Still Feeling Crappy

[copar]

To Anyone With Answers

I was on 120 mg of compounded thyroid for 7 weeks and took a blood test and got these results.

TSH 8.56 Ref. range 0.27-4.20
FT3 3.04 Ref. range 2.57-4.43
FT4 0.93 Ref. range 0.64-1.77

T3 1.17 Ref. range 0.80-2.00
T4 5.68 Ref. range 5.10-14.10


I have been diagnosed with Hashi's and these are the numbers I have from my doctor. My question is that my numbers don't seem so terrible but I still feel like I am dragging and my muscles ache something terrible. After this test I was upped 30 mg to 150 total, taken 90 in the A.M. and 60 in the afternoon around 2:00. I want to call and get my dosage increased more than 30 as I feel like it is going to take too long at this rate to feel better. I am a mother of young children and the holidays are coming, along with working part time and building a home (acting as the G.C.) I feel like 30 was a weak increase. I don't want to over increase but I so desperately want to feel better than I do now.

I think I should mention I feel much better than I did when I began but still not nearly good enough. I thought maybe someone out there would be kind enough to give me some advise.

Thanks very much to all of you.

[Armystolehim04]

Im sorry you don't feel great.I have Hashi's too! It sucks,I still haven't found a solution to mine either.I've been taking Raw Porcine Thyroid and feeling better.One thing i have learned that is that thyroid levels aren't "one size fits all".It depends on the individual person.I would call the DR up ask for it and if they don't help find someone else that will.I'm sorry i couldn't help much but hang in there things will get better!

[copar]

Thanks for the quick reply and encouraging words. I am and have always been a bit impatient, and have tried to keep this in mind when dealing with this process. I have gotten to the point where I just want to feel better and would gladly wait (well maybe not gladly) for this to happen as long as I wasn't waiting longer than necessary.

I was also wondering if most people felt a big difference the closer they got to their "sweet spot" By this I mean I am already on a pretty good dose and was wondering when the Amen and Hallelujah's were going to start. I just want to feel good some time before I am too old to realize I am well. I know patience....

[Unicorn212]

I am not Pam - I am sure she will chime in here soon - but you appear to be undermedicated. I ran your FT3 and FT4 through the calculator, and you are at about 25% of range on both. I believe FT3 should be at 75% and FT4 at 50%. I don't know if the 30 mg increase is going to be enough, but go with it and get retested in a few weeks to see where you are then.

[nonstickpam107]

Yes, I agree with Unicorn...you are way undermedicated. Compounded did NOT work for me either..it was like I was taking..nothing. And the compounder kept making mine with FIBER, which bound up any hormone I was getting at all.

How about you go to using synthetic T4 and Cytomel? Like..say...75mcg. T4 (Synthroid, Levoxyl...levothyroxine generic, any type) and half a 25mg. Cytomel in am, and half in early afternoon and test in four weeks (when testing, take your half 25mg. cytomel, then test four to five hours later)? Maybe it will make a difference....sometimes compounded is SO WEAK it just gets bound in the bloodstream.

Pam

[copar]

Thanks so much Unicorn and Pam for answering. I am lucky enough to have a doctor who prefers the natural method and is willing to keep increasing until I feel better but I am just wondering when that will be. I would go on Synthroid and Cytomel but thought the natural way was preferred. I am wondering if you are not getting your medications compounded what are you taking. I was under the impression that this was the only way to go. My doctor did mention something about getting my hormone meds sent from Canada. I would be willing to have them sent from the moon and pay for overnight delivery just to feel better. I would so appreciate it if you could tell me where and what you are taking. Thanks again, in advance, for taking the time to answer my questions.

[nonstickpam107]

Yes, get them from Canada (it will be called "Thyroid" and is same as Armour) if you can! Compounders are all different in what they use as 'delivery' method....and if it's not working...then I'd rather get mine from Canada (I'm now having NO problem getting Westhroid or reformulated Armour (don't want that though) from my local pharmacy. But...it's a small town, and not many are on natural, so DH and I benefit from that.

Pam

[copar]

Thanks so much Pam. I will call my doctor today and see if I can get some Westhroid here in the states, but if not see if he will call Canada as the compounding is not working well enough. I have such dark circles under my eyes that when I paid for groceries today the clerk asked if I was alright. Small town, same clerk for many years and I guess I look worse than I thought. I have both my fingers and toes crossed that this time next month it is not such a strugle to get out of bed. Thanks again for all your help.

[Doggygirl]

Women's International Pharmacy has (or had!) some Westhroid and some Armour recently. They also compound, but I was able to get 30 2 grain tabs of Westhroid with a doc's prescription of course.

Not sure if that's helpful...but just in case.

Best wishes,

DG

Geez it will be good when this shortage is finally over!!

[copar]

Thanks for responding Doggiegirl. I have tracked some down in Arizona but don't know if he will still have it available when my doc calls it in tomorrow. I live in New York and he is willing to ship it. Funny thing about tracking it down, I talked to the pharamacy owner and he used to own a few pharamacies in my hometown and surrounding area. I worked at one of his pharamacies in high school but I did not remember him. These days I am lucky if I can remember my kids names as my mind is still foggy.

Thanks again for the info. as I may need it. I just can't wait until I can feel better. It seems a lot longer than it has actually been, but when you are feeling this crappy time seems to stand still. I will let everyone know how I make out.

[nonstickpam107]

You live in NY? Can I have the name and particulars of your doctor (there are hardly NO docs in NYS that will Rx. natural thyroid and if they do, they usually don't give enough to make a difference..I'm FROM NYS and didn't get treatment till I moved to another state. Many write me from NYS asking for doc's names. I'd be much obliged.

BTW..your numbers ARE TERRIBLE, sorry. My doc keeps my TSH at .23 (not a typo), my FT4 just under midway of lab range and my FT3 at 3/4 to all the way to top of range.

Pam

[copar]

Pam,

I did not check the message board for a few days, so I did not see your request, sorry. It would be my pleasure to give you his name and information. I think I should tell you a little about him first. He does prefer to script natural but does not test for free T3 and T4 unless you ask him to add it to the blood work. If you ask he will add (within reason I am sure) anything you ask him to. I find him quite good as he asks a lot of questions and takes a good bit of time at each appointment. He says he will keep adjusting the dose until I feel back to myself. When I asked him how I would know if I had too much he said I would feel the side effects of hyperthyroid. He said then he goes down one dose and that should be about correct. He does take blood every 4 to 6 weeks to check on vitamin levels as well as tsh levels. He feels very strongly about maintaining good vitamin levels, and will insist on the patient taking supplements if their levels are low.

My sister became hypo the same time I did, it is almost sur real. She is 6 years younger but became hypo within 2 weeks of me going out of my mind with the symptoms. She also goes to him and is quite happy.

I don't know if I am supposed to post the information here or do I have to private message you. I don't know what the rules are about this kind of thing on this board. Let me know and I will post immediately. Thanks again for your help and I go for a follow up visit this Tuesday and hopefully I will be able to find some nature thyroid rather than the compounded generic.

[copar]

Pam,

I forgot to mention that I live on the New York, New Jersey boarder and he is in Bergen County New Jersey. Bergen is on the very north eastern end of Jersey right on the New York boarder. Don't know if you still need some one in that area. Thanks

[nonstickpam107]

Um, you might want to ask the doc if it's ok if you give his name as a natural thyroid hormone Rx'ing doc first.

Pam

[copar]

I will see him on Tuesday and ask. If he says yes, which I am pretty sure he will do I just post it here? Thanks

[nonstickpam107]

Yes, that would be fine...just make sure he wants to be on a list of docs who are Rx'ing natural thyroid OR synthetic T4/T3 (Cytomel) combo. Some docs don't want to be listed...and some don't want to be that BUSY once I post names from the list But I'd LOVE to have another listing for that area (and so would LOTS of patients).

Pam

[copar]

Pam,

Saw the doc today and he said he feels it is his purpose on this earth is to help those who need him. He agreed to be put on your list. Here is all his information.

Dr. Thomas Cacciola
403 Fairview Ave
Paramus, N.J. 07652
Phone: 201-261-8386
Fax: 201-261-8827

I hope this helps someone who needs a great doctor. He is a gentle and kind man who truly believes in natural thyroid. If a person want the synthetic he does Rx that with Cytomel as well but prefers the natural. He said today that he thinks in years to come we will find out the natural has more than just T1,2,3,4. He believes there is more to gain from natural than we even know at this point.

Hope this helps,
Copar

[nonstickpam107]

What a help indeed! Thanks so very much. I'm sure that someone near this doctor will be thrilled!! Tell Dr. Cacciola many thanks for 'thinking outside the box'.

Please write what you wrote here....so others can know where to go for good treatment...(you'll see a box to the right that says 'put your doctor on the list'...
http://www.thyroid-info.com/topdrs/newjersey.htm

Pam

[copar]

Pam,

Thanks for the link and I posted detailed information.


Copar

[nonstickpam107]

Did you read down the list where it says that Dr. C is 'no longer listed'? I wonder why...most the time the doctors ask to be taken OFF the lists because way too many patients show up...then there is always 'the one patient'. You know. The one patient who is NOT hypothyroid, but goes to the doc for some thyroid pills 'to lose weight'. Sigh.

Pam

[copar]

Pam,

I did not see that before I wrote my recommendation. I asked him before I added his name and he was willing, so I don't think he was the one that asked to be taken off the list.

I don't know what to say other than I think he is a very good, caring, open minded, thyroid doctor who will do all he can for a patient and is totally into Rx natural thyroid. I am sure he is not perfect but who is. If someone asks you for a recommendation you could feel confident in his ability. I will post a question on that site to see if I can figure out why it says he is no longer listed. VERY INTERESTING...

My labs came back yesterday much better than the ones I had posted. I have to tell you I was very upset thinking he is not going to increase my meds as I am in the middle ranges. He asked me how I was feeling, told him I felt crappy, he looked at my labs and Rx a higher dose. He then gave me an appointment for 4 weeks for blood work and 6 weeks for next visit. He told me not to worry, unless I show hyper symptoms he will increase my meds until I feel like my old self. That sounds pretty good to me.

He also does all your vitamin levels and has you bring in what you are taking and he goes over all of it with you. After reading labs he increases some, and had me change brands on one or two. It is a shame he is not on that list.

Sorry so long but thought the particulars were important.

Copar

[nonstickpam107]

They ARE important. Hmmm, I was just wondering is all. If a doc 'pushes supplements' and you don't buy them, that might lead to someone taking his name off I suppose, but from all you've told me, he sounds on the 'up and up' to me. I hope they list YOUR recommendation, and I'll certainly recommend him to folks in that area! Thank you so much for posting Copar.

Pam