New questions for anyone about thyroid

iVillage Member
Registered: 11-16-2004
New questions for anyone about thyroid
8
Thu, 12-09-2004 - 7:33pm

Hi All,

I need advice. I saw the FNP today. Both my last test results for my thyroid now have me at negative 0.01. Before I started the thyroid meds I was at 6.78 H. She said I need to stop taking them because while my TSH is showing that low, the T3 and T4 and within normal range and they aren't letting my thyroid do it's job now???? Also told her AGAIN how my joints ache and how tired....exhausted I am. She said that doesn't have anything to do with a thyroid condition. She said she wanted me to go on an anti-depressant because I have been sick for so long now that my ceratonin (sp) levels are completly out of whack and not letting me get all I need when I do sleep. I told her NO to the anti-depressant. I take 1 mg Zanax at night and according to my medical book, that has all the ceratonin in it I need. I told her this and she doens't believe that.

She also wanted to do a sleep test on me and again I told her that was not an issue. That before my throat blew up like a baloon and I couldn't talk for anything, I was fine as far as energy! And now that my thyroid is completly out of whack I hurt all over, start out taking a shower but end up taking a bath wioth all the hair loss, ache all over, feel like my body is just too heavy for me to support and I am thouroughly exhausted if I do anything more than get up and out of bed UNLESS I can sleep for more than 10 hours.

She did agree to retest my thyroid antyi bodies and see what they are doing and she is testing me for RA. I have to go off the thyroid meds for a week before hand so they are out of my system and she can get a true reading on everything.

What do you all think? I am still a newbie at this and don't know who or what to believe anymore.

Thanks,
Sandy

Avatar for cl_calley7
iVillage Member
Registered: 03-20-2003
Thu, 12-09-2004 - 9:09pm

Hi Sandy,


I can see where this is very confusing for you.

 

Calley7

iVillage Member
Registered: 11-09-2001
Thu, 12-09-2004 - 11:19pm

Hi Sandy - I think you need to see a new doctor. Have all your test results sent to their office or have all new tests done! It sounds as if you're overmedicated. If you started with a TSH of 6.78 and are now down that low, the medication is doing it's job of supplying you with thryoid hormone. Achy joints are most definitely a symptoms of hypothyroid! And the fatigue is a classic symptom. It infuriates me that doctors can't seem to learn what hypothyroid conditions and symptoms look like. And in the meantime, we all suffer because of it.

So that is my advice. I don't mean to sound harsh but really, this doctor is doing you a great disservice. The average number of doctors most hypo patients have to see before getting the right diagnosis and treatment is 3! So now you're one down, two to go. :)

And perhaps the issue is that you aren't able to use the hormone that you're body is getting, which is a problem with T4 conversion - so that a separate T3 supplement is needed. Just a thought. I'm not a doctor and certainly not an expert but I do know enough to know that a new doctor is the best chance you have of getting properly diagnosed and treated. Hope this helps! Cathy :)

iVillage Member
Registered: 11-16-2004
Fri, 12-10-2004 - 6:51pm

Thanks for replying. Whether it makes a difference or not, I do NOT see a doctor. I see a FNP (family nurse practitioner). I am not sure that I feel completly comfortable with her treating me for this. She has me off the thyroid meds for a week, then do more bloodwork and go back a week after that to discuss this further. Yeah, I went from Hypo to Hyper and still the symptoms persiost. Maybe there is no winning with this. Do they only do an ultrasound when you have a nodule? I have been to an Endo who WANTS my levels to stay at 0.01 for awhile. I didn't like him. He was more concerned with my weight than my thyroid. Wouldn't even talk to me about my thyroid as a matter of fact. ONly that I need to lose al lthis weight. If I may say so, I am NOT that overweight. 25 pounds now. Not enough for gastric bypass that he wants to do on me anyway.

It will be 2 weeks before I know anything more so I will post again then with another update. Right now I am trying to find out somethings on my kid. 13 and diagnosed with a peptic ulcer and an enlarged spleen that the FNP says we should do nothing about. The spleen anyway. The Ulcer we are treaing with prevacid. Not sure that is enough. I asked her why do nothing for an enlarged spleen and she said it's because there isn't anything to be done about an enlarged spleen.

Thanks for your help. Tis thyroid stuff is so confusing.
Sandy

iVillage Member
Registered: 11-09-2001
Sat, 12-11-2004 - 11:36am

Hi Sandy - I know it's difficult to deal with these issues. It's even worse when we don't have a doctor that we can trust and depend on. I really think that neither one of your doctors (FNP) sounds capable. I would try for a new endo for you and a second opinion on your son. I don't know anything about an enlarged spleen but have heard - "there's nothing that can be done" - to often and it's usually not true.

Being off the thyroid meds for a week is not a good thing either. It's one thing to reduce the meds so that your overall dose is lower each day but to get them completely out of your system will probably cause you to swing back to hypo and what would be the purpose of that? The whole idea is to maintain the balance that a normal thyroid would have. And yes, the ultrasound is usually done when you have a nodule to see whether or not there is a problem with it. 90% of them turn out to be benign. I have one, my son has one now and we are going for an ultrasound soon for him. Cathy :)

iVillage Member
Registered: 11-09-2001
Sat, 12-11-2004 - 11:41am

Hi again - here are some good articles on an enlarged spleen in children. It seems it can also be a symptom of mononucleosis. Hope these help. Cathy :)

http://kidshealth.org/parent/general/body_basics/spleen_lymphatic_p3.html

http://patients.uptodate.com/topic.asp?file=pedi_hem/5417&title=Chronic+myelogenous+(CML)+Leukemia

http://www.drspock.com/article/0,1510,6065,00.html: If your child has an enlarged spleen, it's essential that he avoid certain activities until his spleen shrinks to its normal size as determined by an experienced healthcare professional (often a matter of weeks following a mono infection). Actions he should be restricted from doing:

roughhousing

contact sports of any kind (such as tackle football, wrestling)

bicycle or scooter riding, because of the risk of handlebar injuries to the abdomen

any activity that could result in a fall or direct blow to the abdomen

vigorous exercise of any sort

heavy lifting.

iVillage Member
Registered: 11-16-2004
Sun, 12-12-2004 - 10:42pm

Thank you so much for the links for my son. I have been searching the web for any information on his condition. I do not like the fact that our FNP just wants to "do nothing" for this. It bothers me that he could be seriously hurt if his spleen gets hit. While a normal spleen is 12 cm, his is 13.6 cm. Not too enlarged. What they call mildly enlarged. I am waiting for bloodwork results tomorrow to see if anything shows on those and if not, then I want a second opinion from a specialist. For the record, my son had mono in 1st grade....7 years ago. His pediatrician said that he could never get it again. It was like chicken pox. Once you get it thats it. But I have read all over the web that you can get mono more than once.

As far as me, I thought going off the thyroid meds completly was stupid. My FNP wants to see if my thyroid levels are back to normal??!!... if I go off the meds. If I was hypo before, then it should be the same off the meds, right? She said at our last visit that if I didn't feel better while taking the meds, then they were doing me no good and there is no reason to take them. I went to one ENDO with horrible results. I DO NOT want to go back to another ENDO just to be told I am grossly obese and have my thyroid problem completly ignored. What will/would happen if I do nothing about my hypothyroism?

Thanks, Sandy

iVillage Member
Registered: 11-09-2001
Mon, 12-13-2004 - 10:35am

Hi Sandy - I've never heard that you can't get mono more than once! It's a virus, isn't it? I've known people who have gotten it repeatedly. Some doctors ... there just isn't any way to describe them. And it seems like you've gotten your share of the worst!!!

You have to have thyroid hormone if you're hypo. You're risking serious health effects if you don't take it over time. I know how awful I felt before I was diagnosed and I would never return to that state of health. It includes depression, weepiness, heavy periods and PMS symptoms, high cholesterol, high blood pressure, dry skin, dry hair, brittle nails, hair loss - including eyebrows and eyelashes, irritability, trouble sleeping, the list is almost endless!! Not to mention the extreme overwhelming fatigue and the weight gain. Not good things at all. Plus a slower metabolism overall effects every major organ and system in your body.

It seems to me that there is a simple solution to your situation and that is to stay on the medication but have your FNP - or somebody - lower the dose. What are you currently taking? Or what was it that you were taking before going off it?

I don't even think a week is long enough to have all the thyroid hormone out of your system. This FNP is too incompetent. I know how awful it is to be blamed for your condition and for your weight but you have to get the determination to try one more time and find yourself a good doctor. Try www.thyroid-info.com for their doctor directory. Ask around to everyone you know. A good GP with experience in thyroid conditions could even help. Or an osteopath - some here have had good experiences with this type of doctor.
The longer you wait on this, the longer it will take you to recover. The sooner you get someone good caring for you, the sooner you'll feel better and begin to lose weight, too. Sometimes a baritric doctor might be good since they specialize in weight loss with thyroid-related conditions.

I was undiagnosed for close to 3 years and perhaps longer and once I began medication, I was at about 70% of recovery until I found a great doctor who gave me the right dose of medication and now I'm at 99.9% :) Always leaving room for improvement!! LOL! It's an uphill battle, I agree, but it's well worth it. Cathy :)

iVillage Member
Registered: 11-16-2004
Mon, 12-13-2004 - 7:08pm

Cathy,

Thanks for another opinion regarding mono. Or at least, the same one I have been getting on the net. I have been waiting all day for my son's lab results with no word yet. It's 4:00 pm and they were in on friday. Maybe he is having mono again. I don't know.

As far as me...I was on Levoxyl 50mcg. I was hypo 6.78H before meds, then negative 0.01 after meds BUT my T3 and T4 are normal now so she thinks I shouldn't take it anymore. There has never been an adjustment to the meds. And the Endo I did consult knew that I was at 0.01 and said "I want to keep you there for awhile. Don't mess with the medication." So I don't know.

I have many symptoms you mentioned, but not all. And I kept wondering why my nails were so bad and breaking at the slightest tap. They are literally shredding at any chance. Now I know why. I don't know if on thursday the thyroid meds will be out of my system but I can tell you that all I did today was work on a computer for 5 hours. Sitting not heavy lifting or anything strenuous and I am SOOOOOOOO TIRED!!! Seems more than last week cause my muscles and joints are achy. Knowing the difference now, I think the ache was better while I was on them. But I don't know.

If the anti-bodies are normal on the tests then the FNP doesn't want me back on the meds. Says I don't need them. From Hypo to Hyper and now no meds. I will know more next week when I do my lab work and get the results. But I don't see her having me back on them. I am nervous to go to another Endo and the head of the practice I go to is a DO, but I am not his patient and he won't see me.

Thanks for the heads up on everything and I will check in with other results. Thanks for the links and info on mono. Don't know where the peditrician got the idea once you get mono you can never get it again.

Sandy