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preparing for my endo referral in 2 days...

Hey everyone,

Wondered if anyone can help me in what the important things to stress to the endocrinologist i am seeing this thursday are:

The history of my TSH levels are:

Dec 2008: 7.5
Feb 2009: 5.8
May 2009: 5.7
September 2009: 7.2
October 2009: 5.7

obviously they are not consistant, I have just had my Thyroid antibodies tested and the levels are normal- ruling out anything autoimmune. I have had a full blood work done for which everything else was ok.

I have over the last year suffered from: muscle weakness, tiredness, bad joint pain, extreme coldness in feet hands and nose, have gone from u.k size 4 to u.k size 8 (which doesnt bother me as i have always been too thin!), a very slight numbess in my left leg (and sometimes in my left arm), irregular periods (that are heavier than they used to be), TMJ pain (dont know if this is related or independent from thyroid problems), noticed a lot of hair falls out in the shower and when brushing, brittle nails, dry itchy eyes, vertigo (although i feel this is more related to my TMJ and grinding my teeth in my sleep).

my main worry is that my G.P keeps saying, oh, your not much over the lab range (which upper limit is 5.5) and i get so annoyed as it is still over the threshold, even if 'not by much'. She keeps trying to prescribe me mild forms of an antidepressant for my anxiety, but i keep trying to tell her that I seem so anxious because I have been feeling like this for a YEAR now and no one is doing anything.

I am worried the endo will say the same thing? Does anyone know whether they use more sensitive lab ranges or will maybe trial me on some kind of meds? I am just wondering what to expect really, and if anyone has any advice as to what I can say to insist my case.

thanks in advance for any help anyone can give,

Clare :-)
45 Responses
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649848 tn?1534633700
COMMUNITY LEADER
As I said, it takes 4-6 weeks for the med to reach full potential, and you're testing at 4 weeks, so the longer you put off taking the med, the testing becomes more premature.  Additionally, your symptoms aren't going to go away if you don't take the medication.

If you're scared to take the pill, talk to your doctor about splitting it in half for a few days.

I meant for you to start a new thread when you got your next labs, but I see you started one now, so I'm going link this thread to it, so members won't be asking you the same things I did.
Helpful - 0
2121656 tn?1395674749
No, I haven't started the medicine yet. PCP just informed me of lab results & called into pharmacy yesterday. I will definitely have him retest the Free T3 also. I'm actually scared to take the medicine, after some real bad experience with other medicines. Thanks again for your help. I will keep you posted and start a new thread. Have a good evening.
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649848 tn?1534633700
COMMUNITY LEADER
This thread is really old and really long; it might be best if you start a new thread, when you post your next labs, so we keep your issues separate from others on the thread.  That will also help your issues get more attention than they will on this thread.
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649848 tn?1534633700
COMMUNITY LEADER
It takes 4-6 weeks for the med to reach full potential in your blood, so testing at 4 weeks "may" be a bit premature, but we'll see what the results are, then.  Do be sure to insist on Free T3..

Have you started taking the med yet?  If you're retesting in 4 weeks, you need to start it right away, in order for it to even begin to make a difference in your labs.

All of your symptoms are indicating hypo.
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2121656 tn?1395674749
I'm sorry, another symptom I have is very cold at times. It just dawned on me, my daughter & grandchildren were visiting from out of town and we went out to dinner. Well, it was 86 degrees outside and I found myself having to wear a sweater outside and was comfortable.
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2121656 tn?1395674749
I'm sorry, I forgot to mention that my PCP is retesting in 4 wks. into taking the Levothyroxine. I've lab test every 3 months for yrs. now due to high cholesterol  type 2 diabetes. My PCP is wonderful and seems to be very knowledgeable & that's probably why he's always chosen to add the tsh & Free T4 to lab test. Due to relocating to another city, I didn't make my June labs. So, that's why they jump from March till Aug. I've been diagnosed with Hashimoto's with autoimmune disease due to having high TPO's in 2012. So, for my symptoms and not realizing that it's probably caused from the thyroid issue until I just received the above results are, very very depressed (thought it was from the relocation for my husbands job), to be honest don't care about life anymore at all. For some reason, I just want to give all my belongings away. I cry a lot ect. my PCP put me on Lexapro last month thinking because of everything snowballing at once was the reason for me feeling the way I do. Now, learning my thyroid results if that could be the cause. Anyhow, I'm always tierd, but have insomnia and can't get to sleep till like 5 am. Very irritable, I started about a month ago waking up with muscle spasms in my legs. I had a bad bout for 2 days with indigestion real bad. Heart palpatations, headaches, trouble concentrating, memory loss (which I was on lipitor for yrs. and have had that issue for yrs. so not sure if it's related to the thyroid or not).  I just don't feel normal anymore. I'm real new to all of this and trying to understand it all, but having problems understanding how the thyroid works even after reading on it. I'm so thankful that this forum is here with a lot of knowledgeable people like yourself to help understand what's going on in my body.
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649848 tn?1534633700
COMMUNITY LEADER
I don't know that you need to wait to start your med until you get an FT3; your doctor should have scheduled you for a recheck in 5-6 weeks, so insist on it then.  FT3/FT4 and TSH should all be done at the time, so you get a picture of what was in THAT blood draw.  Doesn't correlate well, when you're trying to compare multiple blood draws for the individual parameters.

Your test results from March looked good, actually.  Your FT4 might have been a bit low, but TSH and FT3 were both really good.  Were you having symptoms, then?

What symptoms are you having now?
Helpful - 0
2121656 tn?1395674749
I just realized that I probably would also have a repeated blood test for the TSH & FT 4 also to collaborate together with the results of my FT 3? not sure if he'll do a repeat test or if insurance would pay for it, but I will try.
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2121656 tn?1395674749
Hi there! Thanks for the quick response. I remember being told that my FT 3 level should also be tested along with the tsh & FT4. Unfortunately, as we know a lot of dr.'s won't test the FT 3 all the time. I guess it's a costly test & I'm learning that some Dr.'s care more about saving Ins. Companies money, than their patient. Anyhow, I had to beg my PCP to test my FT 3 back in March and these were my results:  FT 3 was 3.04 range 1.71-3.71, Free T4 was 1.03 range 0.70-1.48 and my tsh level was1.286 range 0.350-4.940. Do you think maybe I should've my FT 3 level checked again before starting the hormone replacement and wait for the results? I can try by begging him to recheck it again. I did just find a Endocrinologist where we relocated to. Unfortunately, I can't get in until Oct.
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649848 tn?1534633700
COMMUNITY LEADER
Yes, your TSH is higher than normal.  It's really too bad you didn't have the FT3, because that's the active thyroid hormone and correlates best with symptoms.  It should be tested every time you have a TSH and FT4.  

Yes, your doctor has started you on the correct medication.  Typically, one is started on a T4 only med and if it's determined that you don't adequately convert FT4 to FT3, a T3 med, such as cytomel would be added.  The only way to tell if you are converting adequately is to have the FT3 done, along with the FT4.
Helpful - 0
2121656 tn?1395674749
I'm back & hoping that you or anyone can help me in deciding if what the Dr. just put me on is of help for my high TSH levels, that are apparently probably the cause of some issue's I'm having at this time. I'm sorry that I haven't been participating in the forum. However, between relocating to another city, recovering from a medical procedure that lead into complications, ect. has set me into a depression, not to mention other things that's been going on in my life. Well, enough of that for now. First and for most, I'm in need of a Endocrinologist in the Buffalo NY area, if anyone knows of a good one. I'd be greatly appreciated if they'd share some names with me. goolaara, I chose to address my question to you, because you've helped me so much in the past with learning about the thyroid. However, anyone feel free to jump in. So, besides having now that I know a lot of issue's like depression, muscle spasms in my legs, insomnia, ect. being caused from my thyroid disease. I was had labs repeated. Results, TSH 7.41 range 0.40-4.50 and T4 Free 1.0 range 0.8-1.8. PCP didn't check my T3 level this time. Well, the Dr. has started me on Levothyroxine 0.25 mgs. due to the high TSH level. I know I've read that when taking thyroid replacement to not just take one for the T4 alone. Please advise if this is the proper procedure to just take this one replacement by itself. I'm at total loss and to be honest, real scared not only about this disease, but taking this medicine. Thank you once again for all your help & advice.
Helpful - 0
2121656 tn?1395674749
Sorry, I tend to get real confused at times. Scratch that information above pertaining to my results stating they were from 12/24/02. Those were actually my recent results in 4/2012. Sorry for any confusion. Unfortunately, I don't have a copy of my sonogram from 2002, and wouldn't dare ask for them at this time, lol! I say laugh out loud, because I think with me being concerned about my health issue's and keep asking the PCP for results, & test regarding my thyroid, liver and a lump I discovered under my right rib cage in the back area because of having stinging, burning & throbbing ect. & me not agreeing with him, thinking he's a Endo., Hepatologist and internist. For instance, he tried to tell me that alot of Endo's don't understand the thyroid & that the Free T3 count (when I requested the test) doesn't have a play in the thyroid, but I was able to talk him into testing. Not realizing until, you mentioned above that I've only had the one test of the Free T3 that indeed he didn't run it again. He also said, that Dr.'s wait for the TSH level to go off the charts before providing medicine. Well, I'm learning so much more than he knows about the thyroid. Also, same as with the liver, thinks he knows it all & didn't want me to see a hepatologist, even though I've a fatty liver & high liver enzymes. Which unfortunately, when your liver enzymes are elevated, it's telling you that your liver is injured or damaged. I'm hoping they were high due to the lipitor he had me on. So I can go on & on, but I think you understand what I'm saying. I've become a big believer that we've to watch our for our own health.
Helpful - 0
2121656 tn?1395674749
Good Afternoon, I just wanted to let you know that I did decide to sent a  request  thru portal for a copy of my Thyroid imaging & received the results today. Correction, it was performed on 1/14/03, well I know you were interested in the results. So, here they're. Let me know what you think:

Comparison:  12/24/02 thyroid ultrasound report, so here's my 12/24/02 results first:

Thyroid Sonogram:
The right lobe measures 4.1 x 1.5 x 1.5.  The left lobe measures 3.8 x 1.6 x 1.3 cm.  Heterogeneous thyroid parenchymal echotexture without evidence of a discrete nodule.

Thyroid Imaging-1/14/03:

The patient eceived a 10 mCi Tc99m labeled pertechnetate and a thyroid scan was performed.

FINDINGS:  The thyroid lobes are not enlarged. There is distribution of radiopharmaceutical throughout both lobes uniforml with avid uptake by the thyroid.  No focal areas of abnormal increased or decreased activity is seen.  Because of the small size of the inferior thyroid nodule described on the earlier ultrasound within the left lobe.  It is not surprising that this would not be discretel seen at ultrasoun as it mesured less than 1cm.  

IMPRESSION:

1.  No focal nodule is identified on nuclear medicine thyroid scanning.  There is avid uptake of radiopharmaceutical.

2.  Because of the small size of the nodule seen on the earlier ultrasound of the thyroid 12/24/02.  A nodule measuring less than 1 cm such as this would not be expected to be seen on nuclear scanning.
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Avatar universal
Do you have an appointment scheduled?
Helpful - 0
2121656 tn?1395674749
Good Morning! I'm relieved to know that the radioactive scan performed in 2005, wouldn't have any play in my diagnosis of Hashi's. Yeah, I agree the results to that particular scan would be interesting to see. Per the Endo.'s office, said that my results would've been forwarded to my PCP. Therefore, I'm gonna ask him for it, next time I'm in his office. I don't want to send a request over the portal, because I think they're mad at me for requesting more blood test. I've realized, it really doesn't make a difference being it's was performed in or around 2005. I was anxious in trying to get the radiologist report, to confer with a radiologist if that particular scan would've had a play in me having Hashi's now. As stated above, I did speak with a tech. that does the scan's & with you also confirming it wouldn't of had damaged my thyroid tissue. I'm less stressed about it. Also, I told my husband, would I really want to know. I can deal with that scan not being the cause more than it being. Anyhow, I will definitely share the results with you, once I receive them if my PCP does have them.

Yeah, I never really had a interest in watching Dallas yrs. ago either. I was alot younger & really didn't watch much tv at all. My mom would watch it, if I walked in in the middle of the show I would finish watching with her. I always thought Bobby was cute, lol! Anyhow, when it started up again I am a little more into tv now, so thought I'd watch it and  see how much Bobbie has changed. I must say, it's a very good show.

I did receive a response from my PCP's nurse yesterday afternoon, here it's:

Tammy,
Per Dr. at your next office visit we will check TSH, FT3/FT4, Vitamin D, B-12, Iron, and
CMP check.

I think the CMP check, is pertaining to my liver. I know something serious must've showed on 8/2 results pertaining to my liver, because when I asked for the results yesterday. She said, he hasn't reviewed them yet. I was getting the results back the same day, a couple hrs. after the blood draw. So, I think he was putting stats on them. Not sure why it has taking, as of today 7 days and still not having them. I'm real nervous about getting them now. Sometimes, outta sight outta mind. On the other hand, it's my health & I'm anxious to get them.

Just wanted to let you know, you're a lot of support, you don't even know how much you've helped me & relieved my mind.

YOU'RE THE GREATEST!!! :)
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Avatar universal
When you go to endo make sure they listen thyroid can cause you to be anxious but do not let them blame stree or anxiety its an imbalance in hormone
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Avatar universal
Let me know what her further response is.
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Avatar universal
Yes, you are requesting the correct tests.

I really doubt the radioactive scan damaged your thyroid in any way.  Radioactive scans are standard procedure and done all the time.  I've never heard of one damaging anyone's thyroid.  However, it would be interesting to see the results of the scan report...it's too old to be worth a lot now, but since you never went back, it would be interesting to see if the scan found anything relevant.

Oh, I didn't know it had started up again...probably because I never watched it when it was on before.  Hope you enjoyed it.
Helpful - 0
2121656 tn?1395674749
Sorry, it just dawned on me that you asked about Dallas. Yes, Dallas was on yrs. ago, but started up again a couple months back. Last night was the show of the season. Starts up again in Jan.
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2121656 tn?1395674749
This is where I get frustrated with Dr.'s. You would think, they'd be happy to have the patient help them out when they're diagnosed with a illness or disease.

So, Free T3 and Free T4 are the FT3/4 correct? I am requesting the correct test above?

Well, here's my dr.'s response to my request:

Per Dr. we can check these levels at your 3 month. Dr is aware of work up and will do the tests if necessary.

Not sure what that is suppose to mean, by stating he will do the necessary test, seeing that he doesn't believe the FT 3 matter's. I had to push for him in May to order that test. So, here was my response:
I do have a concern regarding my FT3 levels being over the range, with my FT4 being in the lower range in May, and noticed that the FT3 was not rechecked in July. Being that the actual thyroid hormones are the FT3/FT4 and TSH is just a guideline. Would really hate to end up with T3 ToxiCosis. Furthermore, not even realizing that it's the thyroid that's the possible cause till now for alot of former & previous symptoms I've been having for a long long time does give me great concern. Thank you for the quick response. Have a great day!

Haven't received a response as of yet.

Anyhow, like I mentioned above. I've had alot of different symptoms past & present, can't recall for how long now. Per the Dr. it was related to me taking lipitor and my type 2 diabetes. Well, I've been off lipitor for a month now & not feeling. Also, my sugars are excellent, with my change in diet. I'm getting alot of headaches lately, not sure if it's stress from all this or a symptom of the Hashi's.

Something dawned on me last night, I went to a Endocrinologist in 2005, who was very people oriented even her staff, so I wouldn't go back. Anyhow, she ordered some nuclear thyroid scan, where they put a injection (not a IV) in the forearm, and the technician was scanning my thyroid. I really don't know what the purpose of it was for, seeing that I went to her for my diabetes. Anyhow, I'm real concerned (not that it matters now) but curious if by doing that test, it could've killed thyroid tissue and reason for the Hashimoto's now? I called her office, for my results today. Needless to say, they destroyed my records due to being 7 yrs. ago. Again, her staff isn't to nice. I stated why would they destroy medical records & that I never received my thyroid scan results. The nasty receptionist, said I highly doubt that. I said listen, I've no reason to lie and back then was stupid in understanding anything about nuclear medicine or thyroid disease & because of the Dr.'s attitude & her staff, that I never came back for the results. So, I asked her where she would've sent me for the test, to get a copy of the scan, because I can't remember where and actually had just relocated to the city I had it done in due to my husbands job. Anyhow, She told me 2 different places. Well, needless to say, I contacted them & neither place did the scan. I've tried to do some research, to see if that radioactive iodine would be the cause of my thyroid disease now, just for a piece of mind. I guess curious.



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Avatar universal
A lot of doctors don't think FT3 is important because that's what they were taught in med school...not an excuse, in my opinion, but they have been being badly taught for generations.

Many members find that FT4 should be about midrange.  FT3 often has to be upper half to upper third of its range before symptoms are relieved.  That doesn't work for everyone, it's just a "rule of thumb" to shoot for until we find where we feel best.  

Sometimes it takes the antibodies years or even decades to cause enough damage for symptoms to become evident, so it's quite possible you have been have less noticable fluctuations for some time.

Those are the tests you want.  I hope he'll order them all for you.  Just be sure he orders FREE T3 and FREE T4.  If FREE is not specified, they will do total T3 and total T4, and they are not nearly as useful.  

Dallas?  That hasn't been on TV in years.  Or is that something else from what I'm thinking of?
Helpful - 0
2121656 tn?1395674749
Sorry for so many different post, but wanted to share with you, what I just sent to my PCP in testing  regarding my thyroid:

I've been doing research about Hashi's, in which I was diagnosed with. I noticed that my lab test results in May showed that my FT3 was over the range,(it appears that's not good) FT 4 was on the lower end of the range. Anyhow, not sure why having Hashi's, my FT3 was repeated again in July. In my research, having Hashi's, TSH, FT3 & FT4 levels should always be tested at the same time. Therefore, I would like the following tested concerning my thyroid disease:

TSH
Free T3/T4
TSI-to rule out graves also
Vitamin D
Ferritin
B-12
Iron

My PCP has given me access to my chart thru portal. He'll probably wish he never did that, lol!

Ok, I'm gonna go check my sugar & watch a show called Dallas.

You've a good night & I'll probably ttyt
Helpful - 0
2121656 tn?1395674749
Sorry, forgot to add, maybe that's why I've having issue's with my liver now, because of toxins releasing. OMG! I don't know if it's better to not know anything about my health & just live the rest of my life happy vs. knowing & trying to control.

Helpful - 0
2121656 tn?1395674749
Oh boy, now I'm real scared. I didn't understand the what the level's meant, or I could've had my PCP retest. My PCP probably doesn't know as much about Thyroid Disease as he would like. Because he actually tried to tell me, when I was informed on the forum to have my FT3 checked, that that doesn't matter. I insisted in him checking it. When I requested to be referred to a Endocrinologist, he said, you know alot of Endo's. don't really know as much as they claim about Thyroid's. I didn't really respond, just thought. Well, you obviously don't understand it either, it thinking the FT 3 test doesn't matter.

I will definitely do my research & call his office demanding to have all test retested before Oct.

Oh I misspoke, I will definitely, stay on top of what I am learning on the thyroid.

This is so much for me to take in, all these health issue's at once and not knowing which way to go anymore.

So, what is the best readings for FT4, FT3 & TSH?

I wonder if this is why I'm getting alot of headaches, aches, pains, ect
You know I was told yrs. ago that it was the lipitor I was on, that was making affecting my memory (Side effect of lipitor is memory loss) it's probably my thyroid disease, probably have had it for a long time.

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