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Old 03-27-2013, 06:19 PM   #1
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TSH suppressed for months but raging hypo symptoms

Hello,
looking for some insight from the lovely ladies here that are so knowledgable
I have been on levothyroxine for months and then went on Synthroid to see if my hypo symptoms eased up. Doc said 8 months ago my Frees and TSH were "perfect".. yet I didnt know why I still had symptoms. Turned out to be a progesterone deficiency. Fixed that, thyroid symptoms eased up, dropped a bunch of weight, sleeping great, mood swings gone, etc etc..
Then the hypothyroid symptoms creeped back up... wicked dry eyes, joint pain, inflammation, weight loss stopped (not gained)... just stalled. My temps, with a brand new mercury thermometer in the morning before getting out of bed, are 96- 96.5. Dry brittle nails, mild constipation, fatigue and horrible hair loss..
In October my TSH was 0.07 (0.300-4.200)
Doc lowered my Synthroid from 125 mcg to 112. Blood work in December-
Free T3 was 404 (202-443)
Free T4 was 1.8 (0.9- 2.1)
TSH was 0.01 (0.27- 4.20)
Doc lowered my synthroid down to 100 mcg.

February- Frees were almost exactly the same but my TSH was 0.04.
What gives? She thinks my numbers look hyper but I still have all of the hypo symptoms.
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Old 03-27-2013, 06:22 PM   #2
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I will say though that all of the other hormonal stuff seems to be at bay.. this appears to only be thyroid.
I read that Normal Frees and chronically supressed TSH with raging hypo symptoms can indicate a problem with the pituitary and or hypothalmus glands.. I have a nasty chiari malformation reducing spinal fluid flow..
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Old 03-28-2013, 03:53 AM   #3
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Well, I'll first say that you are 'lucky' in that you assume to convert your T4 into T3. Your doctor is 'mainly' looking at TSH..what a pity though...cuz that's not going to come down until you are at around 75mcg. T4.

What were your FT4, FT3 before being given Synthroid?
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Old 03-28-2013, 06:53 AM   #4
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Well, shockingly () the last 4 years and 3 different primary care managers, never checked the Free T3, looking back on bloodwork.

Why in the hell do doctors just have no clue??

See, though, I started at 25 mcgs and 4 weeks later did bloodwork.. upped to 50 mcgs and 4 weeks later did bloodwork and upped to 75 mcgs.. 4 weeks later, more bloodwork and upped to 100... then to 125 mcgs and then the doc tells me "everything looks great, i have no idea why you still feel like crap, dont need to see you back for 4 months"....
So i changed docs and we switched over to Synthroid and I did well for a couple of months but then the symptoms came back times 3... ran bloodwork and my TSH was very low.. lowered from 125 mcgs to 112 mcgs.. 4 weeks later, more bloodwork and TSH was still very low so we lowered to 100 mcgs..
Im due bloodwork again this week.. *SIGH*..

I sent a fax to my doc asking her to mark up my labsheet to include the Free T3, Free T4, TSH and hashie's Anti TPO and Tg Ab...
I just wondered really if anyone here had anything odd like this happen. My doc is going oh, your Synthroid dose is too high, since losing weight.. but why am I still plagued with hypo symptoms vs hyper symptoms?
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Old 03-28-2013, 10:26 AM   #5
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Well, people with Graves hyperthyroidism don't lose weight most gain. That's an opposite symptom and some with Hashimoto's have heart palpitations. I don't know when I'm going 'hyper' just by feelings..I have to have a FT4, FT3 to 'tell' or I just feel 'more hypo'.

I have fatigue if my FT3 is above 3/4 of it's range. So, yeah, we can't 'tell' but you surely don't want to call any TSH below 1 'hyper' either.
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Old 03-28-2013, 11:19 AM   #6
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"people with Graves hyperthyroidism don't lose weight most gain"???

My understanding is that weight loss is one of the salient features of Graves disease. I have a friend who lost 40 lbs (he wasn't overweight) before doctors diagnosed his Graves. The doctor who did the diagnosis was surprised that 3 other doctors had been puzzled because he said that my friend had 'classic' Graves symptoms--with weight loss the major one.

That was 10 years ago. He opted for surgical removal of his thyroid and has had no problems since--maintains with Synthroid.
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Old 03-28-2013, 11:38 AM   #7
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I had friends with graves that gained. I happened to have lost til i went hashi's, then gained.
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Old 03-28-2013, 01:11 PM   #8
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I had friends with graves that gained. I happened to have lost til i went hashi's, then gained.
I remember you from other threads, very knowledgable.
I lost when I was simply "hypothyroid" and started on Synthroid, but have been fighting hard to maintain and all losing stopped when the raging hypo symptoms kicked back in.

Talk to me *takes careful notes*

On a good note, I mailed back the TSH and T4 (only) lab sheet my doc sent me last week and included a list of things I wanted tested (Free T3 and the hashies antibodies, plus a full fasting metabolic panel) then booked an appt with her next thurs morning to talk about these. It was all approved and mailed back and its in my box today so I will go tomorrow at 7 and do the blood work, go back monday afternoon to get a copy of everything and will be fully armed at my appt next week. Plus i saw a rheumatologist yesterday.. i gave blood at her office and have a copy of that lab sheet to take with me so my regular doc can see what she is tesing for.

What happens next if my blood work does show the antibodies for hashies?
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Old 03-28-2013, 01:29 PM   #9
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hopefully once you get the 'full' panel of suggested tests we can have a better opinion what is going on. Ultimately you have to work with dr but at least you'll have a better understanding of your labs.

if it comes back hashi's, still depends. Are you in a hyper phase or hypo or both. Kwim.
There is no difinitive answer as ea individual/body has its own special needs.
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Old 03-28-2013, 02:36 PM   #10
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No hyper ... all hypo.... like i said, the symptoms eased up considerably when i first started the T4 meds but that did not last long. Thats why im wondering if hashies is to blame as I know the thryoid tries to come back to life several times, bringing a relief to symptoms until it just cant do it anymore and crashes, bringing back all the horrid things you thought were gone...i will post my results here, with ranges in a couple of days..
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Old 03-28-2013, 02:42 PM   #11
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Can you get to Niceville? He's supposedly very good.
Dr. Fedosky/Niceville
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Old 03-28-2013, 07:11 PM   #12
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Ive heard of him. I might check him out, thanks
Im doing labs at 7am in the morning and will be going to get a copy after work.. long before my doc gets em
She had NOO problem ordering all of the tests I asked for *sigh.
She is wonderful but doesnt know much about thyroid health.

I will post labs tomorrow night or saturday.
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Old 03-29-2013, 03:33 AM   #13
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Quote:
Originally Posted by Leo41 View Post
"people with Graves hyperthyroidism don't lose weight most gain"???

My understanding is that weight loss is one of the salient features of Graves disease. I have a friend who lost 40 lbs (he wasn't overweight) before doctors diagnosed his Graves. The doctor who did the diagnosis was surprised that 3 other doctors had been puzzled because he said that my friend had 'classic' Graves symptoms--with weight loss the major one.

That was 10 years ago. He opted for surgical removal of his thyroid and has had no problems since--maintains with Synthroid.
This is pointed out in almost ALL medical books for the last 24 years. Before the last 24 years? Meh, don't know.

It's not the 'major one'..the 'major classical symptom' for Graves disease is a pounding, racing heartbeat, shaky quad muscles going up and down stairs.

Most people just going 'hyper' from too much hormone...will be weight GAIN when too much T3...just sayin'....
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Old 04-01-2013, 06:04 AM   #14
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So, I did my labs Friday morning early. I will run by the lab tomorrow or wednesday to get a copy before seeing my doc Thursday morning. She, and the last 2 PCMs i have had for the last 4 years are relying soley on the TSH and T4 figures to medicate me but I was digging through old papers this weekend and found labs that I asked to be drawn the first week of December. This was about 5 weeks after starting the bio identical cream and 90% of my hypothyroid and progesterone deficiency symptoms went away.. I was sleeping great, had energy all day, losing 2-3 lbs a week, every single week.. the mood swings went away and my hair stopped falling out.
Sadly.. for unknown reasons, this euphoria ended, lol.

Here are those labs-
Free T3 404.00 (202-443 pg/dl)

Free T4 1.8 (0.9- 2.1 ng/ dl)

TSH 0.1 (0.27- 4.20)

I have no idea what happened but my hypo symptoms came back along with alot of inflammation (wrists, hands, eyes, neck)..

So due to low TSH.. my doc keeps lowering my synthroid. But with TSH being a puititary hormone, im seeing that most people do better with it supressed..?
I went from 125 mcgs to 112 mcgs to now.. 100 mcgs and hypo as hell..

Any thoughts?
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Old 04-01-2013, 03:38 PM   #15
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I would have them check bloodwork for the Progesterone also. I used the cream for several years and didn't do so well with it. Testing will tell you if the Progesterone cream is actually raising your levels to where you need them to be.
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Old 04-01-2013, 04:43 PM   #16
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Thanks Erin!

I am using a reallygood bio identical doc (a gynecologist).. she is the one who told me, after these hypo symptoms came back, to look closer at the thyroid, that it wouldnt be the progesterone. But.. I am planning to do another saliva profile kit very soon and then I can tell if my estrogen has come down and progesterone has come up, to normal limits.

So I got my new bloodwork today (days before my doc did, heehe)
I am happy to see that it looks like there is no hashies. I was really worried about that because once you have one autoimmune disorder, it just opens the door to a host of others like celiacs and type 1 diabetes.

Thyroid peroxidase AB- 16 (<35)
Tg AB- 20 (<20)

TSH still suppressed at 0.03 (0.27- 4.20) and its been this low for 6-8 months.

But heres whats interesting. In 4 months, where I went from feeling awesome to feeling.. so..so and the hypo symptoms came back pretty hard, this is where my labs are now.

Free T3 went from 404.00 (202-443) in December.. to
327.00 now.
Free T4 went from 1.8 (0.9- 2.1) in December.. to
1.3 now.
Of course, my doc keeps seeing the low TSH and dropping my synthroid.
Didnt I read that the Free T3 needs to be on the higher end of the range and the Free T4 should be at least midway in range for alot of people to see a reduction in symptoms, as well as TSH under 1?

My cholesterol did go from 200 to 159 (0-200) so that can be an indication that my thyroid did kick it up a little..

So, does it look like I am not converting the T3 correctly and should may be up my dose back to 125 mcg of synthroid and get my doc to RX some citomel? I never had hyper symptoms on the 125.. im on 100 now and just dont feel good.
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Old 04-02-2013, 03:25 AM   #17
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I think that's the first time I've seen FT3 range numbers in 100's. Normally that's Total T3 range numbers. They're normally like the FT4 results, with a decimal point. So is it really Free T3?

You're just a Little over mid-range on the FT3 (T3 being our energy), or Total T3, whichever that really is. Mid-range is 322.5 for That range. 2/3 up the range would be 362.66. 3/4 up the range would be 382.75.

That FT4 lab mid-range is 1.5, so you're below it just a little bit. "Around" mid-range for FT4 seems to be fairly fine for most people from what we've seen here.
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Old 04-02-2013, 05:52 AM   #18
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Given your lab numbers, it's possible that whatever symptoms you're experiencing are not due to thyroid at all. Thyroid 'symptoms' can be due to a variety of other sources--which is one reason it's difficult to get properly diagnosed.

You probably should have your doctor focused on the source of your symptoms rather than just trying to adjust your thyroid meds.
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Old 04-02-2013, 05:54 AM   #19
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G'morning..
Ok, looking at the lab sheet, Quest Diagnostics does the TSH and Free T4 testing (they are super cheap) but Baptist Hospital Lab does the Free T3.. maybe thats why the ranges look different, but im looking right at the sheet.. defientely not Total T3..
The antibodies tests are shipped out.. they took 2 days for results.

So since I apparently felt much better in December when my Free T3 was almost at the top of the range, wouldnt it make sense to try and get there again to feel "optimal?"..
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Old 04-02-2013, 05:57 AM   #20
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Quote:
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Given your lab numbers, it's possible that whatever symptoms you're experiencing are not due to thyroid at all. Thyroid 'symptoms' can be due to a variety of other sources--which is one reason it's difficult to get properly diagnosed.

You probably should have your doctor focused on the source of your symptoms rather than just trying to adjust your thyroid meds.
But honestly, I have no other health problems. Ive eliminated soy, gluten, aspartame and started a good quality fish oil, multivitamin, D3 supplement and B12 along with the bio identical progesterone cream, months ago and 95% of the symptoms I had, went away (along with starting Synthroid)..
The weight started coming off, I even cut out caffeine, other than 1 cup of coffee in the morning..
Thats why im shocked that as my doc saw the TSH suppressed and started lowering meds, my symptoms came back, with a vengeance
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Old 04-02-2013, 06:18 AM   #21
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I'm not shocked at that at all. Your doc 'seems' to go more by TSH than anything else, including how you feel, hence, lowering the T4. I know that when I finally got some T3 after being on T4 for over 10 years, I feel best right up around 3/4 of the T3 range. However, you haven't been on any T3 yet.
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Old 04-02-2013, 06:46 AM   #22
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Yeah but how in the world do we know if we are in that percentage that "needs" supplemental T3? Do my lab results look like im converting ok, just in need of putting my synthroid back up to where I was in December?
So confusing

I just cannot believe the difference in how i feel, just in a few months of the lower dose.. crazy.

THEN.. i read that starting the Cytomel is very tricky.. you have to first lower your T4 for a week or two and very, very slowly add in the T3 in small doses, twice a day because of the shelf life of the T3
People report all kinds of adverse side affects... IDK what to ask of my doctor actually.

If my T3 appears to be converting ok, I guess maybe I should just ask that for now, my synthroid dose go back to where it was... ?
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Old 04-02-2013, 06:48 AM   #23
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not that im asking for any medical advice... mind you.. just a "what would you do in this situation?" kinda thing..
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Old 04-02-2013, 06:51 AM   #24
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if that was ME and MY body, Id ask to go back up to where i was. Explain to doc your symptoms etc and see how that goes.

you dont seem to have an issue converting to T3 atm so i'd just work with what you are doing now.

If all else fails, you can get another dr/option and try Fedosky.

My TSH is .006 but my Ft's are where they should be. Ea patient is an individual and while someone might be hyper on those levels if they fts were high, yours arent.

Last edited by inatic; 04-02-2013 at 06:53 AM..
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Old 04-02-2013, 07:34 AM   #25
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if that was ME and MY body, Id ask to go back up to where i was. Explain to doc your symptoms etc and see how that goes.

you dont seem to have an issue converting to T3 atm so i'd just work with what you are doing now.

If all else fails, you can get another dr/option and try Fedosky.

My TSH is .006 but my Ft's are where they should be. Ea patient is an individual and while someone might be hyper on those levels if they fts were high, yours arent.

I agree. I was steller on 125 mgs a day.. i think I will go back there first.. and see if things improve.
Thank you for your help.
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Old 04-02-2013, 09:54 AM   #26
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I agree that you probably don't need T3. I take Cytomel, but my T3 was below the lab range--and my symptoms were incredible because of conversion problems--when I started.

I have a great endo--and even he is wary of a very low TSH. However, mine is higher than yours--although taking T3 tends to suppress the TSH even further. It was only the fact that I take Cytomel that convinced him that my TSH wasn't too low.

Doctors are very wary of thyroid hormones because a wrong dosage can cause damage to so many bodily systems. However, most good thyroid doctors consider both lab values and the individual's symptoms.

When I mentioned a non-thyroid 'cause' for your symptoms, I wasn't thinking of illness so much as other hormonal issues or vitamin deficiencies. For example, when my T3 tanked recently, my endo also tested my B12 because being low in either would result in the same symptoms.

Last year, I had some weird symptoms that seemed thyroid related, and my endo ran some tests. His conclusion (based on my symptoms and the lab results) is that I'd had some virus that ran through my system and 'triggered' several different hormonal reactions. I was fine within 2 weeks, but it was very weird.

I hope you get some relief--and answers.
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Old 04-02-2013, 10:34 AM   #27
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My thyroid doctor (who is not conventional) always says the same thing when we look at my very low TSH on the lab report: Exactly as expected. It is low because I take thyroid medication.

I didn't see Reverse T3 in your tests. I always mention that in these threads because that is my particular issue. I convert T4 into too much RT3 which whisks away my FT3 so it is like I don't have enough. My first labs showed my FT3 at a fairly "ok" level, but I felt terrible. When my RT3 finally got tested, it was high. High reverse T3 and low free T3 combine to almost no usable T3.

I take T3 only, no T4 at all. This is kind of unusual and can be dangerous if you take too much. The doctor ramped my dosage up slowly and I pay close attention for any hyper symptoms.
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Old 04-02-2013, 07:52 PM   #28
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Wow.. we are all so different in what works and doesnt work. I guess you guys are all balanced at this point? Trial and error I suppose?

Leo, good point on the virus thing. I havent been sick but I do know that illnesses can cause your thyroid levels to go wonky until its out of your system...thanks for the input, everyone. Much appreciated

So I faxed my doctors office today and asked for a call back. I explained that lowering my synthroid from 125 to 112 and 112 to 100 (after seeing my supressed TSH and thinking it was from taking too much thyroid medication) has brought back my suffering with a vengeance.
I asked that she please raise my meds back to where they were (125, not 112) and I would touch base in 4-6 weeks with an update and would need a new lab sheet mailed to me.
The nurse called. She said.. wait for it.... ok
I am happy they are listening to me but its just so odd that I have to be the one to ask for the right tests and the one to ask that the meds be adjusted. I know shes not an endo but still

Anyone else notice that joint pain and dry, gritty eyes are X20 when the thyroid is off?
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Old 04-03-2013, 12:56 AM   #29
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"I explained that lowering my synthroid from 125 to 112 and 112 to 100 (after seeing my supressed TSH and thinking it was from taking too much thyroid medication) has brought back my suffering with a vengeance."

Then again, it may be that you only need a little T3 added to your T4 now, at this lowered T4 amount. For example, when T3 was added to my T4, I Was taking 100 mcg. T4. They lowered that to 75 mcg. and added 5 mcg. T3 once a day. Then awhile later went to 5 mcg. T3 2x/day (10). We slowly worked that up to 12.5 mcg. 2x/day over the next 1.5 years and I've been on the same amounts now for about a year (75 mcg T4 and 25 mcg. T3 (12.5 mcg T3 split 2x/day).
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