HYPER GOING HYPO?

[buffditto446]

TSH and T4 Free have dropped below normal for the very first time.  T3 Total is in normal range. I have been on PTU for 5 years controlling hyperthyroidism. 50 mg PTU 3x a day. Endo said cut the mid day 50 mg of PTU and lets do labs in a few weels to see. I also have multinodular goiter and I am feeling kinda full there again with the throat clearing and the swallowing feeling a little different as this happens from time to time and then goes away and am getting a sono done there in a few days to compare to the lasts years. I am wondering if the hysterectomy I had recently could have thrown my numbers or condition off now that I have been thrown into surgical menopause as well having had ovaries, tubes and uterus removed. I am 52 years old by the way and had not gone thru menopause yet however was experiencing symptoms. I have been anemic for quite some time also and this concerns me as well b/c it's not for lack of good nutritional lifestyle. I am wondering what could have caused me to start going hypo and for the Endo to say cut the meds down after finally getting in to see him 3 whole weeks after the labs were done. For all I know the numbers could have changed again to normal or who knows what! I am confused as to what causes nodules and goiter to flare up at times...is it hypo? hyper? or both? Shouldn't the Endo have done labs again since those results were from 3 weeks ago?

Thanks in advance for any input.

[buffditto446]

I havent been in touch with Elaine Moore for some time now but she was really there for me thru so much starting in the year 2000. If not for her I don't know what would have happened to me. Also a woman named Dorothy here in NY was also working with Elaine in the message boards and all of us at about.com forums. Two great gals! Do you know them also?
Got the labs back today that were done 3 days ago:
TSH                                          0.26     L       40-150
T4, FREE                                  0.8                0.8-1.8
T3 UPTAKE                               29.2              22.0-35.0
T4, FREE,CALCULATED            1.96              1.53-3.85
T3, TOTAL                                 146               60-181
Now the question is this...Should I do 25-25-25 PTU3x a day instead of 50-50-50 PTU 3x a day since I am on the low end of normal in the labs and a below normal TSH.....OR.......do you think that 25-25-25 PTU3x a day too much of a cut for a start? With my TSH being low also what will this do? The Endo said yesterday that it sounded ok. I would like to try.  
Oh and by the way I read about ferrous gluconate (Iron), and there are some scarey life threatening allergic reactions that were on the list.(Why did I read it?). Also Iron labs were re done and I am still anemic: Iron, Iron and Iron Binding Cap., Transferrin Saturation, Ferritin are low for about a year. The Dr said my cells are small and my body isnt taking in what it needs. I want to know what is stopping the absorption and they get all huffy with me and say take Iron! There were and are no bleeding issues. My diet is full of Iron too and Vitamin C etc.
Now here is something I didnt expect. On the labs I just got back Glucose read 2 points above normal! I didnt fast and I think I ate dark chocolate before the test. Do I need to be concerned with diabetes now? Should I go get a finger stick to double check?
I am seeing my (hypertension), Primary Care Physician tomorrow and will ask him to check my glucose and show him the labs and see what he says about the Iron also. I also live with Panic Disorder for many years and he has me on Klonopin 0.05 mg 3x a day for years b/c nothing else worked for me. And yes, lol, I am in therapy. Being a single Mom on disability of a 10 1/2 yr old boy that is borderline ADHD & OCD and goes to therapy too is really hard on me. Oh did I tell you that I have Fibro and go to massage therapy 3x a week? So whats a little surgically induced menopause post hysterectomy now on top of it all? Isn't being a woman fun? YEESH!
Take Care *Barb
  

[GravesLady]

I see you are an Elaine Moore fan. Nothing else needs to be said.

[buffditto446]

Hi there:
My WBC gets a tad low at times due to the meds by a point or 2. If it were above normal then there would be cause for concern and infection. I saw it on my labs just this week. It's good to ask questions though and be in charge of your bodys recovery. You are doing the right thing. My Mom always said ask questions if you want to know something.(smile)
Be well! Hugs *Barb in NY

[buffditto446]

Thanks so much for your support and will be on tomorrow with good news and results.
God bless ya back...hugs Barb

[buffditto446]

Thanks for the FT3 lab tip i will do it next time-Its been a while since I asked for that specifically-lets see what the labs reveal tomorrow in the meantime.
Hugs Barb

[buffditto446]

I went to the Endo and my sono compared to last years was the same, not the greatest but the same. Goiter is not prominent at this time either. I mentioned doing 25-25-25 3x PTU and he was all for it. He said he doesnt believe I have gone hypo in that I had the D&C mid June and then the full Hystereectomy June 27th and finally got around to doing labs on Aug 8th to get the "out of wack results" which he says is "euthyroid sick symdrome". The new labs I went for were not available today but will be tomorrow and I told him I went elsewhere as I have in the past to check the numbers again and he was quite cooperative with me today to my surprise. I asked why am I on PTU so long if I was under control most of the time and he said many patients stay on the meds for years and are doing fine and that if I want to see if a lower dose is tolerable and stabilizing for me to try and lower then lets try it and see how it goes. He siad he was keeping me on the same dose that was apparently working for me going boy the numbers,(of course). Also he gave me ferrous gluconate 325 mg 2x a day for the anemia to start taking. I bought a multivitamin/mineral supplement with extra calcium to start taking too,(without iodine and no sugar, starch, dye etc artificial stuff etc). I have many allergies I read everything carefully. Its made by Windmill and is compared to "One A Day Womens" vitamins. I have to confess I am afraid to even take the Iron and the Vitamins. I am so drug and food sensitive. I have to do something about this anemia and by the way he never heard of hypo causing anemia and I have been reading this quite a bit. He flatly refuses that I am at all hypo b/c TSH is low, T3 Total is "normal" and onlt T4 Free was low and I had the surgeries that he believes threw me and or the labs temporarily off. Well I bet I will feel better on 25 mg 3x a day and maybe even less after I get my hands on those labs tomorrow! GRRRRRRRRRRRR!  The Endo can spew out all is book knowledge but I was the one who changed the dose today and he said that is a great idea and I was the one who suggested getting labs again and when he said have my nurse draw blood I said I went somewhere already and will have results tomorrow! He said call him with the results to discuss dose change if necessary. Yeah Right! As if he will know what to do before I do....this is ironically hilarious and I thank God I had people like Elaine Moore and a few others personally guide and teach me over these years on the forums and thru emails. This site is also a God send for us all.
*Barb in NY

[GravesLady]

Why doctor checks or test for WBC = white blood cell:

White blood cells help fight infections. They are also called leukocytes
ATDs can cause low white blood cell.

Low WBC count can cause:
Agranulocytosis, low WBCs — Agranulocytosis is characterized by a decrease in the production of white blood cells. This condition is serious, but affects only one out of every 200 to 500 people who take an antithyroid drug. Elderly people taking PTU and very high doses of MMI may be more susceptible to this side effect.

Bone marrow failure (for example, due to infection, tumor, or abnormal scarring)

Collagen-vascular diseases (such as lupus erythematosus)

Disease of the liver or spleen:   Some people taking antithyroid drugs develop liver damage. MMI and PTU are about equally likely to cause this side effect, but the type of liver damage seen with PTU can be more serious. Most people recover fully when the drug is stopped.

Aplastic anemia — A rare, but very serious complication associated with the use of an antithyroid drug is aplastic anemia (failure of the bone marrow to produce blood cells).

[skymax2000]

Also, I'm on PTU and had to get tested for white blood cell count too. Not sure why but internist thought it was very important. . Graves Lady?

[GravesLady]

You are not hypo as you stated before.  You are still hyper and need to still be on the PTUs to get levels closer to normal before stopping them..  When you do get ready you need to wing off - go slowly off them reducing med. dose a little at a time.

Suggestion, have them do a FT-3 with the FT-4 and TSH.  Not a T-3. Your levels looks like you might be having a concersion problem but neet the FT-3 done with the FT-4 - if its not too lake.  If so have them do it next time.

Palpitations are from TSH being too hyper/low.

Keep us posted and good luck!

[DLA]

Well, if your TSH is still .2 that would mean you are just a tad hyper still.  FT-4 is a little low and I have no idea what that means.  Sorry.  Hopefully you will find out something today and someone else will be on here to help you soon, b/c I obviously can't.  Sorry.

Hope you get some good news today, sounds like you have been through enough already.

Hang in there and lean on God for strength.  Am praying all goes well.
Dac

[buffditto446]

I am back again. I am quite a wreck this morning. I forgot to tell you that I had palpitations last night trying to sleep and have been on Tenormin for blood pressure for years anyway also this morning I have had 3 loose BM's since I got up. I woke up every 2 hours during the night and my nerves are absolutely shot to the devil. I am so confused as to what my thyroid is actually doing here so I just took the 50 mg AM PTU.
Waiting on labs.........and going for throat sono at 1 pm......and trying not to be such a panicked wreck here.
Thank you so much for being here if for nothing else than to let me vent!
HUGS TO ALL ,,,Barb

[buffditto446]

I FORGOT TO SHOW YOU THIS:

These are my labs from the Endo from Aug 8th and since then I have been feeling more and more hypo and scared to even take the PTU at all but I have to see labs I took again with other Dr ASAP. I have seen my share of hospitals and ER's wayyyyyyyyy too much this summer!
TSH             0.20         0.35-5.50
T3, Total       139          60-181        
T4, Free        0.83        0.89-1.76
As you can see TSH and T4 Free went below normal and T3 Total is in range.
I am surely in surgical menopause now due to the hysterectomy so I am having all kinds of mimicking symptoms. I am more concerned about my 10 year old and my being able to care for him then what is actually going on so I am praying I get those labs back today.
Thanks again, Barb

[buffditto446]

Hello and thanks so much for your responses.
WOW! The thought of remission never entered my mind b/c I have the nodules. I have all the hypo symptoms and feel absolutely lousy. I am seeing the Endo today for thyroid sono and want to tell him I don't think I should be taking 50 mg of PTU 2x a day like this.
I went to my alternate clinic doctor and might have new labs back today to see what is really going on since my regular Endo did these labs Aug 8th and tells me almost 4 weeks later,(last Friday), in the office to cut the mid day PTU of 50 mg and continue 50mg in am and 50 mg in pm and wait weeks to do labs again. I have been under tremendous stress lately nevermind the hysterectomy recovery but I didnt even consider that I might be in remission! So if I have gone hypo will I need hypo meds? I don't think so b/c I do have Graves Disease. I am fearing myexedema or worse b/c I am seeing and feeling a few symptoms unless its me panicking which is what I do.I left my Endo last friday angry and he knew it. We will see what happens today when I go. If the goiter and nodules have increased in size isnt that from being hypo and on too much PTU? I want to ask the Endo to stop the PTU and I know he will flatly not agree. I dont want to even think about another surgery,(which is what he will no doubt suggest),...my poor body...jeeze!  
*Barb in NY  
P.S. Finding a good Endo is impossible so I use him for rx's and labs and do my homework and try to be in charge of my own recovery. God bless us all who go thru this awful stuff!

[DLA]

Wow!  Sounds like remission really might have come for you!  If it has CONGRATULATIONS!  Not many people get that.

Let us know!

[GravesLady]

With ATDs (PTU), the goal is to bring your hyper levels down to normal levels in which you would be taken off the meds. altogether to see if after one year off the meds., levels are still at normal.  If so, then you would be considered in remission.  In your case it sounds like you were left on meds. too long and meds. made you surpass normal levels to hypo levels. You are lucky it was caught.  I have been at forums where a person right then and there was going into a coma and almost died from being too hypo due to meds. She ended up in the ER . Thanks to the forum members who keep urging her to go to ER, her out come was good.
I am surprised it took four years to get this far.  Normally it takes 18 to 24 months.  And after that long the cause is given up and other treatment considered. Four years is a long time, especially with out other damages to the system.

Test should be done every 4 weeks with med. dose change and 6 weeks if no med. dose change.

Stress, illness, operations, menopause surgery or naturally, etc., can effect our levels.

Levels normally has nothing to do with nodules unless its a hyperfunctioning nodule, which yours doesn't sound like.  I don't have flare ups.  I do feel pressure in the area when my TSH is too hyper.  When at a hypo level, the pressure seems to subside.
You should have your nodule tested annually to see if there are any changes. If it grow large and fast, or if causing problems, surgery would be required.
Depending on the size of the nodule, symptoms may include difficulty swallowing, shortness of breath, and voice changes (hoarseness).  Pain is uncommon. An enlarged thyroid can also press on your windpipe or your esophagus, which may make you cough, have a hoarse voice, feel shortness of breath, feel like you don't want to wear turtlenecks or neckties, feel fullness in your neck, experience choking or shortness of breath at night, or feel like food is getting stuck in your throat.

Good Luck - you might be headed to remission, lucky lady!