Well, I guess most of either have, or will, experience the loss of a great practitioner. And while mine just left the practice (feels premature, but I imagine it was a life choice kind of thing with family, etc.), I still feel the loss of such a great person that offered diabetics (and my thyriod, etc.) such a fount of knowledge!
I hope and wish her well.
But now I have to start the search again for another Endo.
My issue is compounded due to the fact that I use the VA for my insurance, prescriptions, etc. And use the Community Care offer they have to go outside their network to find a private Endo to work with me.
I struggle every 6 months to a year for renewal of Community Care authorizations to continue seeing someone outside the VA network.
And up until now, I happily did this so that I could see this specific Endo.
I know this is a woe unto me, kind of thread. But I know that others have experienced the same situation, often many times over.
I was truly lucky to have had access to this Endo for the last 5 years. And she truly did make a profound difference in my quality of life as a T1 diabetic.
I am not tempted to try and go back into the VA network for an Endo. I would do this with hesitance. I doubt I can get a VA endo to prescribe me insulin that is not covered by them (Fiasp/Lyumjev, etc. which I paid for out of pocket.) And it seems that most donāt treat a low thyroid in a manner that helps (I saw them before and they flat out said I didnāt have a problem cause I was within their tolerence! When you could CLEARLY see by my numbers that my body said otherwise!)
I understand all of this. I have always thought the 2 hardest things about diabetes were dealing with insurance and dealing with doctors.
What options do you have outside of the VA? Is out of pocket insulin reasonable if you get it through either the 3 vials for $99 deal with Novo, or from a Canadian pharmacy? Like do you use an amount that is easy to do that way?
Thyroid is tough. I know that test results can vary a lot. Are you taking any thyroid meds now? I think testing in the morning and after fasting will be better for your in terms of helping you get the diagnosis. Not sure it helps a lot though.
It seems like going outside the VA gives you a better chance, if you have that as an option.
IF I can get a VA Dr to write a prescription that is for an insulin that is not on their formulary, and send to Walgreens. I can use the Novo discount for Fiasp. 3 vials for $99 works fine for my needs.
I am currently on thyroid meds, two separate ones, but we havenāt fine tuned it yet. So it was a prescribe, wait, test, tweak. Kind of thing that was going on with my last Endo. Not sure if the VA will go any further with that, or just say that because the numbers are within their tolerance, I am stuck. Just not really sure how they would approach it. Seems that more private Drs take a look at the patient themselves, and not JUST the numbers. I know that I need to tweak my thyroid scripts by the way I feel.
I guess I could try a VA dr.
I have to drive further(additional 40 to 70 miles each way depending on which location), and the VA is much worse on timing to actually GET an appointment. But at least I wouldnāt have to fight the Community Care portion of all this.
I think this one is pretty easy! Just stop taking the pills a week or so before your next test, and donāt tell them you āforgotā.
Like if they think you are on 60mg and your TSH is still high (meaning your thyroid is low), they then go up to 90mg. What they donāt know is that you were actually on 0mg for a few weeks leading up to the test.
Yeah, that would work, to a point.
Thing is, I need to fine tune it now. I am close to what I need, but I think it needs another little bump up in strength.
If I take that route, I will feel deed to the world for a week or so, and then who knows what they would prescribe for a dosage.
I honestly think that one of two things is happening.
A: My thyroid is slowly failing and I need to adjust meds.
B: My thyroid is lazy, and when I up the dose, it reacts by making even less. Even though I can see my TSH is demanding it to make moreā¦
Either way, I see this as something that will take monitoring for a while by someone who looks at the entire picture, not just that the numbers are within limits.
So I feel you @Hammer, we have switched endoās 3 times in 5 years and it is painful. For us, my son has just accepted that the endoās are there for scripts and nothing else, and that works well for us, but with the Thyroid thrown into the mix that complicates things. It seems like these autoimmune diseases offer nothing but a multi-year test of your patience from every angle (disease symptoms, medical management, prescription refills, insurance headaches, etc). We are currently waiting through the my insurance switched so we have to use Byram and Byram is saying we donāt have a prescription stupid game.
3 times in 5 years sounds painful, to say the least.
I knew I would eventually have to go through this process, but I didnāt see this Endo stopping it this soon. I still would like to thank her profusely what how she has helped me.
Thing is, she LISTENED! and asked questions, and cared, and, and, and.
Meh, well. That is over. I just have to suck it up and move on. Just like everything else in life, it is constantly fluctuating.
@Hammer Sorry to hear of your struggles. I get your frustration and the need to vent to others who understand the woes of the D/ autoimmune world.
Oddly enough (maybe not so odd), I think it was easier getting my thyroid meds adjusted with my Primary doc. My thyroid diagnosis was 25+ years before my T1 diagnosis, so did not go to Endo until I was 55.
When I moved from IL to TX, the thing that caused me the most anxiety was finding a great Endo. I started Looping shortly after moving and was grateful to get several Endo recommendations from the Looped Facebook group. I like the one Iām with now so it worked out well (but turns out Thyroid issues are not her strength).
@Hammer, another way would be to cut the pills in half for 2 weeks before your test. In theory that would give you a slight increase in your current prescription, and not make you feel quite as bad as taking nothing.
Thyroid is a moving target. Things you eat or drink can inhibit absorption of thyroid meds too. For example, milk inhibits levothyroxine. Nobody told me that. I took my thyroid pill every morning, and then guess what?! Iād have milk in my cereal. Nobody ever told me!
Do you avoid eating or drinking after taking your meds?
Yeah, timing and what you eat and/or drink can definitely effect the potency of the dosage.
Both Drās told me the same thing, it doesnāt matter what you do, just always do it the same. The are happy to adjust as needed.
On that note, I take my pills first thing upon waking up. I start āsippingā coffee 30 to 45 minutes later. And food comes about an hour after dose.
After a horrendous year with another practice and all their endless overcharges that my insurance company had listed as āin-networkā, I eventually went back to the endo I trusted. I decided Iād rather pay out of pocket than get bad advice. Totally worth it, especially since I didnāt need to see the doctor too often and she would answer questions by phone and email. That last practice didnāt ever check for my thyroid, so now I take meds for that and get it checked out regularly.
Insulin is insulin. So long as I adhered to the insurance guidelines, no Novolog but okay with Humalog for instance, the insurance covered everything regardless of which endo I used.
I know youāre in a slightly different situation, but Iād suggest you ask around and get good advice rather than stay held to a situation that may not be the healthiest for you. Try the new practice that your endo recommended as a start.
BTW, I know so little about maintaining good health for my thyroid. I think they are mild, but not sure. I take my medications and get regular blood tests. Aside from those blood tests and my doctor checking my neck each visit, I also get my thyroid monitored by a radiologist and a scanner.
Good news!!
I found my Endo!
She ended up going with a small practice (it is only the other Dr and her.)
She is further away from me, but it is easy to do video appointments now.
I had similar experience with my vet, when she left abruptly, and staff was not allowed to give info. But searching internet, facebook, finally found reference to new location!!!
Definitely a great feeling to get reconnected to trusted vet!!
