# ha****oxicosis???



## bells84 (Nov 24, 2009)

Hi all I'm new here. Hopefully you all can offer some insight into what is going on.

After about 8 years of arguing with various doctors about having something wrong with my thyroid and numerous test results that were on the high side but still normal (between 4-5.11 when normal was 0-5) I finally managed to get my GP to refer me to an endo. In all honesty it was probably just to get me to shut up.

Met with endo 3 weeks ago (comes into gp's office every couple of weeks one of the perks of my gp) I made them pull my regular file to go through at the same time as had some old blood work and ultrasound results in there to compare with more recent ones.

Went through all my symptoms with endo, including constantly being cold, lack of energy, mood swings to the point i think i'm bi polar sometimes, constipation, heavier periods, hair falling out, nails breaking off, random choking/toruble swallowing, tenderness on right side of neck plus more...

My most recent blood tests were "normal" per doctors antibodies from what i remember where dead center on the normal scale. Going to get exact values this week when see endo again. Ultrasound shows thickening of isthmus mine is 5mm normal is 2mm. I had a cyst previously small only 5mm in right lobe but now seems resolved.

endo thinks could be hashi's as also have family history of my grandmother was hypo but presented hyper.

after seeing endo on the wednesday, almost got carted to hospital on monday from work as heart rate was 160 sitting at my desk, since then heart rate has been pretty steady at 100. I also suddenly got very hot and sweaty, it went really high a couple times in an hour. (reason for seeing doctor) Doctor i saw mentioned it seemed too steady to be anxiety over the situation he took my pulse for 3 mins after i sat doing nothing in the office for 2 hours. He thought if do have hashi's definantly related. I'm a little worried about being put on a beta blocker to lower the heart rate as had a seizure when i was on inderol for a few weeks when i was 16 due to a random round of tachicardia (maybe related but not sure).

does this sound like hashi's even with normal blood work, and if so could these new symptoms be toxicosis?? anyone have any thoughts or heard of anything i can mention to doctor on possible ways around the beta blocker if is toxicosis. besides the obvious wait for it burn out, I'm only 24 don't need heart issues too.

any imput would be good thanks sorry this turned out longer than i intended

Sarah


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## Andros (Aug 26, 2009)

bells84 said:


> Hi all I'm new here. Hopefully you all can offer some insight into what is going on.
> 
> After about 8 years of arguing with various doctors about having something wrong with my thyroid and numerous test results that were on the high side but still normal (between 4-5.11 when normal was 0-5) I finally managed to get my GP to refer me to an endo. In all honesty it was probably just to get me to shut up.
> 
> ...


Hey, Sarah! Welcome!

Well, you can have Hashimoto's and have thyrotoxicosis as the patient often experiences a hyper state/stage w/ that and/or you could just simply have hyperthyroid and/or Graves'.

It would be very very good to get a TSI (thyroid stimulating immunoglobulin) test run for if there is any TSI at all present, that is responsible for the hyperthyroid state and/or thyrotoxicosis.

http://uimc.discoveryhospital.com/main.php?t=enc&id=1516 I hope you will read this in it's entirety.

And yes; the incident at age 16 could be related. So please be sure to tell the doctor what happened w/ the Inderol (I know you probably already have) and see if there is another choice for a beta-blocker.

In addition to the TSI, if the endo has not done so, I definitely recommend a radioactive uptake scan. (RAIU)

http://www.radiologyinfo.org/en/info.cfm?PG=thyroiduptake

Being placed on an anti-thyroid med should also slow down your heart but you need more testing. This sort of med would skew your tests.

Please keep us posted.

If you can, please stick to your original thread (posting) so medical information and background is handy for reference. It will be much appreciated by moi!


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## bells84 (Nov 24, 2009)

Thanks Andros,

I'm off to the endo today to definately ask about TSI blood work and Uptake scan. Bringing my mom too she has ways of getting things done when i can't. Plus she can pipe in about family history on both sides better then i can.

I'm glad I kept track of my heart rate the past couple of weeks like the walkin doctor suggested as miraculously it's down to 78 bpm so far today the last 2.5 it's been between 96 and 108 with spikes as high as 150bpm. Does anyone else find that by the time they get in to see the specialist, that their symptoms have changed since when they were referred? I'm convinced this is why it's taken so long for someone to take me seriously.

Hopefully this means heading out possible hyper phase and won't need beta blocker but still have to bring up issue in case happens again. The walkin doctor didn't want to give me a beta blocker give previous reaction and without knowing the endo's action plan.

Will keep you posted on how i make out today. hopefully i won't hear that i'm halucinating again getting tired of doctors saying that it's all in my head. This endo seems different though.


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## Andros (Aug 26, 2009)

bells84 said:


> Thanks Andros,
> 
> I'm off to the endo today to definately ask about TSI blood work and Uptake scan. Bringing my mom too she has ways of getting things done when i can't. Plus she can pipe in about family history on both sides better then i can.
> 
> ...


Hi, Bells84. I can't wait to hear from you about what the endo has to say and what tests he/she is running as well as any comments.

You are not halucinating. You are also not the only one that such a thing has been implied. Sadly. I keep on losing faith in doctors at a rapid pace.

Glad you are taking your mom to advocate for you. This is awesome. And highly recommended.


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## bells84 (Nov 24, 2009)

Well went to the endo... official dx I'm hallucinating... oh and need to lose some weight. The only good news was i don't have diabetes.

he looked at most recent tests tsh 3.7 down from 4.89 from 3 weeks before and 5.11 a couple months before that. tsh per lab ranges should be 0-5. free t4 was 14 (high range was at 20 can't remember low number) and free t3 was 4.9 (high range was 5.7 can't remember low number either.

In all honesty i've never had test results this normal before. but I still keep thinking that 5 days after this test my heart went pyscho. I'm thinking the test was done mid swing from hypo to hyper (or what ever that was i had).

Doctor refuses to do anymore tests. Told me to get my tsh tested again in a year but at same time also said i have a good chance of having hashi's later in life.(or now if he bothered checking properly) he even went on to say i wasn't symptomatic right now. mom was livid!! Needless to say now looking for new endo and trying not to bang my head against a wall. ugh.

In the meantime already booked an appointment with gp to demand more testing. I want a complete work up. anything they can test i want tested. I know i'm not hallucinating and so do the people around me. I dont want to be carted to the hospital in an ambulance to have a doctor bother to pay attention. It did come to that for my grandmother and she was never then same after.

any suggestions for blood work i should definately include would be appreciated


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## Andros (Aug 26, 2009)

bells84 said:


> Well went to the endo... official dx I'm hallucinating... oh and need to lose some weight. The only good news was i don't have diabetes.
> 
> he looked at most recent tests tsh 3.7 down from 4.89 from 3 weeks before and 5.11 a couple months before that. tsh per lab ranges should be 0-5. free t4 was 14 (high range was at 20 can't remember low number) and free t3 was 4.9 (high range was 5.7 can't remember low number either.
> 
> ...


If you have to pay out of pocket, I recommend that you get TPO (antimicrosomal antibodies), TSI (thyroid stimulating immunoglobulin) and Thyroglobulin Ab. This is where you prove or disprove autoimmune thyroid disease.

Let me know what you do.

I am soooooooooooooooo sorry. This guy sounds like one of many many that I have had over the years. Meanwhile, I was dying a slow and steady death.


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## bells84 (Nov 24, 2009)

I have had botht the TPO and THyroglobulin Ab TPo was 35 should be <30 and THyro Ab was i think 52 should be <40. I may have the ranges messed up but i know they were both just out side the normal range.

I live in canada so i don't really have the pay out of pocket option most of the time, and inorder to get any test done the doctor has to request it since the government is paying. Which makes it difficult when they refuse or don't think you need it.

I have heard that there are a few private clinics here that will do a complete head to toe work up and test anything that i want at my expense. all they do is diagnose people. they aren't allowed to treat you but will send their exact findings to your doctor or specialist. So i'm trying to hunt one down.

i'm not going to give up i know i have something wrong with me, i guess i have to go about another way then i have been to prove it.


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## Andros (Aug 26, 2009)

bells84 said:


> I have had botht the TPO and THyroglobulin Ab TPo was 35 should be <30 and THyro Ab was i think 52 should be <40. I may have the ranges messed up but i know they were both just out side the normal range.
> 
> I live in canada so i don't really have the pay out of pocket option most of the time, and inorder to get any test done the doctor has to request it since the government is paying. Which makes it difficult when they refuse or don't think you need it.
> 
> ...


If that is the case, then you definitely have proof that something is going on w/ the thyroid. I do care very much so please keep in touch. Saying a little prayer for you.

There is a lot of useful info here and it might help you negotiate the system.......

http://www.thyroid.ca/index.html

I sure hope so, anyway.

Just a little note to all.......
If you can, please stick to your original thread (posting) so medical information and background is handy for reference. It will be much appreciated by moi! And, if you already do; thank you ever so much.


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## hashigirl (Apr 30, 2007)

Has any endo looked at you for Adrenal Insuffiency??? That really messed with me and people thought i was paranoid and my Endo even in the past even accused me of a being a binger and purger from being soo think and he thought i was having panic attacks. I have Hashimoto's with TPO at 2,000. And Addison's, Adrenal Insufficiency. My Adrenal probably was missed intially and I kept getting treated for me thyroid. Flornief works awesome on Heart palpitations. Do you ever get dizzy when you stand up? How is your weight?


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## bells84 (Nov 24, 2009)

The weight is becoming a real issue for me. I have tried to lose it so many ways, jenny craig, weight watcher, xenical, personal dietician etc... i usually manage to lose some weight at the very begining more so from shock to my system then anthing, and they by 3 weeks into it i've plateaued and by 5-6 weeks have gained weight. The jenny consultant , dietician and weight watcher pople all told me to get my thyroid check.

I do actually get dizzy/ about to pass out feeling when i stand up. It's not 100 % of the time but frequent enough i get up slowly now. is that a symptom of adrenal issues? i'll have to look it up so i can talk to the doctor about it. thanks for the idea.


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## hashigirl (Apr 30, 2007)

Yes, standing up and getting dizzy like you are going to faint is a symptom of Adrenal Insufficiency, it's called Orthostatic Hypotension. Orthostatic Hypostatic Hypotension is from Adrenal Failure, i do take medication for that and it works really really well. Beware, it's a hard diagnosis to make but doable, I am not a doctor or anything, but you can ask your Endocrinologist or a good Cardiologist to be screened Orthostatic Hypotension, you might need to get yourself a blood pressure machine and when you are feeling like you are going to faint from standing up, that is the time to check your blood pressure before and after standing up, and then also make a note of your pulse to check a rise in pulse AND check for a drop in blood pressure while standing, it's key. I hope this helps. Feel free to ask any questions.


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## themainemom (Oct 9, 2009)

Just wanted to post that I have been going through something very similar. Had a tsh at the low end and a ft4 just over the high end and was having some very INTENSE hyper symptoms including INTENSE ANXIETY, no appetite, weight loss, insomnia. I have TPO antibodies and TSI also have had the Uptake done. When I went to the endo she diagnosed me with Hashtoxicosis, assured me that my symptoms were due to the hyper phase, that the uptake was high at 40%, but then after my labs came back "normal" she refused to give me any medication. My mom was LIVID too. So I too am waiting and searching to find someone to HELP ME! I have no answers either, but know what you're going through.:sad0047:


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## Andros (Aug 26, 2009)

themainemom said:


> Just wanted to post that I have been going through something very similar. Had a tsh at the low end and a ft4 just over the high end and was having some very INTENSE hyper symptoms including INTENSE ANXIETY, no appetite, weight loss, insomnia. I have TPO antibodies and TSI also have had the Uptake done. When I went to the endo she diagnosed me with Hashtoxicosis, assured me that my symptoms were due to the hyper phase, that the uptake was high at 40%, but then after my labs came back "normal" she refused to give me any medication. My mom was LIVID too. So I too am waiting and searching to find someone to HELP ME! I have no answers either, but know what you're going through.:sad0047:


Good to hear from you. What a mess, huh? Don't give up; we must push forward on this. You will get treatment. It narrows done it seems to finding the right doctor.

I feel bad for you (and all the others here also.)


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## bells84 (Nov 24, 2009)

hashigirl said:


> Yes, standing up and getting dizzy like you are going to faint is a symptom of Adrenal Insufficiency, it's called Orthostatic Hypotension. Orthostatic Hypostatic Hypotension is from Adrenal Failure, i do take medication for that and it works really really well. Beware, it's a hard diagnosis to make but doable, I am not a doctor or anything, but you can ask your Endocrinologist or a good Cardiologist to be screened Orthostatic Hypotension, you might need to get yourself a blood pressure machine and when you are feeling like you are going to faint from standing up, that is the time to check your blood pressure before and after standing up, and then also make a note of your pulse to check a rise in pulse AND check for a drop in blood pressure while standing, it's key. I hope this helps. Feel free to ask any questions.


Hey hashigirl i'm definately going to be asking about the hypotension screening. already have a bp monitor at home as mom has very low bp and dad had sky high.

I've been looking into the adrenal stuff. i definately meet the symptoms for adrenal fatigue but the issue is currently it's not recognised by most doctors. i'm going to work on a change of diet, destressing my life and boosting vitamin intake. that seems to be the general consensis between naturopaths that do recognise adrenal failure. This seems to be mainly caused by stress, and that definately has been plentiful these past 2 years, both my dad and grandfather died 9 days apart in august after both fighting cancer for almost 2 years.
Step 1 for destressing- quit job and go back to school- last day this friday and start school jan 4th after a month of doing nothing but relaxing and hanging with family.

did you go through weight gain and hypothyroid-like symptoms before the normal addison's symptoms set in? they seem to be more unable to gain weight/ hyper thyroid symptoms or atleast what i can find.


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## hashigirl (Apr 30, 2007)

YES, I DID GO THROUGH HYPOTHYROID AND WEIGHT GAIN BEFORE ADDISON"s SYMPTOMS SET IN. I didn't even see the Addisons' Coming!


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## sherri_o (Dec 5, 2009)

Hi Hashigirl,

I'm brand new to this board. Just wanted to drop you a quick note to let you know there are so many people in exactly the same boat as you. My sister is hypo and I was just dianosed with hyper (Hashi-toxicosis) today. Luckily it only took me 2 endo's to get to a diagnosis. But the amount of time that I suffered needlessly is enormous. 

Just hang in there and keep doing what you're doing. It sounds like you have already figured out that you have to stay on top of these doctors. I don't know if it's because we're women or our symptoms don't seem specific enough or what. But I've had almost every single hyperthyroid symptom, only all my labs were just slightly inside the normal range so I got no treatment for a very long time. It is so frustrating as you know.

Don't rest until you get a satisfactory answer. And if that means changing drs, then do that, again and again if you have to. Clearly you have some sort of thyroid disorder, with several abnormal lab results. And if you're symptoms are in line w/hypothyroid, I'm not sure why they don't just dx and treat you!

In recent years, there has been some debate within the endocrine community re: what the normal range of TSH should be. I read on the internet that in 2002, the American Association of Clinical Endocrinologists recommended that the normal TSH range be changed to where the upper range of normal is 3! My sister is 4.4 and she gained 30 pounds in the last couple of years. (w/o any change to diet or exercise) But since her GP's lab range said that 5 is normal, she hasn't been referred to an endo yet. I told her (since she has a PPO and can go to any specialist she wants) to immediately refer herself to an endo. (and when choosing one, ask them what they consider to be the normal TSH range) She is suffering needlessly like so many others. This is truly a travesty!

I know you will eventually find the right dr who will listen to you and consider all your symptoms and treat you. I pray that is soon. I just started my antithyroid med today and within 2 hours of starting even a low dose, the tremors in my hands stopped. I feel like a different person already. Heart rate is normal. No more sweating. What I really can't wait for is for my weight to go back to normal. My weight is down drastically and, no matter what I eat, I can't gain it back. I look emaciated and don't even feel comfortable undressing in front of anyone. But I pray that will change soon now that I'm actually being treated. 

I hope that your quest comes to a very successful end soon where you receive actual treatment and can start to feel normal and good! I don't know what the trouble is with endocrinologists diagnosing thyroid issues. (It is their specialty, for God's sake!) It honestly doesn't seem that complicated to me. (If I was 10 years younger, I swear I'd go back to medical school and become and endocrinologist!)

Any way, will check back on this thread to see how you're progressing!

Best,

 Sherri


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## Andros (Aug 26, 2009)

sherri_o said:


> Hi Hashigirl,
> 
> I'm brand new to this board. Just wanted to drop you a quick note to let you know there are so many people in exactly the same boat as you. My sister is hypo and I was just dianosed with hyper (Hashi-toxicosis) today. Luckily it only took me 2 endo's to get to a diagnosis. But the amount of time that I suffered needlessly is enormous.
> 
> ...


Hey, Sherri! Welcome and thank you for your introduction and upbeat posting which I am sure will encourage others a lot!!

We could use that around here!!


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## hashigirl (Apr 30, 2007)

To put my experience simply, no one should have to get misdiagnosed with Panic Disorder when they have Adrenal Insuffiency. That is what happened to me. Since I started taking Florinef, I have never had dizziness or heart palps again for the first time in 20 years. Honestly, I could have died from the misdiagnosis. And Thank God, my problem was found. I hope this inspires others.


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## Andros (Aug 26, 2009)

hashigirl said:


> To put my experience simply, no one should have to get misdiagnosed with Panic Disorder when they have Adrenal Insuffiency. That is what happened to me. Since I started taking Florinef, I have never had dizziness or heart palps again for the first time in 20 years. Honestly, I could have died from the misdiagnosis. And Thank God, my problem was found. I hope this inspires others.


I speak for everyone, Hashigirl...................; it does inspire us!!! You have been through the fire though.
Hugs,


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## hashigirl (Apr 30, 2007)

Thanks Sherri, Huggs to you! I just wonder how many more are out there with undiagnosed or untreated adrenal problems suffering getting written off as a mental disorder, sad, but it happens. If anyone has questions, please feel free to ask me.


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## bells84 (Nov 24, 2009)

Hi all!!

Thought I would give you an update since I saw my family doctor today. He didn't seem very happy to see me at first and did try the "you have a bunch of symptoms that could add up to anything and your thyroid tests come back normal". This only served to peeve me off more, and make me more insistant that something was wrong with me. Being frustrated plays with my emotions big time, so inevitably i ended up crying in his office in front of my mom and the doctor trying to explain to him that i know something is wrong with me, and it not all a mental issue. I admit i've been under alot of stress lately so that is probably compounding the issue, but my point to the doctor was you have to have an issue first so the stress has something to compound.

So i go in tomorrow for a loop monitor for my heart to try to figure out what is going on. I'm still getting the random spikes in heart rate, but not for as long as before luckily. It seems to happen more often when something scares me (hyper reaction to adrenaline maybe??) since i can spend all day running up and down stairs or power black friday shopping and be fine.

I also had some blood work today consisting of CBC, HBA1c, ESR, ANA, and cold agglutinin (this one seems kind of rare the tech had never had to draw blood for this before and they had a hell of a time finding the right code for the lab!!) Hopefully this will shed some light on the issue. My family doctor still says i don't have any auto immune issues, but i can't help but notice that 3 out of the 5 tests are for different auto immune issues.

As for now a diagnosis still remains #1 on my christmas list. lol


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## Andros (Aug 26, 2009)

bells84 said:


> Hi all!!
> 
> Thought I would give you an update since I saw my family doctor today. He didn't seem very happy to see me at first and did try the "you have a bunch of symptoms that could add up to anything and your thyroid tests come back normal". This only served to peeve me off more, and make me more insistant that something was wrong with me. Being frustrated plays with my emotions big time, so inevitably i ended up crying in his office in front of my mom and the doctor trying to explain to him that i know something is wrong with me, and it not all a mental issue. I admit i've been under alot of stress lately so that is probably compounding the issue, but my point to the doctor was you have to have an issue first so the stress has something to compound.
> 
> ...


Soooooooooooooo; I take it your doctor won't run TPO, TSI, Antithyroglobulin Ab, all of which are antibodies' indigenous to the thyroid?

The reason you are fine when you are power shopping or whatever is that you are burning up the excess T3 (active hormone) but let me assure you, your body cannot withstand that forever.

If I were in your shoes, I would pay out of pocket for the above tests. You can look them up here........

http://www.labtestsonline.org/

PS: I just went back through your thread. You "do" have antibodies (TPO and Thyroglobulin Ab); therefore, you "do" have autoimmune thyroid disease.


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## bells84 (Nov 24, 2009)

Hey Andros,

So far no more thyroid tests on the horizon but i think this heart monitor may change that. I have the Loop recorder not the holter monitor so it only kicks in if my heart does something random or if i push the record button because i feel weird. It does monitor my heart the entire time though. my mom and went to bring christmas presents to my aunt today after getting the loop hooked up, it's a 3 hour drive each way so i naturally fell asleep in the car both times. Each time my mom woke me up tell me i was beeping and ringing, signs that the monitor had just recorded something strange. the whole rest of the day it didn't go off even when i was running briefly. I do notice i have more heart issues when i am stationary, so like you mentioned a build up of t3 is definately possible.

still waiting for blood test results i'm not sure if they are going to wait until the heart montior tests are back. i really hope not as the lady said i definately have this thing until at least the 15th but possibly until the new year. yuck. through research though i have discovered that some of the blood tests can be used to identify thyroiditis in a round about way. so maybe i'll have some luck with that


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## Andros (Aug 26, 2009)

bells84 said:


> Hey Andros,
> 
> So far no more thyroid tests on the horizon but i think this heart monitor may change that. I have the Loop recorder not the holter monitor so it only kicks in if my heart does something random or if i push the record button because i feel weird. It does monitor my heart the entire time though. my mom and went to bring christmas presents to my aunt today after getting the loop hooked up, it's a 3 hour drive each way so i naturally fell asleep in the car both times. Each time my mom woke me up tell me i was beeping and ringing, signs that the monitor had just recorded something strange. the whole rest of the day it didn't go off even when i was running briefly. I do notice i have more heart issues when i am stationary, so like you mentioned a build up of t3 is definately possible.
> 
> still waiting for blood test results i'm not sure if they are going to wait until the heart montior tests are back. i really hope not as the lady said i definately have this thing until at least the 15th but possibly until the new year. yuck. through research though i have discovered that some of the blood tests can be used to identify thyroiditis in a round about way. so maybe i'll have some luck with that


I sure hope so. Even though the holidays will be busy, please keep in touch w/ us here so we know how you are doing. Sadly, sickness does not take a holiday.


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## bells84 (Nov 24, 2009)

So here is a little update. I turned 25 on dec 14th, which was also the same day my doctor decided to call with my blood test results. CBC, HB1Ac and ANA according to doc all normal still have to see numbers for my self. But esr was 75 normal is 0-20 and my crp was 24.4 normal 0-10. GP finally admitted maybe i was right and there is something wrong (best b-day present of the day!! lol). So now i got off to a rheumatologist in the new year armed with a stack of test results and hopefully they can shed some light on the puzzle that is me. I'm honestly starting to think the full answer is going to involve more then one issue like is seems happens so often.


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## Andros (Aug 26, 2009)

bells84 said:


> So here is a little update. I turned 25 on dec 14th, which was also the same day my doctor decided to call with my blood test results. CBC, HB1Ac and ANA according to doc all normal still have to see numbers for my self. But esr was 75 normal is 0-20 and my crp was 24.4 normal 0-10. GP finally admitted maybe i was right and there is something wrong (best b-day present of the day!! lol). So now i got off to a rheumatologist in the new year armed with a stack of test results and hopefully they can shed some light on the puzzle that is me. I'm honestly starting to think the full answer is going to involve more then one issue like is seems happens so often.


Hi! Clearly you have a lot of inflamation going on! That is a clue that autoimmune is a probable cause.

I take it the doctor refused to run these tests? TPO, TSI, Antithyroglobulin Ab.

If you are being referred out to rhuemy, that is good. My doctor is a rheumatologist/immunologist. They "do" know their stuff. I am hopeful about this for you.

Happy Birthday, friend!!!arty0006:


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