# Not sure what I have...(LONG story)



## struggling (Aug 31, 2011)

Hi everyone! I am new to this site and still trying to figure out what is wrong with me (and that seems to be a familiar sentiment to everyone here!:tongue0015

HX:
Dx'ed Jan 2009 at age 33 with invasive breast cancer which had spread to a few nodes. Had 6 rounds of chemo and 33 radiation treatments. Did well for about 2 years.

Dec 2008 started with severe, chronic constipation. Saw my onc in Jan 2011 and discovered I was anemic and he ordered iron tests and sent me to a gastro for a colonoscopy, which was normal.

Constipation continued, so trying to rule out causes went to my gyn and scheduled surgery for my multiple uterine fibroids - surgery to be in mid April.

Went back to onc for routine follow up in Mar 2011 - still anemic. He pulled my iron results and saw my ferritin was 7 (ref 13-150) and iron % sat was 9.7 (ref 15-50), so he decided we would do IV iron, as I can't tolerate the oral stuff. Told him about my surgery coming up and he re-drew labs.

I waited and waited to hear from his office, but no call came, so I figured my labs must have improved and I no longer need the infusions. Good, whatever. I had the surgery which was supposed to be laparascopic but turned into an open abdominal because of the size and location of the fibroids. Had 12 removed, several the size of tennis balls.

Now I start feeling really really poorly. Fatigue, SOB with slightest exertion, dizzy beyond belief, orthostatic hypotension, insomnia, freezing cold all the time etc..

I go back to my onc in July and discover that my ferritin had dropped even further (like a 2 - he failed to give me that report). This was the March result BEFORE major surgery. He does a head CT for the dizziness and it is clear. Tells me to see an ENT as it might be inner ear related. Um, ok. (it's not, of course).

I do finally get my iron, and go consult a new onc (I have had it with this other guy!). She orders several blood tests, including TSH. The results for that were "high" and her nurse said we'd order more testing when I see her again in 4 months. I feel way too bad to wait that long, so I ordered my own tests and here are the results:

TSH 4.830 range 0.450-4.500 HIGH
T4, free 1.26 range 0.82-1.77
T3, free 3.4 range 2.0-4.4
TPO ab 204 range 0-34 HIGH
Tg-Ab 123 range 0-40 HIGH
Ferritin 365.6 range 10-291 HIGH (oops, too close to infusion)
Vit B12 471 range 230-1050
Total chloesterol 175 range 100-199
HDL 50
LDL 102 HIGH 
VLDL 23

I have never had high cholesterol, but that could be from the Tamoxifen I take to treat the BC.

Any ideas? It looks like Hashimoto's, but my FT4 and FT3 look pretty decent. Why is that?

I see an endo on 9/16 and hope to get more answers, but any light you can shed would be extremely helpful.


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## Andros (Aug 26, 2009)

struggling said:


> Hi everyone! I am new to this site and still trying to figure out what is wrong with me (and that seems to be a familiar sentiment to everyone here!:tongue0015
> 
> HX:
> Dx'ed Jan 2009 at age 33 with invasive breast cancer which had spread to a few nodes. Had 6 rounds of chemo and 33 radiation treatments. Did well for about 2 years.
> ...


Hmmmmmmmmmmmmm and a huge welcome to you! Firstly, I am so sorry to hear about what you have been through. You are definitely a survivor to the max.

I have a couple of thoughts.

Your thyroid may have been damaged due to all the radiation. And secondly, TPO and Thyroglobulin Ab can be markers for many things and one of those things is cancer. Not implying there is something new going on; this could just be residual. But................I would like to recommend that you talk to your oncologist about this.

TPO is "suggestive" of many things so please read............

TPO Ab
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

TPO Ab should be negative, 0
http://www.medlabs.com.jo/docs/Leaflet-17.pdf
(The normal thyroid has TPO but should not have antibodies to TPO)

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Just to be on the safe side. As it turns out, certain thyroid cancers can spread to the breast and in your case, it could be inverse.

http://www.breastcancer.org/risk/new_research/20080312b.jsp

Please let us know if you decide to have a chat w/your oncologist. I hope you do and I hope and pray all fears can be put to rest and that the radiation just zapped out your thyroid.

Sometimes there is a lag time between the TSH lab result and the FT3 and FT4 lab results.


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## struggling (Aug 31, 2011)

Thanks Andros, those links were helpful.

I guess I just have to wait and see what the endo and/or oncologist says next time I go in. I have fingers crossed that it is just radiation burning out my thyroid - though I never thought I would hope for that! At least then I can just be on meds and have a chance to feel like my old self again.


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## Andros (Aug 26, 2009)

struggling said:


> Thanks Andros, those links were helpful.
> 
> I guess I just have to wait and see what the endo and/or oncologist says next time I go in. I have fingers crossed that it is just radiation burning out my thyroid - though I never thought I would hope for that! At least then I can just be on meds and have a chance to feel like my old self again.


I sincerely hope that is what it is also. So, will you please post here when you get the opinions of the endo and the oncologist? I will worry in the meantime.

And definitely keeping you in my prayers for a good outcome here.


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## struggling (Aug 31, 2011)

I see my oncologist on Monday and meet the Endo next Friday. Hopefully will get some answers or a plan of action. Thanks again for your support, will update after I know more.


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## Andros (Aug 26, 2009)

struggling said:


> I see my oncologist on Monday and meet the Endo next Friday. Hopefully will get some answers or a plan of action. Thanks again for your support, will update after I know more.


I am so glad that you have the appts. all firmed up. Glad the Oncologist is the first one because I have a lot of confidence in that field. They don't fool around.

Sending prayers and hugs,


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## struggling (Aug 31, 2011)

Well, the oncologist was a bust. First she was running a ridiculous 2 hours behind (!!!!) and I had gone on my lunch hour without eating, so I was irritable by the time she saw me. She glanced at my labs, said "looks like you have Hashimoto's, you need to see an Endocrinologist for that, I'll write you a referral" and that was that. I was also having a problem with my eyes - they have been super dry for a few months now and were diffusely red, almost like pinkeye. She helpfully said "you need to go to an opthamologist for that". Then she informed me that my iron had tanked out again and gave me samples and an RX for oral iron and sent me on my way, to be re-checked in 2 months and get an update on what the Endo had to say.

Grrrr. Is it so hard to just have one doctor that treats everything?? I understand that the onc may not be the best for that as she is tremendously busy, but my PCP was no better. I went to him when I was super dizzy, and he just handed me a piece of paper with a referral to an ENT, didn't even draw blood. ?????

Anyway - the Endo appt is tomorrow and I worry that I have put too much hope on that one appt. I guess I will be happy if she puts me on Synthroid as I need some sort of progress on treating these symptoms (fatigue is back with a vengance and constipation and insomnia will not improve no matter what I try!)

Maybe by the weekend I will have some answers. Thanks for listening, it is so great that you are all here!


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## Andros (Aug 26, 2009)

struggling said:


> Well, the oncologist was a bust. First she was running a ridiculous 2 hours behind (!!!!) and I had gone on my lunch hour without eating, so I was irritable by the time she saw me. She glanced at my labs, said "looks like you have Hashimoto's, you need to see an Endocrinologist for that, I'll write you a referral" and that was that. I was also having a problem with my eyes - they have been super dry for a few months now and were diffusely red, almost like pinkeye. She helpfully said "you need to go to an opthamologist for that". Then she informed me that my iron had tanked out again and gave me samples and an RX for oral iron and sent me on my way, to be re-checked in 2 months and get an update on what the Endo had to say.
> 
> Grrrr. Is it so hard to just have one doctor that treats everything?? I understand that the onc may not be the best for that as she is tremendously busy, but my PCP was no better. I went to him when I was super dizzy, and he just handed me a piece of paper with a referral to an ENT, didn't even draw blood. ?????
> 
> ...


With your history, she dismissed you like that? OMG!! At the very least the patient deserves to have further testing to be reassured.

I am sooooooooooooooooooo sad about this.

Hope your endo is on top of this; I really do!

Let us know and bless your little heart!


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## struggling (Aug 31, 2011)

I met with the Endo on Friday and she agrees that it is Hashimoto's. She did a sonogram in her office, and said that my thyroid is enlarged and inflammed consistent with Hashi's and she did not see any nodules or goiters. So yay, I am pleased with this result. She started me on 25 mcg of Synthroid, which we will recheck in 6 weeks and do a 2nd ultrasound in 6 months.

She drew several more labs, not sure which ones, other than she mentioned Calcintonin, so I guess she is trying to rule out medullary cx, though she did not specifically say that. I should get all of those results next week, and I started my meds yesterday morning, so I am expecting to be feeling better soon!


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## Andros (Aug 26, 2009)

struggling said:


> I met with the Endo on Friday and she agrees that it is Hashimoto's. She did a sonogram in her office, and said that my thyroid is enlarged and inflammed consistent with Hashi's and she did not see any nodules or goiters. So yay, I am pleased with this result. She started me on 25 mcg of Synthroid, which we will recheck in 6 weeks and do a 2nd ultrasound in 6 months.
> 
> She drew several more labs, not sure which ones, other than she mentioned Calcintonin, so I guess she is trying to rule out medullary cx, though she did not specifically say that. I should get all of those results next week, and I started my meds yesterday morning, so I am expecting to be feeling better soon!


I am in shock; you got absolutely superior treatment, understanding and compassion from your endo and I am so so glad. I still can't believe the oncologist fluffed you off like that.

Clearly your endo undertands your need to "know" and be reassured.

Please share the results of all labs with the ranges when you get them.

Thank God for this endo! What a true doll!


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## struggling (Aug 31, 2011)

I finally got my labs from the Endo (after getting a call from my onc's office that informed me that my TSH had risen and I needed to see an Endo... )

My TSH is now 6.152 range 0.5-4.5 and FT4 is 0.8 range 0.8-1.5 - so she upped my dose of Synthroid to 50 mcg. I have been on 25 mcg for about 2 weeks with no discernable difference in how I feel, so maybe this dose will be better.

I am happy to say that my Calcitonin was <2, normal being <5 so whew! No medullary worries.

Fingers crossed I will begin feeling relief soon!


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## Andros (Aug 26, 2009)

struggling said:


> I finally got my labs from the Endo (after getting a call from my onc's office that informed me that my TSH had risen and I needed to see an Endo... )
> 
> My TSH is now 6.152 range 0.5-4.5 and FT4 is 0.8 range 0.8-1.5 - so she upped my dose of Synthroid to 50 mcg. I have been on 25 mcg for about 2 weeks with no discernable difference in how I feel, so maybe this dose will be better.
> 
> ...


Wow!! Yeah...............headed into hypoland for sure!! Even with the Synthroid which is startling to say the least!

Thank goodness for the Calcitonin level being where it should be. THAT is very very good news.

It will; no doubt you will be having your med titrated a few times in the coming months until you feel good. I hope that is soon too!


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