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Old 01-03-2008, 02:07 PM   #1
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Just got back from endo appt. Need your educated opinions, please

Hi, This is a question I need to have answered, please. I just got back from seeing the new PA at the endo office. She was great, very kind and helpful. She wasn't too concerned about the low ferritin, but ordered a lot of bloodwork to check things. She prescribed Ferrous Sulfate, 325mg-3x daily. She did say it is tough on your stomach, and I may not be able to tolerate it well...we'll give it a try. The endo thought my TSH at .27 was fine, I told her I thought it had to be more supressed and she said he wants it for ME{ no mets, small tumor} at .05-.3. They will recheck in 4 weeks. Thyroglobulin was undetectable, thank you, Lord. Ok, the endo who prescribed my very first dose 12 weeks ago said that he prescribes the generic, Levothyroxine, I had read, mostly on here and a few books from the library, that thyroid patients with cancer should always be on the brand name. I questioned him on it, and he stated the latest studies, PROVE that the generic is equivalent to the brand name. They used to not be, but are now. The pharmacist completely agreed and said that I am seeing the best endo in the state. Ok, so today, I see the new PA and she said she prefers to see me on the brand name Synthroid. So, she wrote the prescription and wrote to the pharmacist, to dispense only as written. He is vey nice, but seemed a bit annoyed that she changed it from what the doc had me on. He said it is only docs who are not up on the latest research who prescribe brand names, and that this will be more expensive{which it is} and I should have just stuck with the Levothyroxine, they have used the same company for the last 17-18 years, and that actually Synthroid co. has changed hands at least 4 times. WOW...Quite the controversy!! He said all the drug reps push so hard for the brand name Synthroid, and it makes him mad, because he feels like patients are getting ripped off financially. Who has an educated opinion and would care to comment on this???? I would be real interested in some opinions.Thanks, Lori

 
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Old 01-03-2008, 03:22 PM   #2
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Re: Just got back from endo appt. Need your educated opinions, please

Here's what I know:

In December '04, the American Thyroid Association, The Endocrine Society, and the American Assn of Clinical Endos issued a joint statement that takes issue with the FDA's methods of determining bioequivalence of thyroid brands/generics. The statement further says that the FDA had failed to answer their questions regarding the method.
So, for the time being, they recommend that patients stay on the brand or generic that works best for them and not be forced to switch by insurers who want to save money to the patients' detriment.
A fourth association, The Thyroid Foundation of America, agrees. That's four major endocrine assns who all say the same thing - If it ain't broke, don't 'fix' it.

Although I generally caution people about generic thyroid meds, I would feel very comfortable with your pharmacist's assurance that they always buy their supplies from the same place. My main concern about generics is just that... That pharmacies buy from whichever company gives them the best price, so that in effect forces patients to switch brands as often as at each refill.

In short, the PA should not have switched you over and above the endo's recommendation, even if the endo is mistaken that bioequivalence is assured (which it isn't).
If ...
1. you were having success with the generic, [It appeared you were.]
2. if you can be assured of continued access to that particular generic, [as the pharmacist says]
3. if that generic has had a good track record of stability and potency, [The pharmacist will know this info.] and
4. if you don't want to pay Synthroid's inflated markup, [I wouldn't want to.]
... stay on the generic.
That's my take on the subject.

Good luck with the decision.

 
Old 01-03-2008, 03:35 PM   #3
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Re: Just got back from endo appt. Need your educated opinions, please

I agree with Midwest, if it's working stick with whatever you are on...but....

The problem is the pharmacy---here's what happened to me: I used CVS, they switched companies that make generics based upon whatever was cheaper, then I used Medco, (mail order), they did the same thing---send me their favorite generic brand of the week. It needs to be consistent, once you find one brand that works, you stick with it, but that won't always work (as in my case) with generics. Since the fillers are different, you could absorb one better than another.

My endo. thinks the brand doesn't matter. In my case, I feel much better on the name brand, I don't know why or how.

It's also a pretty inexpensive drug, so it doesn't cost me all that much money altogether, so I stick with synthroid, and make sure my endo. does dispense as written.

Sounds like you found a good endo! Hope all your tests come out great, congrats on the thyroglobulin test too!

 
Old 01-03-2008, 05:16 PM   #4
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Re: Just got back from endo appt. Need your educated opinions, please

Thanks Midwest and Reece,
I really value both of your opinions....but I can't make up my mind if I want to switch. The pharmacy, Walgreens has my prescription for Synthroid ready, but I told my husband when he was on his way to get it, I don't know what to do still so hold off on getting it. The positives are I am feeling well, the blood levels for cancer supression are GREAT{ the nurse showed me the endo's notation} I get to stay on the 150, which is fine with me, I thought for sure they would increase my dosage as it has been 150 since the RA-I, and I didn't want to get hyper, so that's good news, too, I get to stay where I'm at. Then, I commented to my husband that since I now have to take Ferrous Sulfate, I won't know if the iron or the Synthroid makes me feel better or worse? I just question it because it seems EVERYONE on here does better on the brand name...I am always up for an improvement and/or doing better? Should I try the Synthroid and know I can go "back" to the Levothyroxine? OR LEAVE WELL ENOUGH ALONE? I am leaning toward sticking with the Levothyroxine, I don't want to mess up any blood levels, I feel blessed to be where I should be with the TSH and FreeT4, and having issues with calcium and Ferritin, so I hesitate to mess with it, yet this is my opportunity to try the BRAND name, Synthroid everyone seems to like the best.................EEEKK...what to do? I'll sleep on it and decide tomorrow...you both are so well educated and helpful and you both seem to lean toward "leave well enough alone" so, that is very helpful and I probably will stick with the generic. My husband does not want me to change. He's so happy that I am doing so well, he has customers who are miserable without their thyroids.Truly, the price is worth every penny of the difference if it makes you feel better, but how would I know if I don't try? Alright, enough for now. I'm making myself dizzy!!!! I suppose I could change months from now, this is still "new" to me and I should leave it be.
Bless you both for your kindness!!!
Lori

 
Old 01-03-2008, 06:53 PM   #5
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Re: Just got back from endo appt. Need your educated opinions, please

My IM that just started treating me, prescribed Synthroid and checked that a generic is allowed. Since I can get 90 days of meds for $5 this way I am going top try it out. However if my integrative med IM doesn't like how my T4 levels change on the generic or if I have a reaction to some of the fillers she will have me try Synthroid first and if that doesn't work my T4 compounded with minimal fillers.

As others stated the amount of T4 in your generic and name brand is the same.. however the fillers can and do vary.


Synthroid:
Inactive Ingredients:
Acacia, confectioner's sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc. Color additives vary depending on concentration.

Levoxyl:
Inactive Ingredients:
Microcrystalline cellulose, croscarmellose sodium and magnesium stearate. Color additives vary depending on concentration.

Levothyroxine:
Inactive Ingredients:
butylated hydroxyanisole, colloidal silicon dioxide, crospovidone, magnesium stearate, mannitol, microcrystalline cellulose, povidone, sodium lauryl sulfate and sucrose.

Okay so what does this mean? Well chemically cellulose dose not break down as easily in acidic environments. Silicon dioxide.. sand. Sucrose and confectioner's sugar easily digestable. Magnesium stearate is constant, but concentrations may vary. You have some additional binding agents and emulsifiers in the generics as well. So going with Synthroid you will have a purer composition, but there are those that react poorly to some of its emulsifiers and binders. All in all you do what works for you.

As you stated how will you know if it is the Synthroid or the Fe. So do an experiment.
Stick with your current med for four to six weeks while on the iron. This will allow you to get the benefit of the iron supplements in conjunction with your generic. Then if you feel no appreciable difference, try the Synthroid and give it 4-6 weeks and compare how you feel.

I wish I could tell you X is better than Y as a chemist.. but when dealing with individual body chemistries it is not easy.

Sincerely,
MG
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Old 01-04-2008, 10:57 AM   #6
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Re: Just got back from endo appt. Need your educated opinions, please

Thanks so much, MG
That was really interesing to me, thank you for taking the time to show me all that!! The decision is made, I went to pick up my generic Levothyroxine prescription a little while ago. It is a 3 month prescription. I also asked the pharmacist to return the Synthroid prescription paper which he did, since I didn't actually pick up the Rx yesterday. I will continue on the generic since all the blood levels for TSH and FreeT4 have come back good. So, I will stick with it for now. That SEEMED like such a big decision for me.....thanks to all of you and your great advice. I just have read so much on here how the Synthroid is superior, but maybe it wouldn't be for me, so I will keep plugging along, unless there is a reason to change for now. Thank you SO MUCH again, your input is invaluable to me!!
Lori

 
Old 01-04-2008, 01:53 PM   #7
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Re: Just got back from endo appt. Need your educated opinions, please

Today was day one of my generic T4 treatment plan. I didn't expect to notice any difference.. but I have had a few surprises.. nothing bad.

1) My HR has drop 20 beats a minute. I have been having heart palps and high pulse rate when sitting and standing.. laying down I am fine. These issues my Cardio was certain was thyroid based.. well this little change may prove it we will see if it holds.

2) The constant low throat ache and tightness that I have lived with constantly for six or so months actually went away for a few hours this morning .

3) Odd and may not be related.. but I thought I would ask other T4 supplement takers out there.. I have increased my time in the bathroom peeing today. Way more than usual. Is this common when starting thyroid meds if weight gained and bloating was one of your issues? Just curious.

Keep us posted on the Fe treatment. I am curious to see how it works out. I will let you know how well I tolerate the generics as well.. but I will be tickled if $5 every three months is all it cost to solve my thyroid woes.

Sincerely,
MG
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Old 01-04-2008, 03:28 PM   #8
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Re: Just got back from endo appt. Need your educated opinions, please

MG,
Great for you that you are seeing improvement of any sort already. It sounds like you have been thru the ringer. I had no issues with my thyroid before cancer, so I guess I was lucky. Amazing how much that little power gland does for us. I don't recall peeing any more than usual, myself. But, your heart rate to go down 20 beats per minute seems unbelievable, great for you!! I do wish you well on the generic, as well. I got some blood results back today, I will request a copy of all the results on Mon. The nurse said the cbc was normal, the calcium was back to 8.1, how can this differ so much in a week, if it always does, I will not worry so much next time. Ferritin still at 5, Hemoglobin is 11.6, is this ok? iron came in low at 32 on a range she said of 35-150, so a LITTLE low, or WAY TOO LOW? Thats all she told me and she commented to take Ferrous Sulfate and they will recheck in 4 weeks. Can you please comment on the labs? I don't worry at all about the calcium, but I am concerned about the Ferritin and hemoglobin, and iron. I am not up to researching this stuff tonight, I am kinda burned out on it. I will in the next few days, but do the labs seem ok? Thank you so much, MG and I wish you continued improvement and health on your new generic thyroid med!!
Lori

 
Old 01-04-2008, 04:38 PM   #9
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Re: Just got back from endo appt. Need your educated opinions, please

My iron hasn't been an issue yet for me, except when I was pregnant with my son. These were the guidelines I was given by the lab techs when looking over my lab chems..

Among healthy individuals, serum iron levels are 75 to 150 mcg/dL in men and 60 to 140 mcg/dL in women; total iron-binding capacity is 250 to 450 mcg/dL. Patients taking oral iron may have normal serum iron despite a deficiency; in these cases, a valid test requires cessation of iron therapy for 24 to 48 hours. Serum ferritin concentrations closely correlate with total body iron stores. The normal range in most laboratories is 30 to 300 ng/mL; the mean serum ferritin level is 88 ng/mL in men and 49 ng/mL in women. Low concentrations (<12 ng/mL) are specific for iron deficiency. Many feel best with ferritin levels between 70-90 ng/mL.

You are really anemic.. how is your B12? Sometimes you need to boost your B's to get the Fe to stick in your system as well. Our bodies exist in a delicate balance.

Reference ranges for a CBC(for women):

Hemoglobin: 11.7-15.7 g/dL (117-157 g/L)
Hematocrit: 35-47% (.35-.47 L/L)
RBC count: 3.8-5.2 x 106/mL (3.8-5.2 x 1012/L)
WBC count: 2.5-11.0 x 103/ml (2.5-11.0 x 109/L)
Platelet count: 150-440 x 103/mL (150-440 x 109/L)
MCV (red cell size): 80-100 fL

So your hemoglobin is not too low.. and it should rise as your anemia is corrected.

Their is a better iron source with better absorption out there.. the iron sulfate has a 20% absorption rate while the ferrous fumarate has an absorption of 33%. Just a thought if you want the most efficient form. I am not sure if the fumarate form needs a script or not.

Hope this helps.
MG
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Old 01-04-2008, 07:21 PM   #10
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Re: Just got back from endo appt. Need your educated opinions, please

Quote:
Originally Posted by mkgbrook View Post
My iron hasn't been an issue yet for me, except when I was pregnant with my son. These were the guidelines I was given by the lab techs when looking over my lab chems..

Among healthy individuals, serum iron levels are 75 to 150 mcg/dL in men and 60 to 140 mcg/dL in women; total iron-binding capacity is 250 to 450 mcg/dL. Patients taking oral iron may have normal serum iron despite a deficiency; in these cases, a valid test requires cessation of iron therapy for 24 to 48 hours. Serum ferritin concentrations closely correlate with total body iron stores. The normal range in most laboratories is 30 to 300 ng/mL; the mean serum ferritin level is 88 ng/mL in men and 49 ng/mL in women. Low concentrations (<12 ng/mL) are specific for iron deficiency. Many feel best with ferritin levels between 70-90 ng/mL.

You are really anemic.. how is your B12? Sometimes you need to boost your B's to get the Fe to stick in your system as well. Our bodies exist in a delicate balance.

Reference ranges for a CBC(for women):

Hemoglobin: 11.7-15.7 g/dL (117-157 g/L)
Hematocrit: 35-47% (.35-.47 L/L)
RBC count: 3.8-5.2 x 106/mL (3.8-5.2 x 1012/L)
WBC count: 2.5-11.0 x 103/ml (2.5-11.0 x 109/L)
Platelet count: 150-440 x 103/mL (150-440 x 109/L)
MCV (red cell size): 80-100 fL

So your hemoglobin is not too low.. and it should rise as your anemia is corrected.

Their is a better iron source with better absorption out there.. the iron sulfate has a 20% absorption rate while the ferrous fumarate has an absorption of 33%. Just a thought if you want the most efficient form. I am not sure if the fumarate form needs a script or not.

Hope this helps.
MG
Thanks again for your expertise, I appreciate it. They never actually said I was anemic, but obviously I am, I hope I can correct that, I have been through enough already. I guess I was glad the cbc was normal, and hemoglobin wasn't too far off, but that Ferritin concerns me. Oh well, I will follow the directions given and hopefully when I get labs in one month things will be improving. You know, no one would have ever even checked the Ferritin, I had requested it after reading about it on here...I have learned so much from everyone. I seriously don't know how people go through all this without the help of everyone on here. Thank you so much.
Take care,
Lori

 
Old 01-05-2008, 05:01 AM   #11
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Re: Just got back from endo appt. Need your educated opinions, please

Quote:
Originally Posted by Lori123 View Post
Thanks again for your expertise, I appreciate it. They never actually said I was anemic, but obviously I am, I hope I can correct that, I have been through enough already. I guess I was glad the cbc was normal, and hemoglobin wasn't too far off, but that Ferritin concerns me. Oh well, I will follow the directions given and hopefully when I get labs in one month things will be improving. You know, no one would have ever even checked the Ferritin, I had requested it after reading about it on here...I have learned so much from everyone. I seriously don't know how people go through all this without the help of everyone on here. Thank you so much.
Take care,
Lori
Lori,

You really aren't anemic yet. But you are very close. Your hemoglobin was right on the edge of normal for the lab ranges (it would have been low on the lab I use). Normal appears to be anywhere from 11.7 to 12.0 and that is the bottom end. You are at 11.6. Most doctors don't get too upset about that.

The ferritin, however, is bad. However, ferritin is not an indicator of anemic status. What is does say is that you are COMPLETELY iron deficient. There is a difference between having iron deficiency and having iron deficiency anemia. The anemia is the "end stage" of iron deficiency. You are *almost* there. Your iron should get you up fairly quickly if you can tolerate it.

 
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