Author Topic: How do you feel when you thyroid is out of whack?  (Read 2625 times)

Julie

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How do you feel when you thyroid is out of whack?
« on: September 10, 2010, 08:41:18 PM »
I've Googled and pulled up the archives on here that were posts about thyroid problems, etc.  but, I still am not really finding answers to what I am wondering. 
Other than the standard list of symptoms for a thyroid that is not functioning correctly and people saying they just didn't feel well..or feel right.....can you tell me specifics of what you experienced? 

I recently picked up a report from the E.R. that is 2 yrs old.  It was a CT of chest to check my lungs, BUT it also mentions that I have multiple thyroid nodules.  No one ever told me!!  Two years ago, I also had elevated thyroid antibodies too, but the other thyroid labs were in the normal range.  Last year however, the antibody labs were back in the normal range.  This year, when I went to meet the surgeon for gallbladder consult, he felt my throat and says, "you have an enlarged thyroid.  that may have to come out..Hashimotos goes along with Sjogrens."  That was news to me too! 

Now I am wondering ...are some of the symptoms I am having due to my thyroid function, when all along I just have always chalked it up to being the dryness from Sjogrens? 

Specifically, I am wondering if any of you that had enlarged thyroids found swallowing more difficult and if so, did that improve once you started the medication?   How about breathing? Is it any more difficult?  Many times I feel like a wind pipe is being cut off on the right side in my throat with regular breathing. If I press even lightly on my throat, I cough.  It feels like a lot of the mucus gets trapped right there too.
Have you ever had a sore throat that doesn't get worse, it just remains an irritated feeling back in your tonsils and up into the roof of your mouth?  I have it constantly..but just on the right side.  My sinuses seem to be plugged up all the time too...so I don't know if the thyroid can create problems that far up OR maybe it's just that my sinuses are irritating my throat?

I saw the rheumatologist this week and told her I want the thyroid checked out.  She gave me the number to an endocrinologist, so I need to set that appt up, but in the meantime, it would be great to hear back from those of you willing to share your stories.

Thank you!
Julie   


Carebear

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Re: How do you feel when you thyroid is out of whack?
« Reply #1 on: September 10, 2010, 09:18:37 PM »
Hi Julie,

Oh yes, the thyroid gland...shaped like a butterfly yet can sting you like a bee! ;D

This is what I can remember from 30 years ago:

Sore throat, slightly to the right of center.
No energy.  I had to take a nap half way through making up the bed!
Periods where I was manic.  And I couldn't complete anything I started. (think of the Tasmanian Devil)
I felt cold yet my skin was burning up.
Weight gain.
Dry hair.
Dry skin.
Brittle nails.
Periods of insomnia, depression, anxiety.

Once I had been on the thyroid hormone for about four weeks, things were fine.  It took several months to get it completely balanced though. 

That was my experience. :-\

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Seizures, Cervical Stenosis.

Plaquenil, Synthroid, Restasis, Methotrexate injections, Keppra.

Patze

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Re: How do you feel when you thyroid is out of whack?
« Reply #2 on: September 10, 2010, 09:35:09 PM »
Hi Julie,

If I don't take my thyroid meds everyday at the same time for a long period of time, the brain fog will worsen, the weight starts to mount, I ache more, my thyroid starts to grow again, and a host of other things (including my hair becoming straw again, my finger/toe nails start to flake).

I also have nodules frequently even when taking the meds as directed so I don't know if it's related to anything or not.  Hopefully someone more experienced will stop by and pass on some information.  By doing a biopsy on a nodule is how it was discovered that I have Hashimoto's as I had (and still have) sero negative blood work.  By chance, what med are you on for your thyroid?

Take care of yourself -

Patze
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SLEEPY101

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Re: How do you feel when you thyroid is out of whack?
« Reply #3 on: September 10, 2010, 09:55:58 PM »
I don't hav nodules but thyroid diagnosed from damaged. My Endrocrinolgist told me that sometimes radiologists mistake nodules for tyroid damage.

When my Tyroid was very low and out of control,

I had extreme fatigue and brain fog and weight gain

I know some Pt's have a fast heart beat and conplain of extreme moodiness. I haven't experinced that yet.

My Dr said that because the symtpoms are mimic Fibro and Sjogrens I might not be able the tell that the tyroid is causing the symptoms

Joint pain and stiffness,sensitive to cold weather,fatigue,dry skin

I do have a lot of swelling and pain in the Thyroid area.

irish

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Re: How do you feel when you thyroid is out of whack?
« Reply #4 on: September 10, 2010, 10:37:41 PM »
Prior to being diagnosed with thyroid disease back in mid 80's, I had the sweats, the dry hair, insomnia, agitation and the front of my neck hurt so bad. I would go to bed with a hot water bottle on my neck every night. Doctors didn't have a clue---and no one checked my thyroid.

When we moved out of state I was having perimenopausal problems and went to the doctor---this guy checked my thyroid and I had a TSH of 9.8.I would never have guessed it. They kept telling me I had reflux (ENT's ) when they scoped me. Here I was having autoimmune swelling and redness in the throat and larynx. Years later when I had a TSH of 12+ I had depression, agitation, crying, just feelt horrible--change in med and soon felt better.

A few years later I was aching so badly in muscles and joints and hips hurt so badly I could hardly walk and stair were almost impossible. I was exhausted and felt horrible in general. Had my scheduled TSH and it was 14+. That was what was causing all those symptoms. In a couple of weeks I was feeling much better after a med increase.

This summer I have had increase in depression, weakness, agitation, bad, bad insomnia, irritability, palpations, etc This just snuck up on me and just had my TSH checked a couple of weeks ago and it was .14 which is below normal. I do best when I keep the TSH between 2.0 and 3.0 and when I see my doc he is going to find out that never again do I want this to happen. I have felt that I was being overdosed and TSH was .9 in Dec which was "normal" according the the charts.

I have extremely high thyroid antibodies that are so high they are off the chart according to my doc. I am slowly learning that this Hashimotos is something to be reckoned with. I skipped my medication for 4 days before starting my lower dose and I do not know when I am going to feel better. All I can say is that I think one feels better faster when they get to increase their dose. I think that when you become hyperthyroid from too high a dose it takes longer for your system to adjust.

There is a good site called:  http://www.thyroid.com
Lost of information on their. Also, I think that the nodules need to be watched and occasionally biopsied. Thyroid nodules can become cancerous. irish ;D

cmclien

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Re: How do you feel when you thyroid is out of whack?
« Reply #5 on: September 10, 2010, 10:45:32 PM »
Hi Julie,

I have hashimotos and nodules, was diagnosed about 2 years ago even though my thyroid was functioning sub-par but functioning.  My TSH was about 4.0 which under the new diagnostic criteria should be in the range between .3 and 3.0. 

Symptoms?  I yawned all the time, complained alot about being tired, I was always saying to my hubby, I am so tired, he got TIRED of hearing it :)
I felt like I was losing alot of hair though I have alot of hair to begin with but more then normal.  I felt dry but I always have felt dry.  I thought my skin had a weird look to it, I kept looking in the mirror and thinking I looked kinda jaundiced which I read after the fact is in fact a symptom, yellowing of the skin, I was cold all the time.  My throat was sore almost all the time just like you said, even on the right side too and congested.  But I'm still congested all the time, my throat isn't as bad anymore.  Mine wasn't enlarged when they palpitated it like yours is so that probably explains why you feel like your windpipe is being cut off, because it probably is.
When you look at the symptoms they can really overlap with SJS.

I had a hard time getting my doctors to take me seriously, finally a new GP felt it was too high (new range) and then did the blood antibody test.  I had the antibodies so she sent me to an endo.  Even the endo didn't really take me very seriously but sent me on for an ultrasound that day "just to be sure" and I had quite a few nodules.  She put me on meds THAT day.  I can't believe after seeing you had nodules no one put you on meds.  Thats too bad!

She explained the deal with the nodules is if they get too big then they tend to go cancerous.  They keep growing if there is not enough hormone in your system and your thyroid is growing these nodules trying to put out more hormone that your body is calling for but it just can't cope.  If they get over 1.0mm thats when they want to biopsy.  I go in for a 2 yr ultrasound this October and am hoping since I have been on meds they haven't grown.

In that regard they like to keep your TSH under 1.0 as much as possible to stop the growth of the nodules.  Mine is currently at .8 though I find I'm yawning alot again.  My current GP lets me regulate my dose because everyone feels good at a different number but MOST people seem to feel good around the 1.0 range.

I had a hard time getting used to the meds so my advice if you're medicine sensitive like so many of us here are, start low and build up over months.  For instance they wanted to start me on 25mcg, I had to do 12 for a couple weeks (1/2 pill) then move up from there.  Right now I alternate 75 and 88 each night.  It made me feel edgy, over caffeinated, thus the reason to start slow.  This only lasts for a couple months if you're sensitive and after that I felt REALLY GREAT.  I rarely feel tired, ever, I don't have that fatigued, dragging feeling all the time though maybe a little more now.  Maybe I need to adjust my meds again :)
One last thing.  Many foods and medicines interfere with the absorption of synthroid (my advice is go with the brand if you can) so I take mine in the middle of the night.  I usually have to get up and go to the bathroom anyways so I take it then.  That way I know nothing has interefered with the dose and you can stay on the lowest possible dose because it is absorbed properly.

I hope this helps a little
Cindi

DragonflyC

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Re: How do you feel when you thyroid is out of whack?
« Reply #6 on: September 11, 2010, 08:23:17 AM »
Here's a list of specific symptoms experienced by many people w/ thyroid issues: http://thyroid.about.com/cs/basics_starthere/a/symptoms.htm

The thyroid.about.com website is a fantastic resource.  If you haven't discovered it already, it's worth exploring.

Personally, if my TSH creeps above 2 (still well within many doctors' "normal range"), I am facing the following:

Exhaustion/fatigue
Crabby disposition/much less patient than usual
Freezing cold all the time
Aches and pains
Air hunger (i.e., dyspnea)
Hair loss (sometimes)
Eyes more red and dry than usual (they're always bad, but they go crazy)

SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

Scottietottie

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Re: How do you feel when you thyroid is out of whack?
« Reply #7 on: September 11, 2010, 08:52:41 AM »
Hi julie  :)

My thyroid condition waqs dxd later rather than sooner.

Symptoms:  (in my case) deep and unrelenting depression, Fatigie, brain-fog, total inability to concentrate, flaky nails (not just brittle - the flaked) constipation, night sweats and lots and lots of weight gain.
Latterly - just before dx - I felt like I was coming down with flu which never quite materialised. My throat felt rough, my head ached and then a lump appeared at the front of my neck.
I was dxd with Hashimotos and told I had a multinodular thyroid and that the nodules would come and go and change shape but woukd probably not be noticeable once the thyroxine kicked in.

Six years on I still need regular medication adjustments. Warning signs are always flaky breaky nails and depression - like when death seems infinitely preferable to life. The right dose of medication lifts the depression completely!  :)

Take care - Scottie  :)
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cmclien

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Re: How do you feel when you thyroid is out of whack?
« Reply #8 on: September 11, 2010, 08:54:32 AM »
@ Dragonfly -I didn't know dyspnea was a symptom.  I totally had that, had periods where I sat there thinking about breathing, kinda like I was having a mild hyperventilating attack but wasn't.  I think thats what the yawning was about too, trying to get more oxygen into my blood stream.  These weren't small yawns but huge gasping yawns, probably goes along with the dyspnea.

Very interesting.

When mine starts rising I have the sames ymptoms as you and get the aches and pains.  Right now I have achey hips and when I woke up today my wrists and ankles ached but I don't know if its the SJS or my thyroid.  Does anyone know if when you start having joint pain with SJS does it start in your ankles and wrists (tops of them mostly and kinda lower shins) might require a new thread but thought I'd ask it here too.

sunshine

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Re: How do you feel when you thyroid is out of whack?
« Reply #9 on: September 11, 2010, 09:24:04 AM »
Hi Julie

I also have Hashimoto.  I had a partial thyroidectomy about 12 years ago, and did not need to be on meds until about 2 years ago.  I remember my nails would not grow ( I always had great nails) and the pores in my skin seemed really big and dry.  I was always tired, and (not realizing it is common with hypothyrodism) I got frozen shoulder and the following year plantar fashitis (sp?) Since I've been on meds, things seem to have settled down.  I still might need a little adjustment, cus my hair seems to be thinning a little bit. For those with a goiter, selenium is suppose to help with the swelling, and stay away from soy, which seems to be in everything! As mention previously Mary Shomons web site is very helpful.

Scottietottie

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Re: How do you feel when you thyroid is out of whack?
« Reply #10 on: September 11, 2010, 09:26:42 AM »
hi again - I forgot to mention really dry skin on heels - thick and liable to cracking.

Selenium helps T4 to convert to T3 so it is ia good supplement to take while taking thyroxine too.

Take care - Scottie  :)
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Julie

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Re: How do you feel when you thyroid is out of whack?
« Reply #11 on: September 11, 2010, 11:19:03 AM »
I am so thankful for all of you and your responses.  I am seeing a lot of similarities here and it makes me feel more justified in the things I have been wanting to bring up to the endocrinologist when I see him.

I am still stunned that I have a report here that is 2 yrs old showing multiple attenuating nodules, and I never would have known it had I not gone around collecting reports from medical records recently.  Geesh...makes me want to sue the hospital for malpractice!

Sunshine, it's like a big light bulb has gone on over my head now because of you.  FROZEN SHOULDER??  I have never heard of this..and certainly would never have connected it to being a thryoid related problem.  My right shoulder blade and neck have been in such pain for months! I hardly have any range of motion in my neck and across my shoulder blade and down my arm. When I saw the rheumatologist this week, she X-rayed my neck and says it shows degeneration of the c-spine.  So I figured I was stuck with arthritis.  I've been worried about it being cancer too.  BUT...could this by my thryoid causing it???  Wow!  I'm stunned.  Thank you for bringing that up!!

I had thyroid labs drawn this week and don't have the reports back yet.  BUT...other than the antibodies that wax and wane, all of the other labs for thyroid have always been in range for me.  How can this be when I have multiple nodules?

From what I gather, it sounds as if you are all saying that I should be on a replacement med based on having nodules alone?  Is this something I should insist on with my doctor?

Oh..it would be WONDERFUL if some of these symptoms that I've been miserable with for so long could be relieved by adjusting my thyroid function.

Thank you all for giving me hope!!!

:-) Julie 

 


cmclien

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Re: How do you feel when you thyroid is out of whack?
« Reply #12 on: September 11, 2010, 01:28:11 PM »
Sunshine  wow, did not realize you said something about that frozen shoulder.  I have had shoulder pain for years and it has in fact been better these past two years while on meds.

Julie I guess the thing you have to remember is thyroid functioning is a range.  Depending on where you are at in that range might not be the best for your body.  If your TSH comes back at 3.0 yet you're growing nodules like i was then clearly that is too high for your body.

If your endo doesn't want to do meds yet there are a couple things you can mention.  One is the nodules themselves.  How big are they?  Request an ultrasound then they will be measured, I would think any endo would request this on their own.  Mention that you have read about taking synthroid for nodule suppression and ask his opinion on that.  There is mixed feelings on whether it works or not but I think "most" endo's would agree that if there is ample thyroid hormone in your blood sream then there is no reason for your pituitary to be asking for more hormone thus the reason for taking synthroid.

The other is to mention the specific symptoms you have and also that you have thyroid antibodies.  There is a reason they are there even if that number goes up and down.  My endo actually said to me " I have patients whose numbers are much higher then yours" and I thought that is relevant how?  Its like that wasn't enough.  She cam through in the end but that struck me as very odd.

Cindi

DragonflyC

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Re: How do you feel when you thyroid is out of whack?
« Reply #13 on: September 11, 2010, 01:29:52 PM »
One more thought: if you don't get the response you need from your endo, consider trying to work with your primary care doctor/general practitioner instead.  A lot of endos are more interested in diabetes than thyroid issues, and too many of them haven't bothered to stay up-to-date on new research related to the thyroid.

It might not be a bad idea to bring the AACE's "new" (2003) recommendations for normal thyroid levels with you in case your doctor is still working with the TSH of .5--5.5 range: http://www.aace.com/public/awareness/tam/2003/explanation.php

You may have a great doc and no need of such evidence, but it couldn't hurt to have it available.
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

inga

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Re: How do you feel when you thyroid is out of whack?
« Reply #14 on: September 11, 2010, 01:40:17 PM »
3.95, nodules on CT, and NO thyroid diagnosis, despite, my father having had thyroid disease....oh my neck hurts and they keep telling me it is my lymph nodes due to IVIG....they have not changed the reference range at my lab.