# Newbie: My TSH is 158.4



## eliz (Mar 4, 2017)

I've had a lot of health issues over the last 10 months including joint pains and recent ICU stay for a massive GI bleed. Over the last few weeks I've been short of breath, had some extremity swelling, weight gain and not sleeping right - feels like someone's hand around my throat. I went to see a cardiologist yesterday and he ordered thyroid tests, a chest x ray and I'm having an echocardiogram next week. He told me to go down the hall and have my labs done right away - this was at 3:30 pm yesterday. At 5:30 he calls to tell me he doesn't have the full thyroid panel but that my TSH number is very concerning - it's 158.4 and lab had double checked and verified the result! He wanted me to start on synthroid 50mcg today which I did this am. He wants me to follow up with my PCP as he (the cardio) is not an expert in thyroid.

Of course, I'm now super concerned because when I look online I see people freaking out over high TSH levels that are nowhere close to 158. I like to be in control of my health and I'd like some advice on what tests I should be asking for and hopefully someone who can calm me down about this number.

The last time I had my thyroid numbers checked was December 2015 and they were TSH 4.32 and T4 Free 1.1.


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## joplin1975 (Jul 21, 2011)

Wow.

That is extremely high. You'll likely need more than 50mcgs to correct that TSH.

You should have the following tested: TSH, free t4, free t3, TPO, TSI, and Tg/TgAb. You should also have a thyroid ultrasound ASAP.

How old are you? Male or female?


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## eliz (Mar 4, 2017)

I'm a 53 (soon to be 54 year old) female.


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## joplin1975 (Jul 21, 2011)

Ok...that's even more reason to get an ultrasound.

Eliminate the possibility of thyroid cancer (via an ultrasound), get you full thyroid panel and then reassess.


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## jenny v (May 6, 2012)

Are you getting in to see the PCP asap? Can you get copies of all of the labs he ran on your thyroid? A TSH of 158 is VERY concerning.


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## Sabrina (Aug 30, 2016)

Do you have ranges for the different TSH tests? Some labs have different ranges, maybe it was a different type of test? Just a thought.


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## eliz (Mar 4, 2017)

jenny v said:


> Are you getting in to see the PCP asap? Can you get copies of all of the labs he ran on your thyroid? A TSH of 158 is VERY concerning.


I have a very good relationship with my PCP so I expect to see him tomorrow or at least be able to get scripts for ultrasound and labs.



Sabrina said:


> Do you have ranges for the different TSH tests? Some labs have different ranges, maybe it was a different type of test? Just a thought.


The standard range .4 to 4 - that's why the doc called me Friday late afternoon. Of course these always seems to happen on a Friday. I'm still waiting to hear the result of the T4.


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## eliz (Mar 4, 2017)

I just got the Free T4 and it is .16 (Range .90 to 1.70). See my PCP this afternoon - I'm going to make the US appointment before I go so I don't fall behind another day.


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## joplin1975 (Jul 21, 2011)

That's not unexpected, given your TSH. Hang in there!


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## eliz (Mar 4, 2017)

Thank you for the response joplin - it's been a rollercoaster of anxiety.

I started the levothyroxine 50 mcg on Saturday and on the positive side my shortness of breath was greatly reduced just later that day - ie it was so bad even just having a conversation I had trouble catching my breath. Now at least I need a slight exertion to get to that point. And the feeling of being choked has been reduced to discomfort.

On the other hand, Saturday morning my eye felt droopy - it was the strangest thing. When I looked in the mirror my eyes were puffy all around. I'm curious if this is the thyroid or the meds? If it's the meds it was pretty quick. I also feel like I'm taking cold meds - that feeling of pressure in my head. I slept finally on Saturday night better than I have the last few weeks but it only lasted one night. I'm hoping when the meds are increased that will help. I need my sleep!


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## joplin1975 (Jul 21, 2011)

I don't know for sure, but I would imagine its more to do with the severity of your hypothyroid rather than the meds. Both sound like hypo symptoms.

You'll probably need much more than 50 to get back on track, so know that you will have odd symptoms from time to time, as you go through this process. Don't be afraid to contact your doctor if things feel really wonky.


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## eliz (Mar 4, 2017)

My doctor was great - I was in with him for probably 45 minutes. He called over to the hospital lab which had done the original TSH and T4 and they are able to use the same blood from Friday to do most of the tests except he had to draw to do one of them (TPO) which needs to be "fresher" and he's rerunning the TSH and Free T4. I'm scheduled for the Ultrasound on Thursday am. He's concerned about how the TSH got so high so quickly and so shortly after 2 instances of unexplained massive GI bleeding which landed me in the ICU 4 weeks ago for 4 days and ER 6 weeks ago for 48 hours. My blood pressure was also wacky - it was super high the first time he read it 170/110 and then he read it several more times and it was all over the place - the same thing happened while I was in the hospital. He wants me to monitor it at home for the next few weeks. He said it's almost like my body is under attack. I am very grateful that I have a doctor who treats me like a partner in my health.

I'm going to 75 mcg levothyroxine starting tomorrow and in a week to a 100 mcg. I'll update with the other labs when I get them.


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## jenny v (May 6, 2012)

Take it as easy as you can right now and try not to over exert yourself. It sounds like your PCP is a good one.


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## eliz (Mar 4, 2017)

Just got my Tg/Ab which is >2100 range 0 to 4
Tg unreadable because of antibodies (or something like that).
Doesn't seem like a good number,,,,

I'm still waiting on TPO and US results. The US tech kept asking me if I was sure this was the first time I've had a thyroid issue. And he asked if I knew my WBC count which I thought was weird and unnerving.


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## joplin1975 (Jul 21, 2011)

Yes, when TgAB gets too high, Tg gets unreadable. But...you can't have TgAB without Tg, so it's reasonable to assume you have high levels.


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## eliz (Mar 4, 2017)

So any idea what this means?


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## joplin1975 (Jul 21, 2011)

Tg is produced by normal, healthy thyroids. TgAB is produced when autoimmune attacks happen and also when cancer develops.

You either have a serious, serious case of autoimmune thyroid disease or you have thyroid cancer. My bet is that you have both occurring at the same time.

Honestly, you should, of course, wait to see what your ultrasound report says, but I would be preparing for surgery.


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## eliz (Mar 4, 2017)

I haven't heard back from my doctor which is annoying me so I went and picked up the US report. This is what it says:

The right lobe of the thyroid is enlarged and lobulated measuring about 2.9 x 2.7 x 5.6 cm. The right lobe is diffusely heterogeneous with a more discrete 7 x 6 x 9 mm ovoid echogenic nodule in its mid pole anterolaterally. On color Doppler there is some increased vascularity in the gland.

The left lobe of the thyroid is enlarged and slightly lobulated measuring about 2.7 x 2.9 x 5cm. The left lobe is heterogeneous without a discrete nodule. On color Doppler there is some increase vascularity in the gland anteriorly.

The isthmus is thickened measuring about 5mm centrally. No discrete definite nodule is identified.

Impression: Enlarged heterogeneous thyroid with a 9mm right thyroid nodule.

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Does that sound good or bad? I have no idea and it doesn't seem to give much detail compared to other imaging studies I've had done in the past (not thyroid). Plus my brain is not working very well these days.

I feel like with my really high numbers I should be seeing someone beyond my PCP but not sure where to start.


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## creepingdeath (Apr 6, 2014)

In my opinion it sounds like you have Hashimoto's thyroiditis.

Hypo and Hyper symptoms can be going on at the same time.

I know that shortness of breath feeling.

Your doctor's right your body is under attack.

A 9mm nodule will be biopsied if it gets to 1 cm.

Your thyroid is slightly enlarged.

Both sides of mine were swollen to a little more than 10 cm.

All my antibody tests were off the charts too.

That ultrasound report would recommend any following procedures if needed.

Now all you need is to determine the right thyroid hormone for your unique self.

Good Luck......


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## joplin1975 (Jul 21, 2011)

That's actually surprisingly good, given your results.

The decision you and your doctors will have to think about is do you try to get this all under control with medication or should you, given how high your antibodies are, go straight to surgery? Sometimes once the antibodies get so severe, the damage is done.

I don't mean to be sounding so "pro-surgery" but your labs are remarkable!


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## eliz (Mar 4, 2017)

My doctor just called to say I have Hashimoto's. My TPO is over 900. I didn't get the range but at that number I don't think it matters. Is it normal for Hashimoto's to have such high Tg/Ab and TPO? I feel like I should try to see an endocrinologist although not really looking forward to that.


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## joplin1975 (Jul 21, 2011)

Those levels are on the high side - very, very high side - but there have been posters with similar types of levels.


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## creepingdeath (Apr 6, 2014)

It's up to you if you want to see an Endo.

In my experience with them, diabetes is their specialty .

Any doctor can prescribe thyroid hormone.

You obviously need it before things get worse like nerve damage or heart problems.

Remember this treatment isn't an overnight cure.

For some it takes years of battling to find the right doctor and hormone right for you personally.

Everyone is different when it comes to thyroid.

I'd see if your PCP is up to treating you so you can get on replacement hormone as soon as possible.

Good Luck again~


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