I see my doc to see if it is working. If I'm not able to get my T3 levels up I'll try some Cytomel as well.

Last edited by hb-mod; 08-23-2009 at 11:42 AM. Reason: Please don't post disallowed links as per Posting Policy. Thanks.

 
Old 08-21-2009, 07:11 PM   #11
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Re: Many thyroid questions from an addisonian

Good information, thanks very much. You wrote, "Lower ratio levels indicate you are converting too much T4 to RT3 and the way to clear out excess RT3 is to use T3 only."

... T3, yes, or else for me, drop my steroid replacement just a tad, perhaps? That is where I must explore and experiment a bit I think. Is it the steroids that get us in trouble, if they are not just right, say a bit too high in the morning and a bit too low in evening... AND if so, could a Reverse T3 level help sort out whether we are overreplaced on Cortef... hmmm

"My RT3 ratio was about 1.08 so I was low but I decided to try to go with the desiccated hormones as well as high dose vitamins to raise my low B12 and D levels. I will retest next week when I see my doc to see if it is working. If I'm not able to get my T3 levels up I'll try some Cytomel as well."

...Interesting plan, you're experimenting too I see. Do you ever have cortisol levels followed? I'm also wondering, would a thyroid 'supplement' with iodine, etc., work to try and boost function a bit even for those of us already on some thyroid replacement?

Of course, I don't know if my endo would even test for RT3, for me to sort out whether steroid levels are affecting it... he never said he would or wouldn't, I mentioned it once or twice but didn't push for an answer. Just by adding T3 to my T4, we kinda addressed it anyway, I think.


Good luck with the labs, and let me know what you decide~

Vv

 
Old 08-22-2009, 05:29 AM   #12
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Re: Many thyroid questions from an addisonian

I'm currently taking a multi vit that has 150mcg of iodine (I found that pre-natal vits seem to have the highest levels of things I think are important, all squeezed into one big horse pill I can barely swallow, even broken in half).I'm not autoimmune so I seem to be tolerating iodine well. I love seafood but since moving to AZ from Maine it can be hard to get(it's just not as fresh as I like it, unless it's sushi, which can be pricy to eat a lot of).
I'm also looking at installing a reverse osmosis system for my drinking water at home. Fluoride is, I think, a huge issue for us and whether its naturally occurring or added to the water, it will block iodine from its receptors. An under the sink RO unit costs about $200 and I've installed one before in a house with high saline well water without any trouble.
Ask your doc for the RT3 (has to be ordered with a FT3). It's a pretty common thyroid lab and he sounds like a great endo (we're all jealous I'm sure!). * disallowed product information removed by hb-mod, moderator *

Last edited by hb-mod; 08-24-2009 at 02:57 AM. Reason: Please don't promote a product or book, per Posting Policy. Thanks!

 
Old 08-22-2009, 05:40 AM   #13
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Re: Many thyroid questions from an addisonian

Great! Hey, I just checked, my multi has 150 mcg iodine as well. (not prenatal, but an 'over fifty' formula... teheh)

Is it the iodine in the thyroid 'boosting' formulas that really does the trick, do you think? other stuff in them too?

And if you want more information on the T3 cream, let me know.

vv

 
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