derekliz

Sue, I will definately post an update after my visit to Auburn. I actually just emailed the nurse to see if I can get an appt sooner that Dec. 20th (that seems sooooooooo far away)!!!

These are my lab levels.....what do you think?

All thyroid Antibodies levels negative (would have to pull up those #'s)

7/21/11 TSH .82 (.45-4.5) Free T4 1.2 (0.8-1.0)

7/1/11 TSH .536 (.45-4.5) Free t4 1.03 (.82-1.77) T4 Direct 5.9 (4.5-12.0) Free thyroxine index 2.1 (1.2-4.9) T3 Uptake 35% (24-39)

2/2/11 TSH .594 (.45-4.5) Free T4 1.31 (.82-1.77) Free T3 3.7 (2.0-4.4)

8/5/10 TSH .45 Free T4 1.1 (.8-1.8) Free t3 292 (230-420)

6/23/10 TSH .50 (.40-4.5)

11/3/09 TSH .76 (.40-4.5)

7/23/09 TSH .47 (.40-4.5)

7/15/08 TSH .70 (.40-4.5)

1/3/08 TSH with reflex to T4 0.8 (.40-4.5)

10/4/07 Tsh .64 (.40-4.5)

1/3/07 Tsh .78 (.40-4.5

Thanks Maiysa.....just sent you a PM......how did they finally figure out something was wrong with your thryoid? I have been suspecting this has been a problem for me for several years. I have had bouts of HBP.....on and off meds but all Dr's come back saying that my levels are "Normal". What were the sizes of your nodules?

Thanks for the kind words.....I have been struggling all afternoon!

liz

I forgot to add that I have an appointment in Auburn Alabama December 20th with a POTS specialist and they wanted me off the Beta Blocker 3 days prior to all the testing that they are going to do so they can have more accurate results. I wish that I would have been off the Beta Blocker when the 1st TTT was done. The Dr. In Auburn looks for triggers/chemical causes of POTS/Dysautonomia. The Dr. here in Atlanta is basically trying to get a better picture of what is happening when I am not on the BB. I only had a 24hr. holter monitor by my previous cardiologist....no other testing done prior to the BB except for a CT angiogram which was normal

I felt that the MD today was very knowledgeable and did not want me on any uncessary meds unless they are truly needed. I feel like the Dr in Birmingham has a cut & dry protocol of meds that she places patients on but was specifically told that they will not look for any triggers. I am inclined to go with the Dr. I saw today and then allow the Dr. In Auburn to do all the testing and go from there.....I think???? Ugh....so frustrating and confusing

Naomi, Yes the tachycardia is brought on by standing up.....it was mainly in the morning.....afternoons were fine

Lynne....this is off the Mayo Clinic website about Thyroid Nodules http://www.mayoclini...ECTION=symptoms

Jennifer, this MD seems knowledgeable but then again, I won't know for sure until the results are in from the 30 holter monitor and how he responds.....just don't know

So I went to see a new dr today, an electrophysiologist in Atlanta who treats a few POTS patients and after he looked at my TTT report that I had done at Birmingham on 9/13/11, he feels that I do not have POTS!! I was on 12.5 Metoprolol for about 2 weeks when the TTT was done. Here is the link to my results that I posted here prior http://forums.dinet.org/index.php?/topic/18163-my-results-from-birmingham-autonomic-disorder-center/page__fromsearch__1

He wants me to wean off the beta blocker, do a 30 day holter monitor then repeat the TTT if symptoms continue and if the holter monitor shows any irregularities. He is referring me to an endocrinologist to look into my thyroid nodules further as this may be causing the tachycardia.

So now I am back to square 1 just as I am starting to feel better... the fatigue is the same but my HR has improved significantly.

I have cried my eyes out once again not knowing how I should feel. I am glad that he wants to look into it further but hate the possibility that the elevated HR will come back.

Any thoughts?

Liz

Good Luck!! Thursday can't get here soon enough....I know the feeling and hoping that the news they have for you is GREAT NEWS!!!

Liz

Thanks Katie & Corina for the information. I feel much better now about going off the meds.....I was worried that I was going to crash really bad!!

Liz

Good Luck Sue, hope you get good lab results back soon

liz

I have an appointment to see a physician in Auburn Alabama December 20th. They are going to repeat my TTT, EKG and ECHO that was done in Birmingham on 9/13/11. At that time I have been on Metoprolol for almost 2 weeks. I am currently on 25mg metoprolol before bed and 12.5mg metoprolol in the morning. 25 mg zoloft in the am and .5mg Klonopin at bedtime.

My question.....The nurse in Auburn wants me to be of the metoprolol for 3 days prior to testing and said that I can stop cold turkey and no need to wean off since it is a lower does....I am concerned and was wondering what you guys think?

I have an appt, with an EP in Atlanta tomorrow and will ask him as well. I was under the impression that you should not just stop taking a beta blocker.

Thanks!

Liz

well, I was thinking you were on a beta blocker and that's why they told me mucinex only.....especially cause the other meds can cause tachycardia

yes the iron panel and cbc, metabolic panel. It's strange. I have had strange iron levels before. My ferritin has gone up from 27 to 32 in about 3 months once I started back on my multi vitamin with iron. I have an appt with my neurologist (non pots expert) on Wed so I will ask her then post her comment.

Wonder why your dr is taking so long to get you your results??? I nag my dr's ..hehehe

liz

All of my other ranges on the CBC & Metabolic panel are normal

but the iron binding capacity came back low......what do you think???

My labs are as follows:

hematocrit 39.2 35.0-45.0

hemoglobin 13.5 11.7-15.5

ferritin 32 10-232

% Saturation 46 15-50

Iron, total 97 40-175

Iron Binding capacity 210 (L) 250-450

Dr's says NORMAL....is she correct?

Thanks!

Liz

My doctor told me REGULAR MUCINEX......NOT DM. But definately check with your doctor.....they said no Sudafed or anything else Hope you feel better......I am starting to get the same thing

x0x0x0x

Liz

I dont have this but I would be annoyed too! Too many things are dismissed...what if his or her spouse had this?? Ugh.....continue to be persistent! We are here to help and support you. Those labs should be back in less than 3 days!!

Good luck and i wish i had an answer for.you

Liz

I think you will be good with it. We can be magnesium deficient in the cells but have a normal magnesium serum test. I have always suspected that i am low in magnesium and suffer from menstrual migraines since i was 11...i am 42 now....they are terrible and i am sorry you have had one so long. For temporary relief, i use rubbing alcohol on a washcloth and put one on my forehead and one on the back of my neck....it helps for some strange reason

Magnesium Oxide has a laxative effect but Magnesium Citrate does not. It helps my migraines most of the time. I have been taking it daily and no gut problems at all. You cannot get it at the regular grocery store or walmart. Whole Foods/vitamin stores will have it. I take 400mg at nite (was taking 800). It lowers bp, has a calming effect and helps with headaches among many other things. Do a google search on uses for magnesium....it is amazing!

My dr told me that steroids will break the cycle. Either the medrol dose pack or go to an urgent care for an injection/iv. I hope you feel better soon!!

guess it would help to post the info.....he is on your list of Dr's in Georgia

Dr. Julian Isakow/Cardiovascular Medicine

1700 Hospital South Drive, Suite 409

Austell, Georgia 30106-8159

770-732-9100

Have forgotten to post......I called this Dr's office 2 months ago and he does not Treat or see POTS/Dysauotnomia patients

liz

Was wondering how you are feeling? Are the meds.working? I hope.so

Liz

I dont have any and was wondering the same thing.

Songcanary......how were your other lab values....Tibc/ % saturation/iron/hct/hgb?

I have felt all along that my lower levels of ferritin are causing my symptoms

Best of luck with all the testing. I hope and pray you get the answers you are looking for!

Liz

Ferritin Levels

7/21/11 27 (range 10-232)

6/3/11 29 (range 13-150)

2/15/11 57 (range 10-232)

9/30/10 35.3 (range 10-232)

8/5/10 31 (range 10-232)

iron Levels

7/21/11 101 (range 40-175)

6/3/11 131 (range 35-155)

2/15/11 132 (range 40-175)

Iron Binding

7/21/11 TIBC 255 (range 250-450) % Saturation 40 (range 15-50)

6/3/11 TIBC 236 L (range 250-450) % Saturation 56 H (range 15-50) UIBC 105 L (range 150-375)

2/15/11 TIBC 215 L (range 250-450) % Saturation 61 H (range 15-50)

There was an earlier post about low iron and ferritin levels. My neurologist said (prior to POTS dx) that she likes to see ferritin levels for women at at least 70!!

Was wondering if most people here have low ferritin? So many of the symptoms of low ferritin are those of POTS:

General lethargy

• Unusual fatigue after exercise

• Pica (compulsive eating of non-food items)

• Pagophagia (compulsive eating of ice)

• Depression

• General weakness

• Fast heartbeat

• Palpitations

• Loss of libido

• Brain fog

• Hair loss

• Faintness and breathlessness

• Dizziness

• Long or unusually heavy menstrual periods

If you know your ferritin level and can post, I am really curious

Liz

Thanks so much Mary!! Blessings to you as well