My never ending thyroid saga

[DebE13]

I got lab results today.

TSH. 3.2
FT4 1.3
FT3. 2.4

Better than Octobers draw but I am feeling a visit to the sanitarium is in order. I am so very uncomfortable and my lovely mood is causing hardships in more than one relationship. I'm supposed to be getting better, after all, I don't have cancer anymore, right? I thought the whole GI system stunk...the whole endo scene is horrific. After the three day trauma I experienced last week trying to get my labs done eArly, I still can't get a return call.

I called during my lunch that I wanted to discuss lab results and again mentioned Cytomel. Nothing. They really never got in touch with me from last Wednesdays call. I thought they may be a bit more prompt today. Generally if I called at lunch, I wouldn't get so testy if the call back was the next day but COME ON!!

Thanks Tex, those little emoticons sure do feel good to insert

I found a female endo at a different location who did her studies in China. I called her office today, and of course, I need a referral. Now I'm debating if I have to make an appointment with my PCP or if I can just call. The receptionist said she's booking into the end of December right now Maybe I could get an expedited visit if my PCP calls. I'd drop everything and run if they said now. I suppose I should call back and ask if she is open to T3 meds if warranted first. I'm at a loss with the mismanagement of my care. Now I'm also starting to wonder if I'm just being to critical of everyone since I'm not really able to be around other people right now without having some sort of issue. It's very sad, because those closest to me are included.

I'm still trying to figure out what my ideal numbers are since being without a thyroid and the cancer suppression makes me fall in a different category. Although I'm not 100% sure of that yet, either. I was told with the micro carcinomas I am free of cancer- I have to wait until next Mondays appointment to ask.

I'm about ready to hold up a pharmacy at this point to get something! (Just kidding)
Frustrated.

[MBombardier]

Deb, I'd really like to encourage you to join the NDT yahoo group. You can express your intense frustration there to people who know exactly how you feel (lots of them) and mods who have done this themselves for years and years, and you can get some really good advice. Also, there is lots and lots of good information in the files, including a good docs list. If there is no one on there close to you, you can ask if anyone knows of one.

[tex]

Deb,

I'd like to see your TSH between 0.5 and 1.0, but that's beside the point if your doc doesn't agree. I agree with Marliss — you need to see what the experts say.

Tex

[DebE13]

Thanks Marliss, I also belong to the ThyCa cancer survivors group and have been getting helpful information there too. I'll have to look at the NDT groups too. I'm a bit frustrated with that right now because I want to try it but so far, all the doctors I've contacted won't even consider it. It's hard to hear the success stories and encouragement to try it when I come up to a brick wall. That's why I'm dead set on trying Cytomel. I may be in for a struggle with that too. Sadly enough.

Thanks Tex, that's what I've been told too for the TSH. I've not heard any explanations yet from my endo about my follow up care since I only saw him once so far after the surgery and that was to get my meds (what an ordeal) and to be told I'm cancer free so life should be a walk in the park from now on. I shouldn't sound so angry about that because I could have faced so much more. I am very lucky but considering my quality of life right now is at about zero, it'd be nice for them to just agree that it's a rough road.

It was suggested to drop from my 125mcg to 100mcg of levothyroxine and add 25 of Cytomel, gradually working up to the full 25 (if needed). The docs said previously that it isn't for long term use but there's quite a few thyroid patients who disagree. If that doesn't help then trying tirosint or another T4 brand would be in order.

I keep reminding myself that I went through instructing the GI doc what my health care plan would be so I should have this down already and not get so upset at leading the doctors.

Thanks for the encouragement. I always like to come back "home" with my plans because here is such a comforting place to be.

[DebE13]

Just got off the phone with my endos nurse. Doctor reviewed my new labs from Friday and feels I can wait until Monday to discuss my plan

I told her that was not acceptable. Maybe I should have phrased it as "Your telling me I need to find a new endo." Which I am looking into right now. The referral process, sigh.

I explained I cannot wait a week and I've already waited many weeks feeling very bad. I explained for the hundreth time what I am feeling, that I believe I am not converting T4 to T3 properly and exactly what I mentioned above for meds. I said I wanted to try that for the week and have a discussion on Monday to see if that helps. Of course, he is working at a different location today so she will contact him and call back today. Now I don't even trust that.

In the meantime, I plan to call the other lady endo's office I spoke with yesterday to see if she is open to T3 meds. If yes, then I will go after my PCP to get a referral and hopefully an expedited appointment. They sure do have you over a barrel.

[tex]

In the meantime, I plan to call the other lady endo's office I spoke with yesterday to see if she is open to T3 meds. If yes, then I will go after my PCP to get a referral and hopefully an expedited appointment.

That sounds like a plan.

They sure do have you over a barrel.

That's why so many of them end up in the situation where they feel that they can get away with ignoring patient's needs. When someone is paid big bucks, whether they actually provide any benefits for a client or not, it's easy to become lax with their quality of service. No other profession allows for payment without performance.

Which raises the rhetorical question, "When a doctor knows that he or she cannot help a patient, but does not disclose that fact to the patient, and instead convinces the patient to continue to come back for treatments, is that using a medical license as a license to steal?"

Tex

[DebE13]

Crap, I just made the call and was assured by her assistant she has lots of experience with cancer patients and those without thyroids. I asked about the T3 meds and she said, oh sure like synthroid and levothyroxine (gulp). I gave examples and included NDT. Sigh. How can you work in endocrinology and not know the difference? She said she would have to ask since this endo just started two weeks ago.

Pull out the violin, I'm about ready to cry. This is coming from the much larger facility that has doctors from all around the world. Am I stuck in some time warp? Guess I'll be waiting on pins and needles for two potentially disappointing call backs.

Since they all work in teams do I have to call each individual doctor and ask their nurse to find out what their philosophy is?

[DebE13]

This letter is copied from a post on Light of Life Thyroid on Facebook to help explain why we do not always feel well with an absent or damaged thyroid:

An open letter to all those who have someone in their life who is suffering - maybe this will help you to understand just what is going on inside, which in turn helps us to deal with just what is going on.......

Hi. My name is Thyroid Disease. I'm an invisible auto-immune disease that attacks your thyroid gland.
I am now velcroed to you for life. I am so sneaky - I don't always show up in your blood work. Others around you can't see or hear me, but YOUR body feels me.
I can attach you anywhere and any way I please.
I can cause severe pain or, if I 'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog, confusion and lack of concentration.
I can make you want to sleep 24/7, but I will also cause you to have insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me.
Crying for no reason? Angry for no reason? That's probably me too.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight - I don't discriminate.
Some of my other auto-immune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons;
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.)
You may have a family history of me. Whatever the cause, I am here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try.
You will have to go to many, many doctors until you find one who can and will help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and anti-depressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage or two or more?
That's probably me too.
Shortness of breath or 'air hunger?' Yep, probably me.
Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ? Hives?
Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded and MOST OF ALL, not taken seriously when you try to explain the endless numbers of doctors you've seen, just how debilitation I am and how ill and exhausted you really feel. In all probability you will get a referral from the 'understanding' (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitation I can be. Some of them will say things like 'Oh, you are just having a bad day' or 'Well, remember, you can't do the things you used to do 20 YEARS ago', not hearing that you said 20 DAYS ago.
They'll also say things like, 'if you just get up and move, get outside and do things, you'll feel better.'
They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a 'normal' person, and can't remember what you were going to say next. You'll be told things like, 'Oh my grandmother had that, and she's fine on her medication' when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of thyroid hormone medication for YOU.
Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people who walk with me. They are really the only ones who can truly understand.

[DebE13]

Geesh, I have a black cloud following me. Good help is hard to find.... I had two simple questions:
1.will the endo consider using T3 meds if appropriate ? 2. Will the endo use NDT if appropriate? I had to be put on hold each time for an answer, assuming the doc was sitting next to the assistant. Talk about going on circles and I never did get a clear enough answer. I would have to make an appointment and get a referral.

After that, the nurse called. Said my endo is running behind with patients and would like to talk with me personally- tomorrow. I said fine, what's my alternative? Now is it just a waiting game they're playing? Postponing contact until closer to my appointment on Monday which is what they wanted in the first place? What is he going to say? I'm taking it as he isn't favorable or he'd just write the script.

I hope I'm prepared for whatever he throws at me tomorrow. I'm certainly no expert and far from knowing all I'd like but I do know something is not right. Hopefully I will be able to reign in and organize my thoughts so I don't sound like a raving lunatic. I have to catch a break so eating, right? I suppose that's not guaranteed either. Big, big, sigh.

[Jeanemcl]

Big breath....count to 10. Still frustrated? I don't blame you. Hope you get some answers soon. Thinking of you.
Jean

[sunny]

Oh Deb, my heart goes out to you!i know that frustration of talking thyroid treatment with endos...tho hashimotos, not cancer. You have NO thyroid at all, right?
Today I was so grumpy, jumpy, stressing out at little things & even more still the big things!inside was like an eggbeater ..tense... I thought I must be channeling Deb! Lol!
My PA prescribed Armour without me haranguing her! But is it the right dosage? Who knows...
Am I stressed from MC or thyroid off?
Think I'll look for that FB group... I loved the open letter... Yup! That pretty much describes it, alright.

[DebE13]

Thanks Jean. I'm trying to stay focused.

Sunny, the letter was a very touching read. I'm trying to decide right now which symptoms to focus on to make my point. Although, with this endo, it may not matter. I've been making all of these calls while at work which is also a treat. Now I have to make sure I'm available and not on the phone, with a customer, or collaborating with co workers when the call comes in on my cell. Basically, I have to limit what I do today so I'm available. Of course, there's no anticipated time for the call, for all I know it could be at the end of the day.

Haha, I love your sense of humor. At least you made me laugh.

[lorimoose]

Hi Deb,

This may be totally out of the realm of possibility but....would your PCP be willing to monitor your blood work, and you get what you know is right from India? Then if it did not go as you anticipate, you can battle
with the local endo.

Just reading what you are going through, while the numbers speak for themselves, makes me furious (on your behalf).

I wish you a much better day, filled with helpful doctors!!

Warmly,
Lori

[tex]

Sunny, the letter was a very touching read. I'm trying to decide right now which symptoms to focus on to make my point.

Remember that technically, the details of that letter no longer directly apply to you. Theoretically, you can't have autoimmune thyroid disease if you no longer have a thyroid. (Though we all know that theory doesn't mean much when you're sick anyway, despite the fact that your symptoms conflict with some highfalutin theory). However, if that seems to be a sticking point with your doctor, you can point out that it is possible for your body to produce antibodies to synthetic levothyroxine.

If she/he denies that possibility, point out that virtually all type 1 diabetics produce antibodies to the synthetic insulin that they are forced to take. They take it anyway, and the body eventually develops a tolerance to the insulin. But the immune system continues to produce antibodies, which means that chronic inflammation is the result (this is IMO an important reason why diabetics are so prone to the development of other problems — their body is always inflamed).


Lori,

IMO, the odds of finding a U. S. doctor who would be willing to be involved in a treatment program (which implies endorsement of a treatment) that involves the use of blackmarket medications (IOW, medications acquired outside of domestic distribution channels), would be slim to none (but that's just my opinion).

Tex

[Lesley]

Tex - my PCP is more than willing to help me get drugs from where ever.

Deb, Lori, Sunny..oh how I know how you feel! Whatever it is that is wrong with me, apart from excruciating pain, fits nicely with that open letter.
I really, truly, sympathize and empathize fully.