I don't have a brain tumor! Yay!!! Thank you, God. I am so relieved. :)
Since I hadn't heard anything from PPVI, I sent an e-mail to Dr. K's nurses today asking if they had received the results from my MRI last Monday. I also mentioned that I was "just curious if I have brain tumor." I normally hate to bother them between cycle reviews, but I figured this was reasonable. :) I know they are super busy with lots of patients, but I didn't want to slip through the cracks and end up waiting until my next cycle review for the results and possibly starting a new medicine.
They either had the results ready or they were planning to call me anyway because just over an hour after I sent the e-mail I got a call from a PPVI nurse. She said there was no evidence of a microadenoma (tumor), but they did find a "diffusely enlarged pituitary." Dr. K didn't know what the significance of that was, so she contacted a neurosurgeon colleague. The neurosurgeon said I should go see an endocrinologist in case the pituitary is causing other hormone problems.
Dr. K is starting me on the medication bromocriptine to try to lower my prolactin. She'll recheck the level in a month to see how the medicine is working. I'm hoping the side effects aren't too bad. It's not known as the nicest medicine to be taking. Common side effects are nausea, vomiting, dizziness, and headaches.
I called to make an appointment with an endocrinologist in the same building where I had the MRI. I figured it would be easier because the doctor would already have access to the results. The receptionist said Dr. K needs to contact them directly asking for a consult for me. I protested that the MRI was the reason for the consult, and they had that already. Didn't work. :( Can't blame a girl for trying... So once the nurses fax over a request along with my prolactin lab value, I can make an appointment. I've never been to an endocrinologist so I'm curious to see how this appointment goes. I'm not looking forward to explaining that I'm taking T3 (thyroid) and hydrocortisone (steriod).
And DH's response to the above news? "So you have a malfunctioning brain, huh?" :)
And then he said, "Can we get a picture from your MRI? I want to put it up as my background on the computer."
I, of course, consulted Dr. Google about the diffusely enlarged pituitary. Hopefully it's nothing to worry about, but I did find some case reports where the patients were treated surgically. I am not a doctor. Let me repeat: I am not a doctor. No more internet searching for me until after meeting with the endocrinologist. :)
I want to say thank you again for all your prayers! They are much appreciated. :)
Yay praise God!
ReplyDeleteYay on no brain tumor. And you keep making progress and moving forward. That is good. Praying this is your missing link.
ReplyDeleteSo glad that you don't have a tumor! But belch on the side effects - I hope you don't end up suffering from all the possible side effects. And how annoying about needing Dr. K's office to refer you to the endocrinologist. I hope you don't have to jump through any more hoops for insurance purposes, either.
ReplyDeleteSo glad to hear no brain tumor!!!!! Your DH cracks me up :).
ReplyDeleteOh, and Dr. Google is just bad news - it's all extremes with him, you are either just fine and need to get over it or you died 5 minutes ago. So unhelpful!
Prayers that you are able to see the endocrinologist sooner rather than later and that the side effects of the new med are tolerable!
What great news!!!! Praying that you get in to see the endocrinologist soon!!!
ReplyDeleteAmazing news! I've been following this thread and praying for success...at least you're on the path to correcting the problem instead of waiting and wondering, which is the absolute worst! And your husband sounds like a pretty great guy! Important to laugh even when we don't feel like it :)
ReplyDeleteGood news about the scan results...and yes...don't do Dr. Goo.gle. I once goo.gled a result my dh had and I called my mom in tears. It wasn't what I feared (Thank God) but it was then I realized no more looking into symptoms, etc.
ReplyDeleteHave you ever had your thyroid antibodies tested?
ReplyDeleteno
DeleteTpo
ReplyDeleteTpag
Do you have any thyroid labs?
ReplyDeleteHere's the latest from February. Normal ranges from the lab are in parentheses.
Deletetotal T4: 4.7 (4.5 - 12.5)
free T4: 0.71 (0.8 - 1.9)
TSH: <0.004 (0.4 - 4.0)
total T3: 186 (70 - 170)
reverse T3: 209 (90 - 350)
T3 to reverse T3 ratio: 8.9 (>10)
Any chance you have a free T3? Are you still symptomatic? Cold, hair falling out, weight gain-can't loose...
ReplyDeleteBy chance do you have a tsh before you were ever on any meds? That will give more of an idea of what your pituitary was doing before meds....
The tsh will always be low on education because the pituitary recognizes any thyroid hormones as getting what they need-whether it is what you actually need.
Has anyone mentioned to you being hypo-pituitary?
No free T3 measured. The only one I forgot to include was T3 uptake of 44.2 (from 11/2013)--normal range is 28-38. No, I'm not symptomatic. I feel good. (If I have any problem with weight, it would be more that it's difficult to gain weight.) TSH was 1.19 in 2011 when I wasn't on any thyroid meds. No one has ever mentioned that I was hypo-pituitary.
DeleteWhy were you placed on T3? Was a free t3 level taken the ?
DeleteT3 was started because I had low temperatures and my ratio of T3 to reverse T3 was too low and I could check enough boxes on the list hypothyroid symptoms. I found a free T3: 3.2 (2.3 - 4.2). That's from 2011 when I wasn't on any thyroid meds.
DeleteEducation-thyroid medication
ReplyDeleteTry and get abtibodies ran-tpo&tgab
ReplyDeleteAs well as a free t3...
Before those labs do not take thyroid (t3) 24hrs before test....it will give you a true reading. You can take HC but not thyroid. So skip am meds then take after the test.
Thanks for all your advice. I'll try to get them done.
DeleteHas your free testosterone & total testosterone been checked?
ReplyDeleteGo to stop the thyroid madness and search hypo-pituitary....maybe it will take you somewhere.
In dealing with Endo-if you are feeling great-leave it at your current thyroid protocol is working for you. If you are not feeling great-feel free to email me. ;)
From 2010:
Deletefree testosterone: 0.5 (0 - 2.2)
total testosterone: 54 (6 - 82)
I looked up hypopituitary on the sttm website. I have always had low blood pressure and more recently decreased appetite. I don't have any of the rest of the symptoms. My prolactin is high though and it says hypopituitary would have low prolactin.
Holy crap those T levels blow!!!
DeleteOk! You have great labs to piece all this together....
So your free t3 was mid to bottom range with being symptomatic.
Your TSH-which is thyroid stimulating hormone. Stimulating keyword here!! It's a pituitary hormone not a thyroid hormone. What happens us the pituitary knocks on the thyroid door so to speak to make more thyroid....
But in your case, with a TSH OF 1.12 your pituitary wasn't invoking at all in reference to your free levels and you being symptomatic.
Pituitary out to lunch....by chance did you ever have a head injury in your past---concussion of any sort? Bad car accident? Fall off the bed? Mild concussion?
Sttm claims you can only be hypo-pit by 1. Head injury 2. Tumor in the pit gland
That isn't always the case though....you can also have centralized hypo--meaning there is a lag so to speak or low functioning pituitary gland-meaning that the hypo is centralized in the brain.
It does say 2-3 pit hormones can suggest hypo-pit....with situations like this-I'm not sure there is a definitive black and white definition since we are dealing with hellmones. HC-thyroid-low T
DeleteIt would be interesting to see what your dhea-s is doing. Thyroid medication pulls down HC-dhea counter acts all the side effects of hc-dhea pulls down HC--it's all connected :(
It says to seem an osteopath...my girlfriend is seeing a dr that specializes in autonomic nervous system imbalance issues...throwing out as much as I can to keep you out if an endocrinologist office! Lol you can read more about that on sttm. Lol
I am hypo-pit as well....basically all it means is that YOU are your hormones and total replacement is needed.
ReplyDeleteIf you want my suggestion- :) finding a doctor that specializes in hypo-pituitary issues would be a good place to start. Would an endocrinologist get you there? Not likely. A hormone replacement doctor would be helpful.
I'd also do a little digging on switching from T3 only and maybe checking out replacing it with natural dessicated thyroid. A pregnancy needs a much higher t4 then you have available.
Do you feel light headed or dizzy when standing? A feeling of your brain not connected to your head?
Was a free T4 taken in 2011? Was that the sane lab as your tsh?
Here's the full panel done in 2011 (on no thyroid meds):
Deletefree T4: 1.3 (0.8 - 1.9)
TSH: 1.19 (0.4 - 4.0)
free T3: 3.2 (2.3 - 4.2)
total T3: 114 (70 - 170)
reverse T3: 390 (90 - 350)
T3 to reverse T3 ratio: 2.9 (>10)
Yes, I do sometimes feel dizzy when I stand up too quickly. Yes, I've had a couple hard bumps on the head. I hit my head on the playground playing red rover in grade school (I couldn't break through the arms of the other team so I fell backward on to the pavement). I also played soccer, so lots of balls to the head.
With that free t3 where it is in the range your tsh should be higher...it should show the pituitary at least trying to tell the thyroid to make more hormones-but it's not.
DeleteObviously you are on HC for adrenal fatigue....testosterone you basically have none-you poor thing-I'm so sorry! Testosterone is an anazing hormone.
Low blood pressure-dizzy on top of all of this information suggests an aldosterone problem....so basically you are an endocrine mess. Did you have endo too?
You can take Celtic sea salt. Aldosterone is part of the adrenals. It's responsibility is to balance out salt to make the blood like seawater. Does that make sense? It's how I understand it. The medication is fludrocortisone--steroid salt. Some can get by on just taking a good mineral salt-Celtic is the best. Start with 1/4t on a full stomach. I used to put it in capsules. I think sttm covers all of this....
Sometimes the smallest accidents can jar the pituitary enough to mess things up....
It was after my 1998 car accident that my issues started to spiral downwards.
But I'm seeing that in my own daughter, it's likely she was born with centralized hypo.
Keep upping the salt til symptoms disappear....
DeleteAn endocrine mess--yeah, that sounds about right. Yes, I had endo.
DeleteOh, whew, no brain tumor! What a relief. praying for effective, side-effect-free treatments. And no, you're not a doctor but even *more* importantly, Google is not a doctor. :)
ReplyDeleteGreat news!! Continued prayers as you continue with the endocrinologist!
ReplyDeleteYeah for no brain tumor! And with Dr. Sew on the case, you should be on your way to figuring out the crazy thyroid! ;)
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