Hashi's...why did it take so long?

[hope4thegoodstuff]

I was diagnosed with Hypothyroidism two years ago and for a year I took synthroid ...really noticed no difference in myself one way or another.  A high TSH was my only clue that something may be out of wack.  A year after I began medication, I started having bad reactions to my meds.  Fast and irregular heart beat, dizziness.  It was basically like having a 4 hour panic attack.  We reduced mcg's from 100 to 50 to 25 and even 25 every other day.  My origional dr came kind of close to fussing at me and stating that I couldn't possibly be having an allergic reaction...it's an exact replica of human thyroid.  I went to a second dr and she said the same thing....it had been seven months since I started having difficulites and I was fed up.  I'd take myself off the meds and the two original dr's would put me back on.  TSH is too high, you HAVE to be on this.....I went to another dr in a town where I worked for a UTI...he asked about my thyroid....I told him "i don't want to talk about that"  He insisted.   He then proceeded to look at previous test results and asked...Has anyone ever said anything about Hashimoto's thyroiditis?  No....Within seconds of looking at my results, that's how he diagnosed me. My antibodies were high. That had never been mentioned before.  We did an ultra sound within a couple of days. That had never been done before.  I have a nodule that is slightly more than 2 cm.  He sent me to an endo doc within a week. She did a biopsy, which came back showing signs of cancer and she immediately set me up with a surgeon.  I meet with him in 3 days.  Doing ok, but am mad as heck at my first two dr's.  I was never a difficult patient.  I see a dr a couple of times a year for paps, mammos and sinuses.  Why did it take so long for someone to LOOK at me?  LISTEN to me?    

[hope4thegoodstuff]

Well, that was interesting.  One moment I was looking at a light and wondering "is this stuff ever going to kick in" and the next moment I was waking up feeling a bit confused and wondering "what the heck happened".. : )
Was told that my thyroid itself was completely removed as well as a bunch of nasty looking lymph nodes and my thymus? gland.  I apparently don't need that either.  That's good...I didn't really know that I had one of those, but if I don't need it, I guess they can have it.  My lymph nodes were tested and are all negative for cancer.  Thanks for that.  The cancer on the thyroid itself was smaller than they thought it would be, so I guess that's good news.  It was very damaged from the Hashis and they removed the other gland as my ugly little lymph nodes were all around it.  So now I've been home for a couple of days and sleeping ..........  a lot.  :)  That vicadin is good stuff.  Though the incision itself is not as sore as the back of my neck, and right shoulder .  I have had difficulty swallowing for a couple of days, though that is better and my voice still comes and goes some, but is much better.
I go back in a week and a half to discuss the radioactive iodine treatment.  It was great being able to talk to you folks before all of this.  It helped tremendously.  Thanks

[Totie]

I can certainly understand your frustration. For two years i had been going to two dr. who never explain my symptoms. Night sweats/weight loss/chills and swollen glands.

They kept telling me everything was fine. Well just last week i happened to see another dr. who was a fill in. I told him about my lymph nodes and how some had to be removed. He asked if anyone ever told me why the lymph nodes were enlarged, i said, "no", they can give me no reason. He did blood work and to my surprise i tested postive for both
Tuberculosis, and Epstein Barr Virus, now I am being referred to an infectious disease doctor and ENT. It took two years of hearing it is anxiety, depression, underlying psychiatric issues....It took a lot of praying on my part to find answers, I pray we get to the problem real soon....

[Super_sally888]

Doctors often don't look further than their noses or their speciality, even the good ones.

I am hypo and have some other health issues.

But I had appendicitis ignored despite my continually complaining of pain for 3 months last year when I was pregnant - which was brushed off as being from the pregnancy.  

Only when I couldn't walk from the pain did they agree to do surgical exploratory surgery and it WAS real and appendicitis and lucky me and baby were ok.  

And that was with doctors arguing left right and centre and most of them didn't want to do the surgery.... only my obe insisted..... and that was after they put me in the hospital on bed rest thinking the pain would go away for nearly a week.... and me crying and begging and telling them that I understood their reluctance to do anything or take a look but that I couldn't go home again with that much pain...

So many people have stories to tell.  But honestly doctors aren't gods.  they're only human and doing the best they can mostly.  We need to be educated patients and trust ourselves when we think something isn't right and keep looking for answers (within reason) .... even if we get brushed off and annoy our doctors from time to time...

[BB8911]

Hi ccookin,

Has your wife had her TSH and T3 and T4 tested recently?  Sometimes even if they are in range, she might still need a bit of an increase.  I know I did.  And after about a week my muscle aches and pains left.  She should ask her doctor if maybe just increasing by a .25 might help her and see what he thinks.

[ccookin]

DID ANYONE HAVE SEVERE ANKLE AND JOINT PAIN, My wife is Hypo and we don't thnk here medicine level is right. been hurting in ankles and wrist for 3 years now. can't hardly even walk.  She is really needing help,

[Barb135]

From my experience, once a doctor "finds" a problem - in my case it was hypothyroidism, they tend to want to stop looking right there.  Once my hypothyroidism was dx'd and my pcp put me on synthroid, according to him, that was the end of the story and I'm "all better" now and anything else that's going on is just stress or I'm lazy or a hypochondriac or something like that.  

I had to even ASK for the thyroid test, because THEY never even thought of that since I had been dx'd not long before with pernicious anemia, their original thought was that B12 shots were going to solve all my problems.  When I didn't get better (or at least not as much as I thought I should) with the B12 and continued to feel horrible and gain weight like there was no tomorrow, I asked for the thyroid test and they looked at me like I was nuts, but the nurse practitioner wrote the lab order and sure enough.  Hypothyroidism.  Started on synthroid and again "end of story" as far as they were concerned.

It took an ENT to send me for the antibody testing and an ultrasound.  Then I finally got the Hashi's dx.  I still haven't seen my pcp since that dx (another story) so not sure how he will react as I have an appt tomorrow.  At one point, he tried to tell me that all my problems were caused by stress, yes, I DID say stress.  Seems that's the easiest thing for them to deal with because they can just pass out the antidepressants and send you home!!  

Also ENT referred me to an endo, who actually does testing other than TSH.  Endo changed my med and now I'm on generic levothyroxine and cytomel.  Feel like a different person.  

Seems doctors like to take the "path of least resistance" and once they zero in on one thing, they tend not to want to look further.  Because of that it often takes a lot longer to get a dx than it should.  

[redheadaussie]

Well, I have to jump on the band wagon here....I had undiagnosed Hashi's for 15 years!!! Husband left me after I had child number 3, so of course doctors said I was stressed. Lost 30 kgs (60 lbs) that year:- stress...gained 30 kgs around 5 years later:- stress...went hypo and hyper mental and total depression:-stress...always stress they kept telling me....so when I had my nervous breakdown:-stress...wehn I had a huge thyroid choking me to death almost literally, and I could no longer breathe at night...did they say stress? YES!!!!! So I really cracked it big time and told them the history in the family of thyroid disorders...EVENTUALLY I threatened legal action. That worked.
  Got a partial thyroidectomy in May 07, after the FNA showed indeterminate for cancer...was follicular adenoma with changes (heading to cancer) THAT"Swhen the surgeon said to me....Oh your thyroid was almost as solid and dead as a door nail...you have Hashimoto's Disease... I nearly wept from joy..FINALLY I had evidence I was not a nut case after all.....BUT lost 15 years of my life...my 3 kids had to go live with my ex-husband, lost a lot of friends ( whisper whisper..she's doing drugs coz she lost so much weight, have you seen that acne on her face...tsk tsk those poor kiddies, she sleeps all day coz she's a heroine addict I am sure of it!) NO ONE bothered to ask me if I was REALLY alright..and hence I now at almost 46 am educating people on the dangers of misdiagnoses.
    I had the rest of the thyroid taken out in Dec 07 Hurthles Cells with changes..(big worry of cancer there!) My antibodies have dropped but are not gone...When I am under stress the hashi's comes back big time, and I have to force myself to not get sad about that. I believe had I been diagnosed much earlier I could have been spared taking anti-depressants for 8 years on a dose which has now done damage, I would have had my friends, family and kids, and a life!
  I suspect doctors are just not that well educated to look for thyroid when a patient presents with anxiety, depression, etc. It is going to take a long time for them to put the pieces together and just order a simple blood test.
   Also it is a fact that many of the bigger pharmaceuticals push their anti-depressants on the doctors togive to the patients. This is known as 'kick back' Doctor may get a holiday, TV,money etc if they prescribe so many patients with a certain number of their product in a year. Horrible but true ( I know this coz I asked!) So often it is much easier to write a script for say Efexxor rather than order a blood test.
   Hope that helps you understand why we don't always get the answers immediatelY!
Cheers!

[goolarra]

That should have been secrete, not excrete.  Sorry.

[goolarra]

Yes, it will definitely change.  However, you should get relief from being up and down and just be permanently down!  That's treatable, though.  The thing with Hashi's is that the nodules can "leak" rather than excrete hormones into your bloodstream.  That happens in a pretty uncontrolled fashion.  Thus the ups and downs.  Good luck with your surgery, and let us know how it goes.

[hope4thegoodstuff]

Do I have symptoms? Well...yeah...I guess I do, but until they told me I had the Hashi's maybe I didn't really notice it or understand what was happening.  It's not like I feel bad really, I just have up moments and down moments.  So I go from feeling really beat to feeling really upbeat and it can change over the course of a normal conversation.  Just that fast, I go from feeling like I was put in a box and thrown in the road, and run over a few times... : ) ya know?  Then I'm running around like a crazy person, kind of excitable.  But I don't feel sick, I don't have trouble swallowing, I don't feel the tightness or swelling in my neck, I don't have heart palps or anything anymore since I took myself off of the synthroid.  According to my endo...if I'd not have had cancerous cells lurking in there, she felt that for now I would have been able to stay off of meds as I (at this point) feel better off than I did on.  My tsh was at 5.3 this time which isn't so high that she was concerned.  Once they take my thyroid out...I'm sure that's all going to change and very quickly.  : )

[goolarra]

Doctors not listening is a frustration that almost all of us on this forum have experienced.  I sympathize with you.

I have Hashi's, too.  My TSH remains high after over a year of adjusting Levoxyl.  My T3 and T4 are just barely in "normal" range.  I was started on too high a dose (88 mcg) of levo and, like you, started having heart arrhythmia (tachycardia, in my case).  Backed off to 25mcg levo per day, and still had the tachy, so had to start a beta-blocker for the tachy.  Since then, not much has changed except that I keep taking more and more levo and more and more beta-blocker.  All very frustrating.  However, I feel fine and haven't had any hypo symptoms since starting on levo.

Some people have problems with the fillers in the different brand name or generic levothyroxines.  You might try another brand or switching from generic to brand name to see if that helps you.  

Do you have hypo symptoms now?  What is your TSH?  Free T3?  Free T4?

I'm interested in finding other people whose only symptom of hypo is high TSH.  I think we're a subpopulation that's virtually ignored by everyone.

Good luck with your appointment.