ANA Discussion Forum
AN Community => AN Community => Topic started by: nancyann on February 28, 2008, 09:47:28 am
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Hi all: I attributed my chronic fatigue to this AN surgery, even 1 1/2 years out. Also feeling depressed, dry skin, hair brittle & breaking off; well, I had bloodwork done a few days ago & my PCP called last evening - seems my thyroid is shutting down.
This is what's been causing all the above symptoms - & it's quite common for women esp. those in peri & menapause.
Just an FYI if it seems you've been feeling this way even way past post AN, check with your PCP (better safe than sorry).
I go back for repeat thyroid function tests in 6 weeks.
Always good thoughts, Nancy
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Nancy, I'm sorry to hear that! I did have that checked, as my family has a history of thyroid problems. Make sure they check not only your T4 but your TSH. My mom's T4 is normal, but her TSH is almost non-existant, so the Thyroid is working on it's own without pituitary stimulation, which is clinical hyperthyroidism. I had never heard of that!
Hope you can get it medicated and get rid of the fatigue!
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Hi Nancy.
I have hypothyroidism too. Fortunately, that's a pretty easy one to treat and you'll really notice the results. I get my blood work done about once a year now, and I can always tell when it's going to be off - I feel like I'm dragging, my hair is dry and I shed worse than my dog and I'm always cold. Once we get the synthroid back up to therapeutic levels, I feel 100% better.
Sorry you have to deal with this now too, but at least there's an easy fix that does not involve cutting you open!! And the generic form of the medication is relatively cheap (more money to spend on better things...).
Lori
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The link between thyroid and AN issues has never been
proved (not that I have seen, any way)
But..there does seem to be an unexplained "cluster"
ie rather more linked issues than you might expect
many folk seem to have both (cant prove it - but it does seem so)
a poor thyroid level can cause lumps on/in the body
- but these are not schwannova type cells ?
- and thryoid issues are sometimes genetically linked...
Best Regards
Tony
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Nancy that is great news. You will start to feel better and more like yourself soon. My son has hypo and his pituitary does not send any messages to his thyroid at all. Those hormones can cause such a problem when they are abnormal. :-* 16
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Nancy,
I guess it's better to have answers though, than just guessing that it's from something else and thankfully there is something that can be done to help you. I am 4 years out and have been bothered by the fact that I'm extremely fatigued, along with a list of other problems that all started after I had AN surgery. I had a long talk with my PCP last week (I never really addressed all of the issues as one but instead just addressed one at a time) and after he did a pressure point test (that's what he called it) he told me that I have fibromyalgia. Not sure what we're gonna do about this one, apparently there isn't any real "cure" out there yet. Just taking it one day at a time. A good thing though is that I don't need any surgery and it won't kill me!
~Karen
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Nancy~
Hello!
I had my thyroid removed almost 2 years ago. Thyroid stuff runs in my family also and I had a lot of "growths" (one Dr. called them one thing the radiologist another so I just decided on "growths"!). They said that they could leave them in and they might grow and be unsightly (HELLO, when you have a face like this you don't need anymore strikes against you!! :o) or they could turn cancerous! We decided that A) I would bounce back from surgery better at 36 than 46 or 56 and B) that we didn't want anything that didn't need to be there in my body! The surgery was a piece of cake. In fact, I tell people that of all the surgeries I have had, that is the one I would recommend!! :D Getting the dosage of Synthroid right was a bit tougher, but no big deal either. I still get tired (especailly if I forget to take the medicine!), unforunately, & I do have to blame a lot of it on the AN & stroke, but nothing unbearable. You will definitely notice a difference!
So glad you found this!
K
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Hmmm ... me too! :o both my mother and her brother had the removed... thought my AN issues were thyroid problems.. and asked my GP for thyroid blood workup ... he did.. but also sent me for a MRI .. and we all know how that ended up ;)
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ok, this one piqued my interest as well. Had a benign growth on left side of thryoid, which they removed back in 1998... and AN diagnosis almost 3 yrs ago. Now, in my case, I tend to grow benign lumpy-bumpies (and 1 not) but I'd be curious on this one as well.
*sits back with 2 lbs bag of M&M - new Dark Chocolate*
Phyl
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Thanks for all the replies. I don't believe there is a link between AN & thyroid (sorry if I gave that impression). I'm just glad to know it's NOT due to
AN but my thyroid which yes, as some have said, is easily treated.
I wish my doc would order the med right away, but she wants to repeat the TFTs 1st, then start the med. I trust her judgment.
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Well, my Dad and I both have AN's and hyperthyroidism. Both of his conditions are under control and not being surgically treated due to his age and the fact that he has Alzheimer's as well. My thyroid was treated with Radioactive Iodine 16 years ago - a year before my "sinus" headaches started and apparently, about the same time my AN began to stretch out and make itself comfy in my head. I'm guessing someday someone will find some connection between all these things.
Lori
p.s. Phyl... you're not going to eat the whole 2lbs yourself, are you?
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I would wonder about the radiation causing tumors...
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Following my surgery and subsequent Gamma knife to remove mister tumor I have suffered BLAH its not like fatigue being tired and sleeping I just have no get up and go and the endocrine guy was having me zapped with testosterone once a week it seemed to help but my blood thickened so Im off it now who really knows?, One of my friends who was a stroke survivor also felt sluggish and they finally determined his brain wasnt getting enough oxygen so they installed a pacemaker which increased the blood flow to his brain and it perked him up, so who knows? Keep trying and let us know what works I was almost ready to start smoking crystal meth as them people seem pretty frisky? ( BLAH= Being Lethargic And Hurt)
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All of these posts are very interesting since I was treated for hyperthyroid with radioactive iodine just one year prior to my AN surgery. The last time I had any problems with my thyroid was in 1984 when I had a goiter removed. After that, my thyroid always tested normal until 2006. Coincidence? I'm not so sure now.
Jean in Mississippi
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Yes, as the saying goes: 'my get up & go just got up & went'
I remember when I was quite young (my teens), working in hospitals & taking care of pts. who were post radiation - emptying bedpans, etc....
sure makes me wonder.... I've been growing tumors since age 17 (lucky for me all benign....)
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The other thing I've noticed is that a lot of people seem to have auto-immune disorders as well. I wonder what the percentage of AN patients with MS/Fibromyalgia/RA is compared to general pop stats. I was thinking this already, then Statics post of her recent Fibromyalgia diagnosis has really got me wondering. So far, knock on wood, I have nothing else going on that I know of.
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add me to the list of AN'ers with FMS.... my first (of, unfortunately, many) diagnosis to my on-going medical nightmare....... informed my FMS was secondary to primary issue... not AN related. Was diagnosed 7 yrs ago with primary issue and FMS.... my AN diagnosed almost 3 yrs ago.
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Interesting thread. I must be an exception. When I first presented to my PCP (fatigue, balance problems, loss of appetite/unintended weight loss, head pain, etc) he sent me to have blood work done - looking for a thyroid problem. My blood work showed a perfectly normal-functioning thyroid. Next came the MRI. He was looking for a sinus problem. Surprise! It was a large AN.
I don't have Fibromyalgia but my wife has suffered with it for over 15 years. She has all the symptoms (it's a clinical diagnosis) and takes a variety of medications to help her function semi-normally. Of course, everyone tells her she 'looks great' (she does) but she often fells lousy. This being the case, she has empathy for me and anyone who suffers from maladies that are not necessarily obvious.
Jim
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Jim, fast question please... is your wife on Lyrica? Been investigating it (I got 17 out of 18 pressure points) and if she is, would love her thoughts on it....
You both have your hands full... sending the infamous huggles to help the cause.
Phyl
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Phyl, Amy (Raydean's daughter) is on Lyrica and it's working wonders. They are messing with her meds right now as she's presenting several AID symptoms, and they're still not sticking with one diagnosis, she probably has 2. So they may change it, but it's done a lot of good.
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Thanks Kathleen... Raydean had told me the same thing about it... as I've heard good and not-so-good (my mom is on it as well). Will continue to survey how folks are dealing with it... not like I'm not already an major shareholder in my local pharmacy. ;)
thanks again,
Phyl
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My doctors have officially diagnosed me as : chronic fatigue syndrome, fibromalaysia (sp) and post raumatic stres syndrome along with severe depression. I was given Cymbalta at 120 mg. Can't take Lyrica because I'm allergic to some of the stuff in it. The Cymbalta helps with the pain. No thyroid problems..............................yet
Hugs,
Brenda
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Just read this one and found it interesting as I too had my thyroid checked, twice, years b4 tumor diagnosis.
What I would like to share is years b4 thyroid stuff I became massage therapist and during our schooling we learned about fibromyalgia symptoms, testing for it, etc. I had body aches and saw rheumatologist who put me on a few different meds that only made me swell up and didn't take away pain. So, out of frustration I went to fribro symposium where different doctors talked about what they have found to be a cause and what they do for txing their patients. I talked with patients who were on combinations of meds and they still were saying "Some days are good and some days are bad." One doctors talk said he thinks cause is the megalovirus and treated patients with heparin and they did well, unfortunately, as he stated you cannot stay on that forever. He used coumadin for long-term relief. Didn't want this regimen so sought the guy who spoke about specific diet. Went to see him and was put on the "candida diet", esentially he thought my system had a build-up of yeast and this was causing the pain. Usually 6 weeks does a world of good for most, but me.....I'm special and stayed on it for over one year! Interestingly enough it got me off my inhalers that were prescribed for me (dx severe allergic asthma, but still had those weird moments of sudden throat closing?! so still carried epipen), lost weight, pain still there.
Now here's my other bit of interesting info. After a few more years went by after my AN dx and tx, a friend called and told me she had been dx'd w/fibro. I sent her my info from that symposium and interestingly enough as I perused the papers I found a statement that read ".....another cause for fibromyalgia is brain tumor!" So, after my AN removal my fibro symptoms have mysteriously disappeared and so have my severe allergic reactions (threw away epipen), all the foods & meds I would list in the "what are you allergic to" column I no longer fill in.
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Jim, fast question please... is your wife on Lyrica? Been investigating it (I got 17 out of 18 pressure points) and if she is, would love her thoughts on it....
You both have your hands full... sending the infamous huggles to help the cause.
Phyl
Hi, Phyl:
Thanks for the huggles. :)
My wife (Tina) has just been switched to Lyrica (replacing Neurontin) by her rheumatologist. He's slowly introducing it into her regimen (75 milligrams daily, for now) and so far, she really hasn't noticed any difference - but we realize it's too still a bit too early to realistically judge it's efficacy. Of course, we're optimistic due to positive reports we've read regarding this new pregabalin drug.
For any other Fibromyalgia sufferers reading this, I would suggest they try to locate and join a local support group for more information. There are many Fibromyalgia-centered websites that also offer information, including new drugs and therapies. Here is one: http://www.fmnetnews.com/ (http://www.fmnetnews.com/).
As with AN complications, 'Fibro' is a challenge but can be managed. My remarkable wife has been dealing with it for 15 years, along with back problems (4 separate surgeries in 10 years), Crohn's disease and a few lesser maladies. She doesn't allow these to constrict her life and she simply deals with all of them, as necessary. Her positive, intrepid attitude helped me recover from my AN surgery quickly, as she set such a great example of how to deal with medical problems. Although she never asked for a thing, I knew she also needed my help around the house and elsewhere, which also motivated me to 'get back' (to normal) as soon as I could.
I trust this post is helpful to you, Phyl, even if I cannot offer a comprehensive assessment of Lyrica quite yet. When I can - or more correctly, when my wife can - I'll be happy to pass along any useful information to you and anyone else who may be interested.
Jim
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Jim,
You (and Tina) rawk! :) Thank you!!! (pls consider the next brunch... I'd love to meet you both).
with dr guidance, I was off Neurontin as of 4 mos ago (got as high as 600 mg/day) Interestingly enough, my pain levels lessened once I weaned off and now, my pain levels are fairly tolerable (from headaches to all over body aches, except for my lower back arthritis, due to ortho-surgery over 25 yrs ago, so that's a whole different animal onto itself).
I'd love to hear more as to how Tina does with it... I know it takes time for it to build up in the system before it begins to do the trick... please please keep me updated.. .and thanks for the FMS link. I was made aware of local FMS support groups, but haven't checked into it yet as other medical yee-haws have my current focus..... but, not ruling it out... I know what this AN website has done for me (ok, not just the ulcers, folks!) but I am a firm believer of proper support with like-minded (same issue) situations.
Jim, thanks again.. and one more huggle.. just cuz :)
Phyl
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According to Amy's Doctor it's fairly routine for the Doctor to prescribe Lyrica and a anti depression drug such as Cymbalta for the treatment of Fibro. Lyrica was FDA approved for Fibro last June ( first one approved for Fibro) and some insurance companies are dragging their feet in covering Lyrica as it is a really pricey drug. Amy wanted me to share with you that it's important that you check with your insurance company to see what level (mg) or if they will cover this drug and what the patient may need to do in order to have this drug covered.
In her case the insurance co had a criteria that had to be met and X amount of pills were covered.
Since it comes in different milligrams it took working with her doctor so the right level was prescribed without exceeded the limit. I would consider asking your Doctor for a sample pack "freebe" to try it out. At times when she has exceeded the "allowable amount" her Doctor has been really good at giving her sample packs to insure that she always has enough.
Amy's first week on it was rough, she had major sleep distrubances, In fact she almost gave up on it that first week due to the way it made her feel. (150mg) It hasn't been a cure all for her,
but it has greatly added to her quality of life and allows her to function on a "more normal level".
Often times as mentioned in Jim's and Brenda's posts a person can have multiple auto immune diseases. I think you're more at risk to develope another auto immune disease if you have one.
i wonder how much of this is genetic, recessive genes? Or maybe we're more aware
Phyl, In the past Amy took neurontin,, but it wasn't working for her.
Best to all
Raydean
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Raydean,
thank you SO much for that response... and please thank Amy for me as well...... still sitting tight as I'm in the process of cleansing myself of all meds (Rx) to clean out my system....... this is great info to know and I appreciate you sharing it with me/us.....
As always.... huggles to you and Amy and Aaron and all.
xoxoxoxoxo
Phyl