# Doctor help please



## peaches (Sep 29, 2009)

I'm new to the boards so I'll give you the skinny on my bouts with this disease. I have yet to find a doctor who wants to treat me and lots who want to tell me I have nothing wrong with me but some anxiety. Anyone ever heard that before?
If anyone has any suggestions for a good Endo in the Saint Louis MO area please let me know. I am in dire need of a doctor who will listen.

My story starts about 12 years ago with the unusual case of hives all over my body. After the emergency room trip my family doc had an allergy test done. Nothing. I have had a case of hives at least once a year since then except for the last 5 years. There is no set time of year or a trigger that anyone knows of. 
Jump forward a couple of years. I moved to another state, got a new family doc. She diagnosed me with Idiopathic Urticaria. Translation: You have hives you may never find out what causes them.
Jump forward to the year 2007. (By the way, in 1996 I was diagnosed with McArdle's disease-a type V glycogen storage disease which is genetic, and in 2000 I had a full hysterectomy) I woke up around 2am one morning from a dead sleep to the feeling like someone had just lit me on fire from the inside out, that I was going to lose control of my bowels and wet myself immediately and my upper lip went from normal size to looking like someone had shoved 1/2 a golf ball under it in just two minutes time. Rush to hospital for the ER to say did you get bit by a spider. There was no pain, itching or redness in the area, my lip was just huge. By the time we had reached the ER I was shaking like I had the most severe case of Parkinson's disease anyone had ever seen. The ER gave me benadryll and sent me home. This happened several more times over the next few months except substitute huge lip with rashes. My family doctor referred me to an allergist, who tested me with no results, I didn't even react to the control histamine. None, the less, he started me on 5 different allergy medications.
3 months later it is still happening my weight had jumped from 130lbs to 162lbs and I had added a couple more symptoms(bloating about an hour after I ate.) The allergist, referred me to an Endocrinologist who suggest that I had carcinoid syndrome and that that was very, very bad. He didn't give me much hope. After 2 weeks of "putting my affairs in order" he said I didn't have carcinoid syndrome and referred me to a Neurologist.
In the meantime it was time again for the fun lady doctor visit we so enjoy every year. The nurse practitioner who saw me said that my thyroid felt a bit "generous" to her and ordered an ultrasound. Result: you have a tumor, I am sending you to an ENT. The ENT had the ultrasound repeated, no tumor but you do have Hashimoto's thyroiditis. You should follow up with and Endocrinologist. (not again)
Back to the Neurologist, he said you have nothing neurological wrong with you, you are having anxiety attacks, I a referring you to a Psychiatrist. Where I learned about Klonopin, and relaxation techniques and saw a therapist twice a week for 3 months. 
Meanwhile the Endo said I wouldn't have to do anything with the Hashimoto's for years. No big deal, see ya down the road.
Jump forward to September of this year. I had been managing the "anxiety attacks" on my own. The intensity had decreased quite a bit and I managed to lose back down to 135lbs. Then the attacks started again like before, so I said no more, someone is going to help me I do not have Anxiety disorder it has to be the Hashimoto's and started researching on my own. I insisted on blood work even though my doctor said it wasn't the Hashimotos. The bloodwork showed my T3 at .77 and my TSH at 2.43. About a week later I had a horrendous attack and went right then to the emergency room and insisted on a thyroid blood panel. My T3 was 1.16, my TSH was 6.1 and my Thyroglobulin was <20. I got an appointment with a local Endo who told me once again that it was not my thyroid, none of my symptoms had anything to do with thyroid. He started the whole game over with another Carcinoid test, which was negative. I didn't bother putting my affairs in order this time, but suggested that he might ought to if this was how he treated his patients. He didn't even look at my previous bloodwork or my ultrasound(I had another done one month before which again said Hashimoto's). He didn't even order any thyroid bloodwork of his own. I went to another Endo in St. Louis who did the same told me that he was 100% sure it wasn't a thyroid issue, that none of my symptoms were thyroid related. Except he stuttered when I asked him if hair loss, dry skin, constipation, "hot flashes",depression,nausea,weight gain,tremors,hives and memory fog were symtoms of a thyroid condition. After I pulled out my handy, dandy can of whoop a** and my industrial strength can opener he prescribed me synthroid and follow up bloodwork in 6 weeks.:anim_03:
I write the huge monologue to let people know they are not alone. I have read many cases where people seem to get no help from their doctors. I am still in search of a doctor who will treat the symptoms, not some standard catch all set of numbers most seems to live by. I am learning about this disease and am sure that I will have a long road to walk, but if I am walking forward instead of taking steps back, I will be encouraged.

If anyone knows a good doctor in the Saint Louis area I am definitely open to suggestions.:jumping0047:


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## Andros (Aug 26, 2009)

peaches said:


> I'm new to the boards so I'll give you the skinny on my bouts with this disease. I have yet to find a doctor who wants to treat me and lots who want to tell me I have nothing wrong with me but some anxiety. Anyone ever heard that before?
> If anyone has any suggestions for a good Endo in the Saint Louis MO area please let me know. I am in dire need of a doctor who will listen.
> 
> My story starts about 12 years ago with the unusual case of hives all over my body. After the emergency room trip my family doc had an allergy test done. Nothing. I have had a case of hives at least once a year since then except for the last 5 years. There is no set time of year or a trigger that anyone knows of.
> ...


Peaches..........thank you so much for your story; I read it with great interest and of course you have been horribly dissed by the medical establishment. There is no question of this.

So, fast forward here. Are you currently on Synthroid and if so how much? How often are you having labs and what was your last TSH like? Hve you had the 6 week follow-up yet?

If possible, for future reference, including the ranges are very very important because different labs use different ranges. W/o the ranges, we would only be guessing and I know you would not appreciate that.

Has anyone run TPO (antimicrosomal antibodies) or any other antibodies related to thyroid? I wonder if that Thyroglobulin test was just that or Thyroglobulin Ab?

Has anyone done an ultra-sound or radioactive uptake scan for you?

Do you agree that your thyroid seems enlarged?


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## peaches (Sep 29, 2009)

Andros,

Thank you for your reply.

I have had two ultrasounds. One in 2006 and one this year. Both confirmed Hashimoto's Thyroiditis. Doctors have not been very willing to do thyroid bloodwork on me for some reason. Once they see Anxiety Disorder on your records they seem to assume that I am a Hypochondriac instead of Hypothyroid. This last bout with what I commonly refer to as "the attacks" my family physician referred me to a local Endo after I insisted that he do so. This guy said it wasn't my thyroid and ordered a carcinoid syndrome series of labs. I told him that that was done 2 years ago and it proved not to be this syndrome that I was confident it was the Hashimotos. None the less, he had the labs done and call back to me in a couple of weeks to tell me everything was normal no follow up. I went and got copies of the labs and he had not done one single thyroid test.:aim33: I took myself to another Endo in the big city(St. Louis) and he pretty much told me the same thing. I insisted on medication though so he started me on 100mcg of Levothyroxin daily. I just started taking it this week so I won't go back for labs until around the first week in December. He also did no bloodwork. I have bloodwork results that I insisted that my family doc run on 9/14/2009 and some bloodwork I had the ER do about an hour after a particularly strong "attack". Not the worst I have ever had but bad enough. I wanted to see for myself what my levels were when I was feeling really bad. It cost me. ER visits always do but it was worth it. I got proof that my TSH was rising and falling drastically in short periods of time. I had that done 9/23/2009.
I will have to post back with the exact numbers but my TSH was 2.43 on the 14th and 6.1 on the 23rd. TPO was <20 on both test but no TSI was done so I am wondering if I was swinging Hyper at the time the TPO was done.
I have not had an uptake done. It is hard enough to get the doctor to even give me medication, but the ultrasound did show that one side of my thyroid was a bit larger than the other. 
I find that swallowing feels different to me than it did a few months ago. Like my throat feels a bit "full" when I swallow and I also feel kinda like I have a bit of a sore throat on some days. I don't think I have a goiter but that my thyroid may be a bit swollen. The Endo in the big city said that it felt fine to him and that he thought it was actually small to him. My uncle just went through radiation to shrink his goiter it was so big that he couldn't swallow or hardly breathe and his daughter also is hypo so it does run in my family.


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## Andros (Aug 26, 2009)

peaches said:


> Andros,
> 
> Thank you for your reply.
> 
> ...


Boy, the medical establishment is giving you such a hard time w/this which is really tough when the patient does not feel well and has trouble because of that advocating for themselves.

AACE recommends that TSH guidlines be from 0.3 to 3.0. Most of us feel best down around one or less.

It sounds like your thyroid is inflamed.

What doctor is treating your uncle and your niece? Maybe you could see that doctor?

Well; I do think you are flitting back and forth which is the "norm" with Hashimoto's and Graves' until such time as either one is full-blown.

It is too soon to tell about the Levothyroxine as it does take 6 to 8 weeks for it to build up in the system but how "are" you feeling after one week on it?

The thing that worries me is that we always want to rule out cancer and we always want a definitive diagnosis so that one can be sure we are treating the right thing and chosing the correct treatment protocul.

As far as I know, FNA (fine needle aspiration) is the only way to identify Hashimoto's if "certain" Hurthle cells are present as observed by pathology.

TSI does mean hyper. If you have any at all, that means you are hyper whether the symptoms reflect that or not. But, that does not mean you have Hashi's or Graves'. It only means hyperthyroid.

Hashi's is the FNA and Graves' is diagnosed by the presence of hyper of course but also there must be present "clinically" exophthalmos, goiter, thyrotoxicosis and pretibial myxedema (infiltrative dermopathy.) 3 out of these for gives the diagnosis of Graves' as per Dr. Robert Graves for whom the disease was named after.

Do try to get your ranges w/ your results. They are so helpful because different labs use different ranges.


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## peaches (Sep 29, 2009)

Ok, so I promised to post my lab results so I will do that by date

09/14/2009:

TEST RESULT RANGE

TSH 2.43 0.35-5.50 
FREE T4 1.16 0.80-1.80
T3 TOTAL 77.00 83-200
ANTI-THYRGLB AB <20 0-40 IU
THYR PEROX AB 10 0-34 IU
THYROGLOBULIN 22.3 0.5-55.0

09/24/2009:

TEST RESULT RANGE

THYROXIN 17 11-27
T3 UPTAKE 30.4 24.4-40.5
THYROXINE(T4) 7.4 4.5-12.0
TSH 3RD GEN 6.1 0.27-4.670
T7 CALC 2.5 1.14-3.78
ALT 50 0-31
AST 51 6-32

09/18/2009:

RESULTS OF ULTRASOUND

FINDINGS: The right lobe measures 4.3 x 1.3 x 1.4 cm, the left lobe measures
3.1 x 1.1 x 1.5 cm. The isthmus measures 3.1 mm in thickness.
The gland is inhomogeneous in texture. There is an area of 
increased echogenicity near the superior pole of the left lobe 
without a discrete mass. Normal color flow Doppler is seen.

IMPRESSION: Inhomogeneous gland consistent with Hashimoto's disease. A
dominant mass is not seen.

I don't see anything abnormal with my TPO but a big change in TSH within a 10 day period and with the symptoms that I have I feel that I am suffering from Ha****oxosis. I welcome any opinions from anybody else. Right now I am taking 100 mg of Levothyroxine daily.


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## Andros (Aug 26, 2009)

peaches said:


> Ok, so I promised to post my lab results so I will do that by date
> 
> 09/14/2009:
> 
> ...


First off, I notice ALT and AST over range, has your doctor commented? Here is info.

http://www.labtestsonline.org/understanding/analytes/alt/test.html

http://www.labtestsonline.org/understanding/analytes/alt/test.html

Both have to do w/ the liver.

And wow............yes; what a huge swing on the TSH.

Could you list your symptoms for me? Thyroid results don't always hold true to what the person is feeling at the moment. There appears to be a lag time "sometimes." However, raging antibodies and also some other things can make the person feel hyper.

Actually, your TSH is a long way from being hyper and that Free T4 is below mid-range. Hyper results would be TSH way low like 1 or less (a lot less) and Free T4 at the top of the range or over the range. It's a shame your doc did not do Free T3 which would be most useful in this case.

Clearly, you are in a roller coaster mode. Do you take your thyroxine faithfully at the same time every day? A test can be skewed depending on what time you take your med and what time you get labs.

There is no question that you have autoimmune thyroid disease, the ulta-sound proved that out as well as the presence of antibodies. But how to get you better, that is the question. I and others will help you all we can.


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## peaches (Sep 29, 2009)

These labs were taken before I ever started taking any thyroid medication. The liver labs show damage due to another genetic disease I have. It is called McArdle's disease. It is a Type V glycogen storage disease. Over time I am vulnerable to liver damage. If I do any anerobic exercise I can break down muscle tissue and the liver doesn't filter it well and causes damage.

My symptoms include:

*Hair Loss (my hairdresser is concerned)
*dry skin
*anxiety
*skin flushing "feels kinda like a hot flash but from the inside out)
*headaches
*muscle aches (different from the muscle disease) (feels kinda flu like)
*intolerance to cold ( my temperature holds around 97.4 but swings as low as 96.0) If I am having a flushing feeling my temperature is usually 96.5 or below. If I am *feeling cold with a room temperature of 70 degrees then my body temperature is usually around 98.0 degrees.
*heart pounding but not racing. But sometimes it will race though. I think the difference is swinging from Hyper to Hypo.
*If I am having a more severe attack then my body starts shaking. It starts out like the worst shivering ever then begins to look like I have very bad Parkinson's
*Hives
*rashes
*sometimes if I get a scratch or a bug bite it takes up to 8 weeks for it to heal.
*bad constipation sometimes takes 2 to 3 days to go.
*memory lapses and it is very hard to concentrate
*emotional changes-irritability
*have "attacks"(flushing,shaking,heartpounding,tightness in chest-like some one squeezing my lungs,dizziness-like I could pass out,)these usually happen in the middle of 
night around one or two in the morning.
*I have had my upper lip swell up like a balloon. (this happened with the first attack at 1am) it was a little upsetting.
*Fatigue. Sometimes it is all I can do to stay awake in the middle of the day and my body just feels worn out.


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## Andros (Aug 26, 2009)

peaches said:


> These labs were taken before I ever started taking any thyroid medication. The liver labs show damage due to another genetic disease I have. It is called McArdle's disease. It is a Type V glycogen storage disease. Over time I am vulnerable to liver damage. If I do any anerobic exercise I can break down muscle tissue and the liver doesn't filter it well and causes damage.
> 
> My symptoms include:
> 
> ...


Well, that solves the liver mystery then. And also reassures me that the labs are as they should be w/ the thyroid panel.

So far, we have established a few things. You do have autoimmune thyroid disease and in all probablity it is Hashomoto's. You are having huge swings re TSH in short periods of time and that you do have McArdle's.

Okay, now we will rule in or rule out a few other things here. Since you started the Thyroxine replacement after these labs, have you had a thyroid panel since. I gather no because you did not list them. In truth, 100 mcgs. is a high starting dose. Most start out on 50 t0 88 mcgs. and get labs every 6 to 8 weeks to either titrate up or down as needed. Could be you are on too much thyroxine. That is one possibility.

Are you on any meds that I should know about in order to continue the thought pattern here?

Also, consider getting a ferritin test. "Some" of the symptoms (a greater portion actually) could be attributable to low ferritin. Ferritin is the protein that stores your iron for cellular uptake. If ferritin is low, that could be a problem. It should be 50 to 100 in the range.

Here is info on Ferritin.........

http://www.chemistry.wustl.edu/~edudev/LabTutorials/Ferritin/Ferritin.html

With the swollen lip (and you did mention this before); that is most likely due to some kind of allergy. A friend of mine at the gym had that response from her BP medicine. OMG!! You should have seen her lip! So, I wonder what you may be allergic to?

So, I guess you use sucrose as a helpmate to get through difficult strenous activities?

Lu Anne


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## peaches (Sep 29, 2009)

You are right about the sucrose. I drink 4oz. of orange juice and 2 tsps of sugar every morning so that I can walk the mile from my car into work every morning. It does help with the McArdles. The Endo didn't do any labs just before I started the medication. I am going to get some done on my own just so I can monitor them. I don't think I have ever had a ferritin check before. That would definitely be something to check out.

We don't think the swollen lip was due to an allergy. There was no itching or pain associated with the swelling and it went from normal to swollen in less than two minutes. It also was gone the next day. It was about 2am in the morning and I was sound asleep. I woke up with a horrible flushing feeling, tremors and diahrhea. I looked it up and there have been cases of myxedema associated with thyroid diseases. Not the myxedema madness, just myxedema.

The only other medication I take is Evamist hormone replacement. I had a total hysterectomy in 2000.


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## Andros (Aug 26, 2009)

peaches said:


> You are right about the sucrose. I drink 4oz. of orange juice and 2 tsps of sugar every morning so that I can walk the mile from my car into work every morning. It does help with the McArdles. The Endo didn't do any labs just before I started the medication. I am going to get some done on my own just so I can monitor them. I don't think I have ever had a ferritin check before. That would definitely be something to check out.
> 
> We don't think the swollen lip was due to an allergy. There was no itching or pain associated with the swelling and it went from normal to swollen in less than two minutes. It also was gone the next day. It was about 2am in the morning and I was sound asleep. I woke up with a horrible flushing feeling, tremors and diahrhea. I looked it up and there have been cases of myxedema associated with thyroid diseases. Not the myxedema madness, just myxedema.
> 
> The only other medication I take is Evamist hormone replacement. I had a total hysterectomy in 2000.


Thank you for informing of your Rx's. It always helps to know such things.

Definitely yes; it could have been a myxedema incident. Almost sounds like you had a thyroxine dump. And incidentally, TSH does peak nocturnally.

Well, it would be good to get those labs to see where you are at w/ your thyroid medication and also that ferritin test.

Hugs.............


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