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Old 10-02-2012, 07:59 PM   #1
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Thyroid fluctuations

Boy if it's not one thing it's another. Seems I'm posting about something somewhere on these boards with new ailments cropping up.

For the last five months now, my thyroid has been fluctuating. I have had hypothyroid for years and it was managed with Levo. I hadn't been feeling well and during a routine yearly CBC-plus (thyroid, vit,hormone check), I was extremely HYPO thyroid. I went from 0.137 mcg, down to 77, I think something in the 70, then they checked again and I was just a little off, being a 5.7. Well so I was put on 0.088. They checked me again and I was extremely HYPER again. Now I'm getting 0.0100 mcg. This is driving me nuts. These wild fluctuations are making me ILL and causing a HUGE amount of stress on top of other illnesses I'm dealing with.

The ONLY check my TSH levels, and that makes me SO mad. I've asked them to check ALL of it. I have been doing some research (my thyroid now is enlarged and can be felt on palpation and seen slightly), and found that Hashi's acts just like this.

I'm going in for a thyroid ultrasound tomorrow. When I researched that and the reasons for it, it doesn't make sense because it would NOT show anything but nodules or an enlarged thyroid, which we already know is enlarged. I need blood work. so to aggravate my doctor further, I have made yet ANOTHER appt. tomorrow to talk with her about my thyroid. BLOOD WORK FOR HASHI'S PLEASE.

I do not mess around with thyroid. How can you explain to people how MESSED UP you feel when your thyroid is so OFF? Not only am I dealing with cervical canal stenosis and cord compression and an upcoming surgery, but now this. I don't think they would dare do the surgery until my thyroid is stable.

Can any of you share your experiences with fluctuations and if it turned out to be hashi's? I had an ANA panel this past year. It was positive, then it was negative when they did it again. Is this the test done to indicate Hashi's?

I'm frustrated that the stuff I'm dealing with seems to be things that are vague. I have trouble validating myself, telling myself I'm not sick, it's all in my head. when I went into the doc yesterday, just for a med refill, this is when my blood results were read. I also had an elevated white count, indicative of infection or bacterial and was running a low grade fever.

I have long suspected that I have autoimmune of some sort that just hasn't presented itself in all its glory. They have me labeled as "unspecified autoimmune" because no one can figure it out.

Anyway, thanks for letting me vent and I'd appreciate anyone sharing who has had this experience.

Thank you!

 
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lisa789 (10-03-2012)
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Old 10-03-2012, 01:16 PM   #2
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Re: Thyroid fluctuations

I'm sorry you're struggling like this! hugs

Do you thinkyou can somehow convince your doctor to test anything else but TSH only? if not, are you in the possibility to consult another doctor? I'm sorry but I don't think a doctor who goes by TSH only will get you to achieve wellness again.

if you do get your doctor to do the proper tests, you'd want to have tested:
- TSH (which he/she already does)
-FT4 and FT3 (the 'F' stands for free and you want to make sure you have the 'free' done and not the 'total')
- hashi's antibodies: being antiTPO and antithyroglobuline
(no ana)

As you might know TSH is thyroid stimulating hormone, produced by the pituitary gland and not an actual thyroid hormone. FT4 and FT3 are the actual thyroid hormones, when those drop too low for the body's needs those will cause symptoms of hypoT. TSH can be influenced by several factors and does not give sufficient information alone to decide on thyroidstatus, let alone to properly dose.

hang in there!

 
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Old 10-03-2012, 02:32 PM   #3
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Re: Thyroid fluctuations

Lisa,

Thank you sooooooooooo much. I have a doctor's appt. in about an hour for a thyroid discussion. This information is important for me to know and I will definitely insist upon it!

Bless you!!

 
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Old 10-03-2012, 02:36 PM   #4
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Re: Thyroid fluctuations

happy to help where i can.

good luck at the doctor and keep us informed.

Another thing that crosses my mind you want to make sure you don't take your thyroid medication before blood testing ( 6-8 hours away) since it can falsely influence the results.


 
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Old 10-03-2012, 02:39 PM   #5
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Re: Thyroid fluctuations

something else I noticenot all that important for this consultation but such things are good to know) you write I was just a little off, being a 5.7.
No you weren't, as said 1) TSH does not give sufficient information
2) the reference ranges for TSH are too broad, so you were little off the reference ranges that might be true but healthy people will have a TSH around 1, looking at it like that you still were quite a bit off.


 
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Old 10-03-2012, 05:03 PM   #6
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Kay1963 HB User
Re: Thyroid fluctuations

Quote:
Originally Posted by lisa789 View Post
something else I noticenot all that important for this consultation but such things are good to know) you write I was just a little off, being a 5.7.
No you weren't, as said 1) TSH does not give sufficient information
2) the reference ranges for TSH are too broad, so you were little off the reference ranges that might be true but healthy people will have a TSH around 1, looking at it like that you still were quite a bit off.

Lisa, I can't tell you how much I appreciate the info you gave me! It was INVALUABLE to me. So i had the ultrasound done this afternoon. I have an enlarged thyroid (goiter) but don't know about nodules yet. The right side is tender upon palpation.

I requested (i wrote down the specific tests you shared) and my doctor told me, "You know this won't make a difference because we will still treat it the same"...uhhhhh, SO??? I want to know if this is what I have! UGH!

She said if the ultrasound comes back abnormal, they would send me to a specialist. If goiter shows up on an ultrasound, would that be enough to send me to a specialist? I'm very frustrated with this up and down with my thyroid and it's seriously affecting my quality of life. I've been running a fever for a few days now. No infections not exposed to anyone being sick. Is this part of Hashi's? She said that my symptoms ARE very indicative of Hashi's.

Thank you so much, Lisa for sharing that very important info. I would not have known what to ask if you'd not shared that. Now that that test is done, we shall see what happens.

BTW, my white count was high too. Indicative of infection or bacterial stuff, but WHAT? If you have an autoimmune, can your white count be high if you're flaring in some way?

Thanks SO MUCH again!

 
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