ADVICE? PLEASE!...NEW "Thyroid Issue"

I have been sick for a couple of years now. I was Dx with Mastocytosis a couple of yrs. ago.A few months ago,I noticed some new symptoms that seemed unrelated(?). Sudden weight gain,hair falling out/turning gray literally overnight,night sweats,Constant flushing(different with flushing that comes with Masto. I can usually control that w/ histamine blockers. This NEVER stops!extreme fatigue and weakness, Depression, and a lump in the front of my neck,that seemed to bother me when I would lay on the opposite side,hold my head down,or sideways(like to pick something up)Hurts up into my jaw and ear.. I was at my yearly gyno appt. My Dr. noticed,thought my thyroid looked and felt enlarged. Long story,short,Ive had labs,Ultra sound,CT w/contrast,and Thyroid Scan w/ radioactive iodine. I have a multi-nodular goiter. We a have a surgeon friend,that I went straight to,bc my Gyno felt like I didnt need to wait 2 mos. or so to have to see an Endo. I totally trust my surgeon(he actually discoverd the Masto,when my GI had said my biopsy was normal(it wasnt)) and he did my Gallbladder surgery. The nurse called on Fri. to say that he said,everything was normal(???)No plans for any sort of treatment at this time. My labs,my scans etc. HOW?! Can someone PLEASE help me understand WHY I feel sooo horrible then? I mean,I understand that if on the scan,the nodules didnt indicate cancer,and that my thyroid looked to be functioning normally, but having a multi-nodular Goiter(I think there are like 6 nodules) on your thyroid,isnt suppose to be there! I asked the nurse if I should see an Endo now? She said she would talk to him and let me know today. Im just so miserable and frustrated!!! and hope and pray that someone out there can shed some light on this,give me some advice through their own experience,just anything at this point would be appreciated. Thanks in advance. (( :

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Hi, im so sorry about what you are going through. You probably have a copper imbalance. Masto causes thyroid and adrenal issues to to too much cortisol. Please keep that and mind, and read my post, and let me know if I can help in any way.

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HAVE THEY DONE A TSH LAB TEST TO SEE IF YOU HAVE HYPOTHYROIDISM. IF NOT GET THEM TO DO THAT, IT IS EASILY MANAGED WITH A PILL ONCE A DAY AND IT WOULD EXPLAIN ALL YOUR SYMPTOMS. I GO THROUGH THIS EVERYDAY AND TAKE SYNTHROID.

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Yes, Ive had the labs 2x. Said they were normal? Im just so frustrated bc I feel Horrible! I seem to be becoming more symptomatic .

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WHEN WAS THE LAST TIME YOU HAD THEM CHECKED THIS IS ONE THAT CAN CHANGE EVERY 6 MONTHS.

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Feb,March and April,(2 wks ago). My Gyno who found the Goiter and ordered the ultrasound,said it felt enlarged,and then when he got the US results,he went over the report with me,and said then that it was enlarged and that he was concerned about the nodules.(Im so mad at myself for not getting a copy bc I dont remember the dimensions etc.) I had my next tests backwards(not to waste any time,having to wait a month or so from the CT to the Thyroid scan) so, I had the Thyroid scan w/ RAI,then the CT with contrast. NORMAL....NORMAL?! "your thyroid is not enlarged,and these nodules are tiny,nothing to worry about" I,like you feel the frustration.All I know is I feel Horrible. Nothing has changed. My thing is;Its not suppose to be there, and obviously its doing something to my body. My question is; are there really cases where it just goes away, and back to normal? That makes no sense to me.....

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I also have been "dealing" with a multi nodular goiter. There are guidelines (size of nodules) that recommend when to have them biopsied. I have had FNA (fine needle aspiration) biopsies done 3 times over the past 2.5 years - all have come back "no evidence of cancer". Both my primary doctor and endo crinologist say not to worry about them - unless they start to grow again or the thyroid gland enlarges to a point that it may interfere with swallowing. My TSH blood work is all within "normal" guidelines. Still very worrisome to me... I recommend that you get a copy of the ultra sound report , just in case you want to go get another opinion. I have a copy of all my ultra sound and FNA results... just in case... let me know if you haVe any other questions or concerns... I may be able to help or at least be a sounding board for your concerns...

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I had a multinodular goiter for years and all my labs were normal, however the uptake scan showed that the tyroid was taking up too much iodine, meaning hyperthyroidism. I just had things monitored for a long time ( even though some of my nodules were quite large) but, I had no symptoms and my lab values were normal. Suddenly a golf ball sized nodule which was painful popped up and my levels bacame extremely hyperthyroid. FNA was normal but due to size and number of nodules I had a total thyroidectomy in October. I became extremely hypothyroid after surgery, having exactly the symptoms you are having, along with aching legs and anxiety. One of my doctors recently told me that they are always behind the ball by about 6 mos. with thyroid issues. He explained that he had a patient that came in with your complaints but TSH was normal. Six months later same patient returned, and labs showed severe hypothyroidism. It's possible that you are subclinically hypothyroid, but with your symptoms my guess is that you will see a change in your TSH. Depending on what your numbers are, because there is a range with TSH, you may get a doctor to try a very low dose of synthroid to see if it helps.

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Happy2bhappy and lash 56,
Thank you so much for replying. Your experiences have eased my anxiety some. Things were not explained to me at all. Just a call from the nurse to say "everythings normal". Ive just been hanging. She called back this morning to say that he was going to refer me to an Endo,but needed a reason(?) What?! She said that the Thyroid scan and CT ordered by my surgeon were normal,that they didnt show anything! My Gyno ordered the US first and went over the report with me,that stated that I have a multi-nodular goiter,etc. These tests were just a couple of weeks apart. I dont understand. She is suppose to call this afternoon with the Endo appt. after she gets a copy of the ultrasound. Hopefully I will have some Clarity soon. I just know I feel horrible. The flushed/sweaty feeling, achy legs and depression are just the worst! Thank you all again for your input. (( :

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Make sure a TPO antigen test is done. TSH should be below 3.0 and no lower than .5. Long story short, one can't dx Hashimoto's with a TSH. Google Mary Shomon

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Mine didn't get real attention until I had to move it to the side in order to swallow. Then an endo appt - took 3 months even with Dr referral. I was, by then, extremely hyper and dx'd with Graves disease. Still under treatment of the endo 2.5 years later.

Take care and don't worry so much. Things will manifest when they do. Thyroids are ver variable.

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Tinks hope,
Thanks. I have an Endo appt. next week actually. Once I have that,Im sure it will ease my mind some. Its just that I have never felt so bad,on top of the already miserable symptoms I have with Masto. This has just magnified those. Im just ready to feel better. It always does help to hear of others experiences. Thank you for posting. (( :

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Hi, I am sorry you feel so bad!! I have alot of the same issues! First, have they drawn a T3 & T4? My TSH was normal but one of those numbers was abnormal & I WAS hypothyroid!! Secondly, I have fibromyalgia with Chronic Fatigue. If you look up fibromyalgia and read about it you will find that there are always other diseases that go with it. From Chronic fatigue to hypothyroid to insomnia, irritability, depression, IBS-irritable bowel syndrome & so forth! When I went on medicine for hypothyroid I never felt better I guess because of the chronic fatigue. Hormones are usually out of wack too. I have estrogen dominance, which means I have too much estrogen & too little progesterone. Medical doctors will tell you your levels are normal but if you see a preventative wellness dr or chiropracter they will tell you if you have symptoms you have it. Every person is different. You could be on the low side of normal and feel like hell!! Another hormone I was very deficient in is D-hea. This is a hormone we all have but after a certain age it goes down. My medical doctor told me it was normal but when I took the results to my chiropracter who was trying to help me, he said it was so low he didnt know how I could be going to work and just even functioning. Medical doctors are of course needed but they aren't trained in trying to prevent or fix something with supplements. They just want to give you a synthetic pharmaceutical made pill & say bye bye. So lets say you need progesterone, the best is to go with natural not synthetic. You can also on your own go to a healthfood store & buy progesterone cream. It is the best absorbed anyway, use it as directed, but I treated as I had symptoms, & I was so low alot of times I had to use it everyday. I bet you will notice the sweats decreasing!! I hope some of this helps!!! God Bless You!!! And I hope you feel better. Oh another thing you can be deficient in which affects the thyroid is iodine-iodide. Another thing our body loses alot of as we get older, but in females our breasts use up a lot of it & I think I read that the parathyroid needs it to function well also. If we all just had a million dollars & could afford all the supplements we would all be ok. But as I have found since we are no where near being wealthy, I have to stay sick! Really, only people with money get to feel well, they can afford it. But somebody has to keep the hospitals busy!! Another one of my pet peeves! Good Luck!!

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Very informative on the subject of thyroid issues:

http://www.peoplespharmacy.com/2012/04/14/853-thyroid-controversies/

Almost same in ITunes podcast:

http://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=268003768

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Hi catpurr,

They need to do the blood test for thyroid pyroxidase antibody levels hun. They havent done it. they have done everything else hun. its the test for hashimotos thyroididtis hun ad needs doing.

many many hugs
jose

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I'm right with you with that. I'm just ready to feel better.

Good Luck, my first endo appt - he was able to dx it the same day which eased my mind considerably.

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I agree that you need a test for thyroid antibodies (TPO and anti Tg). wishing you good luck.

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There Have been a couple of things no one has mentioned in this con'vo. Raw broccoli, strawberries, and peaches can halt or slow your thyroid. Vitamin D3 is essential to the thyroid as is iodine. I am having issues, too. These are things I am learning in my research.

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Call the doctor who did the original test. Get them to mail you a copy of those results. Or go to the office and get a copy. It is still sitting in your file there. Keep a paper trail by asking for copies of everything from now on.

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