# Tired and Frustrated



## lavender (Jul 13, 2010)

I had my TT for graves 7 weeks ago, and for the first month I felt wonderful. All my hepertyhroid symptoms were gone. I had tons of energy, fibromyalgia pain was practically non-existant, Could not remember when I had felt that good. I was taking 125 mcg levothyroxine and tons of calcium because my parathyroids weren't kicking in after surgery. The only complaint was that occasionally I would feel dizzy and headachey when I could feel my calcium go low.

When I saw my endo a month ago, he said my thyroid levels were low (I forgot to ask for copies of the labs, but he mentioned today that my TSH was around 8) and that I was not on an adequate dose for my weight, and bumped me up to 150 mcg levothyroxine. He also prescribed calcitriol (vitamin D in an active form that does not have to be broken down by parathyroid hormone) to help my body absorb calcium hoping that this would allow me to take less calcium.

Over the last two weeks, I have been feeling progressively worse, symptoms feel like hyperT to me: anxious, irritable, easily agitated, headachey, dizzy, intolerance to heat, heart palpitations, elevated BP, diarreah, fatigue, short attention span, confused, unable to think clearly, muscle aches, not interested in eating, gaining weight, hair loss. (these were all symptoms I had when hyper)

I had my period at the time, and re-started Fish Oil and Vitamin B that I was taking before surgery. I have played with dropping and then raising the amount of calcium I am taking based on how I felt, but now I am so confused by my symptoms that I do not know what it what.

Lab results from yesterday:
Calcium 8.9 (8.5-10.5) three weeks ago 9.2 (8.4-10.2)
PTH-Intact 18.8 (8.2-83.5)-This is parathyroid hormone. Three weeks ago, it was 13.8 (12.0-65.0)
Free T4 1.5 (.7-1.8)
TSH 3.07 (.50-6.00)
Three weeks ago Vitamin D was 33 (30-100)

Free T3 was not checked, endo said that this only necessary for someone who is hyper. He did go ahead and order it for next month when I asked.

Endo's opinion was that all my labs are in range, so he does not know why I feel bad. He said that he doses thyroid meds off TSH (Which I know from all you is not right). He did acknowledge that I was feeling good before and am not feeling well now and agreed to lower my dose to see how I felt. He stopped the calcitriol since my PTH level is in range and my insurance refused to cover the $84 script. He sent me home with a bag of Synthroid 137 mcg, and is checking labs in 1 month. said if they were normal and I was still feeling bad, he would direct me back to PCP as he could not be sure my symptoms were thyroid/parathyroid related. He told me he does not care if I keep eating a bottle of calcium every week, but encouraged me to continue reducing slowly.

I started graduate school 4 weeks ago after 4 months on disability leave, and had to drop a class this week because I was overwhelmed by the work. This is a big change for me and I realize that it is raising my stress level. I don't know if the reason I am not feeling well is increased stress/thyroid/calcium/what? I really just want to feel good again, and I am tired of being sick. I want to return to the land of the living and be a productive member of society again.

Can anyone offer any ideas/suggestions/hope?


----------



## tiffdb (Sep 5, 2010)

Lavender,

I don't have any ideas or suggestions.  I wish that I did. I hope that one day I do. I am just thankful for the kind words and encouragement that you have given me and so many others on here. I know how awful it is, but the suffering you have endured has given you the wisdom and ability to help the rest of us on this awful journey.

I have spent the past year trying to figure out what the heck is wrong with me. After my second baby, my body just developed a mind of its own and I've been fighting it since. And no one around me seems to understand or even believe sometimes what I'm going through. It if wasn't for "strangers" like you on the internet, I'd probably be a lot worse off than I am. So, I have no advise to offer, but just a great big hug. Thank you for being vulnerable and open and encouraging all of us!


----------



## lavender (Jul 13, 2010)

Thanks. What a sweet message. It's good to know I helped someone. Today was a much better day. Heart palpitations stopped. HUGE RELIEF! I'm not sure if it was the change in synthroid dose (probably too soon for that), or what, but I am greatful for a better day. 
I have to remember that when I have a bad day or a few in a row, that it's just a one day thing or a few day thing not a forever thing. I can get really stuck in fear that I will never get better, and that's just not true. I have felt much better since my surgery, I have had some really amazing days, and I have to believe that it is possible for me to get back there, and that my symptoms are not in my head no matter how crazily the doctors look at me. They are not gods, and my body is not a medical text book. I can feel so powerless when it comes to someone in a white coat telling me what they think is right for me. But, I know my body better than they do. After all, I have been living here for 32 years. And whatever they say, I get to make the final decisions about what happens to me.


----------



## Christinals (Sep 9, 2010)

Lavender - I am so sorry you had a rough few days (I am not sure how I missed your post). I am glad you are doing better. How are you feeling today? Those heart palpitations are nasty! You have been very helpful to many, including me. Hope today is a better day.

-Christi
:hugs:


----------



## Andros (Aug 26, 2009)

lavender said:


> I had my TT for graves 7 weeks ago, and for the first month I felt wonderful. All my hepertyhroid symptoms were gone. I had tons of energy, fibromyalgia pain was practically non-existant, Could not remember when I had felt that good. I was taking 125 mcg levothyroxine and tons of calcium because my parathyroids weren't kicking in after surgery. The only complaint was that occasionally I would feel dizzy and headachey when I could feel my calcium go low.
> 
> When I saw my endo a month ago, he said my thyroid levels were low (I forgot to ask for copies of the labs, but he mentioned today that my TSH was around 8) and that I was not on an adequate dose for my weight, and bumped me up to 150 mcg levothyroxine. He also prescribed calcitriol (vitamin D in an active form that does not have to be broken down by parathyroid hormone) to help my body absorb calcium hoping that this would allow me to take less calcium.
> 
> ...


Consider this......

http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

Free T3 should be checked when the person is not responding to T4 therapy. The patient may not be converting and the only way to find out is to run FT3 and the person is in hypo state when this happens. Tch. Too scary that we are putting our lives in the hands of the misinformed.


----------



## lavender (Jul 13, 2010)

I stopped the vitamin D on Friday. Doc didn't renew the script and it was just too expensive. Vitamin D was supposed to help me absorb calcium, and I did not see a change in the amount of calcium I needed. I also read somewhere that calcitrol shuts down Parathyroid function. It's hard to tell with the different lab values, but it does appear that my parathyroids are getting better, just very slowly. I am hopeful that this is one issue that will get better with time.

I also stopped the fish oil and B. I read somewhere that any kind of supplement can interfere with Calcium absorption, and I figured it was better to reduce the variables since I felt well before I started taking them.

I know the FT3 needs to be checked, and I am very frustrated with the endo. At this point, I will have to wait a month to see what those values are. I am not sure if it is time to go doc shopping or not. He was at least willing to listen to my requests. And I know that when I feel bad, I want to fire all my doctors, which has sent me all over town with no real continuity in treatment in the past.

I am just having a hard time knowing if I am hyper or hypo at this time, and I do not feel like this is evident in my labwork. When I looked over past labs, I saw that before the Graves escalated this year, My FT4 was usually around 1-1.2. When my PCP first told me I was hyper (one month before my storm) it was 1.4, and I had been having heart palpitations for months. This leads me to believe that I may actually feel better with a lower FT4, but who knows. No one ever checked my FT3 before my storm, and I have had vague auto-immune issues for years with a random low TSH 4 years ago when it all started. So, it is really impossible to know what is right for my body.

How does the body convert T4 to T3? Does the thyroid do this or is it some other process?

I have one question, I know it is possible to have hashi's as well as graves, but my endo was never interested in looking into this since I was so obviously hyper. What blood tests confirm hashi's in addition to graves? In April, when I first got referred to an endo, my Thyroid Peroxidase Antibodies were 99 (<35) and my Thyroglobulin Antibodies were 76 (<20)
They were never re-checked after my storm. In June, my TSI was 258 (<=125) which along with the RAIU gave the Graves Diagnosis.

My understanding is that Hashi's could cause my TSH levels to bounce all over the place, even now that I do not have a thyroid. Is there a way to check to see if I have hashi's now?


----------



## Andros (Aug 26, 2009)

lavender said:


> I stopped the vitamin D on Friday. Vitamin D was supposed to help me absorb calcium, and I did not see a change in the amount of calcium I needed. I also read somewhere that calcitrol shuts down Parathyroid function.
> Doc didn't renew the script and it was just too expensive. Also the fish oil and B. I read somewhere that any kind of supplement can interfere with Calcium absorption, and I figured it was better to reduce the variables since I felt well before I started taking them.


That is correct; you are a good scientist! But, get back to your B-complex and Omega III in about a month. Highly unlikely this is causing a problem provided you are purchasing a good brand that you trust.

I think you could do well with 8 oz. of skim milk per day, incorporate dark greens (collards, turnip greens, beet tops, kale and others) into your diet and get a bit of sunshine. That should make you good to go. Natural is always the best course if it is feasable.

Huggles,


----------



## lavender (Jul 13, 2010)

Last post was edited. I pushed post when I meant to post advanced.

I like being called a good scientist. I have always seen myself as the intuitive touchy-feely artsy non-scientific therapist type. I can learn new tricks when I try, and even when my mind is at half speed! It's amazing what we learn about ourselves when the going gets tough.


----------



## lavender (Jul 13, 2010)

I think I just answered my own question. T4 is converted to T3 in the kidneys and liver. It can be affected by kidney and liver disease as well as the presence of thyroid antibodies.

http://www.suite101.com/content/understanding-the-t3-and-t4-thyroid-hormones-a134923

This leads me to believe that the need for T3 replacement just depends on my body and how it responds to T4 only.

My current thought process is this: When I went into storm, my FT3 was like 5x normal, while my FT4 was only double. Even in April, I felt hyper with a FT4 in range. From this, it seems possible that I am a super-converter, leaving me feeling hyper when my FT4 is in range. If this is true, it would explain why I feel bad with a FT4 of 1.5, when I felt better a month ago when it was lower. This is all a speculative theory without my FT3 tests to confirm.

I just know that I feel hyper now, despite lab results to the contrary, and I want to know why. I suppose it is all watching and waiting to see what happens in the great scientific experiment of my body.


----------



## Andros (Aug 26, 2009)

lavender said:


> I stopped the vitamin D on Friday. Doc didn't renew the script and it was just too expensive. Vitamin D was supposed to help me absorb calcium, and I did not see a change in the amount of calcium I needed. I also read somewhere that calcitrol shuts down Parathyroid function. It's hard to tell with the different lab values, but it does appear that my parathyroids are getting better, just very slowly. I am hopeful that this is one issue that will get better with time.
> 
> I also stopped the fish oil and B. I read somewhere that any kind of supplement can interfere with Calcium absorption, and I figured it was better to reduce the variables since I felt well before I started taking them.
> 
> ...


To be honest w/ you, the school of thought that I favor is Hashi's come first and some go on to develop Grave's. The thinking here is that they are bedfellows. I see the logic in that thinking.

As far as I know, there is no blood test that is definitive for either one. A lot of it is based on labs combined w/ clinical evaluation.

FNA is a good diagnostic tool for Hashimoto's. If there are certain Hurthle cells indigenous to Hashi's then that is purported to be pretty much on target as far as diagnosing. All other labs are only "suggestive" of Hashimoto's.

If you had TT, that gland was sent out to pathology so you could ask if they found the Hurthle cells for Hashi's. There are also Hurthle cells for cancer so one has to be specific.

And, do allow at least 18 months for total healing. You have been through a lot and so has your body. Patience is a huge virtue here.


----------



## lavender (Jul 13, 2010)

My thyroid was evaluated by pathology. No mention of Hurthle cells. "Diffuse Hpyerplaysia and changes consistent with Graves." So that pretty much definitively throws out my hashi theory.

Ah patience. Not my strong suite. The leader of my fibro support group talks about being a type A personality stuck in a Type B body. That is me! I keep getting these lessons from my body to slow down and be patient, but it is so hard.


----------



## Andros (Aug 26, 2009)

lavender said:


> Last post was edited. I pushed post when I meant to post advanced.
> 
> I like being called a good scientist. I have always seen myself as the intuitive touchy-feely artsy non-scientific therapist type. I can learn new tricks when I try, and even when my mind is at half speed! It's amazing what we learn about ourselves when the going gets tough.


It's amazing what we learn about ourselves if we want to learn something about our selves! LOL!


----------



## greatdanes (Sep 25, 2010)

Something that stood out to me was your mention of re-taking fish oil, as if you had stopped during the month you felt well? I only mention it, b/c I too had been taking fish oil for the last few months(then again i was eating suschi like twice a week, b/c we found a bomb Japanese restaraunt) and my tsh plummeted to nothing. It's all confusing to me. Some studies say it's good for you if you have hyper some say, not so good. I guess it all goes back to everyone handles what goes into their bodies differently. Hope you start to feel good again!


----------



## kitemom (Aug 19, 2010)

I wish I knew more so that I could be helpful just as you have been to me, but I'm so new at this, I have a long way to go. I just wanted to let you know that I am thinking of you and will keep you in my thoughts and prayers. Sending big hugs your way along with positive vibes and energy to better health. Hugs!!!!


----------



## lavender (Jul 13, 2010)

greatdanes said:


> Something that stood out to me was your mention of re-taking fish oil, as if you had stopped during the month you felt well? I only mention it, b/c I too had been taking fish oil for the last few months(then again i was eating suschi like twice a week, b/c we found a bomb Japanese restaraunt) and my tsh plummeted to nothing. It's all confusing to me. Some studies say it's good for you if you have hyper some say, not so good. I guess it all goes back to everyone handles what goes into their bodies differently. Hope you start to feel good again!


Yes, I stopped taking fish oil prior to my surgery and waited a while to start it back up again because my stomach was so unhappy after surgery.

I think I started taking it again in the past three weeks, but stopped on Thursday.

It's hard to know if this will help or not. I was honestly taking the cheapest vitamins available from the drugstore. So, who knows how pure they actually are. I may need to look into this before I start adding anything new. For now, I think I will wait a while to add anything else.


----------

