[ghost]

#1018383

So I’ve had no thyroid for more than 12 years now and we move frequently. Each place we go has a new doc – and each doc has a different idea of the right way to treat patients on thyroid hormone replacement therapy. I’ve been to a couple of great docs who listened – and a couple who actually told me I need to get used to feeling awful because that is just how it is for people with no thyroid. Most docs have been in the range in the middle.

Right now I feel pretty darn good – I’ve managed (through MUCH hard work) to get to a pretty healthy weight, I have no tremor, my blood pressure is consistently low, my skin isn’t ultra dry, I’m not heat intolerant, I’m not so freezing that I want to wear a sweater all of the time (though I am typically colder than anyone else in the room), my heart isn’t trying to bust out of my chest, my hair isn’t all falling out… I know my symptoms well, I know when my body is off.

The problem is the doc here believes in only following the TSH levels and is very very opposed to sharing any information about the test numbers. I’ve always needed to maintain a pretty low TSH level to feel healthy – some docs support this, some oppose it… Every endo I’ve seen (that would be 5) and every GP I’ve seen insists that the way they do it is the only correct way. (I’m trying hard to find another doc – but switching may or may not help.)

I’ve actually come to believe there is something wrong with my anterior pituitary and that is why the TSH levels are so out of whack with everything else, but the endo says the gp has to order any tests for that and the gp says they have no idea what I’m talking about and should have the endo contact them. He won’t.

I’m at my wits end. I cannot get a call from my endo’s office without ending up in tears later. I basically feel completely powerless because they hold the prescription pad that controls how my body feels. No amount of exercise or healthy eating can make up for improper thyroid levels.

Does this happen to other people out there? What do you do about it?

[Bobbi]

#1064401

The TSH is the "gold standard" with any of our doctors. But there is a significant range associated with normal TSH levels, so some of us feel better –sometimes — in one part of the range, than in another. I personally feel pretty good throughout the range. Tweaks can be made to the dose (i.e. minor changes ) to move our replacement dose around a bit while still being in the normal range. An example of a tweak? At my last annual thyroid checkup, I was within normal, but at the hypo endo of things, and my endo wanted to raise my dose of replacement just a wee bit. She put me on a higher dose four days a week, keeping the lower dose three days a week. It was too big a jump, and sent me off into hyper territory. So, we tweaked things back. I’m splitting doses, taking a different amount on the weekends than I take during the week. That’s an example of tweaking.

I have discovered over the years, that my endo responds much, much better to objective data about my symptoms than subjective ones. She is not going to respond if I say I don’t feel well. The typical answer is "Its not your thyroid." But if I can point out that my heart rate is up, that I’m not sleeping, etc. etc. she will indeed pay attention. So, keeping a symptom log can help if you think things are truly "off."

Addressing your other point: One of the major tenets of a doctor’s training is "First do no harm." If you happen to feel best while slightly hyper, you will definitely find resistance from a good doctor in keeping you at that level. It has been demonstrated, through studies, that even slight levels of hyperness ultimately eat up bone and undermine our hearts. So a doctor would be doing harm if he/she thinks your levels of replacement are too high. I’m not sure the same is true of hypo levels, but it might be.

As to getting copies of your lab reports — I don’t know where you live, but in the U.S. I have never, ever had a doctor refuse to give me a copy of the report. It may be different in other countries, but here, they comply immediately when I ask for a copy, without argument.

[snelsen]

#1064402

I would like to address a couple things in your email and Bobbi’s.
Labs-some offices are happy to print them out and give them to you. THis is especially likely to happen if you get your labs drawn before your visit. But I did hear you about the endo’s reluctance to the labs. That is a puzzle to me, other than having labs too often, which does not seem to be the case with you at all.
Not sure if you had a thyroidectomy or RAI 12 years ago?
I can REALLY RELATE to the fact that you are at your best when your TSH is suppressed. I have the same problem. I diligently worked with the endo to reduce Synthroid for the past year. He was concerned about the two issues that Bobbi mentioned, cardiac risk, primarily a slight increased in incidence of atrial fibrillation, and bone compromise, with increased risk for osteopenia and osteoporosis. But as we reduced Synthroid, I turned into a zombie. My TSH remained suppressed, not budging from .001-.026 (range .4-5_ which I know is not good for me, but after having all the symptoms of extreme hypo, including massive GI impact, gastric motility of stomach slowed down so much that nothing left my stomach, and I could not eat for that reason. We agreed enough is enough now we are increasing my Synthroid, and I feel better again. But docs are not comfortable with this, because of the risks mentioned.

Suggestion. CAn you ask for a medical release of information form, sign it, stating that you want all copies of dicated reports of visit, and labs?? This is your right to have. Because of HIPPA, the patient confidentiality rules, most offices are beginning to conform to this law, which means offices will NOT release any information, even to you, unless you sign this form. You have to ask for it. Most offices do not volunteer it to you. The other option is that this endo is a total control freak, and you probably need to take the time and energy to find one who is interested in thyroid issues.
Bobbi asked you where you lived, and I have the same question. Much of what I have said about obtaining records applies to the US only, and I am not familiar with the policies of other countries.

At least, as you experience this frustration, you feel pretty good! That is a big plus, as being extremely hypo or hyper.
When I write, I tend to ramble a bit, but I think I addressed what I wanted to mention, the topic of getting your records and extreme understanding that you feel super good when you TSH says you have too much hormone on board.
Shirley

[Kimberly]

#1064403

One other thought – do you have the financial resources to order labs on your own and then take the results to your GP? There are web sites that will let you order your own labs, and then you get the blood drawn at a local clinic. One that was recommended when I went through support group leader training was http://www.HealthCheckUSA.com.

For patients who are stable, TSH is the preferred test for making dosage adjustments, but if you truly feel that something is off, it would be nice if you could get you FT3/FT4 tested just for the peace of mind.

[mamabear]

#1064404

Ghost, hello and welcome! I am not sure if you move around due to military or just life in general but have something stable is always key and if you can do it try to. If not here are some tips to help along the way…

1. First REMEMBER this…YOU ARE the client and what you say goes..NOT the dr. It is your body! You can FIRE the dr. at any time if he doesn’t feel that what you say should matter.
2. REMEMBER it is your right to get a copy of your labs at any time! There are no exceptions to this regardless of how reluctant the dr. is about it. He is not the holder of the key to your labs, YOU ARE and by "choosing" him you give him the oportunity to hold those labs NOT keep them under lock and key. You are not his puppet.
3. As someone else said, if you go to a lab to get blood drawn, ask if you can sign off to get a copy mailed/faxed to you. Ask them if this needs to be done EVERY TIME you go there, so next time you have another lab done you will know to sign again for that one or not have to worry about it. Some sign off for 30 days or so, some it must be every single time. It’s worth the minute to sign off on it.
4. If the dr. draws the blood there then ask that they ALWAYS send a copy to my primary care dr.. This is NOT asking them if they will, this is TELLING them they must send a copy to them. When any dr. draws blood and sends it out they can request that it go to them via fax and they can also request it go to someone else like your Primary care. Make sure that is done.
5. IF you go to an outside lab for blood, not only sign off on getting a copy mailed/faxed, but make sure you put your Primary care dr’s fax on there as well.
6. Speak to your Primary care dr. about how your Endo doesn’t give you the results and you are concerned about this. IF your primary says tough, then find another primary care.

Having a rapport with your primary care is key, if they are a jerk too then again seek another one. If they are kind then ask about getting another endo or ask your primary to continue your treatment as long as you are in the range you want to be.

Example:
Call the endo’s office and say "hello, I am Ghost. I would like to have a copy of all of my labs, when is the soonest I can pick them up?"
If the receptionist says you can’t ask why and if she says why then ask her to send that to you in writing. Usually asking a dr’s office to sign there name to something that says you can’t have your labs gets them to get them ready for you lol.
If you wish to have more than just your TSH level checked, ask your dr. to give you the paperwork or Website he is going by for the criteria of dosing for your thyroid condition. For example…. If he goes by http://www.Idontwanttouseanythingbuttsh-this is not a real link.com for the informative criteria of your particular disease then he should be able to readiliy give you that site.
You could tell the dr. to refer to the AACE and read up on it, you yourself should read up on it as well. Unfortunately the latest updated one is 2002
Click here for AACE guidlines
Click here for AACE PDF link This might not work if you don’t have Adobe reader.

You are your best Advocate, NO ONE else can be. You need to use a brass set of ” title=”Very Happy” /> ” title=”Very Happy” /> things or borrow them before you go see your dr. again and tell him what you want. If he says no then ask why and ask where he gets his info from. IF you tend to get embarrassed from asking those kinds of questions or if you are all gungho about it then get shy when you see him, practice in front of someone. Speak it out loud because in your head is different then speaking it right to someone, even if it’s in the mirror. It never goes exactly as planned but feeling like you have support from here can help.

I am all about "kick em’ to the curb" if they don’t help you. My #1 pet peeve is poor bedside manor. 2nd is dr’s who wont give out results, and dr’s who wont give out results unless you make another appt. That irks the heck out of me.

Sure hope this helps and makes you feel empowered! YOU ARE NOT alone. And yes I have had a few dr’s who were jerks and told them just that. Takes time to be your best advocate but as you say you move around, so you dont have time, you need to do it asap.

Get copies of every dr’ who have been to, even if you have to call them and ask them over the phone what your lab #’s were, and keep an excel spreadsheet of them(date and ranges for each test).

Good luck!

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