Friday 1 June 2012
Thinking Aloud (Allowed?)...
So, what's going on?
With me?
Well for starters: I am not being a very good blogger! All the "how to blog" guides tell you to post regularly so that your followers can get in a rhythm. But I am sporadic at best.
There are many reasons (excuses) for this... and they are all on me. But do not worry... the flagellation and self-loathing has been turned up to eleven!
Many of you will know by now that my Borderline Personality Disorder (blog post: Introspection) is a daily struggle for me, and that when I think too much (as if!) it becomes... as if by magic... even more prevalent in my life.
I have been thinking a lot lately.
It is what I do.
It has a name... procrastinating.
I am sorry.
But I am here now.
Anyway, since my last endocrinologist appointment (Endo The Line?) I have begun researching, at my own pace, my options going forward, it goes something like this... and yes, I've been here before...
Do I go down the adrenal fatigue route first?
Or, do I explore the NDT (Nature-Throid) way forward?
Sounds oh so simple, but it throws up LOTS of questions... to which I need to find answers...
I am crippled by indecision.
Eventually I hope to assemble some sort of "thyroid 101" that makes sense to me... yeah right!
So I am going to prepare my own crib notes on the topics I need to get to grips with... and I will share them with you by way of blog posts, with links to the source information where necessary, all right and proper like. Something tangible. This exercise will serve a dual purpose... kill two birds with one stone if you will... as my hypo memory is so poor I find I have to keep re-researching, re-reading, as so little information appears willing to convert itself into acquired knowledge that is happy to make a home for itself, and commit for the long-haul, in my beautiful cranial cavity.
Why didn't I think of this sooner? D'oh!
Fail to prepare, prepare to fail. I do not want to fail. I have heard it said that there are people who would jump on in the deep-end no bother, sink or swim, but I need to dip my toe in the water first. You see, I am terrified of making a mistake that has serious consequences in the long-term.
I am also filled with doubt about everything thyroid.
My belief has been rattled.
Why?
Because not one "health professional" has shown even the remotest interest in my health/wellness/quality of life going forward... they all appear to be following an agenda to which I am not privy but which feeds my wild, self-doubting, imagination. And to make matters worse... my family feed these doubts with their total lack of empathy or support, bordering on a total disinterest, when it comes to my battle for wellness. My brother flat out doesn't care and my mother is of the persuasion that all doctors are above and beyond reproach.
I have been living back home for 8 months now and their attitude towards me breaks my heart.
If I can find the strength to ask for help I can be saved.
I digress, back to the crib notes... the first topic I will cover, and share with you as I think aloud, will be on adrenal fatigue...
Just don't hold your breath *winks*
For as long as we have hope we have a chance.
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Oh, Robert, I'm so sorry about your family. It's terrible the way they treat us! But they just can't understand - well, very rarely, anyway. I just want to scoop you up under my wing and take you home to look after you! I'm old enough to be your mother. lol
ReplyDeleteYou know that web site, http://www.butyoudontlooksick.com/ ? Well, that's just the problem with us : we don't look sick! And doctors have absolutely no understanding of the disease, because they don't learn about it! Do you know how for how long the average doctor spends on the thyroid, one of the most important glands in the body? About half a day! They don't learn anything much about hormones, with the result that they are absolutely terrified of them! You really can't expect much from the average doctor. Those that know about hormones - and they are not endos, as one would think, given the name - are anti-aging doctors. But they're not cheap.
In my humble opinion, the best place for you to start is with the adrenals. Because if your adrenals are out of wack, it is impossible for your body to use the thyroid hormones you are taking. It is written in the instructions of most replacement thyroid hormones that adrenal problems should be addressed BEFORE the patient is started on thyroid hormone! But how many doctors are capable of that! I had one, I don't think he even knew where the adrenals were! lol
So many things I want to say to you but this will have to do for now. Except, lay off the diet coke !!! Do you not know how dangerous artificial sweetners are? Especially for those who are hormonally challanged like ourselves. You stand little chance of recovering your health if you are ingesting those poisons. I know sugar is bad, but artificial sweetners are even worse! Be brave, take the sugar. lol
So here's wishing you the best of luck until your next post, Liliane
I am so happy to see that you have posted again. Thank you for taking the time and making the effort to do so. I have enjoyed getting to know you through your writing.
ReplyDeleteDo not be so hard on yourself. I have lived this journey for close to 20 years. We are running a marathon, not a sprint.
That we have to self-diagnose and self-treat is bad enough, but that we have to do it while battling our health care professionals and our families, and while our mental and physical condition is severely impaired is reason enough to excuse ourselves for procrastinating.
Don't stress too much about your family. Until they walk in your shoes there is no way for them to understand what you are going through. Dealing with people who see doctors as being one step below God (or equal to) is hard. They will often continue to do so until they are misdiagnosed or mistreated, then they rapidly join you. (There is no saint like a recently reformed sinner.) Of course we pray they never have that happen, but we can't help but rejoice a little when they join our ranks and look at all medical care workers with skepticism.
Check out the website of Mary Shomon on about.com. She has already done a lot of the research and it will save you a lot of time. No point in reinventing the wheel.
BTW, if you are suffering from adrenal fatigue or adrenal failure, you will have to have adrenal support as you gradually add natural thyroid. The addition of T3 w/o supporting your adrenals can be a recipe for disaster. Again, Mary Shomon is a good source for this info.
/sigh I am still posting as anonymous. Need to fix that. ahhhh, procrastination strikes again. LOL Love, Julie
Hi Courageous HypoMan! You are very patient for someone in your condition. I've been thyroidless since 2004 (Hashimoto's, goiter, family history of medullary thyroid cancer from which my father died at age 54). I have had the advantage, over you, of having had vigorous health, including a very optimistic temperament, with plenty of energy right up until I had my thyroid out at age 50. Now I'm 57 and have had all the experiences I've read about on your blog plus more (that whole menopause thing added to the equation). So, the contrast makes it really obvious in my case that it's BECAUSE of the entire endocrine system imbalance, which started with the thyroid, that things are awry. I'd venture to say that this borderline personality disorder you've been diagnosed with may be right in there as a symptom. I was diagnosed as bipolar after the age of 50, after the thyroid came out and things went downhill. It's absurd. One wonders how many mental illnesses are really endocrine illnesses. Don't get me started.
ReplyDeleteLike you, I have periods of obsessiveness and an extreme concern about what other people think--but they are symptoms that my thyroid or adrenals are not happy and show up when I change doses of thyroid. I can see this by the contrast between my 50 years with a functioning thyroid vs my almost 8 years without and not be being balanced endocrine-wise. Also, I can see this by how the symptoms wax and wane with changes in desiccated thyroid and cortisol (for the adrenals) doses. What I'm saying is, consider that some, if not all, of these emotional/psychological symptoms or diagnoses are due to the thyroid (or adrenal or other fallout) situation.
Best wishes on your marathon.
Jennifer
I went back to my Doc (a Naturopath) last Fall, complaining of extreme fatigue and thinking my thyroid meds needed adjusting (aka increasing). She felt my adrenals were now compromised and put me on a Chinese Herbal supplement called Eleuthero tablets. She suggested I take 2 in the am (after my hour wait for thyroids) and then 2 again at lunch each day, and to give it 3-4 months to work.
ReplyDeleteIt has been about 8 months now, and when I forget to take them (which I do often-blame the thyroid fog), I definitely notice how tired I am compared with the days I remember to take them.
Obviously, we are all different, but it has really helped me. I spent 3 years trying to get my meds figured out. Didn't want to go the Synthroid (synthetic route), so 1st tired Armour. That helped a bit, but my numbers were still high, so she switched me to Nature-Throid. That failed me too, and my Naturopath said, "I'm afraid you'll have to try Synthroid." She started me on Levothyroxine alone, but eventually increased the dosage and added T3. Now I take the adrenal support as well, and although I definitely have "bad thyroid days" from time to time (when I'm extremely achey, fatigued, and chilled), on the whole I feel fairly normal.
Just one more person's experience to put into your personal narratives file. Good luck to you. Never give up the search no matter how disheartening it can feel.
I also do not get full support from my family. They have no idea what this feels like and I look normal on the outside, so why should they empathize? That part is very hard.
I'm sorry that it appears that your doctors are dip shits and you cannot get proper treatment. I would like to thank you for writing the blog and just say I have felt every emotion and ache that you have. From am I going crazy to why wont anyone listen to whats wrong with me, anger, depression..blah blah blah. I noted that you are on armour...are you able to get your hands on synthroid? something that maybe can be ordered? Another thing that I have been told is when you have Hashimotos, due to the nature of the disease you will never fully be treated as it makes you swing like a pendulum, hypo to hyper. keep your head up.....cause really what else can we do right? Im told it gets better...... :)
ReplyDeleteHi Anonymous, if I might just say something here. It's true about the Hashimoto swings. For that reason, one should put the gland completely to rest by taking enough replacement hormone to bring your TSH down to near as near to zero as you can without hyper symptoms. That way the thyroid is no-longer stimulated and therefore the anti-bodies no-longer attack, destroying the gland and provoking the swings. And also, there'll still be a little bit of healthy gland left in case they ever find a cure for Hashimoto's !!! Worth a try, don't you think ?
DeleteLiliane
Hi Robert, one thing I have to say regarding your adrenals - and all glands, come to that - it is important to understand the difference between 'supporting' and 'stimulating'. A lot of doctors seem to muddle the two. 'Supporting' means feeding, resting, helping the gland to recover. 'Stimulating' mean... well, we all know what stimulating means ! Eleuthero is an adaptogen, which are often confused with a means of support because it regulates the system. But they do so by stimulating glands that are under-performing. The last thing a sick gland wants is stimulating because it will then work itself to death and you will find yourself with no adrenals at all. The only choice we have at the moment - as far as I know - is to do the same as we do with a sick thyroid i.e. replace the hormone that the gland is having trouble producing. You have the choice of hydro-cortisone, or whole gland, but at all costs avoid adaptogenic herbs.
ReplyDeleteHope this helps, Liliane