Re: Re: New Member -- Complete Thyroidectomy -- Very discouraged

Posted December 29, 2004 · December 29, 2004

Gossimer,

I take the synthroid as soon as a get up in the mornings with a glass of water. I usually drink a cup of coffee on my way to work, which is at least an hour later.

What is a normal replacement dosage on Synthroid? Does Synthroid need to be raised gradually. I started at .112 mcg in March and am now at .150. After my last bloodwork (a couple of weeks ago) showed my TSH to still be at 11.6 I was told to take 2 tablets every other day, and one tablet on the inbetween days. I will have the levels checked again in about 4 more weeks.

Jeannie

New Member -- Complete Thyroidectomy -- > Very discouraged> > > >> >> > I just found this site and hope that maybe I will also find some> > answers. I am a 47 year old female. I had half of my thyroid> > removed in 1995 due to a tumor that showed possible inconclusive for> > cancer. After removal, it showed pre-maligent, but they left half> > of my thyroid, so I was put on a maintenance dose of synthroid.> > Three years ago my doctor decided that my hormone level needed to be> > reduced and lowered my dosage. I almost immediately began to feel> > tired and achey, but he would not put me back on the original> > dosage. I was not pleased with him over a few other things, so I> > decided to change doctors. I told the new doctor how I was feeling> > and he did bloodwork, but determined that the levels were OK and I> > would just have to live with it. Six months later I went back to> > him because I had a lump in my throat and it was very tender. He> > brushed me off again. I went back six months later the lump was now> > making it hard to swallow and he told me I was imagining this. Less> > than a month after this I went for my yearly checkup with my> > Gynocologist, who ask me if I realized I had a lump in my throat> > that shouldn't be there and ordered a sonogram. It showed a 5.6 cm> > tumor on the front side of the lobe and a 2.4 cm tumor on the back> > side of the lobe. He immediately sent me to the throat specialists> > who did my first surgery, who got me in to see a different endro.> > doctor. They both agreed that the tumors were much to large to> > shrink and given the pre-maligent state of the one they removed> > earlier that I needed to have the remainder removed. Two days after> > the surgery my calcium levels dropped dangerously low and instead of> > the two day hospital stay that I had planned on I was there for> > nearly two weeks. I had seizers and was on a calcium drip for 10> > days. I am currently taking .175 mg of synthroid, 1200 mg of> > calcium 4 times a day and 600 mg of magensium 3 times a day along> > with medication for blood pressure, high cholesterol, female> > hormones, and an antidepressent. I have had the thyroid hormone> > level and calcium level checked every six weeks since the middle of> > March. Everytime my synthoid dosage is increased, but for some> > reason, I don't seem to be asorbing it correctly. My last TSH was> > 11.4 and the doctor said it should be betwee. .2-.5. I am really> > beginning to get concerned. I am having heart papitations. I was> > checked by a cardiologist who thinks that if I get this problem> > corrected this will correct the papitations. I was also disgnosed> > with Sleep Apnea a couple of months ago and am now sleeping with a> > CPAP machine. At least this has made me less tired. I had lost> > nearly 80 lbs prior to the surgery in March and was within 40 lbs of> > my goal weight. Since the surgery I have not changed how I was> > eating, but have gained nearly 40 lbs in 7 months. I am so ready to> > have control of my body and feel good again. I would love to hear> > any suggestions the group might be able to offer.> >> > Thanks,> > Jeannie> > jeanniekaybrks@d...> > > >

Posted December 29, 2004 · December 29, 2004

Thanks for this information. In addition to the calcium tablets I take, the doctor has also told me to take 4 TUMS a day for added calcium. I wonder if this could be affecting anything?

Jeannie

Re: New Member -- Complete Thyroidectomy -- Very discouraged

What is the most important information I should know about calcitriol?Do not take antacids or vitamin or mineral supplements except under the supervision of your doctor. Contact your doctor if you experience weakness, headache, nausea and vomiting, dry mouth, constipation, a metallic taste in your mouth, muscle or bone pain, increased thirst and/or urination, increased nighttime urination, itching, or decreased appetite. These may be signs of too much calcium in your body.What is calcitriol?Calcitriol is a synthetic (man-made) form of vitamin D. Vitamin D is important for the absorption of calcium from the stomach and for the functioning of calcium in the body.Calcitriol is used in the treatment of low levels of calcium in the body of patients on chronic renal dialysis and patients with hypoparathyroidism. Calcitriol is also used to treat secondary hyperparathyroidism and resultant metabolic bone disease in patients with kidney failure who are not yet receiving dialysis.Calcitriol may also be used for purposes other than those listed in this medication guide.What should I discuss with my healthcare provider before taking calcitriol?You cannot take calcitriol if you have high levels of vitamin D or calcium in your body. Before taking this medication, tell your doctor if youtake digoxin (Lanoxin, Lanoxicaps); ortake magnesium-containing antacids.You may not be able to take calcitriol, or you may require a dosage adjustment or special monitoring during treatment if you take either of the medications listed above.Calcitriol is in the FDA pregnancy category C. This means that it is not known whether calcitriol will harm an unborn baby. Do not take calcitriol without first talking to your doctor if you are pregnant. It is also not known whether calcitriol passes into breast milk. However, it is believed that calcitriol could harm a baby. Do not take calcitriol if you are breast-feeding a baby. How should I take calcitriol?Take calcitriol exactly as directed by your doctor. If you do not understand the directions on your prescription bottle, ask your pharmacist, nurse, or doctor to explain them to you.Take each dose with a full glass of water. Swallow the capsules whole. Do not chew or bite them. To ensure that you get the correct dose, measure the liquid form of calcitriol with the dose-measuring device provided, not with a regular table spoon. If you do not have a dose-measuring spoon, cup, or dropper, ask your pharmacist for one.Your doctor may also prescribe a calcium supplement while taking calcitriol. Follow your doctor's instructions.Store calcitriol capsules and solution at room temperature away from moisture, light, and heat. What happens if I miss a dose?Take the missed dose as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and take only your next regularly scheduled dose. Do not take a double dose of this medication.What happens if I overdose?Seek emergency medical attention. Symptoms of a calcitriol overdose are not known but may include irregular heartbeats, abdominal pain, nausea, vomiting, dry mouth, decreased appetite, constipation, weakness, headache, or a metallic taste in the mouth.What should I avoid while taking calcitriol?Do not take antacids or vitamin or mineral supplements except under the supervision of your doctor. What are the possible side effects of calcitriol?If you experience any of the following serious side effects, stop taking calcitriol and seek emergency medical attention: an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives);an irregular heartbeat; orabdominal pain.Other side effects may be signs of too much calcium in your body. Contact your doctor if you experienceweakness;headache;nausea and vomiting;dry mouth;constipation;a metallic taste in your mouth;muscle or bone pain;increased thirst and/or urination;increased nighttime urination;itching; ordecreased appetite.Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.What other drugs will affect calcitriol?Before taking calcitriol, tell your doctor if you are taking any of the following medicines:digoxin (Lanoxin, Lanoxicaps);a magnesium-containing antacid;cholestyramine (Questran, Prevalite);orlistat (Xenical);a thiazide diuretic including hydrochlorothiazide (Esidrix, Hydrodiuril, Microzide, Oretic), chlorothiazide (Diuril), chlorthalidone (Hygroton, Thalitone), indapamide (Lozol), metolazone (Mykrox, Zaroxolyn), bendroflumethiazide (Naturetin), hydroflumethiazide (Diucardin, Saluron), methyclothiazide (Enduron, Aquatensen), polythiazide (Renese), and trichlormethiazide (Naqua); ormineral oil.You may not be able to take calcitriol, or you may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed above.Drugs other than those listed here may also interact with calcitriol. Talk to your doctor and pharmacist before taking any other prescription or over-the-counter medicines.Where can I get more information?Your pharmacist has additional information about calcitriol written for health professionals that you may read.What does my medication look like?Calcitriol is available with a prescription under the brand name Rocaltrol. Other brand or generic formulations may also be available. Ask your pharmacist any questions you have about this medication, especially if it is new to you.Rocaltrol 0.25 mcg--oval, light orange, soft gelatin capsulesRocaltrol 0.5 mcg-oblong,, dark orange, soft gelatin capsulesRocaltrol Oral Solution 1 mcg/mL-clear, colorless to pale yellow solutionBrand Names:Rocaltrol--------------------------------------------------------------------------------Remember, keep this and all other medicines out of the reach of children, never share your medicines with others, and use this medication only for the indication prescribedEvery effort has been made to ensure that the information provided by Cerner Multum, Inc. ('Multum') is accurate, up-to-date, and complete, but no guarantee is made to that effect. Drug information contained herein may be time sensitive. Multum information has been compiled for use by healthcare practitioners and consumers in the United States and therefore Multum does not warrant that uses outside of the United States are appropriate, unless specifically indicated otherwise. Multum's drug information does not endorse drugs, diagnose patients or recommend therapy. Multum's drug information is an informational resource designed to assist licensed healthcare practitioners in caring for their patients and/or to serve consumers viewing this service as a supplement to, and not a substitute for, the expertise, skill, knowledge and judgment of healthcare practitioners. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective or appropriate for any given patient. Multum does not assume any responsibility for any aspect of healthcare administered with the aid of information Multum provides. The information contained herein is not intended to cover all possible uses, directions, precautions, warnings, drug interactions, allergic reactions, or adverse effects. If you have questions about the drugs you are taking, check with your doctor, nurse or pharmacist. Copyright 1996-2003 Cerner Multum, Inc. Version: 1.06. Revision date: 2/13/04. <http://my.webmd.com/hw/drug_data/d03126a1?orgpath=/hw/drug_data/d03126a1>--- In The_Thyroid_Support_Group , Jeannie <jeanniekaybrks@d...> wrote:> ,> My endo said that my one of my parathyroids was damaged during surgery and that this was causing my calcium problem. I am now taking Calcitriol Caps twice a day. I'm not sure if this is parathyroid replacement. I am taking so many pills a day now that it is hard to keep up with what I am taking. I think I rattle when I walk. I called my doctors office and requested that they mail me the results of my lates bloodwork. While I am not exactly happy with my Endo Dr., I'm at a loss of where else to go. I live in a small town that does not have an Endo Dr. The nearest ones are about 50 miles away and there are only 4 there. I have actually seen all of them over the past years and this one is the best of the 4. The other three kept telling me that there really wasn't anything wrong with me. I was just imagining all of the symptoms and then the large growths in in my throat. > > I have asked about Armour thyroid and he told me that he doesn't like to put patients on it because it is difficult to regulate. At this time I am taking .150 mcg of Synthroid once a day. I started out taking .112 in March. I am not sure what a total replacement dose is. I am assuming from what I am reading that you have to increase dosages slowly. > > I am tired all of the time. I was diagnosed with Sleep Apnea in October and have been sleeping with a CPAP machine for about 6 weeks. I actually thought I was feeling more rested until last week. I really pushed to get everything ready for Christmas. I had done none of my shopping or cooking, and had 12 people scheduled to be at my house on Christmas Eve. I got everything done, but have absolutely crashed this week. It is Wednesday and I have not gotten out of my sweats since Saturday evening. I just take a bath and put on clean ones. I haven't taken down my decorations, bought groceries or anything that I need to do. I just can't seem to make myself do anything. I work as an Administrative Secretary for a school district, so I am off the week before and week after Christmas. I sure hope I get some of my energy back before next week. The first week back after a two week holiday will be hetic. > > Thanks for the info.> > Jeannie

Posted December 29, 2004 · December 29, 2004

Hi Jeannie, it's Topper....

Yes, it's best to increase dosages gradually. We have quite a few new members so I'll run through some of the basics, review for those of us that have been around for a while, and to help out all the new folks.....

T4 is the thyroid storage hormone. It is distributed throughout our body and stored in the tissues of the body. It takes time for the levels to build up, the general guideline is 4 to 6 weeks. That means that for someone starting to take T4 today, they won't realize it's full effects for another month to month and a half. So it's best to adjust slowly and to wait at least a month for labs, better 6 weeks, and then do labs. If the levels show that more hormone is needed, then you can increase, and then wait...

It can be enough to drive you insane to wait, I know, I've been there... but waiting means that the labs will be accurate, that you won't be overdosing and not realize it until long after doing one or two or more increases.

This same rule applies for Natural thyroid (like Armour.. and it's generics) which are mostly T4... you still have to wait for the levels to build up in your tissues and for conversion to be kicking in on those increased levels before you can get accurate labs and realize the full affect of a given dosage.

A time line might make it easier to understand...

I'll use round numbers just to make things easy.

Week 1: 25 mcg. Your body is getting some of it.. but not much

Week 2: add another 25 mcg for a total of 50 mcg. Your body is getting a bit more... but not all of it, you might feel a bit better, most likely not.

Week 3: add another 25 mcg for a total of 75 mcg. Probably still not feeling much better, may or may not be noticing a difference.

Week 4: add another 25 mcg for a total of 100 mcg. Starting to notice a difference, want to add more.

Week 5: add another 25 mcg for a total of 125 mcg. Your body is feeling different, but you know you need more.

Week 6: add another 25 mcg for a total of 150 mcg. Your body is finally getting the full effect of the dosage that you started on week 1. You're feeling like it's doing some good.

Week 7: add another 25 mcg for a total of 175 mcg. It's finally noticeable, no doubt about it. This has to be the right dose. You'll hold here for a while. Your body is just now getting the full effect of week 2.

Week 8: still holding at 175 mcg. Still feeling good. Your body is just now getting the full effect of week 3. The doc might have you in for labs. the labs are showing 'in normal range' and the doc says your are just fine.

Week 9: still holding at 175 mcg. Hmmm. Not sure how you feel. Better than before... but you're not sure. Your body is just now getting the full effect of the dosage increase at week 4.

Week 10: not feeling so good. You're a bit nervous, anxious. Weight might be coming off a bit. Your body is just now feeling the effects of week 5

Week 11: You're starting to feel a bit hypo again. Tired, no weight loss. Feeling depressed. Your body is realizing the increase in the hormone levels and TSH is continuing to drop. Whatever your thyroid was putting out is now being slowed or stopped. The total hormone in your system is coming down because of decreased thyroid gland production. Your body is just now getting the full effect of the dosage increase at week 6.

Week 12: You're feeling worse. Not as good as before. You must need a dosage increase but you're not sure. You'll wait another week and see how you feel. Your body is just now realizing the full effect of the 175 mcg that you've been taking since week 7. But because of the delayed reaction to the dosage increase and the actual thyroid production changing... you have no idea if you should increase or hold. You do know that you feel like crap.

That's a VERY simplified time line. And it IS NOT the same for everyone.. but do you get the picture about the time delay that your body deals with whenever you adjust a dose? That is why we are always saying to wait at least 4 weeks before an increase, better 6 weeks. Why we say to adjust in small increments and wait for your body's reaction before making another increase.

Learning how to self monitor ( www.thyrophoenix.com/self_monitor.htm ) between labs will allow you to watch how your body is reacting and adjusting to the increases. And for those with auto immune issues (like Hashi's or Grave's) it gives you a better insight to the antibody levels and if adjustments are needed.

When ever I do an increase I get back to my chart. I check waking temp and heart rate and write it down. I spot check during the day, and write it down. I've always noticed the same pattern... for a few days after a dosage increase my temp and heart rate goes up a bit.... then will drop back down, not as far down as it was but it drops... that shows that the body is reacting to that dosage increase with an increase in metabolism, exactly what it should do... and as the body adjusts to that dosage it drops a bit again... but ultimately, through each dosage increase the heart rate and basal body temp increases to where it should be.

I have to add that I was on Natural hormone when I did this. So the direct T3 in the natural gives a more immediate reaction than taking only T4.

I was in VERY rough shape when I started. Most of you won't ever get that bad. But it gave me the opportunity to see changes.

In 29 months I've gone from a heart rate of 50 to a heart rate of 72.

My body temp has gone from 97.0, or less, to 98.4 (waking temp)

My breathing as gone from an elective 10 per minute (I say elective cause sometimes I'd just stop breathing) up to 20.

I'm no longer on crutches. I'm walking better and farther. I can take a shower without collapsing on the bed afterwards, trying to catch my breath. I can go up and down the stairs to the basement a half dozen times a day rather than once or twice a month. When I wash my hair I can lather, rinse and repeat without my arms feeling like they are going to fall off AND I can put in the conditioner AND I can towel dry my hair AND I can comb it out.

It gets better. It really really does.

You have to learn the basics and then apply what you have learned to YOUR body. We have found out that we are all very individual in just how thyroid malfunction affects us.... so we have to find out what each of us, as individuals, needs to do to make up for that malfunction.

that could mean adjusting meds - dosage and/or timing

finding the right vitamins and supplements

modifying our diets for the types of foods we eat and how and when we eat.

.... just a gamut of things....

By reading the posts and seeing what others are doing... what others are experiencing.. that is how you get the information, the knowledge, to learn to help your own body. To learn how to communicate with your doctor, or to determine it's time to find a better doctor...

sigh... I'm stopping now... it's just been a long winded day for me....

*blush*

Topper ()

On Wed, 29 Dec 2004 17:09:24 -0600 Jeannie writes:

Gossimer,

I take the synthroid as soon as a get up in the mornings with a glass of water. I usually drink a cup of coffee on my way to work, which is at least an hour later.

What is a normal replacement dosage on Synthroid? Does Synthroid need to be raised gradually. I started at .112 mcg in March and am now at .150. After my last bloodwork (a couple of weeks ago) showed my TSH to still be at 11.6 I was told to take 2 tablets every other day, and one tablet on the inbetween days. I will have the levels checked again in about 4 more weeks.

Jeannie

Posted December 29, 2004 · December 29, 2004

Tums reduces stomach acid, that means that the synthetic T4 isn't being broken down properly for your body to use....

Synthetic T4 (like Levoxyl and Synthroid, etc) have an extra sodium molecule added to them, proper levels of stomach acid are needed to remove that sodium so that the T4 can is available for the body to use.

Taking antacids alters the stomach acid. Causing it to drop when the antacid is in there and to over produce when it's not there. It also reduces the stomach acid so that you aren't able to digest your food properly. That means that you are not absorbing the nutrients from the foods that you are eating and may mean that your gut is not going to be able to absorb the T4 properly.

I make that comment based on my own experience. Bleeding ulcer 25 years ago... years of playing the antacid roller coaster, along with GERD and Reflux, constipation and diarrhea..... I don't have problems with ANY of that any more. My PERSONAL opinion is to not mess around with your stomach acid.. there are better ways of getting calcium into your system, including chewable calcium tablets that you can use during the day... just remember to keep it away from your thyroid dose.

Calcium and iron bind with thyroid hormones, making them unusable by your body. Picture the molecules of the calcium, the iron, and the thyroid hormones as puzzle pieces. Calcium and iron can fit together with the hormones, but once they do the hormones can't fit with the hormone receptor sites in the body and just float on by in the blood stream.

Does it make more sense now? Taking the hormone with food or too much water reduces the stomach acid preventing the sodium from being pulled off for the T4 to be usable.

Calcium and iron in the system at the same time as the T4 makes it unusable.

....for those using natural the sodium molecule isn't an issue... but the calcium and iron is.....

I know.. confusing as all get out right now... but it will make perfect sense as you get it sorted out in your brain.

Ask questions, ask questions, ask questions. If you don't understand or forget, ask for someone to go over it again. If something is tickling the corner of your brain but not quite soaking in... ask.....

If you are experiencing symptoms or feelings, good or bad... we're here to listen, to help you understand.

....and if you just need to rant, rave, scream... you can do that here, too!

Topper () *climbing down off of soap box... sheesh... someone shut me up!!! *

On Wed, 29 Dec 2004 17:11:03 -0600 Jeannie writes:

Thanks for this information. In addition to the calcium tablets I take, the doctor has also told me to take 4 TUMS a day for added calcium. I wonder if this could be affecting anything?

Jeannie

Posted December 29, 2004 · December 29, 2004

The word that you lost Gossimer is Calcitonin... it's what allows the body to pull calcium out of the blood and put it back into the bones for repair and growth.... with no thyroid and/or parathyroid production our bodies can no longer produce it.. that is why those of us with no thyroid function do so much better on natural then synthetic... natural provides all the hormones.. not just T4.

Topper ()

On Wed, 29 Dec 2004 23:40:43 -0000 "gossimerwingz" writes:

< snip >

That is unless you, like me, decide to take a hormone replacement therapy that is natural and give our bodies all of the Hormones that the Thryoid normally produces - T4, T3, T2, T1 and Cal....I can never spell it...seem to have a mind block on that word...however, I digress from you questions....GossimerOne thing that I will throw in here....My Grandmother lived for over 40 years without her thyroid gland...She was 84 when she passed away. She was treated based upon how she felt and her rising basal temperature. She took a natural replacement therapy, Armour (or its equivalent in Canada) and did marvelously well on it.... Tall, never stouped over to my knowledge, full head of hair, stayed skinny as a railing, had energy coming out of her ears until the last few years...(worked on my grandfathers cattle farm until they sold it). Back then they didn't have all these fancy blood tests...The Doctors treated their patients like humans and upon how they felt on a charted daily basis...(I think they looked at the average of the week/month...I hope this helps...

Posted December 29, 2004 · December 29, 2004

God bless you Jeannie, you have had/have a full plate.

Re: New Member -- Complete

Thyroidectomy -- Very discouraged

>

> I would like to thank everyone for responding and giving me

> information. I am not sure if my doctor is checking T3 and T4. I

> need to call him tomorrow to set up some fasting bloodwork and will

> ask about this. Right now I am seeing so many doctors that I don't

> know who I am suppose to ask what questions to. In the past ten

> years I have had 7 surgeries, 5 of them major. I had a nonmaligent

> brain tumor removed and the first half of my thyroid removed within

> two weeks of each other in 1995. 7 months before that I had a

> hysterectomy. I had stomach surgery the year before that, and now

> the second half of my thyroid removed. In between I had surgery on

> both wrist for carpel tunnel, and surgery on a broken foot. I think

> my body has about had all it can handle. I am seeing a Internal

> Medicine doctor (primary care), an endrocrologist, an ENT, a

> cardiologist, neurosurgeon, a pulmonary specialist and GYN. Right

> now I see the endro doctor every 6 weeks and my primary care doctor

> every 3 months. The others are down to a couple of times a year.

> It's bad when you have to have an appointment book just to keep up

> with doctor appointments. From what I am reading nearly all of the

> things that have been wrong with me could be thyroid related,

> including the brain tumor which had hormone receptors. I guess I

> can't blame my thyroid for the broken foot. I am feeling some what

> better since I have been sleeping with the CPAP machine. Before

> that I was having a hard time putting together a coherent thought

> when I woke up in the morning. I was as tired when I got up as I

> was when I went to bed. My husband says that he is actually

> sleeping better since I am on the machine because I don't sound like

> I am choking in my sleep. He said that it improved after they

> removed my thyroid and the large tumor from my throat, but didn't go

> away completely. I have been taking the antidepressent since I had

> to have the surgery on my brain. My neurosurgeon thought that I

> needed this due to the changes in my brain.

>

> I will post again after I get the other lab results from my doctor.

> Thanks for listening to me. It helps to talk to others who are

> experiencing the same problem and don't just think I am going crazy.

>

> Jeannie

Posted December 29, 2004 · December 29, 2004

Topper,

Thanks for being so nice. I am really trying to asorb all of this new information. I had a brain tumor and a half of my thyroid removed withing two weeks of each other in 1995. I realize that I was nearly 10 years younger then, but I seemed to rebound much quicker then. I still had two teenagers at that time also. This has been a long and difficult 9 months since they removed the remaining half of my thyroid. I am so tired of being tired all of the time. Thankfully my husband is understanding and helps out a lot at home. I am still working full time and that is about all the energy I can muster. A lot of days I will close the door to my office, turn off the lights and take a 30 minute nap at lunch. I hope the better comes soon. I'm sorry to sound like such a complainer. It is usually not my nature to be this way. I have been on a real pitty party lately.