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Avatar universal

Needing advice and some response

Hi,

I am hoping for some answers, because I am having difficulty in functioning with hypothyroidism.  I recently participated in a discussion on the board where it was mentioned that there were certain challenges associated with people also having fibromyalgia syndrome with hypothyroidism.  I tried to search using those key words both on this site and elsewhere, but I want to find an article that my doctor will take seriously.  If there are challenges that might be being missed in my routine screening of the thyroid, I want to address them.  I am basically not functioning.  The sweating has started again and also my movement is out of control.  These things seem to be related to my thyroid replacement.  I am so down that I haven't even called to have a copy of my records sent so I could post recent lab values.  I did have a ferritin test and am awaiting the results.  Here are some of the symptoms that are occurring:

1) Persistant low weight-95 pounds, 5'4".
2) Trouble with temperature regulation and then sweats/with chills.
3) Restlessness and insomnia
4) Waking with pounding heart although pulse appears normal.  Walking a short distance will bring on this condtion.  It takes a long time of lying down for this symptoms to subside.
5) Dry skin to the point of not being able to use soap when bathing or showering.
5) Lack of appetite
6) Lack of sex drive/sexual functioning.
7) Production of small amount of breast milk.

Please try to help me find some info that might improve the doc's  visit.  My doc is not very good and bases all choices on lab results only.

Thanks,
Cheryl
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Avatar universal
My dear Jenipeni, thank you for being so happy for me!!! Not surprisingly, given my history of ups and downs as I adjust to medication, I have had a few less-than-grand days since my last dosage increase. I have had some very good days, however, and seeing your three cheers for me made the good days suddenly seem more vivid. I keep reminding myself that when going through a process of two steps forward and one step back, if the numbers are added together, the sum amounts to movement in a forward direction even with the "one step back" days included.

Thank you very much, too, for offering me the idea of Selenium. I had not encountered the idea before. I definitely will talk with my endocrinologist about it. He is quite open to trying a variety of treatment approaches.

Yes, I was tested for antibodies, and I have none. My thyroid gland's struggles may have beeen caused way back in the 60s, when I was still in adolescence, and I was given radiation treatments for acne. The idea had become controversial, but I remember the dermatologist's saying to my mother that he used a low dose of radiation for the treatments and thought that they were safe. Those were the days before anyone thought to shield vulnerable parts of the body with lead coverings, though, so there I lay on the table with an exposed neck, having first one cheek and then the other zapped with radiation. It makes me shudder to remember.

At any rate, even though I do not have antibodies, Selenium might be a help to me. Thank you for the suggestion.

...and now it is my turn to say: Three cheers!!! I am happy and highly impressed that 1) you made it through an 8-hour shift, 2) you were appropriately tired but not exhausted when you got home, and 3) it was only the day after the highly taxing undertaking of a staging a big dinner party. WOW! Since I was a nurse's aide at one time in my life, I think I can put your experience into an accurate perspective. Isn't it wonderful to do something that is bound to be tiring, but you feel tired in a normal way, not an overdone way, at the end of it? I am not yet to the point of being able to count on that, but I know how exhilirating it is to respond to a normal demand of everyday life in a normal way.

Cheryl, I hope that it will be your turn to feel that exhiliration soon. I know that you are still waiting to see the new endocrinologist; I remember that your appointment is in April. It must seem like a lifetime-length wait. I am sending you e-hugs, and then on to jenipeni!

My best to you both,
Jenny

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173351 tn?1201214057
Hi Jenny!
It made me so happy to read your post and know you are having success with your dosing and the TSH going in the right direction BUT most of all you have been beginning to feel like your old self again!  It's a good sign!!!  HOORAY!!!  Three Cheers for Jenny and her caring doctor!!! Yipee! Yipee! Yipee!    

Have you considered trying supplementing with Selenium to help boost your T3 levels before adding Cytomel?  Just an idea, one that I am going to try once I have this next blood test.  My personal experiment is that after this next blood test, I'll have had 3 tests post TT.  In each of my tests I've been middle to high range Free T4 but only low to middle range for Free T3.  
So it will be interesting to see subsequent blood tests after I begin the Selenium.  Not terribly scientific or accurate but it will be interesting none the less.

From memory I think the literature confirms that Selenium helps reduce antibodies and MAY help with the conversion of T4 to T3.  

By the way I can't remember - were you ever tested for antibodies?  

Thank-you for wishing me strength and endurance - it must have worked too! LOL!  Yesterday I did my first 8 hour shift nursing since my TT!!!  I made it!  And I didn't feel tired till I got home and sat down, but not exhausted!  And that was the day after my hubbies b'day when I cooked a big dinner for him and family!  Whew!  I can't believe I made it!!!


Dear Cheryl

Are you out there still?  How have you been?  I hope you didn't take offence to me wishing you strength and endurance - in no way did I mean you are not strong already because you certainly are.  In the time we have been corresponding I think you have shown lots of guts and determination.  But even the strongest of us get worn down by chronic long term illness unfortunately.  
By the way I totally agree with you about the word 'natural' being thrown about too often these days.

E hugs sent back to Jenny and also onto Cheryl!

Bye for now
Jenipeni

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Avatar universal
Thank you, jenipeni, for thinking of me! You are right; I may well have been on my way to my endocrinologist as you were getting ready to turn in for the night.

Your crossed fingers worked! My endo was a little surprised that although my TSH had dropped from 1.9 to .93 over six weeks' time, my free T4 level had risen from 1.21 to an impressive 1.22. (Yes, I am being ironic!) He said, as he says often, that the world of endocrinology knows far too little about many things.

At any rate, he took very seriously my carefully thought-through opinion that signs and symptoms of the previous ten days clearly indicated the need for a medication increase. Beginning yesterday, I have gone from .75 to .88 mcg. a day. It probably will be my last increase, since my endo said that if my TSH level drops as far as .5, he would not want to suppress it further. When I look at an overview of dosage increases and the TSH levels that followed, it seems likely that the latest increase will push my TSH down to .5 or less. If a blood test six weeks from now indeed shows that sort of level, and if I still am not feeling well, then it will be time to talk about experimenting with supplemental T3.

I plan to cross that bridge when I come to it, however, if indeed, I come to it at all. For almost three weeks at the 75 mcg. dosage level, I was tantalizingly close to my former level of excellent well-being.

It was hard on my morale to have my well-being go downhill again, so I want to think you for keeping my morale well-boosted. I think you are raising a good question--we may be setting a record with the length of this thread! The supportiveness that you have contributed to it, though, has been of record-breaking quality.

For example, your message to Cheryl is so eloquent and so wonderful that I can only add: If it were possible to send someone some strength and endurance, I would add to what jenipeni would send to you.

I would send some to you, too, jenipeni, as you run your own sort of marathon. Thank you for the "God bless" wish. I am returning the thought to you both: May God bless both of you and your families.

Sending you e-hugs,
Jenny
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173351 tn?1201214057
Hi gals,
Really tired tonight it's been a big day, but I thought I'd post a quickie.

Best wishes Jenny for your visit on Thursday and test results (you must be just about to start Thursday as mine is coming to an end)!  Fingers crossed for desirable outcomes for you!  Let us know how you go...

Hey! I wonder if together we are setting a record for the highest number of posts in a thread?  We are getting close to triple digits!!!  I've never seen another one this big!

Darling Cheryl,

I thought of you today while at uni when I heard an interesting take on intuition.  The take was that intuition is just when we lack the words or our conscious mind has not yet recognised why it has come to particular conclusions.  We already have the knowledge within us.  It reminded me of your earlier comments about the feelings you are having about what your body is doing (or not doing).  I have high hopes for you that you will get there with your health - there being a place of health and wellness.  I wish it were possible to send someone strength and endurance because I would send some to you, to get you through to the end of this marathon you are on.

Have you started the new therapies yet?  I pray they bring you joy and relief.  

May God bless you both and your families.
xx
jenipeni
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Avatar universal
You are very, very welcome, Jenipeni! I am more pleased than I can tell you if my comments happened to be well-timed. It certainly is the case in your life at the moment that you and your husband have gone from rain to a downpour, which makes me especially glad if I could boost your spirits a bit. I will cross my fingers for you as you head into the gyn consultation.

Cheryl, you probably could write an entire book on the topic of "the numbers are normal" thinking among physicians. If we were to ask most physicians if it is true that the field of medicine knows only about 2% of everything that medical doctors would like to know, the vast majority would say, "Yes," I feel certain. Where any one patient is concerned, however, a lot of physicians seem to think that if the numbers are normal, then there is no reason to pursue the patient's complaints. I have had the experience of talking to a physician who took me seriously, who seemed to believe that I was being entirely accurate in what I described, listen to my full account and then say, "I don't know what to tell you" as if that one statement were a diagnosis and treatment wrapped into one.

Doesn't it amaze you sometimes that we manage to survive the "help" we are given for our afflictions along with the afflictions themselves? I feel extraordinarily blessed in having an endocrinologist I work well with. Tomorrow morning will be a blood draw, and then I see my endocrinologist on Thursday. It will be disappointing if he does NOT think another medication increase is warranted, since I was tantalizingly close to feeling like my old self until after 30 days of my current levothyroxine dose. A four-week downhill slide has been characteristic of me with each level of medication I have been on, which is why I am hoping that the numbers from tomorrow's blood tests will not be "normal."

Whatever my endocrinologist says, though, there will be sound reasoning and genuine caring about me behind it. On days when I am feeling my most unwell, it is easy to lose track of the reasons I have for feeling gratitude, so I am glad to have you two to remind me that my situation contains reasons to be grateful indeed.

Sending you both best wishes,
Jenny

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Avatar universal
Quick note,

I don't believe it was you two that caused me to have the feelings I did.  The words impacted me because of some history of others using the words.  So, don't take it personally please.  I almost did leave, but mainly because I was heavily considering suicide to end what has been a long struggle with no end in sight.  I am glad that I pushed my doctors to finally do something although it was stressful to do so.  The endo thinks that the breast discharge is ideopathic, and it is normal for some women to have discharge after having children.  While true, I never had this until after my thyroid was ablated.  Also, I believe that many of the symptoms I was having during Graves' were actually related to out-of-whack female hormones.  But no one would consider it, not even the OB, because the numbers were normal.  After telling him that my quality of life was not acceptable, I believe I convinced him and my surgeon to talk and think.  I believe that the testosterone will help alone.  Then, I will add Estradiol if necessary.  It bothers me that I will not be given progesterone, even though I lack a uterus, because much of what I read indicates that it should be used even with women that do not have a uterus.  I am also bothered by unopposed estrogen, because I have endometriosis.  I think a proper balance of testosterone, and estrogen plus progesterone, should be used for the best effect.  I would not use Progestin, but rather "natural" progesterone.  I put it in quotes, because it is still synthesized, but can be manipulated to be like the progesterone in our bodies.  The word natural is being thrown around a bit too much these days.

I hear you on the medicines.  I have eliminated the Marinol as of a couple of days ago.  I tapered off of it.  My doctors look at my meds once a month to evaluate and I have researched, but you know that feeling you get about your body and when something is wrong--I have that.  And while the medicines could act differently in me, I have a sense that this is not the case.  In a way, I wish it were, because I could wean off of them and problem solved.  That is why I came off of the Duragesic patch.

Anyway, I gotta go.

I hope you both are doing well.

Cheryl
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173351 tn?1201214057
Hi Jenny,

You are so kind to repay one compliment with another.  Thank-you from the bottom of my heart.  Funny how things come along just as you need them isn't it?  Same happened for me when I read your thread.  Thank-you again.  I hope your days soon become less taxing.

Thanks to both Jenny and Cheryl for the kind wishes for hubby and I.  It's seems we are going through a 'patch' right now.  Hubby's hand is well and truly on the improve, although I wish I could say the same for his job - not happy times at the mo' but I won't go there.  I'm going back to the dentist in a month for the completion of my crown, we bit the bullet and killed our budget.  Next week is my first consultation with the gyno, fingers crossed.  In the meantime I've had a bad bout of internal haemorroids for the last 3 weeks.  At least that's what I hope it is.  It's lasted too long so I'm off to see my normal GP too!  It never rains but it pours (and we are in drought) LOL!!!
Studies are just beginning to gain momentum, got my first assignment already.  

To Cheryl

Glad to see you're still around, I was beginning to wonder if we'd lost you.  I'm sorry you were bothered by the use of the word 'proactive' - I just know that when feeling down and you're not well it can be really hard to muster the strength to keep at it.  I had really hoped to encourage you in saying it when I did.

I'm curious if there has been any association between your low testosterone and your leaky breasts?  Soooo glad for you that you are about to begin treatment soon.  It will be interesting to see if the testosterone cream has an effect on your breast discharge anyway.  And I hope that the insurance company comes to the party for you too.

I understand your thinking in your explanation for why you don't think it is your medications causing some of your symptoms.  Even so... our bodies and the reactions we have to different foods and medications change over time.  People have been known to develop alergies or reactions to medications they have taken for a long time - I'm not saying you have an allergy, just using this example to make my point.  So while you are probably right, I still don't think your medications can be ruled out altogther.  Did you look up each of your medications and look at their side effects?

I've not heard of 'dysautonomic function' - I'll have to look it up when I have time.  I continue to like everything your OB says...

The Armour conversation was on 2/21 and is titled 'Is anyone on Armour?' - at the time of this post it was on page 2.



Good to hear from you both, best wishes with beginning testosterone and estrogen therapies Cheryl.  I hope it works out.

Cheers
Jenipeni
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Avatar universal
Hi guys,

I have finally had the time to get on for a quick post.  I have been busy trying to get my insurance to pay for the testosterone cream, because it is a compound.  I hope I succeed, but am going to have to pay whether they do or not.  My testosterone is very low.  They did a repeat test.  After talking with my OB, I wrote a letter to the endo who was rude to me.  I told her what he had explained to me about my perimenopausal symptoms.  She agreed (after this) that testosterone replacement and estrogen replacement should be done.  Funny how when another doc called her on it, she changed everything she was saying.  I don't think I will be seeing her again, and hope that the other endo will be better, but I didn't want to slam the door shut to someone who might be the last endo in this area.

I understand what you were both trying to say about how doctors perceive "doctor shopping."  What I have done is to simply not tell my PCP if I am going for what I refer to as an "interview" with a perspective doctor.  This way, it isn't in my notes and they will not likely cross paths.  It would be difficult for my doctor to bring up doctor shopping to me, because she is not authorized to talk to physicians that I see unless she refers me to them.  It wasn't you guys, but rather I am tired of hearing those two words.  Unfortunately, today, there are more bad docs than good ones.  That is a reality.  You are right that it is difficult to understand and communicate by writing.  I don't want you to be afraid to talk to me.  I also was a little bothered by the use of the words "being proactive" in my care, mainly because I am so proactive in my care.  But it is difficult for you guys to know every aspect of my life.

My question about the meds was one that I wanted to know about prior to seeing these doctors, because I wanted to know if I should bring them up.  I ended up talking to my therapist/friend, and she told me that she did not think I should bring up any psych med for obvious reasons.  Believe me, I have thought about the possibility of whether the Valium, Klonopin, etc. could be the cause.  But I was on these for a long time without these symptoms.  However, I still want to reduce my Valium, Klonopin, and pain meds to the lowest dose.  The most recent nurse practitioner I saw told me that she believed I would need to stay on the 45 mg of hydrocodone.  If the testosterone/estrogen help with the symptoms (sometimes anxiety, sweats, and on and on), I probably will be able to lower the doses of my other meds.

But as for those drugs causing the symptoms, I don't believe so.  The reason is really simple.  I was put on these higher doses to control the symptoms that I am currently having.  Without the meds, I would be much worse.  I hope that helps explain.

With regard to Addison's disease, the endos I have spoken to categorically do not believe I have that disease.  When no tumors were found on the abdomenal CT Scan and no tumors were found in my brain with the MRI, they decided that I do not have a pituitary problem nor an adrenal one.  I know that it is possible I do have a problem that wasn't picked up by these radiologic studies, but the endos I have seen examined all of the tests by urine, blood, and radiology, and that is their conclusion.  My OB doesn't believe that a glandular problem can be ruled out with tests alone, but he says his hands are tied due to not being an endo.  Hopefully, the endo I am seeing in April will run further tests to be sure that I don't have a gland problem that is being missed.  There are other tests that can be run, but not many.

I had a thought recently.  Fibromyalgia patients often have dysautonomic function.  When I first was diagnosed with Graves', OHSU Fibromyalgia Clinic wanted to run a tilt-table test on me to see if this might be the case.  I was too ill then.  The nurse practitioner who wanted this also was surprised at how high my IGF-1 blood test came back.  I had one run about a week ago.  It was on the high end again.  This is unusual in fibro patients.

Anyway, enough for the night.  I did wonder what the discussion of Armour was about.

I am thinking of both of you and hoping you are recovering well,
Cheryl
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Avatar universal
Thank you, Jenipeni, for your kind words about my Armour-related comments! I especially appreciated the pat on the back because the inquiry about Armour came right in the middle of a hectic time at work, so it was difficult for me to find the time to put my thoughts into words. It is gratifying to think that it was worth eking out the time for, and if there is anyone's judgment I trust, it is yours.

In fact, I think so highly of YOUR thinking that a pat on the back feels doubly good when coming from you. The past few days have been bad ones in regard to my thyroid problem--bad for reasons that are understandable, but bad days are taxing to go through even if they are an expectable part of the getting-better process. Consequently, it was really nice to get an upbeat note from you, and that would have been true even if it did not contain a compliment! I hope that you are holding your own, that your new term in school is off to a good start, and that your husband is doing well, post-surgically.

Cheryl, I hope that you are holding your own, too. I have been thinking of you often.

Best wishes to you both,
Jenny
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173351 tn?1201214057
Hi Cheryl

EmpatheticJenny captured my thoughts exactly (thanks for that Jenny!) - I am not angry and do not wish you any grief or burden from mis-communication. I appologise if you thought that I was labelling you as a 'doctor shopper' - this was not my intention (rather only to say what many in the medical profesion are quick to label people as, which you already know).

I have not been able to follow what doctors you see and for what - maybe it's just my brain fuzz.  It doesn't matter any way, you are the only one who really needs to know what's going on.  And you're an intelligent woman by any measure.

I must applogise because when I commented on your dose of the Klonopin I missed the decimal point!  So you see, my mistake - and a big one.  ALSO (on paper) I thought your symptoms better fit the description for Addison's disease rather than Cushings.

If you don't think the Remeron is the best one for you then why don't you go back to the prescribing doctor and work with them until you find a better one for you.  It is depressing having Chronic illness and while medications can help, they won't cure the depression because they don't sort out the rest of our medical problems all in one hit.  You are in a hard place.

That review of your current medications still seems relevent to me though.

I agree with EmpatheticJenny - and to use some of her words - that in the present circumstances, (the distance, the fact we are not qualified medical professionals AND the enormity and complexity of your medical problems) it is clear to me now that I ALSO should limit myself to wishing you well and not offer you any further advice.

So I will finish in saying this - YOU know your body better than anyone will ever know it, hence YOU will have the most tuned in idea of what the hell is going on with it (with the relevant information/education of course).  

Best wishes with everything Cheryl.

sincerely,
jenipeni

TO EMPATHETIC JENNY,

Loved your recent post about Amour - go girl!!!
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Avatar universal
Hi, Cheryl--

I think I am safe in speaking for jenipeni as well as for myself in saying that NO, of course we are not angry. As I read your latest comments, I felt only distress as I realized that perhaps we seemed to be saying that we saw you as a doctor "shopper," which is very, very far from the message that we both intended to send. If you look at my January 14th comments about the term "doctor shopping," you will know that nothing could have been farther from my mind in regard to you and your recent, extraordinary difficulties.

Especially when going through extraordinarily difficult times, it can be quite painful when communication goes awry. Your most recent post has made me realize that all three of us have been overlooking a hazard of communicating in writing, across a great distance, with someone we do not know. Although neither jenipeni nor I responded quickly to this part of your January 21st post: "I am going to tell you the medicines I am on so you can try to be a doctor--a judgmental one perhaps--for me. I know you are not judgmental, so please try to be for my sake. Here is the list:," when we did respond, we unintentionally made matters worse for you, not better, I think.

The reason was a lack of context. This is the hazard of long-distance communications between and among strangers. Even though you have provided an extensive amount of information about your medical history to date, jenipeni and I lack the context of your life as a whole--all of your history and all of your present circumstances. If we had known you for quite some time, or if we were close to you geographically and could talk face-to-face, we either would have a sense of the complex bunch of information that forms the context of your life, or else we could get a sense of it relatively quickly.

In the present circumstances, though, it is all too easy for communication to go awry which--as I mentioned in the paragraph before last--could be quite painful for you. It is such a help during difficult times to feel understood, but conversely, it can add a lot to a person's burdens to feel misunderstood. Adding to your burdens is the last thing in the world that either jenipeni or I would want to do, and again, I think I am safe in speaking for her as well as for me.

I am sorry that I had to come to this realization the hard way, meaning: at your expense. At least it is clear to me now that I should limit myself to wishing you well and not offer you any advice.

I DO wish you well. I am hoping and praying that the endocrinologist you have not yet seen will turn out to be the sort of rational and caring physician you have had SUCH a difficult time finding in the area of endocrinology.

Sincerely,
Jenny
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Avatar universal
Hi,

I have not been on at all.  I reviewed the posts and I know that you both have big hearts, but I want to respond to a couple of things.  I have only tried to get to an endocrinologist, because my doctors are resistant to treating me since I have thyroid disease.  My OB is still concerned, and it is being proactive that has gotten me through the many struggles over the years.  The doctors I am seeing could not possibly be bothered by me looking for an endo, because it was their desire that an endo handle one.  Both the surgeon and OB.  I love my docs, but they are tossing me around.

I had to convince my OB to do something about my hormonal imbalance through being proactive.  I kept him late because I felt that talking was a must at this point in my life.  My surgeon is a sweetie, and I also talked extensively with him, convincing him of the necessity of doing something about the hormones.  This is what finally pushed him to fax his thoughts to my OB.  So, I am definitely not sitting on my hands.

I hope you are angry with me for being frank, but I am tired of the words doctor shopping.  They absolutely can terminate you and write inaccuracies in your records without any reprieve.  It follows you.  Today, I found a nurse practioner.  She wasn't ideal but much better than my PCP.  However, she wants all of my records.  My records contain innacuracies, untruths, and have things in them that are confidential by my standards.  I liked that this nurse practitioner saw the need for the control of pain in fms patients.

As for the Klonopin, in the states, .25 mg is considered nothing.  It is one-half of a tablet.  That is a story in and of itself.  My doctors put me on 1 mg of Klonopin 3 X daily and 10 mg of Valium 3 X daily when I had Graves'disease.  Sometimes, they raised the Valium dose to control the strong movement and symptoms from Graves.  After RAI, I slowly weaned myself to where I am at now.  It has been difficult to do so.  I also came off of the 50 mcg Duragesic patch to the 45 mg of Vicodin I am on now.  It was difficult, and I found out later that the drops I was doing because my doctor didn't help me come off of the Klonopin or Valium could have killed me.  I lucked out on that one.  I have discussed my dose of Valium with my doctor and Klonopin.  All doctors are of the opinion that this has nothing to do with those meds.  My OB said that the hormonal fluctuations are in his mind the definite cause, especially since I lack a uterus.  This causes hormonal imbalance in the body.  He also said that because I am so thin, my body does not produce estrogen from the adipose tissue or fat, I think.  I have read about this.  I am still trying to make decisions about the estrogen, and I believe I am going to try low-dose Estrogel and Testosterone at .2% compounded.  We are waiting to see if the insurance is going to pay.  I am a bit worried about what implications this has for my thyroid, but I believe that hormones are the issue.  The doctors have said that there are no tumors and Cushings is not being considered.  But they also say they aren't endos.  I have one last endo to see.  Nobody knows about these appointments.  That way there is no talking about me "doctor shopping."  As far as the pituitary, I believe that there is involvement, but it is a theory of mine.  I believe that the hypothalamus, pituitary, and adrenals are all a little out of commission, but it is nothing that is showing on the tests.  Hopefully, the hormone treatment works.  Maybe it will give my body a break and me some quality of life.

Another thing . . . I was on Klonopin .5 mg 3 X daily before any of these symptoms came on.  I was on it for 5 years.  I never had this.  I don't believe that it is related.  However, perhaps if hormonal imbalance is causing anxiety, etc., I will be able to lower the dose.  I do not think I could handle the withdrawal from those drugs right now.  I am still lowering the Klonopin slowly.  I will be off of it soon.  But my house can't turn up-side-down.  It is hard enough on the kids.  It is sad to me that they chose to use those drugs instead of something like Mirapex for the movement.  But honestly, everyone's body is different.  I think they did what they needed to for me at the time.  Valium/Klonopin are used to control rls.

I hope I don't sound abrupt, but I feel so many things right now.  I haven't even looked at the computer.  It doesn't seem necessary to me.  As for the Remeron, I wish I never started it.  It has worsened the restless legs syndrome, and it is contraindicated for restless legs syndrome as are all SSRI drugs.  I know they aren't in the same category.  My depression and anxiety are from chronic medical illness.  Before I got pregnant, I went off of everything except two benign drugs during pregnancy.  These symptoms were happening even when I was on nothing.

By the way, no one believes that the estrogen is going to affect my thyroid.  I am glad I had the heads up on that one.  If I had my way, I would have estriol compounded with lower levels of estradiol and estrone.  But I have to start somewhere.

Anyway, I do hope you are well.  To Jenipeni, I hope you and your husband are doing well.  To Jenny, I hope things are looking up for you.

Good night,

Cheryl
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Avatar universal
Dear Cheryl,

I think that jenipeni is offering very good advice. As a nursing student, she is working in medical settings. In years gone by, when I was a nurse's aide, I worked in medical settings, so I recognize the truth of what jenipeni says: Physicians are not very good at communicating/coordinating care. I suppose that we should be generous in our analysis and say that heavy workloads are part of the reason, but jenipeni was pointing in the right direction, I think, when she said "Ego?" Yes, physicians are at high risk for having inflated egos, which leads to the "No one can tell me anything" thinking (something I think becomes reflexive rather than conscious).

During the time just before and just after my hypothyroidism was diagnosed, my morale was taking a pounding from some of my experiences in medical offices. I have done much better since settling into an arrangement in which I have a rheumatologist and endocrinologist who provide most of my care. They both treat me with respect and concern, and they both listen closely to me. They know each other and think highly of each other, which cannot hurt. Then I have a primary care physician who is amazingly humble and human. She seems happy to be everyone's go-between. She orders whatever tests or procedures the other two physicians request. She also made it possible, per my request, for the results of thyroid-related lab tests (including blood sugar and blood lipids) to be released to me the instant that the results come back from the lab. I do not have to wait for my primary care physician to review the results and then release them to me.

Then I make sure that every physician has a copy of every result. I also make sure when I see one of the physicians to give him an update on what the other one said the last time I saw him. I also have learned to do lots of "Where I have been and where I am now" reminding, or at least to be ever-prepared to do that when the physician's comments tell me that a reminder is needed. As hard as a physician tries to remember the details of your difficulties by looking at your chart, it is not easy.

In short, I have learned to be my own care coordinator. Taking on that role can do several helpful things, including giving you a feeling of some control over your situation (which is far better than feeling that physicians are walking all over you while you are helpless to do anything about it).  This only works if you have a pair of physicians like mine, but it sounds as if you do. I am impressed and quite amazed that your OB/Gyn gave a lot of thought to your difficulty and also corresponded with your surgeon. (Then to spend two hours with you...that says a lot about his concern.) It is true that neither your OB/Gyn nor your surgeon is an endocrinologist, but when you have physicians who are concerned about you and willing to devote both time and thought to you, it can lead ultimately to answers even if the difficulty is not within the physicians' area of expertise.

As a next step, jenipeni's other piece of advice is very good. I was a little startled when I saw your list of medications, although during the time when you posted the list, I was a combination of too overloaded with demands at work and too cognitively fuzzy (dratted thyroid gland) to put my thoughts into words and express them. Now jenipeni has done a much better job than I would have done anyway. Regarding jenipeni's comment "By Australian standarards you are taking a very high dose of Klonopin," the same is true of the Valium you take. It seems as if a medication review would be a good idea, and as jenipeni indicated by giving you homework, you should start by carrying out your own review.

I have homework for you, too. If you did not read the comments posted to this thread by "mertoo" (at the end of January), go back and read them carefully. You might want to ask the two physicians whose concern you can count on--even though they are not endocrinologists--whether they think that Cushing's disease has been absolutely, positively ruled out. Looking at the website resources mentioned by mertoo could give you enough information to have it make sense to your physicians that you have a lingering question. I have a lingering question, after reading mertoo's comments.

Let me close by echoing two of jenipeni's comments: I hope that you will feel less alone by getting our messages. Like jenipeni, I have been logging on for a quick peek every so often, but without any time to post anything. Nevertheless, I HAVE been thinking about you, with caring and concern.

The other of jenipeni's comments I want to echo: Please be pro-active. I know how extremely hard it is to be your own advocate and fight for yourself accordingly, when you feel as unwell and discouraged as you do, but it is the only way to reach a better place, both physically and emotionally. It sounded like trite advice when it was given to me more than once in my past, and it sounds trite now, but I have learned through experience that the advice is sound.

Jenipeni, I am so sorry that your husband needed to have a filling the day before his surgery, and now you need a pricey piece of dental work yourself. What is that saying about it never rains but what it pours?! I hope that at least your husband is having a smooth post-surgical course of recovery, and I hope that your organizing project is going well. How well I remember my student years and how important it was to feel that my home life was sorted out and well organized before being swept away by the "tornado" of a new semester.

My best wishes to you both,
Jenny  

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173351 tn?1201214057
Dear Cheryl,

I am sorry your appointment with the new endo was not what you were hoping for.  

What I say next may come across quite bluntly but I don't know of a gentler way to say it.  Please just make a choice out of your current doctor's caring for you - Cut down to only one or two at the very most.  Doctors are not terribly good at communicating/co-ordinating care between other health care professionals (Ego?).  The other thing is that when you see many doctors, they begin to be a bit wary of you - thinking you could be doctor shopping.  

Besides - you will get better continuation of care seeing one regular doctor.  Your OB-GYN sounds like a good one to stick with...  hormone replacement looks promising?  Fingers crossed for you.

The new post you started has moved to page two (I think, could be page three by now?).

I have been away longer than anticipated - I had to go to our home town (3 hours drive away) to get hubby to the dentist and ended up staying 2 days instead of 1.  The day before his carpal tunnel was done he lost a filing.  I had an overdue checkup and found one of my filings had cracked so I must either get a crown or have it pulled.  It's one of my molars, and I've had a few pulled already and think I should keep this one (for chewing's sake) IF we can come up with the $1300 for the crown : (
It was nice to get away and stay with family anyway.

I don't see my gyno until March, so no more news on that front just yet.  

Cheryl, are you still taking the Remeron?  I hope you are.  If you are still on the same dose and feeling so down please see your doctor to review your dosage.  

I reviewed what medications you are taking (posted 1/21/2007).  Valium and Klonopin are both benzodiazepines (class of drug, you may be familiar with).  By Australian standarards you are taking a very high dose of Klonopin-but surely the prescribing doctor had reasons for this. Interestingly One of the adverse reactions of benzo's can be decreased libido.  Usually benzo's should only be prescribed for short periods and used with caution for someone who suffers from depression or psychotic disturbances.

I have some homework for you;
Go to:

http://www.rxlist.com/

Now look up each of the medications you take and print out the information.

I think you may find that some of your symptoms such as fever (which covers your sweats and chills) are a side effect or adverse reaction to some of your medications.

See what you think...

Anyone with chronic health conditions should have their medications reviewed by their doctor regularly - maybe it's time to do that.

I start uni again this week and with all that's happening, I am still trying to get myself organised.  We are in for some very hot weather the next few days so at least I'll be forced to stay indoors and hopefully get things done.

I hope you feel less alone by getting this message.  I have logged on for a quick peek a few times but didn't have the time to post.  Still thinking of you though.

Please be pro-active and make an appointment to review the Remeron and perhaps all your other med's too.
Remember; Tommorrow will be a new day and you can leave this one behind.
Best wishes Cheryl,
jenipeni
Helpful - 0
173351 tn?1201214057
Dear Cheryl,

I am sorry your appointment with the new endo was not what you were hoping for.  

What I say next may come across quite bluntly but I don't know of a gentler way to say it.  Please just make a choice out of your current doctor's caring for you - Cut down to only one or two at the very most.  Doctors are not terribly good at communicating/co-ordinating care between other health care professionals (Ego?).  The other thing is that when you see many doctors, they begin to be a bit wary of you - thinking you could be doctor shopping.  

Besides - you will get better continuation of care seeing one regular doctor.  Your OB-GYN sounds like a good one to stick with...  hormone replacement looks promising?  Fingers crossed for you.

The new post you started has moved to page two (I think, could be page three by now?).

I have been away longer than anticipated - I had to go to our home town (3 hours drive away) to get hubby to the dentist and ended up staying 2 days instead of 1.  The day before his carpal tunnel was done he lost a filing.  I had an overdue checkup and found one of my filings had cracked so I must either get a crown or have it pulled.  It's one of my molars, and I've had a few pulled already and think I should keep this one (for chewing's sake) IF we can come up with the $1300 for the crown : (
It was nice to get away and stay with family anyway.

I don't see my gyno until March, so no more news on that front just yet.  

Cheryl, are you still taking the Remeron?  I hope you are.  If you are still on the same dose and feeling so down please see your doctor to review your dosage.  

I reviewed what medications you are taking (posted 1/21/2007).  Valium and Klonopin are both benzodiazepines (class of drug, you may be familiar with).  By Australian standarards you are taking a very high dose of Klonopin-but surely the prescribing doctor had reasons for this. Interestingly One of the adverse reactions of benzo's can be decreased libido.  Usually benzo's should only be prescribed for short periods and used with caution for someone who suffers from depression or psychotic disturbances.

I have some homework for you;
Go to:

http://www.rxlist.com/

Now look up each of the medications you take and print out the information.

I think you may find that some of your symptoms such as fever (which covers your sweats and chills) are a side effect or adverse reaction to some of your medications.

See what you think...

Anyone with chronic health conditions should have their medications reviewed by their doctor regularly - maybe it's time to do that.

I start uni again this week and with all that's happening, I am still trying to get myself organised.  We are in for some very hot weather the next few days so at least I'll be forced to stay indoors and hopefully get things done.

I hope you feel less alone by getting this message.  I have logged on for a quick peek a few times but didn't have the time to post.  Still thinking of you though.

Please be pro-active and make an appointment to review the Remeron and perhaps all your other med's too.
Remember; Tommorrow will be a new day and you can leave this one behind.
Best wishes Cheryl,
jenipeni
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Avatar universal
Well,

Long story short, this endo is definitely not going to be helpful.  She came right out and told me that she did not see what she could do about my sweats with chills, seemed to think everything was fine based on my labs and mainly TSH.  She also said that she didn't see where she could help with hormone (female hormone) replacement.  This is a short version of the appointment.

I have been extremely upset, and that is putting it mildly, before and after that appointment.  I have been hanging in there for a long time, but I really feel that if this is the life I have to look forward to, I am not strong enough for it.  I called my OB-GYN.  After a lot of thought and correspondence with my surgeon, he believes that I might be going into ovarian failure.  He says that my testosterone is definitely low and my estrogen is particularly low for someone who is 36.  Now the decision is how to replace.  There is a lot more to this.  I was in his office for almost 2 hours talking with him.  He was at least concerned and had put thought into this.

Where I am right now is in a place I have never found myself.  I couldn't find the area where I started a new post, so I thought I would post here.

I might not be around.  I haven't cared about much of anything lately.  I have appreciated having the support I was able to get.  At the end of the day, I feel so alone.

I do hope you all are doing well.

Cheryl
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Avatar universal
Hi there,

I have to read your post with a more fresh mind.  It is clear to me that testosterone (low) is involved at this point.  What I worry about is adequate replacement.  Less is known about Testosterone replacement in women.

I undestand not always being able to be available.  With my kids, I also, will be more busy.

It is frustrating to not have an answer, but the testosterone did show through.  In addition, vasomotor symtoms are associated with female hormone problems.  My absence of libido and aversion to sex go along with the testosterone issue.  

I want to write more, but I am tired.  If I get you right Jenny, as estrogen goes up, this TBG also does.  What I am taking from it is that your thyroid hormone binds and so you have less active hormone (free T4).  I wonder if simple fluctuations in my body could be causing the same reaction.  It would explain the ups and downs.  I would be interested to see what Jenipeni thinks about low testosterone.  I know you aren't a doctor, so I am not pressuring you, but sometimes a thought helps in ways we don't expect.

I am thinking of both of you and hope wellness will reach all of us.

I will try to write more tomorrow.  I will check off and on for you guys.  Thanks for the kind words, thought out writing, and good vibes for the new endo appt.

I moved this thread and I hope you will notice it.  It is on page 1.  I have difficulty finding our thread at this time.
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Avatar universal
Dear Cheryl & jenipeni,

I feel the same way jenipeni does when she looks at Cheryl
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Avatar universal
Hi,

Well, after much waiting for a call back from my gynecologist (since January 27th), I heard from him tonight.  He said that my testosterone levels were low.  From what I remember, that is opposite what Jenipeni is experiencing.  I wondered if this could account for all of the symptoms or just some.

I had a friend that had a problem where her body was converting estrogen into estrogen.  I wondered if somehow there could be a connection between these two hormones.  I know nothing about this.  But I wondered if my testerone is low, could there be any interrelationship with estrogen levels going up and down.

Anyway, the gynecologist wanted an endo to deal with the testosterone issue.  I told him that I did not yet have one, which is absolutely true, and that I wanted to start some sort of replacement if it were necessary.  I am hoping everything goes well with the new endo and I do have a back-up.  My gynecologist appeared concerned not so much with my recent breast imaging, but with that from 2 years ago showing a dialated duct.  He, however, wanted to defer to his colleague, my surgeon.  Perhaps some answers will be found.

I asked about estrogen, and he did say that the ups and downs in temperature can produce the temperature regulation problems--one minute hot and the next sweating and then chills.

I am praying for some answers that will lead to solutions.

By the way Jenipeni, the only reason I wanted anyone to look at some of my radiological reports is because I didn't understand some of the wording.  It was more of a definition thing.  I hope I didn't make you feel uncomfortable.

I am going to move this thread.  It will be called Needing advice and some response, but I am restarting it.  It has become to difficult for me to locate it.  

I hope you are both feeling okay and hope to hear from you.

Cheryl
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Avatar universal
Hi,

Really short note.  I understand you not being able to look over the diagnostic reports Jenipeni.  I hope everything goes well with your husband's surgery and your endeavors.

I will try to be in touch again.  I am glad you understand my frustration in wanting to know what is wrong.  

I will keep an eye out for you.

Any thoughts on how to approach the new doc with all the normal tests but awful symptoms.  Hi to both of you and I hope you are feeling okay.  Anything new with you Jenipeni?  The tests?  


Thanks and thinking of both of you.

Cheryl
Helpful - 0
173351 tn?1201214057
Hi Cheryl & Jenny
Firstly thank-you both for the confidence you have in me - but all I have done is pass on information that others have written and researched.  I don't think I can offer assitance with your radiologic reports/test results Cheryl- as a nurse we aren't taught diagnoses and it is not an area I have had any experience in. Sorry.

Cheryl I empathise with you that while you don't want terrible news from your test results, you still want to know what's going on so it can be fixed.

Next week my hubby is having a carpal tunnel op and the week after I am back at uni.  Being my final year there will be a lot of stress and a huge workload, I must start studying now.  So there are busy times ahead and I have to plan on scaling down my time on the forum.  

In no way will this be my last post or anything but I just won't be around very often.  I'm sure you'll both understand.

I wish you both happiness and health!
jenipeni




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Avatar universal
One more quick note.  You mentioned a Law of LaPlace.  Is there a link you can lead me to for that.  I want to research a bit more.  This seems logical to me and I wonder if there could be a connection for me if my estrogen is fluctuating especially in an abnormal pattern.  I got too many hits when I searched and I am looking for that info specifically.

Hope you are well.

Cheryl
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Avatar universal
Hi guys,

Well, the results are in and no tumors were found on either the pituitary, adrenals, or any gland.

With respect the my breasts, the right breast shows non-clustering microcalcifications with a rounded appearance.  There are also multiple cysts and microcysts in the right breast.  My mom is a breast cancer survivor and I am a little worried even though the radiologist said everything was fine.  Three years before my mom's breast was removed, she also had something show up on her mammogram, a microcalcification--just one.  They said everything was fine.  They watched her every three years and the cancer had grown in the exact same spot that was fine until one doctor said (as three were arguing), "This is cancer."  It is with this in mind that I want further studies of my breast done.  Two procedures-a ductogram and ductal lavage-should be considered in my opinion.  The notes from my mammogram say that because of the density of my breast tissue, it is possible a lesion could be present.  I am aware that there are radiologic studies, and I believe, gamma ray breast imaging was mentioned.  But I am not sure about the last one.  I want my mom to come in with me to discuss this.  I feel like the doctors think I am having fun with this.  I don't want to avoid a procedure because it is painful.  My mom was in pain for 6 months after they missed her cancer, which grew rapidly in the presence of estrogen.  Then, they had to put her on Tomoxifen for five years putting her through chemically-induced menopause.  She can never take estrogen again.

I love my surgeon, and I am thrilled that no tumors were found.  I don't want that.  But something is going on with me.  I am afraid to start estrogen until an endocrinologist has been brought into the picture.  I see one on February 14.  My OB-GYN has not called me with the results of the female hormone panel despite a couple of calls.  I requested my records and I hope they will be here soon.  My surgeon thinks that I might need some estrogen, perhaps in the form of cream.  I gave him what I showed you guys, because he asked me if I wanted him to call my OB-GYN.  I wanted him to have all of the symptoms.  What is weird is that my OB-GYN did not want to give me hormones and felt that they had nothing to do with my problems.  I have a lot of respect for him also.  I don't agree with everything he says, but who does.  We are people.  I have to believe that he thinks something is up in the endo system.  But you know, the last endo I saw told me that none of the symptoms I was experiencing had anything to do with the endo system.  He is full of ****, but you can see why I didn't go back.

The 24 hour cortisol with VMA came back within normal range.  My prolactin also did.  On a side note, I went to see my psychiatrist.  She is not my favorite, but I wanted to know what she thought of the breast milk production and lack of sex drive.  I told her my prolactin was normal.  She told me that, in her opinion, if I am leaking breast milk, prolactin is too high for me.  She said that my body has always been a little different when it came to everything.  But this prolactin was really low.  I asked her how she would treat it if she were going to.  She said she would prescribe Bromocriptine (think I spelled that right).  Below are the results that my doctor was "happy to report."

ACTH, ARUP    19 pg/mL   range (6-58)
Prolactin     3.8 ng/mL  range (2.8-29.2)

I am frustrated and yes depressed now, because I hoped that something would give me some answers.  It reminds me of this Plymouth Reliant I had.  Every time I took it to the mechanic and they hooked it up to diagnostic machines, everything came back normal.  After several frustrating events, it happened on my way out of the lot one day.  I went back and asked if everything was normal.  The mechanic laughed and said no.  They have felt, seen, and heard the symptoms.

I believe the chances of tumors in the brain or adrenals are not likely, but what I wonder is if there can still be a problem, but it just is in its infancy stages so to speak.

By the way, thanks for the explanation Jenny.  That is what I thought you meant.  I knew about the binding.  It apparantly is also important that people have proper ferritin levels, but not to take them near to the time of taking thyroid replacement.  I am considering asking the new endo if she will try T3 with my T4 in a low dose.  A lot of people have had success with this.  Something is messed up with the Hypothalamus/Pituitary/Adrenal Axis.  I know my thyroid meds are not optimal, despite normal reads.  The reason is that when I made the minor adjustments, I noticed a gradual improvement, reduction in sweating, increased functioning, and lower discharge from the breast.  Not to mention that I have been able to interact with my kids.  

I am down though.  Again, I don't want tumors.  I want answers.  They didn't listen to me before any of the surgeries that I needed. I ended up with a gallbladder the size of my liver with a thick skin on it.  The last stone (it was filled with them) got caught in the common duct.  This caused the surgery to be over 2 hours long, instead of the normal 45 minutes.  The had to make an incision to allow the last stone to pass out of the common duct.  I was lucky I didn't have to get the long cut.  Another doctor beleived me and sent me to the ER.  I was breastfeeding twins at this time.  I had experienced over 9 attacks, but all of the doctors were dismissive even though almost everyone in my family has lost their gallbladder.  Twin pregnancy and pregnancy increase the chance of this problem as well as thyroid disease.  With my history and symptoms, lots of things should have been caught.  But I just want a life now.  I want to feel the way I felt much of the last week.

There is a lot more I want to post on here, but not tonight.

To Jenipeni, it is interesting about the iodine therapy for the breasts.  It has been around awhile.  I feel for you with the difficulty in wanting children, but not feeling ready.  The only thing I can tell you is I went through a lot of fertility procedures.  If someone had told me that this is how sick I was going to become, I would have had my sister carry the baby.  I did want to say that you should not feel like you have to start tomorrow.  Yes, it is true that women have more difficulty after 35.  But health issues can also cause problems as in my case.  So, try to give yourself some room.

I am going to post more about the radiologic reports, but I am also making the daring move of posting my email address.  I get a little lost on this site.  There is also the option of using about.com's site.  It has more options, but it can be confusing as well.  Here it goes.  My email address is ***@****.  I know I am not supposed to do that, but I am taking the risk.  My depression is bad and I don't always have the energy to get on here and search around.  Also, I would like to scan in all of my reports and labs and possibly let others take a look, specifically you Jenipeni, since you are going into the medical field.  But I also would be interested in anyone, like Jenny, who is very intelligent and possibly knows more than the doctors.  I mean that.

Be in touch at least on the board.

You are in my thoughts,
Cheryl
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173351 tn?1201214057
Hi Cheryl and Jenny

Just a quick note (I only have 10 minutes) I've been a bit quiet because my CT results are not definative - I have uterine fibroids and mildly enlarged ovaries BUT on a positive note everything else appears normal.  That is apart from the high testosterone and cortisol.  More tests are required but the GP is handballing me on the gynecologist.  He suspects PCOS but the diferential diagnosis is possibly Cushing's.

Uterine fibroids are associated with decreased fertility - as is PCOS!  Don't really want Cushing's either! Blah!!!

When discussing all this with hubby, he suggested that we should possibly start trying for a family sooner than planned.  There may be sense in his suggestion, and fertility does naturally decreased past the age of 35 (in women).  BUT I don't feel ready for kids yet - my health is not as good as it should be for one and I want to finish my degree and work a couple of years first!!!

Anyway when served with lemons, make lemonade!  I'll just have to use it as extra motivation to try and shift the extra 25kgs I'm carrying around :(
I just wish I had more energy to do this... I hate being this heavy, until 4-5 years ago I had always been very slim.

This is all getting me a bit down - there's no proper diagnosis yet and it's all unfinished business hanging around.  It gives me empathy for your situation Cheryl - though I havn't nearly been through all that you have.

Jenny, I totally agree with your take on the estrogen thing.  And when you think about it - it shouldn't matter whether you have a functioning thyroid or not because the medication compensates for that.  

Time's up - gotta go or I won't make it to my accupuncture appointment on time.  I think it is helping some - but couldn't be 100% sure.  This might be the last time because I can't really afford it and work didn't give me any hours next week (there was a misunderstanding, I'm not in trouble).

Oh by the way - I must make an apology to you guys.  I made a mistake as I was unaware - iodine is actually being widely researched with the link to fibrocystic breast disease.  Very interesting don't you think?

Really gotta go now...
Hope you are both well.
Jenipeni



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