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Old 10-14-2012, 08:35 AM   #1
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Going to Mayo...

Three months ago I was diagnosed hypo. A clueless GP wrote a RX for .25 Levothyroxine and sent me on my way. Went home, did research and demanded antibody tests. All came back within range. So I did more research. Everything seemed to point to my pituitary. I made an appointment with Mayo and now it is only 2 weeks away.
My questions are: Who has gone through the Mayo (Rochester) Endocrinology Dept? Has anyone had a pituitary micro or macro adenoma removed there? Are there any suggestions on pit surgeons? Have I made a mistake?
Thanks in advance!

 
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Old 08-16-2013, 04:28 AM   #2
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Re: Going to Mayo...

Hi was just wondering if I ever went there.how do u go about getting an appt.do u have to wait along time.and is t only for surgery.

 
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Old 07-04-2014, 11:38 PM   #3
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Re: Going to Mayo...

Hi,

I realize this is a bit late, but your story sounds alot like mine. I'm considering going to the Mayo Clinic as well. How did everything turn out?

 
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Old 07-05-2014, 02:46 PM   #4
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Re: Going to Mayo...

It may b late but I'm still going thru this..going on three years. Do notttt even bother wasting ur time and money going there.they have no idea what there doing.i was misdiagnosed by them...I have seen 16 doctors already
What exactly r u going thru ,if u don't mind me asking??

 
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Old 07-05-2014, 03:31 PM   #5
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Well, it's a long and complicated story ...

Well, it's a long and complicated story...

4 years ago I woke up one day and panicked. I continued having panic attacks and extreme anxiety for 3 months, to the point where I couldn't leave my house. The first place I went was a psychiatrist. I assumed I was having some kind of breakdown. I was diagnosed with Generalized Anxiety Disorder. She put me on Seroquel because it's a sedative/antipsychotic that you take at night. This would stop my morning panic attacks. Months later, and in a fog, I went to a different psychiatrist. She wanted to switch me to Lamictal, klonapin, and a beta blocker. I began weening off of the Seroquel and onto the Lamictal. Months later I began experiencing EXTREME memory loss. I was literally having to make lists of what I did, with notes for myself for the next day so that I could function. I was not able to work. I was not able to read a book because when I came back I couldn't remember what I had read previously.

Finally, 3 years ago I went in for a physical. Diagnosed with hypothyroidism (TSH 4.5) and a severe vitamin D deficiency. I was put on 25mcg Synthroid, and a high dose of D. D leveled out and TSH dropped and I felt good. I felt good for 3 years. I lost a ton of weight, quit smoking, started eating healthy, started school, was working, things were good. I was taken off of ALL psych meds and told that it was probably just a thyroid issue to begin with. Everything's fine.

Three months ago I develop a weird rash on my thighs. It looks like petechiae which is pictured here: http://people.rit.edu/grhfad/DLP2/DLPdict/onychochauxisSideLogo.htm
I figure I'm shaving weird, or sensitive to some product I'm using, and think nothing of it. At this point I still feel totally normal, so I'm not worried.

Then, 2 months ago I got my period 9 days early. I head to the OB/GYN. Not pregnant, no fibroids. She tells me to have my thyroid checked as it's been a while.

I go back to my original GP (who only checks TSH) for bloodwork. TSH is at 2.8. Health begins to decline FAST. Over the next couple of weeks I begin experiencing extreme fatigue, malaise, all over sick feeling, constant low blood pressure, dizzy spells, weight loss, anxiety, heart palpitations, confusion, lack of concentration, memory issues, insomnia, gasping for air, constipation lasting for days, and more.

I decide to look for a new GP. I take my labs, stating my TSH is 2.8 to a GP in my area with good reviews. She says that that level could not possibly be causing me these issues. She suggests I go back to a psychiatrist because it's probably just in my head/depression/hypochindria. She feels around on my throat for a second and says it feels a little swollen on the left side and I should see an Endo "just in case."
I leave crying.

Endo runs a full thyroid panel and thinks she feels swelling on the right side. Schedules an ultrasound. Ultrasound shows small nodule on right side but nothing to worry about, TSH is at 4.5, in-range antibodies so no Hashis, supposedly. Rash is spreading and filling in.

I get a call from another doctor I'd seen. Severe B6 toxicity. This causes neuropathy, and a ton of symptoms that look like everything from Hashis to MS to Lupus. Sent to neurologist. Negative for MS. Told to "wait and see." I stop taking multivitamin, neuropathy fades, rash fades, b6 level drops.

I begin seeing a new GP.
Symptoms are worsening. I'm now bedridden and unable to work. He thinks that because I've been on such a low dose of Synthroid that I should come off completely and assess. Perhaps it's not my thyroid after all? Options include pituitary, but my cortisol(blood, not saliva), estradiol, FSH, and ACTH are normal, and my TSH has never flat lined. Could it still be pituitary?

If I have Hashimoto's, where are my antibodies?

As of now I have been to an OBGYN, 3 Gps, an endocrinologist, my chiropractor, the ER 3 times, Urgent Care 4 times. I've had dozens of tests done, as well as ordered my own bloodwork for homocysteine, D, thyroid, etc online. I'm waiting on selenium, dhea, and the ANA antibody test to confirm SOME kind of autoimmune issue. I'm scheduled to see a Naturopath and a Dermatologist next week. Derm because the rash has returned. Oh, and I DON'T have insurance until August 1st. I've not acquired thousands in debt in the last 2 months, am unable to work, and have NO answers. I feel like there's nothing else to do but go to Mayo in hopes that someone will be able to explain this so that I can begin treating it.

 
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Old 07-06-2014, 10:46 AM   #6
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Re: Well, it's a long and complicated story ...

With a petechial rash, it is important to check a CBC to include platelets. Do you know if that has been done since your rash started? There is an autoimmune disorder (ITP) idiopathic thrombocytopenic purpura and some others less common that could be causing the rash. The ANA is a good idea to check for lupus. With a thyroid nodule, I would get BOTH anti-thyroid antibodies run (anti-TPO and anti- TG) as some Drs. only check one, and if either is positive, Hashi's is confirmed. Early on, antibodies can be negative and are worth checking periodically. Some people with Hashi's get hypo and hyper episodes mixed until the gland settles into the usual hypo stage and levels out. Hashi's can also cause a + ANA, so if +, does not automatically mean lupus, but other lupus antibodies should be run, like anti-dsDNA and ant-Smith. Mayo might be good if you can't get help locally, and by the time you get seen there, your insurance should be in effect, which would help immensely. Good luck-I'm hoping for the best for you! BTW, I have been to Mayo clinic, not endo dep't, but cardiovascular to find out why I was so short of breath with my lupus. I was very impressed with their Drs, the system, the place, and the speed at which you get things checked out, ruled out or in, etc. I hope you get answers!

Last edited by ladybud; 07-06-2014 at 10:50 AM. Reason: added

 
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Old 07-06-2014, 11:35 AM   #7
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Re: Well, it's a long and complicated story ...

I've had a couple of CBCs done. My platelets are in the normal range, but have increased from 191 to 220 to 286 (range 150-450) between 5/23 and 6/25. What could that mean? My WBC has also gone from 8.9-9.5, although the ranges vary for WBC as they were done at different labs. Platelets have never been low when bloodwork has been done.

My antibodies weren't completely negative, just within the normal ranges. TGa <1.0 (range 0-.9), and TPO of 8 (range 0-34) that dropped to 7 a couple of weeks later. Is ANY antibodies being present a positive sign of Hashi's? My Endo said no, but I've read conflicting opinions online.

A few of my other labs are, ranges in parenthesis:

TSH: 4.2
FT3: 2.9 (2-4.4)
FT4: 1.35 (.82-1.77)
T3 Uptake: 27 (24-39)
Free Thyroxine Index: 2.6 (1.2-4.9)
T4: 9.5 (4.5-12)
T3: 104 (71-180)
TGa: <1.0 (0-.9)
TPO: 7 (0-34)

Cortisol: 17 (4-22) morning, fasting, blood test
FSH: 6.2 (day 2 of cycle)
Prolactin: 12.8 (3-30)
Estradiol: 66 (day 2 of cycle)
ACTH, plasma: 13 (6-50)

Vit. D: 56.2 (30-100)
B12: 781 (211-946)
Folate, Serum: 16.9 (>3.0)

HDL is slightly low, LDL is slightly high
LD is slightly low at 135 with the range being 140-271
Homocysteine: 8.6 (0-15.0)

Thanks for your input. If the naturopath doesn't have any ideas I'll be ordering the other Lupus AB tests. This whole thing is so isolating and confusing.

Last edited by dsmithred; 07-06-2014 at 11:37 AM. Reason: wrong word used

 
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Old 07-06-2014, 06:02 PM   #8
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Re: Well, it's a long and complicated story ...

It seems these labs are pretty normal except you do appear hypothyroid according to TSH and low in range free T3 and T4. Most pituitary adenomas that cause problems are prolactin producing, so I think with a very normal prolactin, pituitary problems are low on list of probabilities. It appears that for now, anti-thyroid antibodies are normal, but it wouldn't hurt to have them repeated in 3-6 months. I would recommend taking pictures of your petechial rash when present so you have objective evidence of it when the need to document is present.

 
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Old 07-07-2014, 07:48 AM   #9
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Re: Going to Mayo...

I have been a patient up there for 25 years. They are the best in the world so why someone would say they do not know what they are doing I do not know. They saved my life and consequently most in my family have been up there and had surgeries and doing well. They removed a parathyroid gland on my mom after being told she was fine for 1 year at home. She had a growth. I had a total thyroidectomy and several other procedures up there. Mine was papillary thyroid carcinoma. You will feel like you have been put through the ringer but they will TOTALLY check you out. They will answer all your questions and they decide things as a TEAM and you are part of that team! Don't forget that! They tell you what they think it the best plan, but you are part of that plan and you get a say. Don't feel like you can't if you don't want too. Ask them to explain why. They will, gladly. Just do the research... THEY ARE THE BEST IN THE WORLD... IN THE TOP TEN of 17 specialties, every year for several years.

 
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Old 07-24-2014, 08:33 PM   #10
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Re: Well, it's a long and complicated story ...

I have a similiar rash. It's Granuloma Annulare. Might want to check this out.

 
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