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Old 04-19-2010, 11:15 AM   #1
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I need good arguments for a stubborn endo

I don't have my latest labs back yet, but I can already tell by my symptoms that my thyroid dose is too low. This doc does listen to symptoms and does look at FT3 and FT4, BUT he's already told me 120mg is high enough for someone of my height and weight and that since my TSH is at zero, I should have enough. That's when he went into testing me for other things. I do have low iron, but my symptoms are thyroid (fatigue, pressure in front forehead, no period, constipation, heavy eyelids, digestion issues (even when I eat gluten free food)).

I see my doc in a week and a half and I need to be prepared in case he says there's nothing else wrong but my thyroid, but won't increase it because he's afraid I'll go hyper. He told me I don't need hyper symptoms to be hyper. I've tried calling another doc but they're booked until June.

 
Old 04-19-2010, 11:55 AM   #2
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Re: I need good arguements for a stubborn endo

He should know that TSH is going to be quite suppressed, and what could be wrong with that?

If your endo continues to only monitor TSH, then it is definitely time for a doctor change.

 
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Old 04-19-2010, 12:17 PM   #3
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Re: I need good arguements for a stubborn endo

I've seen 6 docs in the last year. Aside from just looking thru the phonebook, I don't know who else to call.

At least he's not like the others who wanted to lower my dose when the TSH got to zero, but he's not willing to increase the dose either, depsite my symptoms. Hopefully I can convince him, especially if the other diseases he thinks I have come up negative.

 
Old 04-19-2010, 04:24 PM   #4
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Re: I need good arguments for a stubborn endo

There are references to several studies you can find on Mary S's site about how TSH below zero does not pose a health threat. Look them up and print out to bring along to your doc. Hopefully this will educate him some and he will ok a dose increase.
Also getting your ferritin up over at least 50 will be necessary to start effectively utilizing the thyroid hormones you are currently taking. Keep an eye on your free T3 levels to make sure you aren't taking more in than your are able to use. If your FT3 is still low in range then you will need an increase but if it's really high you may need to wait until your ferritin creeps up before you get anywhere with this.

Last edited by javelina; 04-19-2010 at 04:26 PM.

 
Old 04-20-2010, 02:32 AM   #5
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Re: I need good arguments for a stubborn endo

So I could really be on the right dose but still have a lot of hypo symptoms because my ferritin could still be too low? Interesting. If it's still low, is it safe to double the dose of iron? Right now I'm taking Ferretts. I hope my FT3 isn't too high or my doc will try and lower my dose. These docs don't seem to care when I say I felt just as bad, if not worse, on a lower dose, so how will lowering it make me feel better?

 
Old 04-20-2010, 03:23 AM   #6
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Re: I need good arguments for a stubborn endo

I've read that a low TSH is now considered safe, but a suppressed TSH is still dangerous. This was on Mary S site. I haven't seen yet where a TSH of .004 is OK.

 
Old 04-20-2010, 07:48 AM   #7
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Re: I need good arguments for a stubborn endo

Yes I saw that study too. My TSH was .008 and I'm pretty sure I was over medicating myself (I was on T3 at the time). I've switched over to Erfa and will see if the TSH comes up a little. It appears that a TSH of .04 to .4 is the optimal range. This is interesting because most lab ranges have the low end at .5 so it just reenforces the premise that doctors who attempt to keep their patients in "normal range" with TSH are actually harming them (which is what thyroid advocates have been trying to tell them for years).

How much of the ferretts are you taking now? Are you taking lots of OJ and ascorbic acid with it? Also avoiding milk, tea or coffee with meals? It can take a while to get the levels back up again. A retest of your ferritin would be helpful to see how well your therapy is working for you. If you keep raising the thyroid without adequate ferritin I don't know if you will get any good results and you may be over-medicating yourself.

 
Old 04-20-2010, 10:35 AM   #8
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Re: I need good arguments for a stubborn endo

My TSH seems to be very sensitive. On synthroid, it went way below zero on 75mg, yet I was still very hypo. On dessicated thyroid, it goes below zero on 90mg, but again, I'm still very hypo. So I don't know what's causing my TSH to plummet as soon as I go on these meds, but I have a list of at least 23 symptoms that are all on the hypo list. I have nothing that's hyper. Occasionally my heart will be a little fast in the mornings, but I'm usually very dehydrated and low iron can also cause that, so I don't think that's from being overmedicated.

I'm taking one 109mg tablet of Ferretts a day with lunch and also taking 1000mg Vit. C with it. I'm having my ferritin checked with these new labs I'll get either later this week or next week.

I'm starting to get concerned about my overall health too. I've been sick for 2 1/2 years. I've been constipated the whole time and also have not had a period except once when I was on a high dose of Cytomel. My LDL has also been high over the last year or so and my osteoporosis has also gotten worse. So all this can't be good long term.

Also, even though my TSH was way below zero on the low doses, my FT4 and FT3 were always on the low end of the range or even out of range on the low end. What would cause this? My friends TSH never goes below 1 and she feels fine.

Last edited by tigger67; 04-20-2010 at 10:42 AM.

 
Old 04-20-2010, 01:38 PM   #9
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Re: I need good arguments for a stubborn endo

Since TSH is a pituitary hormone it can be influenced by how much T3 the pituitary itself contains. For some reason you may have a hyperresponsive pituitary reaction to thyroid meds which has no bearing on your actual levels of T3 elsewhere in your body. Dr Kent Holtorf has written about this in various articles and studies.

You may want to consider trying a desiccated thyroid you can take sublingually like Erfa. It's entirely possible that your malabsorption issues are making it so you simply don't absorb oral meds well. This may explain why your serum levels of FT3 are so low no matter how much hormone replacement you take. Also if your iron levels aren't coming up you may want to see a hematologist about how to get your ferritin up, perhaps iron infusions may be in order.

 
Old 05-20-2010, 11:43 AM   #10
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Re: I need good arguments for a stubborn endo

Hi!
Oh gosh...sounds like you're going through a lot, as I am. To quickly address your concerns which are similar to mine....your low TSH could be from a few things. I was put on high doses of cytomel that at some point I stopped absorbing. Probably my body's way of protecting me. I had been low thyroid. Well, now my TSH is suppressed. I am seeing a specialist who just did a pituitary MRI to see if the low TSH is being caused by a tumor or hypopituitarism. If that is ok, it could be that it's suppressed from taking high T3 for too long. But...I am CLEARLY hypo with a recent T3 of 226, and T4 at .7. So, even though my TSH is low (has been as low as .01), I am still hypo. Any doctor that just goes by your TSH alone is not doing his job.
I also just found out that my ferritin levels were VERY low as he has me on 6 iron pills a day at 18mg. I am constipated too but taking vitamin C and magnesium to help with that. Now I fluxuate between constipation and diarrhea! FUN!!!! My adrenals are ok but I've had problems with them in the past. This all started with Epstein Barr virus 7 years ago, leading to CFS, and then adrenal and thyroid issues. Make sure you get a full thyroid panel of TSH, FREE T3, and FREE T4, as well as checking iron levels, and possibly rule out a pituitary problem. I had no idea that low iron won't allow your thyroid to work properly which makes sense because my thyroid levels have been all over the place, but mostly low.
Good luck!

 
Old 05-20-2010, 12:08 PM   #11
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Re: I need good arguments for a stubborn endo

Hi,

My endo has been testing for other things in addition to thyroid, because since I have hashimoto's/autoimmune problems there is a greater risk for other illnesses. Most recently, when he looked at my low Vit D, low iron, and low Calcium, he decided to test for celiac to see if there is a reason for malapsortion (I take loads of vitamins and shouldn't be low on anything).

So it is worth looking into whether you have something else going on in addition to the thyroid if you still aren't feeling well.

Good luck!!

 
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