# Initial Lab Results



## steinmanal (Jan 16, 2014)

I just received my first lab results in the mail today.

TSH: 533.44

FT4: <0.1

My doctor said he had never seen lab results without any trace of thyroid.

He prescribed 75 mcg of Thyroxine.

I'm scheduled to go back in and see him in three weeks for a follow up.

Can anyone help me understand? Any advice?

Thanks much.


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## Airmid (Apr 24, 2013)

Umm...I wasn't even aware TSH could go so high and one doctor told me he had treated someone with a TSH in the 200's before as his record breaker.

And they just mailed you the results? No phone call going "Hey you do still have a thyroid right?" Have they called with wanting to see how you're doing in a few weeks as I would imagine they would want to keep upping the dosage as fast as safely possible (along with as comfortably as possible for you). Did they give any reasoning for how you ended up this way? Or perhaps to even rerun the labs to see if it had been a mistake right before you started the medication as it seems like a very serious thing here.

Perhaps telling us a little bit of your history will help.

I'll never say never to anything after what I've been through but those lab results seem more like a mistake either in general or how the results were transcribed. Especially if you still have your thyroid or some semblance there of.


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## joplin1975 (Jul 21, 2011)

So, apologies, just to clarify, you still have your thyroid, yes?

I think it stands to reason that your thyroid is no longer functioning. You do need some kind of replacement medication...I honestly don't know if 75 is enough.

Was any additional testing ordered?


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## Andros (Aug 26, 2009)

Lord have mercy! (LHM!) How in the world are you able to function?

The starting dose of thyroxine is to be low so when you go to get labs, doc will reassess as to how much to increase.

And I strongly suggest that you press for an ultra-sound.

Also, insist on a FREE T3 test. This is your unbound hormone available for cellular uptake.

How "do" you feel? That would be important for all of us to know.

You may have to have the pituitary checked as well.

Welcome to the board; glad you found us!


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## steinmanal (Jan 16, 2014)

Thanks for the responses.

I do still have a thyroid.

Here's my brief history.

At the end of October (10/20/13), I was in good condition. I ran my fastest half marathon time to date. About three weeks later (11/15/13), I picked up a bad head / chest cold. Even though my cold / virus symptoms seemed to go away for the most part, I still wasn't feeling well. My health seemed to be in decline. I thought maybe I had a latent sinus infection because I had a "sick" taste in my mouth and throat and just felt very fatigued. So, I went to the doctor on 12/13/13. He prescribed an antibiotic, which I completed taking, but still didn't feel right. I figured maybe I just needed some time off work, so I took about a week off between Christmas & New Years. But my health continued to decline. I had lots of people tell me that I didn't look well, because my face and eyes were swelling and because I looked so tired.

Other symptoms I've been experiencing:

- I gained about 10-15 pounds seemingly overnight. When I realized I had gained so much weight, I started calorie tracking to lose the weight, but couldn't make any progress even over the course of four weeks of eating very carefully.
- My face, hands, feet, arms & legs have been weak, tingling, numb to the point where they keep me awake or wake me up in the night.
- My eyes have been red and puffy and watery.
- At times, my voice has been extremely froggy and hoarse. My throat is sometimes sore. And I often have a metallic, sick taste in my mouth.
- I've had strange muscle strains, aches, pulls in my neck, back, hips.
- I've also had deep chills where I have trouble getting warm, even with layers of clothing, even though I don't have a fever.
- Overall, I feel weak, tired and definitely not myself.

I went to my doctor with these concerns on 1/9/14. He suspected hypothyroid disease. He drew blood and called me the next morning with the results. He called my results "astonishingly low" - like something he had never seen or even heard of - 500x outside the normal range. He called my visit "fortuitous" because of the possibility of a brain coma. And he told me that he couldn't believe that I had been going to work or functioning at all. But he said the good news is that he would put me on the thyroid medication and within one week I would start feeling better, within two weeks I would be feeling like "superman". He assured me that he could "fix me". He asked me to start taking the levothyroxine (75 mcg) and come back in 3-4 weeks for further testing.

I took a couple days off from work and called my doctor on the second day to ask for his recommendation on restrictions and to see if he thought I should see a specialist - especially since my labs were so far outside the normal range. His secretary called back to say that, if I wanted, he would gladly write an excuse for taking off a week of work, but he didn't make any recommendations on staying home or not - that I should base my decision off how I was feeling. He also didn't feel that a specialist would be able to tell me anything more until the meds had a chance to work and we could draw more blood.

My doctor also called and left a message yesterday (1/15/14) confirming that my labs showed that my hypothyroidism is hashimoto, involving the autoimmune dysfunction. I don't know what the lab results mean but they say that my THYROGLOBULIN ANTIBODIES were less than 20 IU/ml.

I started to get a little bit of energy back after day five of taking the meds, but last night and today I'm not feeling well at all.

I have questioned whether I should re-take the test or have the thyroid examined.

How urgent is it for me to get retested or to have my thyroid examined?

Thanks for any input.

Alex


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## jenny v (May 6, 2012)

With a TSH that high (and it is ridiculously high!!), I would definitely get another round of blood work asap. You need to make sure the results weren't somehow mis-read or tested wrong, which can happen. I cannot believe you still have a thyroid and your TSH is that high, something is definitely wrong. And I'm amazed you're still upright and functioning, to be honest.

Demand another round of blood work, including TSH, Free T3, Free T4 and thyroid antibodies. I think an ultrasound is also in order. Something is not right and I don't think 75 mcg of levo is going to make much difference.


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## joplin1975 (Jul 21, 2011)

jenny v said:


> With a TSH that high (and it is ridiculously high!!), I would definitely get another round of blood work asap. You need to make sure the results weren't somehow mis-read or tested wrong, which can happen. I cannot believe you still have a thyroid and your TSH is that high, something is definitely wrong. And I'm amazed you're still upright and functioning, to be honest.
> 
> Demand another round of blood work, including TSH, Free T3, Free T4 and thyroid antibodies. I think an ultrasound is also in order. Something is not right and I don't think 75 mcg of levo is going to make much difference.


This. Absolutely get the ultrasound. Also, ask for hard copies of your lab results.

Your labs are astounding and while I don't normally say that GPs are unable to address thyroid issues (in fact, I think many do a pretty darn good job), something is really, really wrong here and I think you might need a specialist, if not a team of specialists to look at a range of issues.

After my thyroidectomy, I was horrible under-medicated and had a TSH of 121. I really could not handle it much longer, so I'm having trouble imagining how you are not comatose. Just for your information, it took nearly eight months for my labs to come down and stabilize. I'm a runner too and I would strongly advise against any strenuous activity until you get some answers.


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## steinmanal (Jan 16, 2014)

Thanks, again, for the feedback.

I spoke to my GP this afternoon.

He assured me that the lab results are accurate - especially since the TSH levels complement the FT4 levels. (BTW - I do have a copy of the lab results.)

He agreed to refer me to an endocrinologist for further consultation. He did not think that an ultrasound was called for at this time.

Hopefully, I can get in to see the specialist soon.


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## joplin1975 (Jul 21, 2011)

steinmanal said:


> He did not think that an ultrasound was called for at this time.


WHAT?

I say this with lots of concern: dump this doctor ASAP.

That is absolutely asinine advice.

And, I'm really glad you have a referral.


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## jenny v (May 6, 2012)

With a TSH that high, most specialists would be falling all over themselves to have you get an ultrasound ASAP. Dump that GP for your thyroid care and get to the endo as soon as you can. I wouldn't be surprised if they get you in super fast once they see your results.


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## steinmanal (Jan 16, 2014)

Well, my GP gave me a referral to an endocrinologist that can't see me until Feb 5. Hopefully, they'll have a cancellation between now and then - or, like jenny v said, look at my results and call me in right away.

Thanks for the feedback.


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## jenny v (May 6, 2012)

Call the endo's office and ask to get on the cancellation list (and definitely mention your lab results on the phone!). The worse thing they can do is say no and at least you've still got the appointment in 2.5 weeks.


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## steinmanal (Jan 16, 2014)

Thanks, Jenny V.

I asked the secretary if they have my labs. She assured me that they do. She said, if I felt it was an emergency for the endocrinologist to see me sooner, that I should work through my GP.

She did put me on the cancellation list.


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## Airmid (Apr 24, 2013)

Geez, when I was pushing a TSH of 60 my labs came back with "Critical High". Did yours come back with "High Score"?

I kid, I kid. 

When you talked about having a cold/virus right before all of this started made me wonder if it began as silent or acute thyroiditis then quickly progressed into hypothyroidism. Strangely enough, a lot of people have a mild virus preceding it. It's really rather interesting to read the research. Hashi's and Graves are both considered a type of thyroiditis but are different then one caused by a virus initially. Viral or acute cases may progress into hypothyroidism. Since you're antibodies are so low it makes me wonder if this isn't the case, since they don't show Hashi's. At least not yet.

I can't imagine what functioning with a TSH that high would be like. It seems like your thyroid pretty much keeled over, which is why I wonder about the virus above. A good specialist would be able to answer those questions along with an ultrasound (I can't imagine why they wouldn't want to do this) or even a re-uptake test, the latter of which might be more helpful to see if there's any function left. My T4/T3 are usually in the gutter and I feel awful but at least I still have some. I can't imagine not having even that. Though there's always that saying, "It's surprising what you can live through." I've had doctors look at my labs and ask at times how I'm still functioning. By putting one foot in front of the other and to keep going.

A myxedema coma is a very real threat and what your doctor was referring too. Not to sound like doom and gloom but learn the signs and have those around you learn the signs. It's important to know until things get sorted since you are so low.

Personally I would insist on full panels, an ultrasound and a re-uptake test if possible to see if there's function or function returning. With such an usual case I'm surprised they don't want a biopsy to see what it is attacking your thyroid.


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## steinmanal (Jan 16, 2014)

Interesting, Airmid. I hadn't heard of silent thyroiditis. My doctor seems to think that my results do indicate hashimoto's. Why do you think my results don't show hash's?

I have a friend who is a doctor in internal medicine. I'm trying to get some input from him on what to do from here - whether to wait it out for a couple weeks or aggressively seek more testing.

I think I am actually beginning to feel better, but it is difficult to know because I've basically been sleeping or sitting on my butt for the last several days.

Thanks for all the input.


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## Airmid (Apr 24, 2013)

Correct me if I'm wrong, and I am a bit slow from sleep deprivation, but you don't have antibodies so we'd all be just assuming Hashi's off of really interesting basic thyroid test results. So I'm highly confused as to why he thinks a lack of antibodies is a sign of Hashi's. While a range on that would be helpful it seems like the only test you came back within normal on.

To give you an example, while I don't have the exact range for the VA antibody test in front of me I do know it's less then 50. Mine found during FNA while I was highly symptomatic was 850. So it makes sense to say with my thyroid test results, hypo symptoms and really high antibodies that I have Hashi's.

That's why I'm really confused that your doctor was talking about Hashi's instead of you being hypothyroid due to something like acute thyroiditis which just fits better to be really honest. While the treatment is often the same you don't necessarily have the same autoimmune destruction along with the fact your thyroid is dead while you were just running a half marathon last fall - something happened during that time and Hashi's, however evil, just isn't that fast.

Though it does seem that fairly recently doctors are shoving any thyroid issue they don't understand into the Hashi's category. We have enough problems thank you, stop blaming multiple causes of thyroiditis on us - I'm sure Graves is feeling left out by now.


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## Andros (Aug 26, 2009)

Alex.............................was the antibiotic you took in the Quinalone family?

Please get an ultra-sound and also the TSI or Trab test or both. I don't have a paste function, otherwise I would provide those links for you. You will have to do some Googling.


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## Andros (Aug 26, 2009)

Check your PM box. I sent some links for some blocking, binding and stimulating antibodies. This is tricky stuff and you could be flitting back and forth between hypo and hyper as these antibodies attack the receptor sites.

And while the healthy patient should have a small amount of Thyroglobulin, they should not have any Thyroglobulin Ab.

Get that ultra-sound.


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## steinmanal (Jan 16, 2014)

Andros said:


> Alex.............................was the antibiotic you took in the Quinalone family?
> 
> Please get an ultra-sound and also the TSI or Trab test or both. I don't have a paste function, otherwise I would provide those links for you. You will have to do some Googling.


I don't believe the antibiotic was in the Quinalone family. The drug was "cefdinir" which according to google is in the "cephalosporin family".

Thanks for sending the links. I'm still so confused, but I think after 12 days of thyroxin I am starting to get some energy back. I'm definitely going to take some of these questions to my appointments.

Really appreciate all the feedback.


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## steinmanal (Jan 16, 2014)

I wish I could be more of 'giver' than a 'taker' on this forum. Maybe someday...

I'm now about 3 weeks out from my initial post.

I have seen the endocrinologist twice.

On the first visit, he switched me from generic to Synthroid and increased my dosage from 75 mcg to 125 mcg.

Between the first and second visit, I had some ups and downs. I started feeling better for a few days, then worse. During the "worse" stage, I had an episode where I actually passed out and lost consciousness. I had been very low on energy all day - basically non-functional. I got up to eat dinner, then fell asleep after dinner on the couch. My wife woke me to go up to bed. I went to urinate (standing up) and collapsed. I lost consciousness for a few seconds. My wife said I was really out of it and pale white.

As a result, I scheduled a follow up with the endocrinologist. He didn't think the "getting better" then "feeling worse" seemed normal. And he didn't see any reason that the hypothyroid would cause me to lose consciousness.

He ordered new blood work on Jan 29 (which was less than 3 weeks from the initial labs). He also prescribed Cytomel (5 mcg) to temporarily give me a boost while the Synthroid is building up.

Here are the results of the Jan 29 labs. My numbers are improved, but still pretty far outside the normal range. The endocrinologist said I'm mildly anemic and need Vitamin B12 supplements, in addition to the Synthroid.

TSH

123.76

0.50-6.00 MIU/mL

*Lab:*

Comprehensive Metabolic Panel COPC

*Name*

*Value*

*Reference Range*

T. Protein

7.5

6.3-8.4 g/dL

Albumin

5.0

3.5-5.0 g/dL

Total Bili

0.7

0.2-1.3 mg/dL

Alk Phos

62

23-159 U/L

AST

62

17-59 U/L

ALT

73

21-72 U/L

Sodium

140

134-144 mmol/L

Potassium

4.3

3.5-5.3 mmol/L

Chloride

99

98-107 mmol/L

CO2

31.0

22.0-30.0 mmol/L

Glucose

83

74-100 mg/dL

Calcium

9.4

8.5-10.5 mg/dL

BUN

18

8-24 mg/dL

Creatinine

1.2

0.3-1.4 mg/dL

GFR

66

>60 mL/min per 1.73

Free T4

0.6

0.7-1.8 ng/dL

FT3

153

200-490 pg/dL

CBC with differential COPC

*Name*

*Value*

*Reference Range*

WBC

5.4

3.8-10.6 10^3/uL

RBC

3.63

4.20-5.80 10^6/uL

HGB

12.1

13.5-18.0 g/dL

HCT

35.6

42.0-52.0 %

MCV

98.2

78.0-100.0 fL

MCH

33.5

27.0-31.0 pg

MCHC

34.1

32.0-36.0 g/dL

RDW

14.0

11.5-15.5 %

PLT

227

130-400 10^3/uL

MPV

8.2

7.4-10.4 fL

NEU %

47.4

40.0-74.0 %

LYMPH %

39.4

14.0-46.0 %

MONO %

9.2

4.0-13.0 %

EOS %

1.5

0.0-7.0 %

BASO %

2.5

0.0-3.0 %

NEU #

2.6

1.8-7.8 10^3/uL

LYMPH #

2.1

0.7-4.5 10^3/uL

MONO #

0.5

0.1-1.0 10^3/uL

EOS #

0.1

0.0-0.4 10^3/uL

BASO #

0.1

0.0-0.2 10^3/uL

Vitamin B-12

281

230-1050 pg/mL

Folate

>20.00

3.00-16.00 ng/mL

For several days following that appointment, I started to feel better - like as well as I had felt in several weeks or months.

Then, yesterday, the fatigue and other symptoms came back. I was exhausted and came home from work at 2:30. I was experiencing lots of numbness and tingling in my face, arms and legs. My throat felt constricted. Eyes watery and puffy. Fuzzy brain. All the symptoms.

My main question is... Is it typical to have ups and downs - to feel much better and then much worse? Or is something else going on that I need to look into?

I have a call into the endocrinologist for input, but I thought I would seek input from the group here, as well.

I appreciate any feedback.

Thanks much.

Alex


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## steinmanal (Jan 16, 2014)

Sorry. Those lab results didn't copy & paste well. The first number is my result. The second is the reference range.

TSH 123.76 0.50-6.00 MIU/mL

Free T4 0.6 0.7-1.8 ng/dL

FT3 153 200-490 pg/dL

T. Protein 7.5 6.3-8.4 g/dL

Albumin 5.0 3.5-5.0 g/dL

Total Bili 0.7 0.2-1.3 mg/dL

Alk Phos 62 23-159 U/L

AST 62 17-59 U/L

ALT 73 21-72 U/L

Sodium 140 134-144 mmol/L

Potassium 4.3 3.5-5.3 mmol/L

Chloride 99 98-107 mmol/L

CO2 31.0 22.0-30.0 mmol/L

Glucose 83 74-100 mg/dL

Calcium 9.4 8.5-10.5 mg/dL

BUN 18 8-24 mg/dL

Creatinine 1.2 0.3-1.4 mg/dL

GFR 66 >60 mL/min per 1.73

WBC 5.4 3.8-10.6 10^3/uL

RBC 3.63 4.20-5.80 10^6/uL

HGB 12.1 13.5-18.0 g/dL

HCT 35.6 42.0-52.0 %

MCV 98.2 78.0-100.0 fL

MCH 33.5 27.0-31.0 pg

MCHC 34.1 32.0-36.0 g/dL

RDW 14.0 11.5-15.5 %

PLT 227 130-400 10^3/uL

MPV 8.2 7.4-10.4 fL

NEU % 47.4 40.0-74.0 %

LYMPH % 39.4 14.0-46.0 %

MONO % 9.2 4.0-13.0 %

EOS % 1.5 0.0-7.0 %

BASO % 2.5 0.0-3.0 %

NEU # 2.6 1.8-7.8 10^3/uL

LYMPH # 2.1 0.7-4.5 10^3/uL

MONO # 0.5 0.1-1.0 10^3/uL

EOS # 0.1 0.0-0.4 10^3/uL

BASO # 0.1 0.0-0.2 10^3/uL

Vitamin B-12 281 230-1050 pg/mL

Folate >20.00 3.00-16.00 ng/mL


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## joplin1975 (Jul 21, 2011)

And the endo still doesn't think you need an ultrasound??! I'm astounded, honestly. To be clear, you could have thyroid cancer. It's generally an easily treatable disease, but it is more aggressively in men. So, yes, I think it is imperative you get additional testing.

If it's not cancer, then you can take a breath and focus on fiddling with you meds.

I do think it's rather normal to have ups and downs when you are dealing with autoimmune thyroid dysfunction. But...that's the thing...you only know you have a punky thyroid...but you don't know why.

How much do you weigh? I think it's clear you need a higher dose...knowing your weight might help us guess how much synthroid you need. At this point, you need to get that TSH down to a semi-normal level and get your free t4 up. If, after you've gotten those numbers into semi-normal range, your free t3 is low, you can card in cytomel or look at dessicated meds. But for now, things are so out of whack, it's hard to say what med you need.

I'm sorry you are feeling so poorly still.


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## steinmanal (Jan 16, 2014)

Thanks for the reply, joplin1975.

It's very helpful to hear that that the ups & downs are normal. My GP and the endocrinologist have made it sound like... "Take this magic pill and you'll be all better in a few days."

I'm 6'1". My typical weight is 175-180 lbs. Before I started on Synthroid, my weight had rapidly increased to about 194 lbs. It is currently back down to 189 lbs - even though I haven't been active at all.

Do you think I should insist on an ultrasound?

Thanks, again.


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## joplin1975 (Jul 21, 2011)

Gotcha.

Ok, so the VERY general rule of thumb with synthroid is 1mcg per 1.7kgs. So, around about 137mcgs is where they'd start of you had no thyroid (which, I suspect, is basically what you are dealing with -- by some process, your thyroid is dead). Then you have to "fine tune" things from there. I'm really active so ever though by this formula, I should be at about 112mcgs, I take 150.

YES, you should insist on an ultrasound. YES.


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## steinmanal (Jan 16, 2014)

I'm trying to decide if I need to get a new endocrinologist.

He insists that the tingling & numbness are unrelated to the thyroid issue, so he wants me to go back to my GP for evaluation.

He also doesn't seem to think I need the ultrasound.

What argument should I use to insist on it?

And should I just go find a new endocrinologist?


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## joplin1975 (Jul 21, 2011)

I think you may need a new doctor.

They are treating your lab numbers (which, yes, you need to do), but they aren't trying to find out why. You mentioned your TgAb numbers were in range, but there as been no testing of antibodies traditionally associated with Hashi's (i.e., TPO). And if it is "just" Hashi's, standard protocol is to get an utlrasound so you have a baseline measurement(s) of what your thyroid looks like and if there are any abnormalities.

Hell, I was hypo, but had semi-decent numbers and they immediately sent me for an ultrasound and then a radioiodine uptake scan "just to make sure." Your numbers put you at risk for a coma and no one wants to do a complete work up? As Andros mentioned earlier, you might have pituitary issues as well (I'm not well-versed in those disorders) and it sounds like no one is thinking about that either. I also had tingling sensations, but I chalked that up to a disc herniation. After they removed my thyroid, those sensations went away (I still have transient issues with the disc, but it's minor)...the best I can figure, one or more of my nodules was possibly pressing on some nerves in my neck. So, I think there are a lot of quality of life issues that aren't being addressed that they could *start* to possibly think about if they employed some kind of imaging.

I have this sneaking suspicion that something other than "just" Hashi's is going on...I don't know what...but I do feel like you are not being served well by your current doctors.


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## surge (Aug 15, 2012)

Wow, those numbers are crazy. Aaaand still pretty crazy even though they're much better than they were. I, too, am surprised that neither of your doctors seem to be interested in figuring out what happened that this came on so suddenly. An u/s is part of piecing together that puzzle, which is why we're so curious about it here and surprised that the docs aren't

You're still under treated, so it isn't surprising to me that you're still having bad days. You're in a deep hole and it's going to take time and patience to creep up and out...It might not just be the thyroid, but until your tsh in lower and you actually gets some FT4 and FT3 in your system, it'll be hard to tell.

It's probably exhausting to think about finding yet another doc and getting in, but I would. You're going to need an endocrinologist. That much is clear. So it will be worth it to find a good one.


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## steinmanal (Jan 16, 2014)

Thanks for all the input.

I called my GP to get a referral to a new endocrinologist.

He didn't seem to think I needed the first specialist he referred me to see, so you can imagine that he wasn't gung ho about the second referral. He's willing to do it.

He basically said the problem is that I'm being impatient with the process (even though he initially told me that within two weeks of starting 75 mcg of synthroid I'd be feeling like 'superman').

He still doesn't feel that there is any need for an ultrasound, because we already believe the problem is Hashimoto's and that it will just take time for the hormone to build up.

He is going to refer me to a new endocrinologist for a second opinion.

Thanks, again.


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## Andros (Aug 26, 2009)

Myopathy from hyper.
http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism
(Copy and paste into your browser)

Myopathy from hypo
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1010480/
(Copy and paste into your browser)

peripheral neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
(Copy and paste into your browser)

http://www.suite101.com/content/thyroid-disease-and-neuropathy-symptoms-a140669
(Copy and paste into your browser)

men more likely to have cancer than women
http://www.umm.edu/endocrin/thytum.htm

Peripheral neuropathy..........................so common w/thyroid issues. You do need a new doc and I certainly agree w/Joplin about the ultra-sound.

Providing info above.

Bless your heart..................................


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## tullfan (Jan 28, 2014)

No one more than me knows what it's like to be jacked around by completely incompetent, blow off doctors. Neither of your doctors are working in your best interest, period. I am reading your post just shaking my head. Do not listen to these two. You have a serious medical condition on your hands. Do not be Mr. nice guy about this because frankly they can give a damn about your health and not only does this boarder on malpractice, this blows the door open, and believe what I say that if anything goes wrong with you they will not be held liable. You need your ultrasound now, not in three months or whenever they feel like doing it to get you to be quite because you are bugging them. I almost fell on the floor when I saw your TSH reading. This is an absolute joke. Now if this idiot gp is willing to give you a referral to a new endo, take it, I would also ask your gp to order your ultrasound so you don't have to wait for the new endo to do it.

Here is a link to a thyroid book made by regular conventional doctors that explains what, at the bare minimum, your doctors should know. This book does not promote the use of glandular thyroid medication, and it depends on the person who that helps, but it does cover everything you need to know at this moment.

http://www.amazon.com/Complete-Thyroid-Book-Second/dp/0071743480/ref=sr_1_1?s=books&ie=UTF8&qid=1391811925&sr=1-1&keywords=kenneth+ain


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## Andros (Aug 26, 2009)

Hashimoto's is diagnosed by FNA. If certain Hurthle Cells indigenous to Hashi's are present, then you have Hashi's.

Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis
(Copy and paste into your browser)

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2
(Copy and paste into your browser)

There is only one true way to diagnose Hashimoto's. All else is pure conjecture.


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## steinmanal (Jan 16, 2014)

Wow. Thanks for all the resources. I've reserved the Complete Thyroid Book (Ain) at the library. And I have begun reading many of the links / articles posted here.

I do think that it is likely I have peripheral neuropathy - although I may be in the early stages, since I still experience sensitivity and I don't have any burning - just numbness, tingling, weakness of muscles.

So, to clarify about the ultrasound...

- Is the FNA the same as an ultrasound?

- Is the only reason for the ultrasound to detect cancer?

- Even though my doctors haven't felt abnormal nodules, do my extremely high TSH levels indicate that the thyroid could be cancerous?

Thanks, again. Really. So much appreciate the help.


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## tullfan (Jan 28, 2014)

I also have tingling in my hands, my neurologists said it's probably carpel tunnel, oh brother, totally clueless.

*Is the FNA the same as an ultrasound?*

No an FNA (Fine Needle Aspiration) is when they use a needle to get a tissue sample for a biopsy, and ultrasound is a sound scan that creates an image.

*Is the only reason for the ultrasound to detect cancer?*

I think it's primarily to detect cancer and if they see something then they do a FNA.

*Even though my doctors haven't felt abnormal nodules, do my extremely high TSH levels indicate that the thyroid could be cancerous?*

I don't know the answer to that question, but I would not let some doctor feel my thyroid gland and say to me that everything is ok and that's it. I had an ultrasound on my thyroid gland and I did not have any nodules, but one side is bigger than the other and I was told that my thyroid has many indentations like a golf ball, that sucks, but now I know that I do not have Thyroid Cancer and my treatment is the correct course of action.

The other thing I would consider is having an MRI scan done for your pituitary glad to make sure nothing is pressing against it. Not sure if TSH is effected by that, ask your doctors and review in the book to follow up on this.


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## joplin1975 (Jul 21, 2011)

Well, sort of...

So, Hashi's and cancer are related. I'm on my phone right now, but once I get to a computer I'll try to get you some sources. Essentially, everyone who has an autoimmune thyroid disorder should have an ultrasound.

Ultrasounds cannot detect cancer. An u/a is used to detect structural abnormalities. If an abnormality is detected and if it meets the criteria for biopsy (larger than 1cm), then you do a FNA to rule out cancer.

Ultrasounds are important because nodules cannot always be felt - often times they grow inward.

Some docs might do a FNA at the time of the ultrasound, but most wait for a radiologist to read the images and then schedule a FNA later.

Your extremely high TSH does not = cancer. However, the longer an autoimmune condition is untreated, the more cancer is concerned. The theory is that as the autoimmune antibodies attack thyroid cells, the more likely you will have a genetic mutation that essentially is cancer. Assuming this is not an issue with your pituitary, you've got either an advanced case of autoimmune...something. A VERY advanced case. That is causing your thyroid to be dysfunctional. Or, there is cancer that's eating up your thyroid.

All the thyroid meds in the world won't help with cancer. So, until you have an image of the gland, you really can't determine what your treatment plan should be.


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## CA-Lynn (Apr 29, 2010)

I'm still trying to wrap my head around that initial TSH. WOW! Never thought it went that high. I mean, I thought the low 200's was the highest on record.

I was diagnosed over 20 years ago. Yes, over time there will be some minor ups and downs. But not to the point where you're home sick.

Your CBC also shows a problem with anemia, not altogether uncommon with autoimmune disease that's not yet in control.

Make sure you see the endo every few weeks until you get it all under control.

How are you feeling now?


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## CA-Lynn (Apr 29, 2010)

Alex - one thing I want you to be clear on. IF, and I do mean IF, it is cancer, then thyroid cancer has an EXTREMELY high success rate. It's pretty well encapsulated and the surgery is pretty fast and easy in the grand scheme of things. So don't let the term "cancer" worry you.


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## Airmid (Apr 24, 2013)

Isn't the numbness awesome? I get it in my hands due to my out of control thyroid.

When my TSH was floating around around in the 50's my Endo was falling all over himself to get an ultrasound which revealed several suspicious nodules on my remaining thyroid (I've already had cancer once) and we did a FNA of the most suspicious. That's comforting right there.

You want an argument for an ultrasound? Your thyroid suddenly died. I think that's good enough reason for any advanced testing to figure it out. I'm hoping it was a virus that then progressed rapidly into something like Hashimoto's and not cancer but I would point out to the doctors that this would be good to know. Honestly Hashimoto's just doesn't kill thyroids that fast. I've never heard of a case where just having that would kill off your thyroid in a matter of months. And it would of been months seeing as you did marathons before. There's just no way you could be running doing that with zero thyroid function.

When my TSH went from 1.1 to 17 in a few months I asked why as thyroids just don't do that and was told it didn't matter. Then I was diagnosed with cancer a couple of years later. The whole "It doesn't matter" doesn't float my boat anymore and if any doctor told me that now I'd kick their ass to the curb. You need a new Endo, you need an ultrasound and a RAIU scan to see what it's actually doing.

But hey at least your labs have improved. You're actually at a number that we've seen before. And yes, ups and downs on a daily basis are very normal when getting things under control. You are still out of control and it is normal for you to feel bad some days. Even if your T3/T4 is within "normal" your TSH is still sky high, showing it is stressing out your thyroid to get to that number. I have had normal T3/T4 numbers with a TSH of 40 before. It means your thyroid is struggling to get to normal and you need more hormone. Along with more tests and if they wont do what's necessary fire them and find a doctor who has a brain.


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## Swimmer (Sep 12, 2013)

Hi, on another note altogether -

I'm noticing your b12 is at the very low end of the range - which leads me to ask, are you a vegan, or have you been on H2 receptors or PPI's (ie stomach acid receptor blockers) for a number of years? You might want to read about b12 and how it is important for the brain -- it's very easy to take a sublingual b12. You're within range, but so close to the bottom end, can' t help to wonder about the other b vitamins, how's your b3, d (etc.) with that one being so low, or, perhaps you might want to take a b stress complex if that's something you can take? (The b's are so important)

And your folate appears high - just out of range if I'm reading that right -- I would ask the Dr. what that indicates (Do you currently take folic acid every day? -- or does the doctor need to notice that your folate is high? While you may get an answer that it is close enough to the range not to be concerned, since the ranges are the general average, yet, the question I'd want to know is how is that happening and what do you need to change to get it in optimum range (whatever that is) and since that one is high, the b12 is so low, that might make you concerned about if other things are out of range or needing some tweaking.

AND your MCH is also high and out of range. (Didn't the doc notice this one? Say anything? Maybe you mentioned it and I missed it.) So it looks like you need your irons levels fully checked. Before you start taking supplements of any kind you should probably get with your doctor and find out what is going on and what you need... And if your doc doesn't know what to do or care, then you might need to change doctors. BTW, what is your regular daily food intake like? (vegan, fast food, paleo, etc.)

http://www.nlm.nih.gov/medlineplus/ency/article/003648.htm

Finally about the thyroid, I am suprised they haven't done further testing to check you for a viral thyroiditis because of the way that yours came on -- you had a cold/virus that came on after the marathon, is that right? Then all of the other symptoms hit you right after that?

One doctor did a "sed rate" test to try to determine whether mine was viral or autoimmune. You can read online about a sed rate test. I think you should do that test because if you get a positive result, you might get a little more action with the doctors being more helpful to you. Also, I don't see a TPO ab test -- this is really important.

So I was racewalking after training all summer and my crazy thing went down at the end of this... I had learned how to push myself - one foot in front of the other... Even though always fatigued... And then KABOOM.... (But I'm doing really well now - four months later) but mine turned out to be Hashimoto's - my TPO ab was WAY high as well. My sed rate normal. Question to you... Back when you were doing the marathons & training, even though you were doing it, were you always fatigued and you just knew how to push yourself through it?

Hang in there - rest - DON'T EXERCISE RIGHT NOW (are you?) My endo told me only gentle fitness when I was feeling like some of what you are going through following my racewalk relay... Trained for it all summer... Be your own advocate. Be sure not to tick off the doc & nurse while you aim to have their help while you are your own advocate. Also, you might find that sending them a fax request for help in writing, very nicely stating the facts, might help your cause (not sure) as you lay out for them in writing exactly clearly & concisely what the problems are.

***Does anyone else know how they determine viral thyroiditis? Any more tests that can be suggested to test for this?****

**Finally - one last thing -- "just in case it helps" -- you might try dropping gluten & wheat 100% for three weeks and then gently adding it back in and just 'see' if you there is any difference -- you may find that it plays a role at the current time in being a negative trigger/continuation of what is going on - -I in NO WAY mean to suggest that wheat has 'caused' your problem - (not at all) and I am not suggesting that eliminating will suddenly make everything go away -(that would be silly of me) -- I mean rather, that as my endocrinologist explained, some people have Hashimoto's & a wheat/gluten correlation (not all) -- if you're one of them, this might just help you to calm things down a bit. On another hand, if you happen to have a quite confused immune system at the moment that is over-responding to things in general, causing extra inflammation and craziness, "if" you happen to be one of the people who is sensitive this way, then removing it, can maybe help a small way - since things are so bad for you at the moment, it doesn't hurt to give this a try. It's actually really easy to do if you think of it as simply eating "whole foods" -- then there's no bread anyway, oats are gluten-free oats (bob red mill sells these), etc.


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