[jamcam66]

#1058884

Please Help…….I do NOT understand my blood labs @ all. Right after the endo’s diagnois, I found this Wonderful website! Everyone talks all these lab numbers & I had none of my labs to look at. So that is when I asked for all my labs from both doctors.

Here’s my story: My general practitioner took blood tests twice & also ordered an ultrasound. (She thought I was hyper after my first lab). 1 month later she did another blood test. She confirmed I was hyper & put me on PTU until I got into the endo she referred me to. My labs on 12/22/12: TSH 0.25 Low. Labs on 1/24/12: TSH 0.12 Low. T4: 7.3. T3: 126. Notice the T4 & T3 are all within the normal range, so I don’t get it.

It took a month to get into the endo. He took blood. Labs on 2/3/12: TSH: 0.13 Low. Free T4: 0.70. T3: 86. (Again, the T4 & T3 are within normal range). The endo agreed with my general practioiner & thought I was “hyper” as well & that I must stop taking the PTU she prescribed for 3 weeks in order to perform the iodine uptake test to confirm what is actually causing the hyperthioridism. Therefore, I stopped taking the PTU as instructed by the endo & came back 3 weeks later for the iodine uptade test. For the test: I took the 2 pills given to me & came back 24 hours later for the scan. I never saw the “actual” scan results: Should he have shown me something? He said after reviewing labs, ultrasound & the iodine uptake test: He believes I do have “mild” Graves Disease. What is “mild” Graves disease? I thought you either have it or you don’t.

We discussed the 3 options: Meds, rai or surgery. I ended up choosing meds. I’m on 5mg of methimazole. Only one pill twice a week (much less than anyone else I have seen on here). As of today/2nd week since diagosis (Only the 3rd pill): Within 1 hour I feel weird & kinda tingly all over. Should I be concerned?

Should I get a third opinion? My TSH is definately Low on all 3 labs, but why are my T3 & T4 within normal ranges? Could they be wrong about me having Graves disease? Could something else be causing me to be hyper? My symptoms for going to my general practioner dr. in the 1st place was some pain in the throat/thyriod area. I do also have extreme anxiety & rapid pulse for which I thought was due to anxiety & stress of dealing with my husband’s sudden & serious illness along with some other life stresses. I’m not underweight (In fact I struggle to keep a good weight & am not overweight). I do not have any eye problems that I or the doctors have noticed.

I know it’s long & I have a lot of concerns, but ANY thoughts are greatly appreciated!!!!

Peace, health & love to all!
Jennifer

[Kimberly]

#1170662

Hello and welcome – We’re not doctors here, just fellow patients, so we can’t give you a specific diagnosis, but we can provide some general information.

Having below normal TSH but normal T3/T4 is referred to as “subclinical hyperthyroidism” (SH). The American Thyroid Association and American Association of Clinical Endocrinologists released some guidance last this year on treating hyperthyroidism, including SH. Here is a quick excerpt:

“When TSH is persistently <0.1 mU/L, treatment of SH should be strongly considered in all individuals >=65 years of age, and in postmenopausal women who are not on estrogens or bisphosphonates; patients with cardiac risk factors, heart disease or osteoporosis; and individuals with hyperthyroid symptoms.

When TSH is persistently below the lower limit of normal but > or = 0.1 mU/L, treatment of SH should be considered in individuals >=65 years of age and in patients with cardiac disease or symptoms of hyperthyroidism.”

In the first category, the guidance says treatment should be “strongly considered”; whereas in the second category, the guidance says treatment should be “considered”.

You need to be comfortable with your treatment path, so these would be great issues to discuss with your doctor.

Here is a link to the full guidance. (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/hyperthyroidism

By the way, the guidance does refer to “mild” hyperthyroidism, although it doesn’t provide guidance as to what constitutes “mild”. I personally agree with you on Graves’ disease itself – either you have it, or you don’t.

Take care — and keep us posted!

[sarah]

#1170663

I don’t have any profound words of wisdom but I can say there are lots of good people here. I mainly just wanted to say welcome and you’re in my thoughts.

Sincerely,
Sarah

[jamcam66]

#1170664

Thanks to both of my responders for the advise, info & encouragement! It really does mean so much! I know it is possible to live a “Normal Life”, but it’s new & scary when it’s the 1st health scare of your life & the anxiety that goes with being hyperthyriod certainly does not help.

Peace, Love, Health & Happiness to ALL!
Jennifer

[snelsen]

#1170665

Hi, I’d like to chime in, welcome you to this fine website. I’m in the “either you have Graves’ or you don’t” camp. I second all that has been said. Do keep good track of your heart rate. I’d like to know, how rapid is rapid? And anxiety goes along with being hyper, that is for sure.
One of the common themes of all of us is that we need (and deserve to) have a doctor who understands Graves’, and understands US! Not one who is distant. Your symptoms are equally as important as the labs. From your post, I understand that you have been doing some reading, and that you probably have read some of the classic symptoms of Graves’? For me, I was hot all the time, unbearably so, cause I was like a revving engine all the time, with a very fast heart rate, super hungry, had a tremor when I held my hand out in front of me.
Has the endo given you instructions to call him if you are concerned about anything? Is there a follow up appointment, and follow up labs scheduled?

Here’s a great idea I suggest to everyone. Sign a medical release of information form, asking that all labs, tests and visits, be sent to you for your own personal medical file. And that goes for all docs, the rest of your life, and your husband, too.

I sure am sorry that your husband has had a sudden change of health, of course that is super stressful and scary. Is he improving? You have a lot on your plate, but you have a whole bunch of new friend on this site. So write your heart out, it is fine!!!
Shirley

[jamcam66]

#1170666

Thanks Shirley & Everyone!

My heartrate is above normal. Sometimes @ or slightly over 100 bpm (But I dont think that is in the dange zone). I do have palpataions & must take deep breaths a lot. Of course there’s the Extreme Anxiety too. I’m either freezing or hot. There is almost no inbetween. The threshold for my body temp for me to be comfortable is a very fine line. No eye involvement that we can tell. I do have pain in the thyroid area that comes & goes. Sometimes I feel some small lumpy area(s) on the thyroid. They come & go too: Stange I know.

Don’t get me wrong. I do like my endo. It’s just that everything I have read makes me feel, that it is so difficult to diagnois. Should they have done more tests to confirm (Or convince me). Because only my TSH is low & my T3 & T4 are both in the normal range, i’m just not convinced it’s Graves Disease. Unless I just dont understand the labs. (I’ve only had 3 labs).

I have also have had an ultrsound & the iodine uptake test. Although, I do wish he would have shown me the iodine uptake scan results. Isn’t there a photo or print out of the scan he could have/should have shown me? (Just like when you break a bone they show you the xray).

Should I have “watched & waited” a bit longer before taking these meds? I’m so glad I found this website before I “Killed” mu thyroid with the RAI. I actually had the appointment to do it until I read some things about about it here & other places on the web: I quickly cancelled it! Why take the radical approach if it’s “possible” to put it into remission!!!

My doc wants me on the MMI for 3 months & then come in for a follow up labs. The MMI Rx dose: 1 pill (5mg) 2 times a week. It seems conservative from what I’ve read here.

Thank you so much for you kind thoughts of my husband. He has been diagnoised with Aplastic Anemia which is a Very Rare bone marrow failure disease: Only 1 in 3 million are diagnosed with Aplastic Anemia per year. FYI for Everyone: When I read the side effects of the MMI meds I’ve been prescribed: Aplastic Anemia is one of the rare side effects!! So you can understand when I read that: I’m sooooooo afraid to take these meds, but I guess there is no other choice!

I’ve always heard that life stresses can bring on disease. I’ve always been a “Worrier” so perhaps my husband’s illness in combination with my Mother’s declining health (She’s 81) & other stresses I’ve been going thru was just too much. I suppose I need to take up some yoga !!

My wonderfrul husband has had some improvement & we pray for a spontanious recovery (although rare). My illness pales in comparison to his. I need to be strong for him: He needs me now more than ever!

Hugs, Health & Happiness to ALL!

[Kimberly]

#1170667

Hello – The RAIU uptake & scan is considered diagnostic for Graves’. With Graves’ disease, the scan generally shows high iodine uptake throughout the entire gland. An overactive or “hot” nodule will show as a spot on the scan with very dense iodine concentration. And with thyroiditis, the scan will generally show *low* uptake throughout the entire thyroid gland.

Antibody testing (TSI or TRAb) can also confirm a Graves’ diagnosis. The test isn’t cheap, but can be done via a simple blood test at the time your other labs are done. The cost at the lab I use is about $300. However, you need to be absolutely comfortable with your treatment path, so perhaps it would be worth the expense to gain some peace of mind. Getting a hold of the results of your scan would certainly be helpful as well.

Wishing you and your husband all the best — you have certainly been through a lot lately.

[NLBatten]

#1170668

Wow Jennifer, you have been through a lot! I was only recently diagnosed (Feb. 21) and had the RAI on Feb. 24. Fast I know, but I am so tired of being sick and the side effects from the meds (especially potential liver problems) scared me and I didn’t consider surgery an option. Anyway, I don’t know if this will help you, but I had some of the same questions about wondering if the diagnoses of Graves was accurate since it was so quick and definitive. I had only 3 TSH blood tests and then the RAI uptake and they said definitely Graves. NO antibody test, ultrasound, etc. My numbers were similar to yours sort of – latest TSH was <.008 T3 and T4 were only very slightly elevated. When I went to get the RAI, the radiologist asked the tech what my "number" was from the uptake and she said 53. Radiologist told me that 10-20 is normal, 25 is high and over 50 is definitely Graves. (I think these are percentages of iodine uptake in the thyroid.) No need for any further tests. So, they may not give you a copy of the scan to review, but they might (should) tell you what the number was (% of uptake). I believe I read that if it is under 50, that doesn't mean it isn't Graves (it would just require further testing), but just that if it is over 50, it is definitely Graves. Hearing it at least made me realize the dr. wasn't making a rash decision. All roads for me lead to Graves. Maybe getting that number from the uptake test will give you some more guidance.

[Bobbi]

#1170669

The process of diagnosing Graves has three elements, typically. The first is the blood test that shows you are hyperthyroid. Occasionally, and rarely, someone who is hyperthyroid has an infection, a virus, in the thyroid. If this is the case, however, there are signs of infection (inflammation, fever, etc.) Without those signs, then, the doctors will do an uptake and scan. These two tests are done together to rule out another cause of hyperthyroidism — autonomous nodes. The uptake portion measures how much of a known dose of iodine goes into the thyroid during a measured period of time. The scan portion of the test shows whether the iodine was taken into all the cells of the thyroid uniformly (Graves) or whether it was taken into only some parts of the thyroid (autonomous nodes). The treatment options are the same, but it does help with the diagnosis and prognosis. It is my understanding that someone can have Graves (have the whole thyroid involved in the hyperthyroidism) without their uptake being severely high. If the uptake is too low, however, they are not a candidate for RAI treatment of the disease and would need to rely on the ATDs or surgery to fix things.

[jamcam66]

#1170670

Thanks so much for your detailed & heartfelt response. I will definately ask for the “Number” of my iodine uptake test when my Endo calls me back. I know that I seem sceptical, but I just want to be certain that it is actually Graves & not from another cause. Mostly my scepticism comes from the scariness of an acquiring a potentially serious illnes, but it seems “treatable” & not something that is life threatening or fatal if treated correctly. I just need to keep positive and trust in my Dr’s.

Your story is very similar to mine & also the timing too. I hope the best for you & let me know how you are doing. I think after I speak w/my Endo & get my numbers again, I will feel more confident in all my future decisions.

Peace, Health, Love & Happiness to ALL!!

Jennifer

[jamcam66]

#1170671

Hi Bobbi & Kimberly too,

Thanks to your both so much for your explaination(s) of the process of diagnois. It will come in handy when I speak with my Endo again. Perhaps then I will feel more confident in my decisions of treating my illness.

I wish everyone reading this Peace, Love, Happiness & Health!!

Many Thanks!
Jennfier

[Author]

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