Thyroid tests are normal?? Are you sure?

[nonstickpam107]

Maycee..let me know the results (with lab ranges, of course)...email me if you want.

Pam

[Maycee]

Pam, no lab ranges yet but, am so excited, I just have to share... I feel so vindicated since getting back from my Osteopath today ~ I knew I would be nervous going in, so I sat down beforehand and typewrote a letter to her, and in just a couple paragraphs told her my story, and how many doctors Id been to, along with labs to back everything up, and what I expected. Well, not only did she agree with me wholeheartedly on just about every point, but she backed it up by writing me up a brand new bunch of labs, to test my estrodial, progestone, testostarone and T3s and T4s, but she asked me how Id like to go on (maintenance doses of) Vivelle Dot for a few months in addition to either keeping my bio-identical prometrium cream or putting me on prometrium tabs 200 mg 14 days a month!! in addition to some evening primrose oil, Twinlabs supps and Poly Iron 150's. Well I of course told her I was already on the Twinlabs and PolyIron..... but

OMG... I'm just stunned to have found such a great doctor!! (actually this is a Nurse Practitioner, who works with an Osteopath, but she is wonderful!) if only there was a website I could add her name to for others to read and to partake in, I would!) There was something she said in relation to the thyroid that got me wondering, tho.... when I was telling her all my thyroid blood tests had come back "normal" so far including antibodies, but that I was still having awful thyroiditis-type attacks, as well the cold nodule, etc etc, she said I might be suffering from Wilson's Syndrome, and should still consider either the Synthroid or Armour. What is your take on the Wilson's Syndrome? I guess I haven't heard very much about this, and was just wondering if the synthroid and/or armour would be very helpful here. She did agree however that you have to have all your hormones "balanced" in order to support your thyroid, and that she wanted new blood tests drawn in 3 months. And if it weren't for watching, listening, reading and re-reading all the GREAT advise that can be found here, I might never have found it, so thanks Pam and everyone!!

Also since I was a little afraid of the prometrium tabs as opposed to the cream, I was wondering if there was anyone else who was already taking them and what your experience was with it? (as Id heard it can be hard on your liver?)

It feels soo good to finally be listened to by a doctor, yippee!!

Maycee

[nonstickpam107]

You don't want to know my 'take' on Wilsons (it doesn't exist..I can put you in touch with over 1000 females who have done the graduated T3 as per Wilson's and are STILL to this DAY being treated for real hypothyroidism). Almost every woman I've met who is put on T3 ONLY therapy is miserable and eventually HAS to go on both T4 and T3. Furthermore, if you have Hashimoto's, you do NOT, CAN NOT have Wilson's. Wilson's Syndrome clearly states that it is NOT hypothyroidism, it is NOT Hashi's...so if you are hypothyroid/Hashi's, you aren't Wilson's. Synthroid is NEVER used in Wilson's...Wilson's patients have good FT4 tests, it's their T3 that isn't even THERE. Your NP needs to re read the Wilson's protocol. If she means not converting T4 to sufficient T3...that's called hypothyroidism. Armour by itself would be the best for you to start.

EPO binds thyroid hormones. Most NP's don't know that (unless they have specialized training in endocrinology...).

Take the cream...it bypasses the liver. Some women ONLY need to balance the steroid hormones, and then the thyroid follows along nicely....but only in about 5% of the cases. Glad you found someone. Will you kindly give me this doc's info in a PM...I have a friend near you who is looking for a good doc who will do FREE T's (and don't let them do just Total T4 and T3 on ya...make them do Free T's please...let me know if they will).

Pam

[TeaLeaf]

I'll pipe in with a question about all those CLA/GLA combos that are becoming popular. I have Hashimoto's and am taking .2 tablets of Synthroid a day. After two weeks of taking Evening Primrose Oil, I noticed my hypo symptoms coming back. A dear friend on the board found your thread and gave me the scoop.

I've surfed all over trying to find out if Borage Oil is safe to take with thyroid replacement and haven't had any definitive luck. I've stopped taking the EPO until I find a safe alternative.

Thanks so much for your expertise and time!

[nonstickpam107]

Wow, that's a HUGE amount of synthetic T4!! Are you converting ANY of it to FT3?? What do your FT3 blood tests look like??? If you aren't getting FT3...you need to. I could take five hundred mcg. a day of synthetic T4 but it won't help...I don't convert ANY of the T4 in to T3. I take Armour thyroid, has the T3 already in it (read energy, weightloss, like to exercise, no brainfog here).

Pam

[TeaLeaf]

Pam, thanks for your reply! I don't have the last full set of lab results, but I know I've been holding at this dose for about a year now with good T3 and free T4 levels. I've had this condition since I was 12 and I have ALWAYS needed high levels of replacement hormone. At one point in my 20s I was on .8! My stats are a moving target...I'm up and down and we have to test every other month to make sure I'm taking the appropriate amount. Whenever I lose weight, I need less and whenever I gain weight I tend to need more. I need to stop the yo-yoing!

I've never heard of Armour until I read this board! It's always been Synthroid or Thyroxine for me. I'll e-mail my doc and have him send me the last panel and ask him about Armour.

Thanks again!

[nonstickpam107]

Well, ideally, with us being female, your Free T4 should be about midway or a little higher in range, and your FT3 should be in HIGHEST range for some (me). Oh, and Total T3 doesn't tell much...it tells how much is 'floating around' in your body, it's the Free T3 (FT3) that tells how much you are actually USING/GETTING. Oh, and a T3 Uptake is actually another T4 test (another one, unnecessary...) for binding, and doesn't tell you ANYTHING about your T3 hormone level.

Whenever women are taking hormones (birth control too...) you HAVE to have Free T's...cuz the hormone binds the Total T's (TT4, TT3).

MOST doctors when they see their patient on such a high dose, will check the FT3'''and that's when they find out that they aren't converting...those patients keep on taking more T4 and peeing half of it out...cuz they can't convert it to T3.

Oh, some docs are good at dosing with both synthetic T4 AND synthetic T3 (it's called Cytomel). Some HATE Armour and believe the drug reps 'stories' about it. Doc's who do T3 Uptake on a HYPO patient...um,,,are a 'dead giveaway' that they don't understand conversion and T3.

Pam

[nonstickpam107]

Well, ideally, with us being female, your Free T4 should be about midway or a little higher in range, and your FT3 should be in HIGHEST range for some (me). Oh, and Total T3 doesn't tell much...it tells how much is 'floating around' in your body, it's the Free T3 (FT3) that tells how much you are actually USING/GETTING. Oh, and a T3 Uptake is actually another T4 test (another one, unnecessary...) for binding, and doesn't tell you ANYTHING about your T3 hormone level.

Whenever women are taking hormones (birth control too...) you HAVE to have Free T's...cuz the hormone binds the Total T's (TT4, TT3).

MOST doctors when they see their patient on such a high dose, will check the FT3'''and that's when they find out that they aren't converting...those patients keep on taking more T4 and peeing half of it out...cuz they can't convert it to T3.

Oh, some docs are good at dosing with both synthetic T4 AND synthetic T3 (it's called Cytomel). Some HATE Armour and believe the drug reps 'stories' about it. Doc's who do T3 Uptake on a HYPO patient...um,,,are a 'dead giveaway' that they don't understand conversion and T3.

Want to know about Armour? www.armourthyroid.com Do your research, I've met a ton of docs who 'believe' the drug reps (the drug reps tell tall tales...like "Armour will give you Mad Cow disease!~!!" Armour is a pig product, not cow).

Pam

[TeaLeaf]

Well, you just busted the doc! He does a T3 uptake every time I get my labs done. I e-mailed him about what we discussed and said he wants to see me for a recheck at 11:15 today. So I'll pop in, give him a little blood and talk about Armour.

I'll let you know if I get the "Mad Cow Disease" talk!

Have I said thank you to you yet? Thank you! Thank you!

[nonstickpam107]

You are so welcome. But...if you are going to take T3 (in Armour...please read their website) or synthetic you MUST get a FT3 test (and a FT4 too, ideally) to 'guage' if you need it or not. Some don't. But I haven't ever met a woman on THAT much T4 whose FT3 was in 'good levels', lol.

Now, if you have trouble with the doc about T3 (I seriously would not WANT a doc to give me T3 if he didn't even know which test was for it! ACKK!)...

Oh, and most who start on Cytomel along WITH T4...they back the T4 off (say 150mcg.) and start on 5mg. Ctyomel twice a day...then they titrate up from that. Oh, and your TSH means nothing once you are medicated...it will be VERY low with T3 added, so if your doc is one that's a 'TSH worshipper'...you may have trouble there.

Pam

[TeaLeaf]

Had a full set of labs done today and should have the results back in 2-3 days. Because I just stopped taking the Evening Primrose Oil on Sunday, the numbers may be a bit askew.

We talked about the Armour tablets. No warnings about Mad Cow Disease, either! He said he has prescribed Armour to other hypothyroid patients, and said that they reported increased energy levels and seemed to prefer it to the synthetic hormone. I wondered why he never brought it up with me and said he thought I was doing okay on the levothyroxine.

I never complained much about my symptoms because I figured that being tired, cold and sluggish kinda went with the territory of having hypothyroid and being morbidly obese. My thinking was that he already had me on medication, what else could he do? I didn't realize there was MORE than one type of replacement therapy available.

So I'll pop back by when the labs are back and post them. Thanks again and have a great evening!

[Midnight Blue]

I hope it's not too aggravating to everyone, but I need to ask this question. I know the answer is somewhere on this forum, but I have yet to find it.

What is the problem or potential problem with taking EPO and thyroid medication? I take EPO and am currently taking 88 mcg levothyroxin right now. I am headed to the Dr. in the morning for some more "bloodletting" (not my favorite part).

Thanks in advance for giving me info.

[nonstickpam107]

Tamara!! Wow, that's fabulous@!!! Woohoo!! But...now I'm wondering just how MANY thyroid patients don't know enough to 'complain', lol. If you really like a medical provider, it's also difficult to complain, isn't it? Oh, I sure hope this is the start of something 'new'. Oh, and lest I forget, MOST of us who were on large dosages of T4...start at about 2.5 grains of Armour and then titrate up. It doesn't go by weight! It goes by Free T's. And show it to the doc, cuz many who ARE on Armour are underdosed. Let me know how you are doing....it's always exciting to hear about a pro active patient and great listening doctor.

Blue, EPO has phytoestrogens in it. Any product that has estrogen in it (this includes birth control pills, and soy) will 'bind' and make part of your thyroid hormone 'unusable'. So, it's especially important to get Free T4 and Free T3 tests and NOT just TSH...TSH isn't as 'telling' as taking the actual hormone levels. My doctor upped my Armour Thyroid to 3 grains (from 2.5) because of my bio identical HRT I take...it was binding my hormone and driving my FT's down (I want a FT4 of about midway of range, and a FT3 of anywhere from midway to highest quartile to feel great). Very easy with my thyroidologist because he 'knows' all these tests and how to interpret. Maybe NOT so easy with a doctor who just does a test on the pituitary and is a TSH worshipper.

Pam

[TeaLeaf]

The first thyroid labs came back and I asked the doctor to e-mail me all the results. He usually has his "desk" time after the office closes at 6:00PM, so I'll hopefully have something soon. His brief e-mail to me just said "they're high" with no explanation as to whether the numbers were high or the thyroid function was high.

The details, doc, the details!

[Midnight Blue]

Pam, thank you for telling me about that -- I am sorry to hear that about the EPO. I think it was helping me with PMS symptoms and possibly with a few other things, but I definitely don't want to suppress my thyroid any more.

[TeaLeaf]

As I thought, poor doctor is burning the midnight oil. He just sent me two of the results (but not the Free T3...grrrr). My Free T4 is 1.66 and he says this is normal while my TSH is suppressed at < 0.03. He suggests I start Armour at 1 1/2 grains (remember, I'm on .2 Levothyroxine right now) since he thinks I may be getting too much replacement hormone.

I don't understand how this can be with all the hypo symptoms that I'm having!

[nonstickpam107]

You MUST see a FT3..and you MUST get a COPY of that...I need to see lab ranges...cuz they are all different for each lab. You can have hugely high FT4 and if it isn't converting to high FT3...you have a problem. You also have a problem if you are over the top of lab range (many are at the very top, but not over, and TSH doesn't MATTER, it's gonna be suppressed with incoming hormone). You need lab ranges for the FT4 and FT3 and you need that FT3, if he didn't do one, he doesn't 'get it'.

Pam

[Midnight Blue]

Pam -- I am so new to this and, I confess, at times I am not the most aggressive of persons. That said, my health IS very important to me and I want to be a good steward of it so that I can have some enjoyment of the years of my life.

So, here is my situation. I live in the Boston area and am seeing a DR. that my co-workers (who also are thyroid patients) are very happy with. I am new to the area and was looking for a good primary care physician and my co-workers just raved about her and gave me her number as she was accepting new patients.

Yesterday, I went to have my blood drawn to see if I need more levothyroxin. I understand that this is just T4. This morning I get a call from my DR. saying my number is at 2 and she likes to see it between 1 and 2, so she will increase my medication today.

I did not ask her if she is doing the FT4 and FT3, but I am assuming she is not since she got my results so quickly. She has not given me copies of my lab tests yet, but I think I am going to ask for them. I want to know exactly what my numbers are.

Let me add, I have seen dramatic improvement in myself since beginning T4. Everything that was bothering me (a huge list) has improved, so I am hesitant to change DRs though I am feeling like she may not be getting the whole picture and making sure I have what I REALLY need. Some symptoms are still there and may always be -- I don't know. The thing that bothers me is the thought of not optimizing my health from a quality of life standpoint. I want to feel as good as possible. I need to so I can survive and do all the things I need to without falling over or collapsing in a mental panic.

Anyway, I am disturbed by the fact that she said she wants me to be between 1 & 2 instead of 0 & 1. I am also bothered by the fact that the mental part of this disease (she said I have Hashimoto's) has not abated. I still have days when I feel depressed/panicked to the extreme and it makes me not want to leave the house.

I would love to hear your opinion and if you think my instincts (which are telling me I may have to search for another DR) are on target. I would love to hear any thoughts you have about my situation. Thanks

[TeaLeaf]

[color=darkslateblue]Midnight Blue[/color] I've had Hashimoto's since I was 12 (I'm 41 now) and still battle with brain fog, depression, lethargy and "I don't want to leave the house" syndrome. I'm never sure if it's because I really AM depressed or if it's the Hashi's. With Pam's help, my research, and my assertiveness with the doc, I am hoping to see some improvement with better thyroid replacement on Armour. I hope you start feeling better on more Levothyroxin too!

[color=purple]Pam[/color] HA! Doc didn't even ORDER a FT3 as I had asked him. He suggested that I start 2 grains of Armour now and retest with an FT3 & FT4 on March 1st. Won't that skew the numbers?

[nonstickpam107]

Nope, Tealeaf, that's perfect...two grains to start (and here's a little 'hint'...since there's T3 in it, you'll want to split that 2 grain tab and take half in the am, the other half about 2/3pm...T3 only is active for about 6 hours or so, so splitting it gives me energy ALL day).

Midnight...are you talking about TSH? Between 1 and 2??? OMG, my TSH is well under a 1 (.034) and do fine with it there. Jeez...I can't believe someone is telling another person what THEIR TSH should be, you go by FT's.

You might want to find YOUR state Yahoo thyroid support group and join it, find out who has a doc who does Armour and proper testing.

Pam

[Midnight Blue]

Originally Posted by TeaLeaf

[color=darkslateblue]Midnight Blue[/color] I've had Hashimoto's since I was 12 (I'm 41 now) and still battle with brain fog, depression, lethargy and "I don't want to leave the house" syndrome. I'm never sure if it's because I really AM depressed or if it's the Hashi's. With Pam's help, my research, and my assertiveness with the doc, I am hoping to see some improvement with better thyroid replacement on Armour. I hope you start feeling better on more Levothyroxin too!

Thanks TeaLeaf! I can't imagine what you've been through if you've been dealing with this since the age of 12. I was just diagnosed this past April -- by the same Dr. I am seeing now. I am 39. You have hit on one big thing I have been trying to figure out for myself -- if I am REALLY depressed or if this is simply thyroid-related. What I am thinking right now is that I have been stressed/depressed and that the thyroid problem just intensifies the whole thing and makes it much worse than it would be otherwise. I hope you see much improvement as well and find the right DR to get you the treatment you need. This is a very bumpy road, isn't it?

This seems like a minefield to me, medically speaking. There is no set pattern of treatment, no "cure", no definitive answers. It isn't like having a respiratory infection and you take a round of antibiotics and then you're better. Or having an allergy and taking shots or pills to take care of it. Hashi's is so individual, so treatment has to also be individual. Most of the DRs out there don't seem to have a handle on this, so it's difficult to find one who will really help you. That really bothers me and makes me feel even more anxious. But, with luck and research and some backbone, hopefully I will find someone to give me the proper help. It helps me a lot to read of the experiences and opinions of others, so I really appreciate all who post here.

[Midnight Blue]

Originally Posted by nonstickpam107

Midnight...are you talking about TSH? Between 1 and 2??? OMG, my TSH is well under a 1 (.034) and do fine with it there. Jeez...I can't believe someone is telling another person what THEIR TSH should be, you go by FT's.

You might want to find YOUR state Yahoo thyroid support group and join it, find out who has a doc who does Armour and proper testing.

Pam -- I am talking about TSH, amazingly enough! Everything I've read emphasizes the importance of finding a DR who will go by your symptoms and the way you feel and not just look at test results. What really puzzles me is that this DR also has Hashi's. I feel that, in that case, she should know better. I was such a wreck before and I feel that just by giving me a diagnosis and getting me started on treatment, she has helped me so much. I feel a little disheartened by how things have progressed since then however.

I have a lot to learn about this and can clearly see that I will have to become an "expert" about my own health and forcefully advocate for myself, since there seems to be shortage of "top docs" out there in the thyroid field.

I want to thank you again for sharing your knowledge here -- it is nice to be able to read your posts and learn from them. I will look into a thyroid support group in my area. I also told my husband today that I may have to go into Boston proper and see one of the doctors there (listed on M. Shomons top docs).

[nonstickpam107]

I'd be looking at www.armourthyroid.com website and using the docfinder feature there FIRST in the Boston area (yep, difficult to get a good doc there too). Several of the 'Top Doc's in MY area have kudos like "This doctor listens to me!!" but later have found out the doc listens...and then does whatever the DOCTOR wants. Heck with that...I can find someone to 'listen' to me, lol.

Good luck to you...and do your research...at Shomons site, as well as here is one written BY docs FOR docs, perhaps YOUR doctor would like it: www.thyroidmanager.org

Pam

[Leenie]

Hiya Pam, how ya doing? Hope all goes well with your next round of doctor's visits.

I got my latest labs back last week, FT3 went down just a bit from 283 to 280 (range 230-420) so am increasing to 1 1/2 grains Armour and going to try the compounded/time released. My question is, does the compounded/timed release still need to be taken on an empty stomach, or is that necessary?

[nonstickpam107]

I tried to raise my FT3 with the compounded Armour and got nowhere fast. Doesn't matter how ya take it...the methylcellulose (fiber) in the compound just defeated the purpose for me and many others. The only way to raise FT3 is to raise the dosage...and RAISE it...taking the compound was like slipping right back to the lower dose. I HAD to go back to regular Armour, and dose 2 to 3 times a day (split that dosage). Going up 1/2 grain and THEN compounding it will be like having the same dose. We've all been there with the compound and it's weak. Some docs don't realize that MOST of us need between 2.5 and 4.5 to raise the FT3 to good range.

I have to get clearance from the cardiologist this week (I'm NOT doing any 'put some money in the doc's pocket' stress tests again...he'll either sign clearance or I'll find another who will). I found an anesthesiologist who will do spinal and keep me awake in OR/surgery. Hope they give me a monitor to watch on too!!

Pam

[Leenie]

Thanks Pam! I'm going up 1/2 grain at a time. I wanted to try the timed release just 'cause it's easier but I'll go back to the other and save that for later.

Yeah my cardiologist said those stress tests are pretty unreliable anyway and don't really tell them what they need to know. Awesome on finding someone that will do a spinal. Oh a monitor to watch! At my last TV Ultrasound I was watching the monitor and said "aweeee there's the baby". Poor ultrasound tech didn't know what to say hehehe.

[inatic]

Leenie, i heard lots of folks say that the time release doesnt work so well. Im using reg cytomel. My doc said the same thing, but that doesnt mean anything

[nonstickpam107]

That's pretty funny Leenie, lol and I hope the tech had a sense of humor (doesn't sound like it though). All I said was "Holy CRAP!! What's THAT?????"

Yeah, they do something different with time released Cytomel than how they compound Armour. Some doc's actually think it takes the impurities out of the Armour but all the compounders tell me they just crush it, put it with fiber (methylcellulose, which, let's remember, actually BINDS thyroid hormone and why they tell you NOT to take your dosage WITH fiber in the am...???) and charge three times as much (heh heh). My compounder said she's NEVER seen anyone actually stay with the timed released Armour after they see their FT's. She's been compounding for 22 years.

Pam

[Galoutofdixie]

Time for a little bump!

Chris

[TeaLeaf]

Bump bump!

I'm going in for my one month labs after switching from .2 Levothyroxin to 2 Grains of Armour on February 1st. I know that I FEEL much better. I've actually been blessed with enough energy to take 30-45 minute walks in the morning for the past two weeks!

I hope my levels don't show me as being "over-active" and have him try to talk me into taking less! I'll be posting when I get the results on Thursday or Friday and I'll make sure to get the lab ranges as well.

Take care everyone!