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Old 03-15-2011, 10:58 AM   #1
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Recently Diagnosed with Hashimoto's

Hello, I was recently diagnosed with Hashimoto's and I wanted to share my story and gain some feedback. It was discovered that my TSH was high through a wellness program at work where we typically have a blood screen once a year. For reference my nutritionist compared my TSH level from 2008 to my level checked recently, results are included below. She said the reason for not checking in 2009 was that my results in 2008 were so great. Here are the results from those tests:

End of 2008-
TSH- 3.263 Range Unknown

01/12/11-
TSH- 10.230 Range 0.450-4.5
T4- 6.9 Range 4.5-12.0
T3 Uptake- 33 Range 24-39
Free Thyroxine- 2.3 Range 1.2-4.9

Because there was such a jump in my TSH, and because I was experiencing symptoms of HypoT, she requested I see my PCP to follow up. After some discussion about symptoms, and my doc telling me that "everyone says they have the symptoms," she felt some swelling around my neck and agreed to more testing and an ultrasound. Here are those results:

02/01/2011-
TSH- 4.312 Range 0.350-4.670
Free T4- 0.94 Range 0.89-1.76
Free T3- 287.89 Range 230-420
Prolactin- 8.5 Range 3-30
ThyroGlobulin- 696 Range <20
Thyroid Peroxidase-704 Range <35

Ultrasound showed only swelling, no nodules. I was referred to and Endocrinologist who diagnosed me with Hashi's and gave me an 8 week trial of synthroid 50mcg to start with. After a week of migraines and mild nausea I started to feel better. I had more energy, digestion started moving.. etc. Then for a few days I felt HyperT, way anxious, high strung.. etc. Then everything stopped and for the past week and a half I have felt like I did before the medication, except I have developed the worst acne I've ever had, and gained 5 lbs. Needless to say I'm not happy. I know this takes a while, and I'm trying not to get frustrated. I have more tests done on the 22nd of this month and I see the Endo on April 4th. So here are my questions:

Did she start me too low on the dosage? And should I be on a T3 supplement also, or is a medication like Armour better for people with Hashi's?

Sorry for such a long post, and thanks in advance for all the help! Jezi

 
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Old 03-15-2011, 11:46 AM   #2
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Re: Recently Diagnosed with Hashimoto's

Hi Jez--Sorry to hear that you have joined the hashi's club. But...there are many of us in this with you!

After dealing with hashi's now for over 4 years, to me the important thing that I wish I had known is that getting yourself feeling better is going to be a project. It doesn't happen quickly and just when you think you have got the meds right...well, your antibodies will have a field day and you will need a higher dose.

The thing with hashi's is that those tpo antibodies are determined to destroy your thyroid and one day they will. Whether that happens in a year or several years is not known. So, you have somewhat of a moving target to hit with your meds, if you know what I mean.

Please do not think though that it is all doom and gloom..it is just something you will get through. You do need to have a decent relationship with the dr. who is handling your thyroid as you will have to be in contact on a regular basis.

Also...we have to try harder for health than the average person. What I mean is that it is very important to be sure that your diet is healthy and that you have a healthy lifestyle-adequate sleep, stress release, and plenty of exercise. These good habits will really help you through the process. I cannot stress how important this is!

About your dose, it is not unusual for a dr. to start at 50mcg. but you do want to have a follow-up blood test in about 6wks. to see the effect of that dose and to go from there.

About whether you should also be on t3---there is a school of thought that you should first work out a t4 dose . When you have done that then you can subtract some t4 and add in some t3. I believe I read this in a book by Dr. K. Blanchard-What Your Doctor May Not Tell You About Hypothyroidism .
Azuree

Last edited by azuree; 03-15-2011 at 11:52 AM.

 
Old 03-17-2011, 10:03 AM   #3
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Re: Recently Diagnosed with Hashimoto's

Thanks, Azuree. It really helps to know that I'm not alone. Funny thing is my sister-in-law found out she has Hashi's the same week I did. She has nodules and was in the hospital though. We talk about it all the time. It's just so frustrating. Especially when I try to workout and have to fight to peel myself out of bed the next day.

I do feel good about my Endo, even though I have only met with her once so far. She said she does practice by trying to get the TSH below 2 and the FT3 & FT4 to the top of their ranges. I had called about a week ago when I felt myself start to drop again and she said even though it's early, to go ahead and get my bloodwork done. Unfortunately, my work schedule doesn't allow that.

On a side-note: I read somewhere that having Hashimoto's makes you more susceptible to other autoimmune diseases. Is this true? And which ones are common with Hashi's?

 
Old 03-17-2011, 10:13 AM   #4
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Re: Recently Diagnosed with Hashimoto's

Jez- I too have read that having one autoimmune disease puts you at greater risk for another. I have read this in a number of places. One book that I believe you will find this in is Thyroid for Dummies..by Rubin. And, I believe he lists out the other autoimmune diseases as well. You can probably find this book at your library. I think it is available at most larger book stores as well.
Azuree

Last edited by azuree; 03-17-2011 at 11:05 AM.

 
Old 03-17-2011, 01:58 PM   #5
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Re: Recently Diagnosed with Hashimoto's

[QUOTE=Jezilynn;4708752]
I do feel good about my Endo, even though I have only met with her once so far. She said she does practice by trying to get the TSH below 2 and the FT3 & FT4 to the top of their ranges. /QUOTE]

Very happy for you to have such a knowledgeable endo. Many do not work towards getting the FT3 & FT4 towards the top of their ranges which is truly "the place" most people feel/function best.

Heck, some doctors don't even run the vital FT3 & FT4 and dose solely by TSH, which is a recipe for disaster.

If there is any way you can get bloodwork when you are having symptoms, it would be to your benefit. It takes awhile for a dose adjustment to have an effect on the body. So, the longer you wait out symptoms, the longer it might be before you feel better.
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Old 03-31-2011, 06:07 AM   #6
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Re: Recently Diagnosed with Hashimoto's

Well, I suppose I should have waited before I gave my endo such a good review. I was able to get my new levels without going in for an appointment, they are:

3/22/2011-
TSH- 2.02 Range 0.45-4.5
FT4- 1.21 Range 0.82-1.77

They've suggested that since my levels are within range, I need to make a decision whether I am going to stay on synthroid 50, or stop taking the meds. They also said that my symptoms are completely unrelated since my levels are "perfectly within range" and will not Rx a higher dose.

Should I move on to #2?

ETA: And when I asked why they didn't test for FT3, they said TSH and FT4 were sufficient.

Last edited by Jezilynn; 03-31-2011 at 06:09 AM.

 
Old 03-31-2011, 06:45 AM   #7
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Re: Recently Diagnosed with Hashimoto's

Quote:
Originally Posted by Jezilynn View Post

Should I move on to #2?
YES!!!!

Sorry

Common sense tells us that the 50mcg synthroid is "responsible" for your current FreeT4 level so stopping it would be downright stupid.

We all know that having levels "in-range" isn't good enough.

Sigh - yet another clueless endo....I've had 3 of them.

You just might want to see a DO, internist or holistic doctor for your thyroid care - they tend to be more "with-it".

I found my "charm" in the form of an internist.

And, one idea to help find a "with-it" doctor would be to call your pharmacist to get contact info for doctors that Rx Armour or Cytomel. These are both T-3 containing meds that "with-it" doctors Rx.

PS in regards to your question about FreeT3, FinnMaid on here recently reminded me that many people do not get FT3 run before being Dx'd hypo...and some are started on natural thyroid products that contain both T4 and T3.

I never had a FreeT3 test when hyper....my current thyroid doctor (who's been caring for me since a month after I entered remission from Graves' and before I went hypo) believes in the FT3 test 'cuz "that's the level we feel".

A FreeT3 test is most definitely warranted if your FT4 level is towards the high end of the range yet you might be still having hypo symptoms. This would indicate a problem with conversion and the need to start a T3 med.

You did have a slightly-below-mid-range FreeT3 result when you first started levo....your FreeT4 was well below mid-range so-o-o-o, more likely than not, the T4 in your levo converted adequately to T3 and your FreeT3 level most likely rose along with your FreeT4 level.

I'd say you're OK for now without a FreeT3 level check but keep the thought in mind that you might need it checked further down the line.
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Last edited by sammy64; 03-31-2011 at 06:55 AM.

 
Old 04-06-2011, 08:28 AM   #8
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Re: Recently Diagnosed with Hashimoto's

I had my follow-up with Endo #1 yesterday who said again that my labs were normal and my symptoms are unrelated, but after some convincing she agreed to bump me from Synthroid 50 to Synthroid 75.

I asked her opinion on Armour and other dessicated thyroid medications, she said she does not prescribe them because she feels that they are more difficult to bind than the synthetic and that straight T4 meds are the way to go, so she would not Rx a T3 supplement either. I also asked again why she did not test for FT3 and she said she only uses FT3 if you are hyper. I would prefer to have a more open-minded doc who will be willing to try more options rather than have one approach and give up when it doesn't work. I will be seeing Endo #2 April 20th.

Thank you all for your help and support, and I will update as soon as I see Endo #2.

 
Old 04-06-2011, 05:00 PM   #9
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Re: Recently Diagnosed with Hashimoto's

Well, your endo is better than any of my former endos....they didn't even run FT3's when I was hyper with Graves'.

I hated it when my former doctors tried to dismiss my obvious hypo symptoms as anything other than thyroid. Even my current doctor needed to be convinced at times. My answer to all of them was: "Please let me try higher thyroid hormone levels and then we'll see". ALL of my symptoms dissipated when my levels got high enough.

Not surprised to hear of her stance with T3 - many doctors are reluctant to Rx it. I was very pleasantly surprised when my current doctor recommended it to me...Cytomel was my "missing link".

Glad you'll be meeting with a new doctor. I'll definitely be looking for an update! (I'll be on vacation from the 16th thru the 22nd)
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Last edited by sammy64; 04-06-2011 at 05:04 PM.

 
Old 05-20-2011, 08:19 AM   #10
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Re: Recently Diagnosed with Hashimoto's

I've just received lab results from my most recent test, and (no surprise here) my doc wants to lower the dosage. Here are the results:

TSH: 0.057 Range 0.450-4.5
FT4: 1.6 Range 0.82-1.77
on Synthroid 75

Obviously my levels are on the higher end of the range, and I do feel a bit better, but still not like when my levels were first raised. I requested before my medication is lowered to have the FT3 test run, and she agreed, although she stated her opinion again that TSH is the best indicator and FT3 has NOTHING to do with hypo patients, and my symptoms are unrelated. I have yet to see the new doc, as my job has had some recent staffing issues.

After I get the results from the FT3 test I feel I'll have a better understanding of all this and then we can focus on other options if it's in range. If it's not in range, I would be willing to go back to Synthroid 50 if she'll agree to add a T3 supplement.

 
Old 05-20-2011, 09:30 AM   #11
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Re: Recently Diagnosed with Hashimoto's

You know, doctors like this need to read "Thyroid for Dummies" 'cuz they ARE dummies!!!

It never ceases to amaze me how information written by endos for the general populace does not seem to "make it" to the doctors treating us.

You were wise to ask for the FT3 test - it's a vital component of the full picture when we are taking thyroid meds.....we need to see if the T4 in meds like synthroid/levo is converting to the T3 used by our bodies.

Your FT4 is in a pretty good place - some people might need it a tad lower, like 1.5 and some people (like me) would need it even higher.

And, you don't just want a FT3 in-range, you want a level at least at mid-range, if not in the upper third of the range.

It sounds like you might need to start doctor-shopping if you can't get this doctor to do right by you.

Also, you might want to read "The Thyroid Solution" to learn of the recommendations with adjusting the synthroid dose when adding T3.

For whatever it's worth, everyone has different experiences with that. For example, my doctor kept my 75mcg dose the same when adding Cytomel. Lo and behold, 4 wks. after adding Cytomel, my FT4 dropped and I needed a levo (generic synthroid) dose increase. I've continued to need levo dose increases each month (I started Cytomel in January).....I finally "hit" both my optimal FT4/FT3 earlier this month.
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Last edited by sammy64; 05-20-2011 at 09:37 AM.

 
Old 05-20-2011, 12:02 PM   #12
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Re: Recently Diagnosed with Hashimoto's

Thanks again for your response Sammy, and Thyroid for dummies is one of the books I have in my kindle list.. lol. I do have an appointment to meet with a new doctor, problem is he comes very highly recommended and because of this, his office is very hard to get in to. As for now, I can keep convincing my current Endo to (at the very least) keep trying, instead of just giving up, and I'll see the new doc in a month.

When I asked if we could run the FT3 test, she said that there was no indication that my body wasn't properly converting. But if she isn't testing for it and she is ignoring my symptoms, what indicators could she possibly be looking for?

Last edited by Jezilynn; 05-20-2011 at 12:03 PM.

 
Old 05-20-2011, 12:39 PM   #13
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Re: Recently Diagnosed with Hashimoto's

Quote:
Originally Posted by Jezilynn View Post
When I asked if we could run the FT3 test, she said that there was no indication that my body wasn't properly converting. But if she isn't testing for it and she is ignoring my symptoms, what indicators could she possibly be looking for?
I wonder the same thing......

I went through similar with my former endos - they seemed to want to blow smoke screens around any valid point I brought up...

That's why I'm on thyroid doctor #5, an internist - she's a keeper!
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Last edited by sammy64; 05-20-2011 at 12:44 PM.

 
Old 06-03-2011, 07:33 AM   #14
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Re: Recently Diagnosed with Hashimoto's

Well I just received my results from my FT3 test, results are:

Free T3-3.1 Range 2.3-4.2 =42%

My FT4 results are at 82%, and my doc thinks its too high and wants to bring me back down to 50/75 every other day or 75 5 days a week. She will not prescribe cytomel, I've already asked.

Appt with new doc is n 3 weeks, so which sounds like the better option for the time being, 50/75 EOD or 75 5 days a week?

 
Old 06-03-2011, 08:08 AM   #15
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Re: Recently Diagnosed with Hashimoto's

I need my FT4 at the top of the range and continue to feel good even if it goes slightly above range.....my doctor understands this.

Your doctor doesn't seem to appreciate what is involved with proper thyroid treatment.

Going to 50/75 every other day is the same as taking 62.5mcg every day which means a weekly dose of 437.5 mcg......75mcg 5 days/week means 375mcg weekly.....how does she consider the alternating dose "back down"?

No matter what, if 75mcg daily "brought you" to your current levels and you are still dealing with hypo symptoms (probably due to your lowish FreeT3), taking a lower dose will just make you feel worse.

Hopefully, when you see the new doctor, he/she will be receptive to adding Cytomel, which is obviously needed.
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Last edited by sammy64; 06-03-2011 at 08:13 AM.

 
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