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-   -   VERY bad news from my awesome thyroid doc (http://www.lowcarbfriends.com/bbs/thyroid/774181-very-bad-news-my-awesome-thyroid-doc.html)

emily1965 06-11-2012 01:04 PM

VERY bad news from my awesome thyroid doc
 
My doctor called me in last week to tell me that the Oregon board of medicine has begun closely monitoring the good thyroid docs and if a person is on thyroid meds that bring their TSH below the normal range, they are actually disciplining the docs. This has me so angry. My doc goes by symptoms and Free T3 and Free T4. I don't convert T4 to T3 well and for my "frees" to be in range and for me to feel good, my TSH ends up below range. The board could not care less how I feel and they could not care less that the "frees" are in range. They are going strictly by the useless TSH. His hands are tied. He can send me to a nautropath, because the Nautropathic board sees things like they should. My doc is very upset about his hands being tied like this and has been forced to lower the dosage on a bunch of his patients. Some of them have done ok, but many have crashed. He has a ton of thyroid patients, so I'm sure this is going to have a dramatic effect on his practice.

I have decided (on my own) to stop taking my thyroid meds for a week before going and getting my TSH drawn so that, hopefully, it will be up in the range and he wil be able able to refill my thyroid meds at the same dosage. It also looks like I'll have to go through this every six months because the board is requiring these docs to make their patients get their TSH drawn every 6 months, even if they feel great. If that's not enough to get me up to range, I'll be forced to go to a Nautropath. I would rather risk feeling crappy for a week or two than to feel like crap long term due to getting my meds cut. I love my doc and I see him for a lot more than my thyroid, so I don't want to add another doc. Besides, I don't have insurance and he charges me practically nothing for an office visit. Now it looks like I won't ever be able to get any accurate numbers for my "frees", becaue if I take my meds properly and check my "frees", my TSH will show up too low and he'll have to cut my meds. I guess if I need a "real" thyroid test, I'll have to figure out the independent testing thing.


The whole thing makes me so damned mad. It took me several years to find an awesome thyroid doc and get optimized. The board is putting thyroid treatment back by 50 years. Jerks. I suspect that the big pharma that produces Synthroid may ultimately be behind this because the medical board appears to be going mainly after docs who prescribe Armour.

Leo41 06-11-2012 01:32 PM

This is terrible, but I'd really suggest that you check with your doctor about your plan. Our 'meds' are, as you know, actually thyroid hormones and essential to the basic operation of our bodies. It may be dangerous to stop them for a week. And it also may be unnecessary. I've read that the TSH can vary widely, so it might work to just omit the meds for a day. But before doing anything about stopping meds, I would check with my doctor.

Lokarbiebarbie 06-11-2012 03:46 PM

I'm still alive. :) I don't know anyone (patients) who've died or had any type of adverse reaction in stopping their T3 for a week (you see, the T4 isn't really readable for six weeks..so most of US stop the T3 and then lower the T4 for about eight days to obtain a TSH in the 'readable' area.

But, if you're like me, and using Armour Thyroid...I generally just cut it in half for about a week or so and the last two days, I stop taking it. My TSH is generally just below the starting range, and if I do this, I see a TSH of around a 1. and change.

I, also, got my own testing on trials of doing this to attain a TSH of 'in range'. I got to the point where I'd rather stop or slow the meds rather than to have them yanked off of me.

I've seen many patients who had stopped their incoming hormone for months..because they no longer had the money or insuarance to cover them.

I've seen hundreds of prospective patients go without any hormone because they couldn't find a doctor who would treat until their TSH was well over a ten!

Yes, I would do the same as you are thinking and I HAVE. And I would do it again if need be.

On the other hand, please do be careful about having a FT3 OVER RANGE because that can lead to osteopenia (it's not true a low TSH does that...really doesn't have a lot to do with anything except small minds IMHO).

Best of luck to you!

CarolynF 06-11-2012 08:16 PM

I have a doctor only for my thyroid/hormones..Then a regular one for other things.

You can have the blood tests your doctor orders to the naturopath also. You might only have to pay for another doctor's visit every 6 months..(naturopath)..

That's what I would do..I doubt if you can get your TSH over 3 in a week of not taking your meds..Do you think????

GME 06-11-2012 08:29 PM

What a nightmare. I'm not normally much of a conspiracy thearist, but this sure as heck would not be happening if thyroid problems primarily affected men.

emily1965 06-12-2012 07:42 AM

Quote:

Originally Posted by CarolynF (Post 15718839)
I have a doctor only for my thyroid/hormones..Then a regular one for other things.

You can have the blood tests your doctor orders to the naturopath also. You might only have to pay for another doctor's visit every 6 months..(naturopath)..

That's what I would do..I doubt if you can get your TSH over 3 in a week of not taking your meds..Do you think????

It doesn't have to be over the range. It just needs to be up in the range. When I'm properly medicated, my TSH falls below the range.

Lokarbiebarbie 06-13-2012 08:21 AM

Quote:

Originally Posted by GME (Post 15718858)
What a nightmare. I'm not normally much of a conspiracy thearist, but this sure as heck would not be happening if thyroid problems primarily affected men.

:) I'll second THAT!

inatic 06-13-2012 01:09 PM

there will likely be more of that to come, all over. :/

watcher513 06-13-2012 04:56 PM

Time for a letter writing campaign. That would be interesting to see. Are we not the Consumers?

Probably just cutting back the T3 a little would bring the TSH up and make them happy, enough to get in range a bit (not a lot).

AllieCat0817 06-15-2012 04:43 AM

Hi everyone. Good to see you all. From what I understand from my doc, and from what I've read, if you've had a diagnosis of thyroid cancer (which I have had), your TSH definitely NEEDS to be suppressed below normal range. At one point mine was suppressed to something like .001. And that's where my doc wants it, because of the thyroid cancer (which has been removed).

comanchesue 06-15-2012 09:03 AM

Thats really a shame. I've had to "delay" my meds with a doc who was TSH centric and found that I only needed to skip 2 days before the test to be in an acceptable (to the doc) range. A week without meds seems like an awfully long time.

brandywine12 06-19-2012 05:42 AM

I have had to do this as well, NO Dr is going to tell me how I will feel in the long run!

I have been to quite a few of em over the years, they all with in a few exceptions ....all tsh worshipers, next to not doing the ft3's. I know it is all about keeping you coming back for other ailments relating to being under medicated.It IS not happening to me any more!!!
you have to do what you have to do. I done this for a while and only wonder where my true readings are. I feel just FINE!
this is just skipping 2 days to get where he likes me to be.
I thought I was the only one doing this lol!

hasenbraten 11-20-2012 01:09 PM

Emily, I was trying to send you a private message, but I couldn't figure out how:) - I think I am seeing the same doctor you are (or rather, I have my first appointment soon), and I was wondering if I could ask you some questions. Didn't mean to hijack the thread!

dansamy 11-20-2012 01:52 PM

Quote:

Originally Posted by inatic (Post 15723136)
there will likely be more of that to come, all over. :/

Yup. we're going to see a lot more folks making medical decisions who are neither doctors nor their patient. Welcome to bureaucratically managed care.

emily1965 11-20-2012 03:54 PM

You won't be able to send me a PM because you are new. This site requires you be a member for at least 60 days before you can P.M.

His initials are K.W. and feel free to ask away. I still love him.

hasenbraten 11-21-2012 09:10 AM

I thought it may be because I am new:). You do have the same doctor then, I am glad you still like him. This has been a very difficult journey for the past few years, and I am at the end of my rope. I am very excited about having found someone who can potentially help.
Thank you very much for your response.

emily1965 11-21-2012 10:31 AM

You will love him. It will be like no other Dr. appointment you have ever had. The two of you will actually sit down together and talk. Can you imagine?

hasenbraten 11-21-2012 12:26 PM

What??? That's crazytalk:). My last doctor called me on the phone (for a total of 3 minutes), said "Your TSH is too low, I am decreasing your dosage, come back in three months." That was it. I literally cried. She never even asked if I still had hypo symptoms, which I did.

The only time I was not severely depressed was when I was with a doctor that put me on a dosage of Armour that was much higher. Needless to say he ended up being one of the doctors you mentioned earlier-he is now on probation for prescribing thyroid dosages that are "too high." It's sad. I am so very happy to have made an appointment with Dr. W.

emily1965 11-21-2012 09:51 PM

Let me know how it goes. He is so thorough. It will be the most detailed history you have ever given, but it's all important to him and he will ask about symptoms that you have, but didn't even realize were symptoms. He will also look at all other possible things that can mimic thyroid or contribute to thyroid issues, like ferritin, and D. He is big on nutritional supplements, but doesn't give them just for the sake of giving them. I have often had him shake a few into a bottle and have me take for a few days to see if I feel any difference so I don't waste any money. Also, sometimes what doesn't work can tell him as much as what does work.

watcher513 11-22-2012 01:14 AM

I thought it was a combination of 30 days and 30 posts before being able to PM, not 60 days.

emily1965 11-22-2012 11:18 AM

Quote:

Originally Posted by watcher513 (Post 16093689)
I thought it was a combination of 30 days and 30 posts before being able to PM, not 60 days.

Actually, we were both wrong. I found the following in the TOS...

"Private Messaging and Blogs are accessible after a member has at least 25 message posts AND has been a member for at least 25 days. The ability to upload attachments and access your Signature is also granted at this time".


The 60 days I had in my head applies to the Playground forum here. It's 60 days and 60 posts.

watcher513 11-23-2012 01:15 AM

close

hasenbraten 12-06-2012 08:59 AM

So, I had my appointment with Dr. Webster yesterday, and you are absolutely right. What a sweet and thorough doctor. My appointment lasted 1.5 hours, he asked me EXTENSIVE questions and actually didn't just reduce my meds despite low TSH, but tried to figure out why I still felt hypo. He said he had only seen one other case like mine before and he was a little baffled, but I have such a great feeling about him. I think he will be able to finally help me after I have been trying for YEARS. Thanks again for the feedback, Emily!

emily1965 12-09-2012 09:27 AM

Quote:

Originally Posted by hasenbraten (Post 16121031)
So, I had my appointment with Dr. Webster yesterday, and you are absolutely right. What a sweet and thorough doctor. My appointment lasted 1.5 hours, he asked me EXTENSIVE questions and actually didn't just reduce my meds despite low TSH, but tried to figure out why I still felt hypo. He said he had only seen one other case like mine before and he was a little baffled, but I have such a great feeling about him. I think he will be able to finally help me after I have been trying for YEARS. Thanks again for the feedback, Emily!


The world would be a much better place if it had more Dr. Websters in it.

hasenbraten 12-10-2012 06:38 AM

Very very true. He is absolutely wonderful. I will certainly be recommending him to anyone searching for a doctor. Thanks again for your feedback:)

joyfulfawn 12-18-2012 09:56 PM

I'm from the PDX area too. I am so going to find this doctor! Thank you!

joyfulfawn 12-18-2012 09:57 PM

Emily, do you have hashimoto's? Or hypo w/ out thyroid disease? I was seeing a great ND in Sherwood, but I still feel like poop and when I try to ask about trying some thyroid hormone drugs he says I'm in range so I don't need them.

emily1965 12-19-2012 09:11 AM

I have never tested positive for Hashimotos, but it's been a long time since we tested for it since the tratment is the same and the test often gives a false negaive. I have severe hypo with multiple cysts/nodules on my thyroid.

If you are looking for him, his full name is Kim Webster. He's down in NW at 25th and Lovejoy. His building has a parking garage underneath so you don't have to deal with the horrible parking down in that area.

His office will be closed from noon today until after Jan 1st.

I just saw him yesterday and he figured out why I am so swollen and lathargic and nauseated and miserbale 7 weeks post op, wen my PCP was at a loss and telling me to suck it up and give it time.

Su11 12-19-2012 09:23 AM

I am so sorry you are going through this. The TSH forces seem to be going state by state to make way for these sorts of rules. There is no real reason for such a prohibition, but the state boards are being swayed, and some good doctors relocate just to be able to practice as they believe.

I got the same message not long ago. I found someone elsewhere, but not everyone has that option, and how long will any of us?

Peaceash 12-27-2012 11:02 PM

Su11- who were you seeing in GA that passed along this message r.e. the boards cracking down on TSH? I currently go to GA Hormones in Alpharetta & have not been back in ~6 mos but am due for labwork soon...just curious to see if you heard it from them. Crossing my fingers that I'll still be able to be properly treated (as my TSH is routinely 0.01). Thanks.


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