VERY bad news from my awesome thyroid doc

[Su11]

It wasn't a 'direct' message, rather that I couldn't get the dose that worked for me because of the lab, despite this being a previously symptom based practice. I also know of a doctor that ran into trouble with the board over this and decided to move out of state several years ago. I think he attracted attention because of his publications. I really prefer not to give out names, the docs go through so much just to try to treat these problems.

[Peaceash]

not a problem - thanks very much.

[lark595]

Hi everyone I'm not a regular poster but I love this board.
I too live in Oregon and have been trying to find someone to treat me with T3, since I don't convert t4 and end up more hypo when I take t4.
Does anyone know any naturopaths that are knowledgeable about thyroid?

Thanks
Kathy

[lark595]

I hit the reply button too soon - Mr Google found the Bend Thryoid Center, run by Dr Tom Lind, a chiropractor.

Does anyone know anything about him?

Thanks
Kathy

[Lokarbiebarbie]

To my knowledge, a chiropractor cannot give hormones. They usually give 'supplements'.

[Mazella09]

Letter from the Publisher (January 2011) Townsend Letter for Doctors & Patients
The State of Oregon v. John E. Gambee, MD

John Gambee, MD is a physician practicing in Eugene, Oregon, who subscribes to much of the thinking espoused by Barnes. Gambee believes that the diagnosis of hypothyroidism is a clinical diagnosis made by understanding the patient history, examining the patient, assessing basal temperature, measuring thyroid functioning, and treating the patient with thyroid USP supplement. Unfortunately, the Oregon Medical Board does not share such philosophies. The Oregon board approves of thyroid diagnosis being made only based on abnormal TSH and free T4 testing.

[emily1965]

Originally Posted by lark595

I hit the reply button too soon - Mr Google found the Bend Thryoid Center, run by Dr Tom Lind, a chiropractor.

Does anyone know anything about him?

Thanks
Kathy

A chiropractor cannot write prescriptions. Hypo or hyper thyroid conditions require a prescription. Thyroid "supplements" are quackery at best and dangerous at worst. Chiropractors generallly fall into one of two groups 1) Those that believe that spinal adjustments can treat acute pain caused by misalignment and can enhance your life by keeping your spine in good working order and 2) Those the believe they can cure everyone of every malody under the sun with spinal adjustments adn supplements. Run far and fast from group number 2.

Even Nautropaths know that thyroid requires a prescription medication and they always try to avoid pharma in lieu of supplents whenever possible.

[emily1965]

Originally Posted by Mazella09

Letter from the Publisher (January 2011) Townsend Letter for Doctors & Patients
The State of Oregon v. John E. Gambee, MD

No wonder my doctor is scared. This article was from last January. I wonder where the case stands. Stuff can take forever to wind through the court system.

Thank God in the meantime that the Oregon Board of Nautropathics completely disagree with the medical board's position. I don't know why they are pulling this crap now, when it's teh general movement across the country to accept that TSH is B.S.. Hell, 50 years ago a TSH test didn't even exist and symptoms were the only way to diagnose hypothyroid.

[Leo41]

This must be a specific state issue--hopefully not in too many states.

I was diagnosed about 10 years ago, and at the time my primary doctor kept insisting that I had no thyroid issues (based solely on lab tests), but my symptoms kept escalating. My dominant issue was crushing fatigue, but I learned from some pre-surgical testing (for carpal tunnel, which I later learned was also a result of my hypothyroidism) that my heart rate was also abnormally low.

When I could barely function through a work day, I self-referred to an endo, and she immediately treated me based on symptoms alone (although she ordered lab work). She told me (and my current endo confirms this) that many hypothyroid patients initially have symptoms (even severe symptoms) while their lab results appear 'normal.' It even has a name--sub-clinical hypothyroidism.

Every good thyroid doctor should treat based on a combination of labs and symptoms. I know several people whose TSH was in the 2.0-3.0 range (considered totally normal) but who were severely hypothyroid.

I also know that doctors are plagued by both insurance companies and medical societies who limit their choices based on stupidity--which seems to be what's happening here.

[GME]

This is the real "War on Women" we keep hearing about and will only get worse as we get more bueracratic involvement in our healthcare.

[Mazella09]

Originally Posted by emily1965

No wonder my doctor is scared. This article was from last January. I wonder where the case stands. Stuff can take forever to wind through the court system.

Thank God in the meantime that the Oregon Board of Nautropathics completely disagree with the medical board's position. I don't know why they are pulling this crap now, when it's teh general movement across the country to accept that TSH is B.S.. Hell, 50 years ago a TSH test didn't even exist and symptoms were the only way to diagnose hypothyroid.

I know someone very well who travels to another state to a doc that prescribes it. (Hashimotos) T3 was a LIFESAVER, where synthroid alone did zip. Can you believe it? Had to go to another STATE!

I have heard many people are using it as a weight loss tool. This is sad for they are clearly making it difficult for those that truly need the medicine.

I may be a tad of a conspiracy theory believer (some, not all ), but for the medical board of ANY state to go after doctors for something like this is unconscionable and borders on extremism, imo.

Feels as if "they" want - REALLY WANT - to keep us all feeling bad.

Just a theory...

[Seeking]

Before jumping to any conclusions, I have a few questions about this...

1. How do you guys define "hypothyroidism?" Doctors and scientists will only accept a scientific definition that includes solid numbers; they do not accept symptoms by themselves, because symptoms are subjective, not objective, evidence. Symptoms point to a problem but that problem could be anything.

2. If the medical boards are only willing to diagnose thyroid issues based on TSH and T4, what is their reasoning behind this? Do they end up getting sued (thus excessive liability) when their doctors treat thyroid conditions based on other tests?

3. What if you are treated and prescribed medication for your condition based on your symptoms instead of your numbers, but it's not truly helping you? Have you considered that "feeling better" may not necessarily mean you are being treated accurately? What if the decrease in symptoms is not actually correlating to the problem being properly addressed? Perhaps the problem is being covered up with medication instead of treated...

"I feel better; therefore my illness is being treated instead of covered up" may not be an accurate statement.

I don't know; I'm just asking. Because in my experience, when people jump on the conspiracy bandwagon, they are being led astray. I've seen it too many times.

This is just one example. Recently, I watched a video about hurricane Katrina in which the host tries to tell people that the police were busting in doors for sole the purpose of confiscating people's guns. The video utilized several news clips and soundbites in the wrong context to make the viewers think that they were saying "we're coming to take your guns." But really that is not what they were saying. I asked several people and looked several things up to see what the clips were really about and found that they were completely taken out of context for the purpose of making the viewer think that the police and military were taking away people's guns.

[Mazella09]

In the case for the person I KNOW - the local docs based EVERYTHING on BLOOD RESULTS ONLY and felt that SYNTHROID was THE ONLY WAY TO GO. She was on synthroid and the generic equivalent for four years and truly suffering. She saw a new doctor that prescribed cytomel along with the synthroid and for the first time since being dxd with Hashimoto's she felt like her old self.

Then, the sensitivities to gluten, corn, soy, casein were found and the diet changes made her feel even BETTER.

These docs? Don't care how the patient feels. Goes strictly by lab numbers. ONLY in our case. (She was also on antibiotics for fatigue for they claimed it could be a virus. Steroids for pain and inflammation (her joints began to hurt alot). Anti - depressants for not feeling "right." Although, NO BLOOD TEST REVEALED ANY SUCH AILMENT to be given such a strange cocktail of prescriptions )

She is also presently being treated for fungal overgrowth and Candida. She is feeling remarkable and her workout regimen is beginning to show results.

ETA: Doctors aren't required to say WHY they treat the way they do and MOST will not tell. Drugs are BIG business. They are trained to give drugs.IMO Her physician INSISTED on Gardasil. She was fighting mono while given Round #1. Then all heck broke loose. She became sicker and sicker. Her doctor has since left the medical profession. The batch of Round 1 given was BAD. Go figure. They never even made sure she was healthy enough to get a bogus vaccination. Doctors are sometimes stupid in my opinion.

[Mazella09]

Before jumping to any conclusions, I have a few questions about this...

1. How do you guys define "hypothyroidism?" Doctors and scientists will only accept a scientific definition that includes solid numbers; they do not accept symptoms by themselves, because symptoms are subjective, not objective, evidence. Symptoms point to a problem but that problem could be anything.

2. If the medical boards are only willing to diagnose thyroid issues based on TSH and T4, what is their reasoning behind this? Do they end up getting sued (thus excessive liability) when their doctors treat thyroid conditions based on other tests?

3. What if you are treated and prescribed medication for your condition based on your symptoms instead of your numbers, but it's not truly helping you? Have you considered that "feeling better" may not necessarily mean you are being treated accurately? What if the decrease in symptoms is not actually correlating to the problem being properly addressed? Perhaps the problem is being covered up with medication instead of treated...

"I feel better; therefore my illness is being treated instead of covered up" may not be an accurate statement.

I don't know; I'm just asking. Because in my experience, when people jump on the conspiracy bandwagon, they are being led astray. I've seen it too many times.

@seeking - answer to #1 - was blood test results. The most recent that she did on her own 08/2012--


TSH 138.300 High.
T3Free 1.6 Low.
T4, Free 0.35 Low

Thyroxine (T4) 2.1 Low
T3 uptake 22 Low
FreeThyroxine Index 0.5 Low

#2

#3 She clearly was NOT being treated accurately. FOR YEARS. The above numbers were due to not having medical insurance to pay for doctor appt. and getting a script. Script is not good for a year. Only 3-6 months maybe. It's all a sham

Not until Cytomel was added (five years AFTER dx and feeling like death warmed over) did she even feel an improvement. Then came the diet: more improvement. Supplements: more improvement

While on Cytomel - weight remained an issue. Still 30 pounds overweight. She is now keeping a journal and lowering calories while increasing working out.

Not sure about the analogy -

"...This is just one example. Recently, I watched a video about hurricane Katrina in which the host tries to tell people that the police were busting in doors for sole the purpose of confiscating people's guns. The video utilized several news clips and soundbites in the wrong context to make the viewers think that they were saying "we're coming to take your guns." But really that is not what they were saying. I asked several people and looked several things up to see what the clips were really about and found that they were completely taken out of context for the purpose of making the viewer think that the police and military were taking away people's guns."

or how it can even get CLOSE to health related issues. Totally do not understand this, at all. BUT - each is an individual. What works for one doesn't work for all. Whether there be studies/papers/research or not. I like to research the good and the bad...as for diet, I do understand that it is a MAJOR change and most will not bother. We had to also change personal care products and forget about restaurants/fast food forever. You weigh the good with the bad. Most doctors today DO ONLY RELY on blood work. ONLY. I would like to see THEIR proof that what they are looking at is 100% proof positive as to whether there IS or IS NOT a problem.

Too often, I feel, people are not given the time to explain how they feel. There is no real interest as far as the doc goes for he has sixteen more appts and four drug reps sitting in the waiting room. I tend to be hyper. I was dxd with a multinodular goiter and was done NOTHING for. I was exhausted. My hair fell out in handfuls as if I was undergoing chemical treatments. I was freezing and my body temp was at 96 degrees. But my bloods tested fine. Not until I put myself on Iodine did things get better. Changed my diet and the rest is history.

[EmmaPeel]

I'm pretty upset and would like some advice from the community here. late in 2011 I was dx with acute thyrotoxicosis, was treated immediately to stop the flood of chemicals that were making my heart pound and sweating and eyebulging and diarrhea and weight loss; and then about two-three weeks later crashed into hypothyroidism.
US Doc gave me 75 then 100 mcg levothyroxine. Numbers quickly improved but I still felt AWFUL. fast forward to September 2012, still numbers ok but felt baaaaaad. Depression, aching, hair falling out, gained 30 lbs, fingernails shredding and split off, and so on. Was working in the UK and went to a London endocrinologist, who added 20 mcg of T3 to my T4. He said---and I quote---
"people vary greatly in how they respond to medications and in how their symptoms match with the numbers."

if he hadn't been a stuffy Brit I'd have kissed him! About 3 or 4 days after starting the T3 I felt like I was getting myself back---good grief. Still hard to lose, but now I'm back and am starting locarb and have lost 12 lbs in less than a month.

So today---here I am back home in the US---when he said, your tsh is too low, we are taking you off T3 for 10 days, then starting you back on US brand cytomel but only at 5mcg----and ignored my "BUT I'M JUST FINALLY BACK TO FEELING BETTER!" ---I almost started crying.

he wants tests again in 5 weeks.
Should i skip the meds for a week before? Three days before? or just save up for an airplane ticket and try to get back to that UK doctor? there is a naturopath here in my small town but I don't know if he is any good or listens to symptoms.
Gahhhhh. all advice welcome.
Emma
PS: tests for today were Ft3 normal, T3 normal, TSH 0.3

[watcher513]

"PS: tests for today were Ft3 normal, T3 normal, TSH 0.3"

"normal" means nothing. Where in range. Need the lab result and the range next to each result.

[Leo41]

EmmaPeel-
My advice is based on my own experience--try to work with this doctor. You don't have to worry about skipping doses before your next lab work because if this T3 dose is too low for you, you will have dramatic symptoms and the labs will reflect that.

I have Hashi's and currently take 50mcg Levoxyl and 25 mcg Cytomel. My cytomel dose was increased slowly (5 mcg at a time) over the past 3 years, as my conversion issues (from Hashi's) got worse.

At my check up last week, my very excellent endo was startled by my low TSH and was about to suggest reducing my Cytomel--until he noticed that my T4 and T3 levels were not high at all. They are just about right for me, even slightly low.

I asked why my TSH is so low (I have no hyper symptoms, which is what he is concerned about) because I was worried that could mean some pituitary dysfunction. He said that while taking Rx thyroid will lower TSH, taking T3 (Cytomel) dramatically lowers it.

Doctors are very busy and it often takes them a few minutes at the beginning of the visit to focus on the specific patient. Once he put all the pieces together, he realized that my TSH is OK, given the amount of Cytomel I take.

Also keep in mind that physicians are very conservative when dispensing T3 because overmedication has dire consequences in cardiac issues, bone loss, etc. It's only the fact that I have a long-standing relationship with this endo that I'm even on this much Cytomel. He has repeatedly been hesitant to increase my dosage--but my very severe symptoms are always confirmed with the dreadful labs (T3 at the bottom or below the lab range).

If your dosage is too low, in 5 weeks, that will be very apparent in your labs.
You should be pleased that this doctor is responsive (wants to test in 5 weeks) and is willing to prescribe Cytomel. You'd be amazed at the number of U.S. doctors who don't 'believe in' prescribing T3.

[EmmaPeel]

Originally Posted by Leo41

EmmaPeel-
My advice is based on my own experience--try to work with this doctor. You don't have to worry about skipping doses before your next lab work because if this T3 dose is too low for you, you will have dramatic symptoms and the labs will reflect that.

I have Hashi's and currently take 50mcg Levoxyl and 25 mcg Cytomel. My cytomel dose was increased slowly (5 mcg at a time) over the past 3 years, as my conversion issues (from Hashi's) got worse.

At my check up last week, my very excellent endo was startled by my low TSH and was about to suggest reducing my Cytomel--until he noticed that my T4 and T3 levels were not high at all. They are just about right for me, even slightly low.

I asked why my TSH is so low (I have no hyper symptoms, which is what he is concerned about) because I was worried that could mean some pituitary dysfunction. He said that while taking Rx thyroid will lower TSH, taking T3 (Cytomel) dramatically lowers it.

Doctors are very busy and it often takes them a few minutes at the beginning of the visit to focus on the specific patient. Once he put all the pieces together, he realized that my TSH is OK, given the amount of Cytomel I take.

Also keep in mind that physicians are very conservative when dispensing T3 because overmedication has dire consequences in cardiac issues, bone loss, etc. It's only the fact that I have a long-standing relationship with this endo that I'm even on this much Cytomel. He has repeatedly been hesitant to increase my dosage--but my very severe symptoms are always confirmed with the dreadful labs (T3 at the bottom or below the lab range).

If your dosage is too low, in 5 weeks, that will be very apparent in your labs.
You should be pleased that this doctor is responsive (wants to test in 5 weeks) and is willing to prescribe Cytomel. You'd be amazed at the number of U.S. doctors who don't 'believe in' prescribing T3.

free T4 0.86, range 0.61-1.12
Free T3 2.8 , range 2.0-4.4
T3 79, range 71-180
tSH 0.03, range, 0.34-6.00

So while tsh is indeed low, the others are not even at midpoints, but somewhat on the lower side. Today was ay 1 of no meds---so far no diff at all, but it is 6:15 pm and I feel kinda tired. Not that awful swimming-in-mud tired of hypo, just tired earlier than yesterday.

I will try to work with this doc, but won't I have scary, bad hypo symptoms if I am off meds for 10 whole days?? Why not taper down as we do with steroids?

However: eating Taubes protein and fat since 24 Dec, I have lost 13 lbs or more, and the cholesterol labs were all outstanding! 147 total (I am 54 yrs old), all others in the helthiest ends of ranges. Yum! Finally not missing the sugary stuff.
I highly recommend the Taubes book Why We Get Fat, but taking T3 mans it might have been the T3, not the diet, that shed those pounds. But I felt good and not hungry and will continue it. Hope you're all doing well--thanks for any advice about this T3 issue and dropping meds for 10 days and restarting at 5 mcg of T3 plus 100 T4.
Emma

[hasenbraten]

Well, I have been seeing Dr. Webster for a while now and LOVE him. First he tried everything to treat my severe depression without upping my Armour dose (my labs had a TSH of 0.0002). That did not work. Even though he was a little nervous he finally agreed to up me from 2 to 4 grains, a dose I had been on in the past that made me feel better. That was a week ago. I feel GREAT, first time that I am not suicidal and actually happy in months. I feel amazing. I have been doing stuff I have not been able to do in YEARS.

Unfortunately, he just emailed me. He spoke to the medical director who told him he can no longer prescribe a dosage that high. I have NO hyper symptoms. I FINALLY don't feel depressed anymore and have energy. I am not suicidal anymore. And now they say the dosage has to be lowered. I can't even tell you how upset I am. I have no idea what to do. My life has been so awful due to the depression, it's like everything I used to love doing has been taken away from me because I just can't function. It was so amazing to actually feel happy-unbelievable. I felt like I had my life back. I do not know what to do.

P.S.:
For people looking into seeing a naturopath in Portland - Dr Webster, who I still think is an amazing doctor, recommended Dr.Rob Dramov. He said he may be able to help. I think I will start ordering my Armour from Mexico. I am only halfway joking.

[Leo41]

It's the T3 that helps with your depression. Perhaps you can ask to supplement your lower dose of Armour with Cytomel (T3). I know people who get that from their doctors.

[hasenbraten]

We tried to supplement the low dose of 2 grains Armour with Cytomel and that did not seem to work, but I will ask again - the Cytomel dose was 50mcg, perhaps it needs to be higher. Thank you!

[Leo41]

That's a really high dose of Cytomel! Are you sure it wasn't 5 mcg?

Some doctors use Cytomel in patients with depression and a generally healthy thyroid because they've discovered that despite that healthy thyroid, often depression is caused by abnormally low T3 levels. So I would expect 50 mcg to make a significant difference---but I'm not a physician, only someone who has thyroid problems and tries to stay informed.

[Leo41]

?

[hasenbraten]

Yes, my doctor did say that his justification for adding Cytomel to the regimen was that my depression was "treatment resistant" as far as antidepressants and other neurotransmitter protocols were concerned. I think the reason the Cytomel (and it was 50, not 5 mcg) may have not been effective is that my former doctor had drastically lowered my Armour dose (from 4 to 2 grains). Had I still been at the old Armour dose I am sure the Cytomel would have been more effective.

[GME]

Originally Posted by hasenbraten

Yes, my doctor did say that his justification for adding Cytomel to the regimen was that my depression was "treatment resistant" as far as antidepressants and other neurotransmitter protocols were concerned. I think the reason the Cytomel (and it was 50, not 5 mcg) may have not been effective is that my former doctor had drastically lowered my Armour dose (from 4 to 2 grains). Had I still been at the old Armour dose I am sure the Cytomel would have been more effective.

I am glad your doctor was able to help you, but I find this appalling.

Your body isn't producing/utilizing something that it should and does in a normal healthy person (T3), but you doctor has to justify replacing it by saying he had to because antidepressants didn't work!?!

That is like waiting to give insulin to type 1 diabetics until after you wait to see if amphetamines keep them from going into a coma.

[hasenbraten]

You are absolutely right, it IS appalling, and he is very upset that he can not provide me with the treatment he deems appropriate. It's not him, it's the %^$# medical board...the doctor I was seeing before him was sued for supposedly prescribing too much Armour, so I understand my current doctor being nervous. Needless to say the only other time I did not feel suicidal was under this other doctor's care.

I find it amazing and more than sad that the medical community is not willing to budge on this after having patients shoved in their face that go from non-functioning messes to perfectly happy people. Within one week I went from feeling horribly depressed to actually being excited to get up in the morning. The anxiety that is ALWAYS in the back of my head is gone as well. I don't need to take a nap every day just to make it until 9 at night.

At least naturopaths are not under the restrictions medical doctors are under, but even they are hesitant to prescribe enough Armour if the TSH is very low. Very frustrating and demoralizing. And scary.