General Medicine

» fivebreaths - how & when to choose??

Hello to Elaine,
Please forgive me in advance if I ask some questions you've already answered many times. I've browsed thru almost all the 220-something postings, yet still (and I feel like it's partly my 'Graves-brain": my inability to focus,to concentrate), I am confused about some things.
I have an appointment this WEDS to see the endocrinologist I saw a few months ago. It will be the 1st time I've met with the her sincethe initial Graves dx., when she recommended all the scary tratments doctors recommend. My primary doctor(MD) had referred me to the Endo initially to confirm that I did indeed have Graves, and has been more than willing to guide me and have me follow a course of herbs and bionutrition, acupuncture, and homeopathy to see what results and changes I can effect on my own, before considering the more aggrssive treatments allopathy offers. OK---I repeat myself---maybe you remember me from a month ago---Anyway, --it seems I'm more willing to tolerate the manydifficult presenting symptoms even though they are driving me nuts---rather than try the ATD's, the RAI's etc.
I am really terrified to go that course, as all I seem to read of them are the horror stories. Even your story is pretty scary! But, I'm close to ready to throw in the towel, as all the holistic health efforts are financially costly (which is SO unfair -- that my health insurance covers NONE of my choices; will cover only medical tx's).
The Endo I spoke to a few months ago was really pushing the RAI. She said the ATD's are not reliable or difficult to modulate--that they use it more in Europe, and that the most popular choice in the U.S. is RAI. My logic tells me that the ATD's would be a better choice because it's NOT ABLATION!! and that at least you still have a thyroid producing natural thyroid hormones, even if you have to chemically slow it down!
The bugleweed- motherwort-melissa-scullcap-reishi-astragalus custom herbal blend I am taking fully matches my health values! but, while I await it's effectiveness, which may take months, my symptoms though not debilitating are really really challenging, and increasing.
so---what's one to do?
I know what the Endo will advise.
And she'll scare me too into beliving I have no window of time to take risks. And she will tell me to do the RAI.
I'm tempted to do SOMETHING, because I want a fix-it solution, or I'll go uot of my mind! But which is better? stay on course w/ the natural tx's? For how long? What's reasonable? Or better to just do the ATD? RAI? or are both horrific? will i go through months of feeling even worse while I become HYPOthyroid, gain 30lbs, lose all my hair, become hopelessly depressed? because that's what it sounds like happens.....
and/but i'm spending a ton of money I don't have on all the altrenative stuff,while feeling too unwell & too exhausted to work harder to earn more to afford the treatments I believe in.
It's a terrible catch-22. And I pray for the day when our health care system recognizes a broader spectrum of treaments as coverable by insurance.....
Thank you for listening, and thank you in advance for any advice you may offer, Elaine.
(& sorry so lengthy...)

-- posted by fivebreaths

» cybee - Mixed up Help!!!!!

In response to Mixed up Help!!!!! posted by cowlover614:

Hi! No, I do not take beta blockers. My first Endo appt is next Monday....I hope to just do ATDs if needed. What are the beta blockers for? (heart?) Yes, I take fish oil capsules as they ahve that Omega 3 and maybe 6? Seems an easy way to get that included for me. Yes, I have a sister in law who had her thyroid ablated and seems to be doing fine..but I also have a sister who just did ATDs and now she is back to normal with no symptoms for 10 years...I would rather keep my thyroid and the stories of things going haywire with RAI ablation..I just really don't want to go there . Yes, we did our Easter eggs yesterday evening too B^)and now off to church! Take care!

-- posted by cybee

» cybee - Mixed up Help!!!!!

In response to Mixed up Help!!!!! posted by cowlover614:

Oh, I just thought of this. My sister who did the more European style ATDs for her Graves did have to be followed more and her docs would say how much easier it is for one to just have the RAI albation . Well, now my sister still has her thyroid and no symptoms...and so she had to go in for more checks, I think she thinks it was clearly worth it...despite the murmerings of her docs! ha!

-- posted by cybee

» Elaine Moore - Mixed up Help!!!!!

In response to Mixed up Help!!!!! posted by cybee:

Hi,
I'm still on vacation but got a chance to stop by.
I agree that an ultrasound is sufficient to see if you have nodules, and since you already have evidence of thyroid antibodies, you can tell that your hyperthyroidism is autoimmune. Having a TSI test would confirm that you've moved into Graves' disease.
ATDs do offer protection from TED since they mildly suppress the immune system. You may want to call your doctor and report that your eye symptoms worsened after stopping ATDs and that you plan to skip the RAI uptake and will be continuing with meds. At your next appointment you can ask for the TSI test.

Most people with TED do not need surgery. In most cases, eye symptoms resolve when the thyroid hormone levels are corrected. If congestive TED develops, in most cases it resolves on its own once the active phase of the disease ends. In any case, surgery wouldn't be done until the active disease phase ended.

Flaxseed oil can also help reduce symptoms of TED so that's one supplement you definitely want to add. Best, Elaine

» Elaine Moore - Post hypo rai-lt4 dosing & symptoms

In response to Post hypo rai-lt4 dosing & symptoms posted by u25000:

Hi,
Many things affect your thyroid hormone levels, including pregnancy, weight, diet, stress, and the type/batch of replacement hormone you're on. Ideally, you'd have an FT4, FT3 and TSH at least every 6 months and 6 weeks after any adjustments to your dose.
Many people have trouble with generic forms of L-thyroxine (T4). And several years after RAI, many people need replacement hormone containing both T4 and T3 (like Armour) rather than T4 alone.
Symptoms are more important than lab values, but it's best to have FT4 and FT3 levels that are within range, preferably near the high end of the range. TSH is often falsely decreased after RAI so your levels of FT4 and FT3 are better indicators of your thyroid status.
When you become pregnant you'll need an increase in thyroid hormone levels as your pregnancy progresses. By the last trimester most people need a 50% increase in their dose of replacement hormone. This is due to the increase in estrogens. Estrogens compete with thyroid hormone for the proteins that transport hormones through the blood. Best, Elaine

» Elaine Moore - how & when to choose??

In response to how & when to choose?? posted by fivebreaths:

Hi,
I'd use the ATDs if I were you, preferably using methimazole at a low dose, like 10 mg daily, and I'd use beta blockers like atenolol to help reduce symptoms until the meds kick in. Used properly, these meds can help you achieve remission, and their side effects are minimal when low doses are used.
Once your FT4 levels falls within the normal range, you can decide if you want to lower the ATD dose, using a low maintenance dose to reduce production of new hormone or rely on natural means/diet until you achieve remission.
ATDs mildly suppress your immune system and they block iodine absorption. By reducing dietary iodine you can use an even lower ATD dose and this also helps move things along.

Bugleweed acts like an ATD in that it too blocks iodine absorption, and it also reduces the effects of thyroid antibodies. L-carnitine is great because it reduces the symptoms of hyperthyroidism and this would be a big help for you until natural means kick in.

If you have a health care spending account and your practitioner prescribes supplements, you can at least use your health care spending account for these products. If your doctor prescribes supplements you can also see if your prescription plan covers them. Best, Elaine

» fivebreaths - how & when to choose??

In response to how & when to choose?? posted by daisyelaine:
thank you elaine, so much for your reply
I have questions regarding: L-cartinine dosage, substitutes/alternatives for Beta-blockers, and question about ATD dosage/effectiveness/lenght of time to know.

1) My doctor has me taking 1000 mgs of L-cartinine,2x/day.I've read that 500mgs is adequate for reducing thyroid hormone. What is your opinion about mega-doses?

2) I was trying to take Atenolol. My doctor started me on 20mgs, but it was too strong for me, made me even more tired and weak than I began, so he switched to Propranolol 10mgs, and it did the same---so he said cut it in half and take it at night, but even 5mgs made me feel drugged and sleepy and 'weak'-ish. So........I now am not taking beta-blocker. Is it unsafe to allow heart rate to continue being accelerated without beta-blocker assisitance to slow down? Is it ok for the heart to wait for the effects of ATD to kick in? My heart rate is now up to 100 bpm at resting, and can go up to 106/110 by just shampooing my hair in the shower! I've sort of gotten used to it. I don't exercise as much I I used to, or do as much around the house, as it becomes uncomfortable to feel my heart pounding, and franlky, it is exhausting! I'm thinking of dosing myself w/ Kava Kava instead, because it's relaxing, but i don't know, haven't researched if it's effective particulary in slowing down the heart. I'll see. Have you experince with Kava for the heart rate?

3) I've always been sensitive to medications, requiring smaller doeses than is normal. Do you think I should expect the same w/ ATD? ie: if 10 mgs is a normal low dose of Methimazole, am wondering if it's reasonable to assume that 10mgs may effect me like someone else taking 20 mgs, and how will I know my dose is too high, until I've gone and created a hyPO situation?(which is one of my great concerns) Docors in the past have been somewhat dismissive when I tell them I'm sensitive to normal dosing ---would it be ridiculous to ask to be started on 5 mgs of Methimazole? And how long would it take for me to wait and see if it is effective, before considering going up to 10mgs?

Thank you Elaine. I go to the Endocrinologist on Weds a.m.EST this week. Don't know if you'll read this by then, but any information is really so appreciated!

-- posted by fivebreaths

» cowlover614 - Mixed up Help!!!!!

In response to Mixed up Help!!!!! posted by daisyelaine:

Hi Elaine I know by now you know I've decided NOT to do the scan! Everything I 've read even if it is supposed to be a low dose my gut feeling just says to pass on it. So now I have to find a doctor who is willing to keep me on the ATD's and beta blocker and do the right labs! So far I'm 3/0. I have to take my youngest to her doctor tomorrow She's a DO, I want to kind of scope her out and see what her thoughts on thyroid are. I've never been to her but it can't hurt to ask, maybe I'll have some luck. I've made the choice not to go back to the endo. Question I've been on the ATD for about three weeks almost four now, how long is it safe to wait before labs? I don't want to end up hypo and not know it. Also how can the endo just say I have Graves? Hashi's I can understand because of the antibodies. I know I've maybe asked this before but! What brings my thyroid levels back to where their supposed to be? Also I take from what you say their are two stages to TED. See I'm still confused about all of this, for some reason it seems like it's taking forever to sink in! It's not bad enough to look like this but it makes me feel really stupid! But at least on the ATD I'm not so depressed! Guess that's a positive. Anyway like I said I did get the flaxseed oil just want to make sure one more time that it is ok to take with the beta blocker. Thanks so much Shirl

-- posted by cowlover614

» cowlover614 - Mixed up Help!!!!!

In response to Mixed up Help!!!!! posted by cybee:

Hi Hope your doing ok! Hope Easter was good! How's your eyes? I'm sure glad we have Elaine because I'm still confused. How are you doing on the flaxseed oil is it helping any yet? Your right I'd like to keep my thyroid to, it's just trying to find a doctor around here who will try things my way. I decided not to go back to the endo. I just feel his only idea is the scan. So far my luck with doctors isn't very good! So I'll keep trying. I'm still having those night sweats and my hip is still waking me up! I just can't seem to sleep good up and down all night! Well your appt. is coming up I sure hope you have better luck!!!! Shirl

-- posted by cowlover614

» cybee - Mixed up Help!!!!!

In response to Mixed up Help!!!!! posted by cowlover614:

Hi! Glad you are feeling better (less depressed) , Shirl! I am concerned about my Endo too...don't know what will happen there, but I will report back after my appt (which is April 16). I still have some night sweat, but am sleeping better (thank goodness!). I hope your search for a satisfactory Endo is successful! One should be content with one's doc.

I just have ground flaxseed...and I have a question for Elaine too ....whether flaxseed oil is better than ground flaxseed (likely easier to take more of it in oil form)..and is flaxseed better than fish oil which I am taking in capsules?

-- posted by cybee