1.7.25 New Member + Pituitary Tumor

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Lelianas Journey

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Hi all, me sweet angel baby, Leliana (11-12 years) was recently diagnosed at neurology with a pituitary tumor. Neurologist suspects tumor is related to the thyroid, but I was not given the type and told that could not be diagnosed without an aspirate or biopsy.

A bit of hx: Leliana had HYPER thyroid and was treated with radiocat131 in Jan of 2023. By March of 2023, she became HYPO thyroid and has since been on thyroxine.

She has had abdominal swelling of unknown origin (think, swallowed a basketball). We've been chasing a diagnosis for years, bw always normal, Rads clear, ultrasound clear, cushings test (lowdex) negative and finally referred to internal medicine who saw "something behind right eye causing blindness" and diagnosed her with a meningioma in November.

We opted for palliative care since I did not want to perform a craniotomy as extreme measure of buying her only up to 12 months. She was put on prednisolone for 1.5 months. I had a gut feeling that something wasn't right, so last Friday we opted to pursue a neuro consult and mri and were told she does not in fact have a brain tumor, rather something more nefarious, the pituitary tumor + an unrelated seizure disorder. The neuro said her glucose was 438 and recommended tapering off the prednisolone and starting on dm food, then following up with her regular vet this Friday.

If you got this far, thank you. I am so confused by everything I'm reading and not knowing where to go. She's been on Purina pro plan DM since Friday, but because her new seizure meds are making her loopy she doesn't remember how to eat so I've been hand feeding her. I do not think my regular vet will have experience with regulating feline diabetes related to a pituitary tumor, as this tumor from what I've read is less than a 1% chance of occurring.

I don't know what to ask for other than a blood and urine glucose at her appointment to see if she's come down from that awful 438 number. I ordered an Alphatrak 3 which should get here in the next couple of days, and I will be learning how to do that.

Everything I've been reading on this forum and on vet websites and papers say feline diabetes related to a pituitary tumor is a result of acromegly, but how do I know if she has that vs the pituitary tumor relating to the thyroid? I'm so scared if she has insulin resistant diabetes on top of seizures on top of thyroid what her future looks like. I live in a rural area and do not have access to any medical pet sitters who may assist when I travel and ive been taking care of my dying mother in a completely different country. (Feeling sorry for myself, absolute banger year watching both my closest family members get diagnosed with terrible illnesses and rot away :') ...) Not to mention I work at a non profit and have spent my entire savings and opened up care credit just to get this far.

We were referred to oncology for the next steps but the neuro said its imperative to follow up with my dvm about the diabetes so we have an appointment friday, but like i said, i doubt my dvm has experience with this and i don't know the correct things to ask for. He also said radiation would be curative for the tumor but everything in reading says it just shrinks it. We would be doing sterotactic radiation. Will the oncologist know more about pituitary tumor and diabetes? Our neuro said it's possible the diabetes will reverse with radiation.

I don't know what to ask. Has anyone experience with pituitary tumors that aren't acro?? Should I look into acro testing? I don't know if she's eating enough or too much at this point.. there's little to no directions on the food other than the dm dry which she is barely eating 1/8th a cup only if I hand feed and she's 11 lbs.

I've been bawling and throwing up for days now and can't even straighten my thoughts to make sure that i ask the right questions and am terrified Im doing too much, or too little. Help.
 
Hello and welcome to the forum!
I'm so sorry that you're going through all that, with Leliana and your family members…
Hang in there, you're not alone. You have to take care of yourself first, to breathe in, breathe out, on repeat mode. I know it's difficult when panicky feelings set in, please try to do it in order to be able and help the others, because if you're going to get sick as well, it won't do any good…

About the thyroid issue, I don't think that it could have caused a tumor on the pituitary gland, of all the readings I've done, I've never come across such a thing. Once you've done the radioiodine, it's pretty straighforward with testing for hypothyroidism and treating it with synthetic T4.

About the Alphatrak and your financial issues, it would make sense to cancel the order and invest instead in a human glucometer. It's much cheaper, and most of us here use them.

And about your questions regarding acro, pituitary tumor and treatment, I'll leave it to more experienced members here. I just wanted to send you some encouraging words.

Hang in there, really!
 
My girl also had a pituitary tumour, also called hypersomatotropism, aka acromegaly. Another kind of tumour in the pituitary causes Cushings, which sounds like has been tested. The acromegaly is more common, and about one in four diabetics has acromegaly. One of the typical physical signs of acromegaly (and Cushings) is a pot belly, which sounds like Leliana has. The test for acromegaly is called the IGF-1 test. It is a blood test. In North America, the blood goes to Michigan State University. In the UK and parts of Europe it goes to the Royal Vet Clinic, though I've heard other places are now performing the test too. Idexx will also to it, but they are just a "middle man" and charge for their services to ship it to those places.

There are treatments besides surgery. My girl had radiation therapy, but that was the only treatment available then. There is now a daily medication called cabergoline that can help. Most people get it compounded as a liquid. If you do get a diagnosis, post here and we can help. Your mileage will vary on whether an oncologist can help. My vet thought Neko was her first acrocat, until we learned together and she realized she had a second at her clinic. I never went to a specialist until Neko got more complicated (heart + small cell lymphoma).

There is nothing magic about Purina DM, the ingredients aren't great either. If you tell us which country you are in, we can suggest commercially available low carb food that will be good for the diabetes.
 
As Wendy said, the IGF-1 test can diagnose acromegaly. I’d get that done as soon as possible since it’s a blood test and non invasive. Knowing the answer can help you hone in on further treatment options. It’s also a relief to have an actual diagnosis.

Steroids can trigger diabetes, so it’s possible that weaning off the steroids might help the blood glucose (BG) numbers improve. Most cats need at least a short course of insulin, even once steroids are removed. Lantus is a great option for cats.

There are plenty of people here who have dealt with acromegaly, steroid-induced diabetes, and so on. Welcome to the board. You’re not alone in this journey and we’ll be glad to help you however we can.
 
Daphne and Aida said:
Hello and welcome to the forum!
I'm so sorry that you're going through all that, with Leliana and your family members…
Hang in there, you're not alone. You have to take care of yourself first, to breathe in, breathe out, on repeat mode. I know it's difficult when panicky feelings set in, please try to do it in order to be able and help the others, because if you're going to get sick as well, it won't do any good…

About the thyroid issue, I don't think that it could have caused a tumor on the pituitary gland, of all the readings I've done, I've never come across such a thing. Once you've done the radioiodine, it's pretty straighforward with testing for hypothyroidism and treating it with synthetic T4.

About the Alphatrak and your financial issues, it would make sense to cancel the order and invest instead in a human glucometer. It's much cheaper, and most of us here use them.

And about your questions regarding acro, pituitary tumor and treatment, I'll leave it to more experienced members here. I just wanted to send you some encouraging words.

Hang in there, really!
Click to expand...

Thank you so much for your thoughtful response and for your encouragement. I am feeling much better after my menty b and now it's time to get everything moving again. I may eventually do away with the Alphatrak 3 based on pricing, but so far I have been using it since it was delivered and the only thing available to me at this time. I do see more opt for the human glucose meter, I guess when I ordered I thought it was species specific and wouldn't work.
 
Wendy&Neko said:
My girl also had a pituitary tumour, also called hypersomatotropism, aka acromegaly. Another kind of tumour in the pituitary causes Cushings, which sounds like has been tested. The acromegaly is more common, and about one in four diabetics has acromegaly. One of the typical physical signs of acromegaly (and Cushings) is a pot belly, which sounds like Leliana has. The test for acromegaly is called the IGF-1 test. It is a blood test. In North America, the blood goes to Michigan State University. In the UK and parts of Europe it goes to the Royal Vet Clinic, though I've heard other places are now performing the test too. Idexx will also to it, but they are just a "middle man" and charge for their services to ship it to those places.

There are treatments besides surgery. My girl had radiation therapy, but that was the only treatment available then. There is now a daily medication called cabergoline that can help. Most people get it compounded as a liquid. If you do get a diagnosis, post here and we can help. Your mileage will vary on whether an oncologist can help. My vet thought Neko was her first acrocat, until we learned together and she realized she had a second at her clinic. I never went to a specialist until Neko got more complicated (heart + small cell lymphoma).

There is nothing magic about Purina DM, the ingredients aren't great either. If you tell us which country you are in, we can suggest commercially available low carb food that will be good for the diabetes.
Click to expand...

Thank you for your response - while I am not happy Neko & you have been through this, I am grateful for you sharing. Is the cabergoline just for the diabetes in relation to insuline resistant diabetes as a result of the acro? Or for both the tumor and the diabetes? Leliana has an appointment with her regular DVM tomorrow and because of your message I have requested the IGF-1 test on top of the blood and urine glucose the Neuro wants checked. Cushings was indeed negative, and I am hoping it was not a false negative because it is an important piece of the puzzle.

I am more optimistic now about controlling her diabetes, since receiving the Alphatrak, she has measured at 199, 189, 165 and 145. MUCH better numbers than 438 at her MRI. The only switch was her food, which she is still 'meh' about, but I have not gone down the food rabbit hole - and the weaning off of the prednisolone. High hopes that the pred was what made her sugars so high. I am currently in the USA with her, and she used to eat Purina Pro Plan dry (between Prime + or sensitive stomach), and at night we would switch between Purina Pro Plan wet (sensitive stomach), BFF/Weruva, or Soulistic. She used to also get Churus as a treat, which I am REALLY hoping are still ok since I have been able to sneak her pills in those very easily.

Neuro called and said that her loopiness on the seizure meds should mellow out in 2 weeks.

I will update with her results tomorrow and the IGF-1 test when it comes in. Next step after that will be booking with oncology for a consult to talk about the tumor and next steps. If I can go in with the most information possible, I think that will help.
 
JL and Chip said:
As Wendy said, the IGF-1 test can diagnose acromegaly. I’d get that done as soon as possible since it’s a blood test and non invasive. Knowing the answer can help you hone in on further treatment options. It’s also a relief to have an actual diagnosis.

Steroids can trigger diabetes, so it’s possible that weaning off the steroids might help the blood glucose (BG) numbers improve. Most cats need at least a short course of insulin, even once steroids are removed. Lantus is a great option for cats.

There are plenty of people here who have dealt with acromegaly, steroid-induced diabetes, and so on. Welcome to the board. You’re not alone in this journey and we’ll be glad to help you however we can.
Click to expand...

Thank you so much for your thoughtful response and insight. Leliana will be getting the blood + urine glucose at her DVM tomorrow and I have also asked for the IGF-1 test based on the information received here. Even though they quoted me at $400 for just the IGF-1 test, I think it will help give us important information on how to proceed. Especially if acro is insulin resistant. I am not very good at doing the blood from the ear, but hopefully with time I will get better. So far, she has measured at 199, 189, 165 and 145. MUCH better numbers than 438 at her MRI. Only change so far has been switching her food and weaning off prednisolone.
 
Diane Tyler's Mom GA said:
Here is the link for the meter and test strips so you don't have to search for them
Relion Premier Classic Meter at Walmart for 9 dollars
https://www.walmart.com/ip/ReliOn-Premier-CLASSIC-Blood-Glucose-Monitoring-System/552134103

The tests strips are 17.88 for 100
https://www.walmart.com/ip/ReliOn-Premier-Blood-Glucose-Test-Strips-100-Count/575088197
At least if you need more test strips you can run into Walmart and pick them up or if you're running low you can just order them from Walmart
Click to expand...

Thank you so much! I will likely return the Alphatrak if I can and get this.
 
The cabergoline is only for acromegaly or the pituitary tumour - it also works on acros who aren't diabetic yet too. Diabetes is a later stage symptom of acromegaly. Cabergoline can cause the amount of growth hormone output to be reduced, which can in turn lessen the diabetes. We've had a handful of cats go off of insulin as a result of taking cabergoline, though most just go to lower doses.

How long has Leliana been on insulin? Studies have shown that if you test IGF-1 within 73 days of starting insulin, you can get up to 1/3 false negatives. If she's not on insulin yet, it might be OK to test now. The false negatives were due to a reaction to the insulin.
 
Wendy&Neko said:
The cabergoline is only for acromegaly or the pituitary tumour - it also works on acros who aren't diabetic yet too. Diabetes is a later stage symptom of acromegaly. Cabergoline can cause the amount of growth hormone output to be reduced, which can in turn lessen the diabetes. We've had a handful of cats go off of insulin as a result of taking cabergoline, though most just go to lower doses.

How long has Leliana been on insulin? Studies have shown that if you test IGF-1 within 73 days of starting insulin, you can get up to 1/3 false negatives. If she's not on insulin yet, it might be OK to test now. The false negatives were due to a reaction to the insulin.
Click to expand...

She is not on insulin yet. We went from having her in palliative care/prednisolone for a meningioma (misdiagnosed by internal medicine end of Nov 2024), to last Friday (Jan 3) getting an MRI/neuro consult because I had a gut feeling the diagnosis was off. Her confirmed diagnosis is pituitary tumor, unrelated seizure disorder, and her glucose was 438, prompting my neurologist to wean pred immediately and follow up with DVM for blood + urine glucose. I was unaware any diabetes related things were happening inside of her - before last Friday we were under the impression she had little time left, so ofc I was giving her all sorts of treats that weren't allowed in our house previous (which I am sure caused havoc on her poor system now).

Now our options for the pituitary tumor are palliative (with much worse body system failings in her future), or, f/u with oncology for SRT. We are currently trying to sell and make as much money as possible to follow the route of SRT, but in the meantime we are trying to get the glucose under control. I am trying to get as much info going into oncology as I can - we already know she is Cushings negative, so acro test is next.
 
Sounds like the acro test would be fine at this time. One of the members active when Neko had her SRT funded it with Care Credit, if that's an option for you. Good luck, you've been through a lot!
 
Wendy&Neko said:
Sounds like the acro test would be fine at this time. One of the members active when Neko had her SRT funded it with Care Credit, if that's an option for you. Good luck, you've been through a lot!
Click to expand...

That is good to hear - I thought I might have been preemptively doing IGF-1 but sounds like this is the right time Unfortunately, I have already maxed out Care Credit with multiple ER trips for her, Internal medicine, and neurology/MRI, plus blown through my savings just to get this far. Besides testing to diagnose the abdominal swelling, she has a random seizure disorder on top of all the endocrine stuff that was causing symptoms no one could figure out until Neuro! Too bad I didn't pass GO! and head straight there in June when her first seizure episode began. Her episodes were nothing like I've ever seen seizures presented (grand mal, clonic, focal) so I didn't even peg them as such after her DVM, the ER vet, the board certified internist, and the vet at my work all said they also did not think seizure. The neurologist was like, "lol - classsssic" after he saw the video. Sheesh! Thank goodness for Care Credit getting me up to this point! I am going to research possible grants and get a quote from the oncologist at the consultation. I will follow back up here - you all have been so helpful!
 
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