# I think it's time to see someone else other than an endocrinologist



## Prudence (Oct 30, 2012)

Long time, no post. Back story: two RAI'S done, the second done in February of 2013. Just have not felt right for months, even though their lab ranges show I'm fine. Have a history of having symptoms that do not reflect labs. Latest labs were TSH 1.66 (0.55-4.45) FT4 was 1.7 (.8-1.8) Total T3 90 (60-180.) Have had sore thyroid the will ache and radiate pain, with no swelling, hair loss, occasional tremors and hot flashes, general dizziness. I have had these symptoms for a year now or more, with my thyroid panel being in range.

Tried a new endo and got the same deal. Just couldn't be thyroid, it's fine in the labs, take ibuprofen for your neck pain, etc. Even after I explained how often my labs do not reflect what's really happening inside my body. No offer of an ultrasound, and scan, a med switch (I have been told it could just be a matter of needing a different brand but the endos I've seen say no, other regular docs say yes. Confusing.)

I'm just....frustrated. I actually went to 88mcg and 5mg of Cytomel and my tsh improved from being on a higher dose of each previously. (was 2.6 something on 100 levo and 10 cytomel but began to feel really dizzy)so that concerns me if my thyroid actually 'died.' I see an ENT tomorrow and I'll explain myself...again...

Has anyone here actually had an endocrinologist that actually*gets* thyroid woes? I get laughed at, called insane, get accused of making it up, hypochondriac, etc.. I've found non-endos seem way more understanding of my symptoms, but rarely will they help, they do blood tests for me but won't go any further. I'm just...peeved.

So forum, thanks for letting me vent, but a poll: Who do you see for your thyroid problems?


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## Sadface (May 12, 2014)

Sorry to hear your not well. But seriously, yes, you need to find a doctor that doesn't laugh at you. Or call you insane!! That's abusive.

Or you can respond with "any or all insanity is due to poor thyroid treatments by you (your doctor)" since thyroids out of order do have profound effect on our mental well being.

Hopefully this ENT will take you more serious and treat you with respect. And order an ultrasound.

Stories like this makes me really upset. It's never ok to step on people and it's even worse to do so on the weak and the sick. I hope you'll get the help you need to feel better.


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## Prudence (Oct 30, 2012)

I've scoped out some other doctors as well. It's frustrating-when I first began feeling the symptoms of Graves' way back in 2010, I was told to go see a psychologist by an endocrinologist when a neurologist couldn't find one thing wrong with me, and told me he felt it was thyroid. I did, but that didn't stop the weight loss, the tremors, the dozens of other symptoms I had. It took many doctors to have one go "...why haven't they tried methimazole? " And within six weeks, it was like night and day. I have made it known my thyroid can be sneaky, have tried to talk about how I feel my FT4 is a little too high and my TT3 too low, ask about FT3-get told to stop reading about my condition. I just want someone who listens and doesn't dismiss me as a hypochondriac. I have had on and off problesm for four years-and I am not making them up. It just saddens me how crummy the medical field can be. There are definitely diamonds in the rough, I guess I just have to mine a little more.


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## Sadface (May 12, 2014)

Whatever you do, do not stop reading up on your disease. Don't take their ill advice.
And you're not a hypochondriac. You do have Graves, it's a pretty serious illness, not to be laughed at. Certainly not by your treating doctor.
But don't give up, you'll find your diamond in the rough.


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## Whisperwindkat (Jul 31, 2014)

Like you my labs never really show the problem, but you know something is not right. Keep trying. I had part of my thyroid removed 10 years ago and have suffered ever since. I have changed doctors so many times and had so many treat me like a psych case. The best thing I have done for myself is to keep reading and keep pushing. I am still pushing but getting closer to a resolution....I hope. I have a new GP and she shows promise...not a lot of thyroid knowledge but willing to listen and work with you. I will take that. Keep your chin up and keep pushing for the right treatment. Personally, I think you could use a little more T-3. Blessings, Kat


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## Andros (Aug 26, 2009)

Are you positive that cancer has been ruled out? Cancer would not uptake radiation too well if at all in some cases. Would you consider seeing an ENT? I am suggesting that you do so.

Hugs sent your way!


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## creepingdeath (Apr 6, 2014)

All I can say is if any Doctors ever laughed , call me an insane hypochondriac ,my response will be *"FU**- OFF"!!!!!!!!!!!*

I would immediately get up walk out never to return to this Doctor.

That is just down right unprofessional .

I would seek help elsewhere.

No one should put up with that.....

Jamie~


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## Prudence (Oct 30, 2012)

ENT just removes thyroids, "doesn't do maintenance work/blood on them." He admits he knows nothing about thyroids, just removes them when an endocrinologist suggests one to someone. (Then why did this ENT have thyroid disorders specialized?)

Onto a new doc. I have my eye on a few. It just bothers me no one wants to at least look at my neck through ultrasound with as long as I have had the aches.


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## Lovlkn (Dec 20, 2009)

Prudence said:


> ENT just removes thyroids, "doesn't do maintenance work/blood on them." He admits he knows nothing about thyroids, just removes them when an endocrinologist suggests one to someone. (Then why did this ENT have thyroid disorders specialized?)
> 
> Onto a new doc. I have my eye on a few. It just bothers me no one wants to at least look at my neck through ultrasound with as long as I have had the aches.


An ENT should be able to do an ultrasound on you. A GP should be able to order an ultrasound on you .



> Has anyone here actually had an endocrinologist that actually*gets* thyroid woes? I get laughed at, called insane, get accused of making it up, hypochondriac, etc.. I've found non-endos seem way more understanding of my symptoms, but rarely will they help, they do blood tests for me but won't go any further. I'm just...peeved.


I had a run of luck with my 1st endo who was with me for the Graves journey. After my TT - I have been to 3 endo's because my 1st retired to motherhood. I saw 2 GP's after the 3rd endo and my current DO treated a friend of mine who had Graves so I figured he knew thyroid's. He freely prescribes what I request ( calls Cytomel treatment unconventional LOL) and runs the proper tests to regulate medication so I consider him a keeper.

Your issue is you need a Sonogram - insist until they perform one. Ask your gynocologist - that's who ended up diagnosing me with Graves disease. They are more concerned about total health than most other doctors I have seen.


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## webster2 (May 19, 2011)

It took me 3 endos to find one that "is human" as the ENT described him. My endo is an osteopath and in the same practice as the other 2. He is great. He listens to me and I listen to him. He finds it reasonable to treat by labs and symptoms. TSH, FT3 and FT4 are the labs that are run each time. I feel great and am thankful each day.

I hope you will find someone that will treat you well.


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## Prudence (Oct 30, 2012)

I have mentioned my achy throat to all my doctors, and they seem unconcerned since my thyroid isn't swollen and my labs are "okay." I don't know why someone won't humor me with an ultrasound! All I know is, it will ache. It's not 24/7, but it's concerning. It isn't keeping me from swallowing, but...why does it hurt there, you know? One said it was a 'lymph node.' But it hurts right on my thyroid when pressed and will ache here and there, almost daily, one side or the other, or both... and even if it's a *not* thyroid, why wouldn't anyone want to see if there's something amiss in there? The ENT had no idea, which also concerns me, because it's still part of my throat. I get conflicting answers concerning levo/t3 doses and aches-some say levo can make it ache if not the right dose. Others say no.

As for my RAI's-both I had indicated Graves', nothing more. No one suspects cancer, I have no nodules, my thyroid was large before I had my RAI the first time around,but has since stayed the same size-even when I went hyper again. I have found a small handful of M.D.'s/D.O.'s (oddly, one endocrinologist I see IS a D.O., yet is one of the most unsympathetic guys I have ever met) in my area that are more into the right labs run for thyroids, have great reviews for thyroid care, are open to NDT...not that I'm looking to switch, I am on levo and Cytomel, but in between the two endos I've seen, one won't go above 10mcg and has raised levo with it, which scares me-, and the other doesn't want me on it at all. But I know asking some endos if NDT would be a better option is like asking for caviar at a Burger King-you get looked at as if you were nuts. I just like that they have that option. One was very nice, and even called me to speak to me directly when I simply asked his staff about hours at the local office and let me know about his practice a little more. I'm going to give him a try before anything, I think. But thanks for the OB/GYN suggestion-I know one NP there is always concerned about my thyroid. I'll keep her in mind! I never thought of that.

ETA: forgot to add: when I saw the newer endocrinologist and said I have had hair loss for a year now (didn't lose it when I went hypo from the RAI, but has steadily fallen out since going hyper from overmedication and hasn't let up-and that was summer of 2013) he said hair loss is normal in thyroid flucuations. "Even though I've been in 'normal' range for a year, almost?' "...yes." :sick0012: Oookaaay then.


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## ifthespiritmovesme (Jan 8, 2014)

Just my 2 cents - From my experience, an Endocrinologist is the last doctor I want to see. They are supposed to be the thyroid experts, but only look at TSH. If you have autoimmune troubles, they don't even want to see you at all. They do not like treating with Cytomel - absolutely necessary in my case. I've already trained my PCP that if he suggests Endo, I will run as fast and as far away as i can! Saw an ENT, and he just wanted to refer me to Endo. I told him I will not see a Dr. who is ignorant about the proper treatment for autoimmune thyroid problems.

Maybe I am being too broad in my dismissal of Endo's, but looking at a lot of friends with thyroid problems, seeing them ALL not being helped by their Endo's.....(None even knew about testing FT3 and FT4). These Damned doctors need to get up to speed and stop thinking TSH is the answer to everything, and a small dose of Levothyroxine fixes everyone. I'd truly have to be dying to consent to seeing an Endo.


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## ssMarilyn (Nov 15, 2013)

I have seen 3 endocs and only one prescribed Armour, but he gave me a flat dosage of 90mg, didn't say anything about splitting it and nothing about coming back in 6 weeks for follow-up tests. I finally found a good doctor on the about.com Top Docs for Thyroid list.


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## ifthespiritmovesme (Jan 8, 2014)

I surely hope that your new doctor will give your issues the attention they deserve. It is beyond frustrating to be suffering and nobody will take you seriously.

Sending hugs and prayers....


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## Heidic1995 (Sep 26, 2014)

I have same problem! Something is deft wrong with me! I feel my drs think I'm crazy, I have graves ibd interstitial cystitis and sjorens... I feel like crap daily


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## Prudence (Oct 30, 2012)

Bumping for an update! I saw the more holistic MD Friday-he actually ordered a ton of blood work (including antiboides! Hormones! Reverse T3! And free's for both T4 and T3! So much stuff I usually have to pay for myself on direct labs, or beg for! ), and finally...a thyroid ultrasound for Saturday morning to make sure something isn't hiding out in there since it aches! And he wants me to try out Nature Throid-1/4 grain three times a day to begin with, then move on to a bigger dose if needed. (Pills just came in today-saw him Friday afternoon, so pharmacy had to order them and wait for the weekend to pass.)

I have to say I feel pretty good about this guy. Even if my ultrasound is clear, at least SOMEONE finally ordered one. He likes NDT, hence the switch-but also will add more T3 or T4 if needed as well.


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## Sadface (May 12, 2014)

Prudence, that doctor sounds like a keeper! Why oh why can't all doctors be like that???

Well, hopefully now you can move fast forward to a healthy life!


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## Dr. Hila Handler (Sep 22, 2014)

I have read a lot of this thread and just want to let you know that you are not crazy, and conventional medicine really falls short in treating thyroid issues and other chronic diseases. What you need to find is a doctor that looks at the root cause, not just "band-aids." Unfortunately, I agree with you and have personally stopped referring my own patients to endocrinologists, because, like most conventional specialists, they are trained to follow protocols that for most patients are just not enough and often harmful.

There is a lot of evidence for nutritional/alternative therapy that is in fact very likely to succeed. I have personally seen many of my patients and my colleagues' patients thrive and actually reverse autoimmune diseases including thyroid disorders when they look at the whole patient and look at nutritional deficiencies.


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## ifthespiritmovesme (Jan 8, 2014)

Yeah....I have an apointment tomorrow to see a particularly bullheaded conventional Endo. Going armed with a lot of questions and information for him. 40+ years of suffering...Should be a crime...


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## Andros (Aug 26, 2009)

Good luck and please let us know what transpires. Hoping and praying it is all good!

Hugs,


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