# Checking in... not doing so well!



## Weasel311 (Feb 13, 2011)

Hi everyone,

I began posting back in February about being very hyper with Graves for 2 years, and then my subsequent RAI treatment in March. It is now June and I am figuratively feeling like I'm in the toilet healthwise. Sleeping 18-20 hours per day, totally dead tired, confused, foggy, freezing cold, limbs going numb and cold to the touch, hard time writing and typing (arms feel heavy). It would make sense that I am now hypo after having RAI, but I am just concerned by how quickly things have gotten bad. It's taking all I have to type this.

Here's my labwork from before and after the RAI as well as the dose of RAI and the timeline.

Before RAI - February
TSH - 3rd gen 0.01 Low
T4 Total- 13.2 (normal 4.5-12) High
Free t3- 735 (normal 210-440) High
T3 total- 286 (normal 76-181) High
thyroglobulin antibodies- 38 (normal <20) High
thyroid peroxidase antibodies- 965 (normal <35) High
TSI- 341 (normal<140) High

RAIU scan- After 6 hours uptake 67.6%(normal range is 5-20%), after 24 hours - 78.8% (normal is 11-35%)

March 4th- took 15mci RAI

April 12th- bloodwork:
TSI-360 (normal<140) High
T4 Free - 2.7 (normal 0.8-2.7) high end of normal
T3 total- 116 (normal 76-1810
Total T4- 9.9 (normal 4.5-12)
TSH- <0.01

Around early May I felt GREAT!! The best I had felt in 2 years. Stopped taking atenolol, had normal energy amount, feeling really good. Feeling so NORMAL at that point!

Fast forward to about 1 to 1.5 weeks ago, and my energy level took a nosedive. Called my endo, they said to have my bloodwork done now and they would call me when results came in. Had blood drawn on Tuesday of this week, called Endo today to ask them to try to expedite whatever they could as I am kind of freaked out by how little energy I have. Got the typical "it takes 7-10 days, we'll call you" etc. I told them that if I didn't know it was probably my thyroid, I would go to the hospital thinking I had something very wrong with me. I am barely functioning. The worst part is again trying to go to work....ugh. Financially I can't take any time off again (which I did after my RAI treatment since I was still feeling very hyper for a few weeks). I asked them today if going to the hospital would be of any benefit, they said no. They close for the weekend today and so I'm SOL with them until at the very earliest Monday. Of Course, I work Fri-Sun....

Any suggestions/ideas/opinions? Am I being a baby and this is what hypo feels like, or am I possibly severely hypo? Do I just wait all weekend and into next week like this so they can start me on thyroid supplements? I'm sure that's all I need, but it's like pulling teeth to get them to recognize the severity of how I feel as legit. Any advice would be welcomed. Hope you are all doing well

Lauren


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## Andros (Aug 26, 2009)

Weasel311 said:


> Hi everyone,
> 
> I began posting back in February about being very hyper with Graves for 2 years, and then my subsequent RAI treatment in March. It is now June and I am figuratively feeling like I'm in the toilet healthwise. Sleeping 18-20 hours per day, totally dead tired, confused, foggy, freezing cold, limbs going numb and cold to the touch, hard time writing and typing (arms feel heavy). It would make sense that I am now hypo after having RAI, but I am just concerned by how quickly things have gotten bad. It's taking all I have to type this.
> 
> ...


Lauren; are you implying that you are NOT on any thyroxine replacement yet?


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## Weasel311 (Feb 13, 2011)

Correct, I am not on any replacement at all. Seriously considering going to the hospital.


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## Andros (Aug 26, 2009)

Weasel311 said:


> Correct, I am not on any replacement at all. Seriously considering going to the hospital.


OMG!! You need to go to the ER as soon as you can. YOu can go into a coma and die!!

Please please drop everything and go. They can give you Thyroxine by IV to pull you out of this. Then Rx for you.

Who did this to you? What doctor would let this happen?

You must please take my advice!

So upset here and I am praying for you big time!

http://www.uptodate.com/contents/myxedema-coma

Myxedema Coma...................please read and go.
http://www.medicinenet.com/myxedema_coma/article.htm

I cannot tell you how worried I am. This is very very serious.
http://emedicine.medscape.com/article/768053-overview


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## Weasel311 (Feb 13, 2011)

Hi Andros! Thanks so much for your reply and concern. I just got home from the ER- bloodwork showed Free t-4 as 0.32 (normal 0.8-2.7) down from 2.7 to 0.32 in a month! TSH went from <0.01 in April to 133.40 today. Was given synthroid and set up to see the partner of my primary care doctor first thing tomorrow AM.. the ER doctor couldn't even get ahold of any endocrinologists....sigh. Glad I went. Again, thanks Andros. Will update you guys when I get more info. Doctors can be sooo frustrating!


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## oceanmist (Apr 30, 2007)

Thank God your ok!............

Ocean


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## HeidiBR (Apr 4, 2010)

Oh my God. You must have been so frightened. Did they give you any T4 via IV to help bring down the TSH?


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## lavender (Jul 13, 2010)

Oh my gosh! your endo sounds positively dangerous! You need some thyroid meds pronto! I am glad the ER was able to help and get you into the doc in the morning. I had trouble getting my endo to respond to anything, no matter how sick I felt. I eventually fired him and found a primary care doc who was willing to treat my thyroid issues, and not make me wait weeks to get lab results.


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## Andros (Aug 26, 2009)

Weasel311 said:


> Hi Andros! Thanks so much for your reply and concern. I just got home from the ER- bloodwork showed Free t-4 as 0.32 (normal 0.8-2.7) down from 2.7 to 0.32 in a month! TSH went from <0.01 in April to 133.40 today. Was given synthroid and set up to see the partner of my primary care doctor first thing tomorrow AM.. the ER doctor couldn't even get ahold of any endocrinologists....sigh. Glad I went. Again, thanks Andros. Will update you guys when I get more info. Doctors can be sooo frustrating!


Honey.....................I was up all night w/worry! And praying for you!

I would be willing to bet that your Free T3 was non-existent!

What is your starting dose of Synthroid?

I am so grateful that you went to the ER and please come here more often to let us know how you are doing.

No doubt you were depressed also and did not feel like posting?

When you can, get someone to do the FREE T3 which is your active hormone.


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## Weasel311 (Feb 13, 2011)

Hi everyone,

Just dragged myself out of bed for a little bit and wanted to check in. Went to the GP doctor this morning, we just went over my symptoms and he gave me a prescription for synthroid and orders for more blood work in 2 weeks. He was "nice" but I kinda got the feeling from both him and the ER doc last night that they think hypothyroid is not really something serious. The ER doc was basically like "sorry for the long wait, we have a lot of really sick people here" aka "What are you doing here?" and the doc this morning was like "hypothyroid is a simple fix" and i felt so tired and icky I was crying and he's like "what is making you so emotional?". My body temp is 97.4, they couldn't even get a blood pressure on me today (yesterday in the ER it was 104/72 and my HR is between 50-60). I feel like this morning I had a panic attack, but in my current state it felt like I was slowly drowning. Thankfully hubby brought me home, gave me a hot bath, and let me sleep and is making me some saffron rice now. <3 my hubs. Got my prescription for synthroid, but no one gave me any IV treatment or fluids or anything...hmmm.

I feel bad for anyone who has been dealing long term with hypothyroidism because doctors definitely are NOT sensitive to how you feel. I know with my Graves, doctors were always freaked out by the symptoms but I have already noticed with hypo they are like "where's the fire?" If you get what I mean. The doctor this AM said "how did it get to this point?" as in, why am I crying, going to the ER, etc when under treatment of an Endo.. I tried to explain that one day about 1.5 weeks ago I had a bad headache and nausea and then suddenly WHAM, exhaustion, and that I've been trying to speed up medical care since then. I told him that I know thyroid issues take a while to resolve, but I also told him that I have felt the gamut of thyroid effects and that this developed so quickly....it almost seemed like he didn't believe me. It's very strange.

I guess I'd better prepare myself for this type of thing, huh? The GP this morning said if I wasn't happy with my endo that he could recommend another one. He said "she's very good, but since she's good she's hard to get in to see." Up until last week I felt like my current endo was reliable and understanding, I have a feeling that the office nurse I talked to never even talked to the endo before she blew me off for the weekend. I don't know if I want to change Dr's, but I might have a discussion with the endo that I am NOT a baby, and that I only call and beg to see them when something is really wrong and that I am not happy with my lack of attention from them. I guess with thyroid issues they are used to people calling about not feeling well, but I am tellin' ya, I just stick to my regular appointments unless something feels very wrong.

Will try to keep checking in. I really appreciate the concern and support and it definitely makes me feel better knowing you all are here. Andros, they started me on 100 mcg of synthroid but said to call my endo first thing monday morning with my ER lab results and see what they recommend.


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## Andros (Aug 26, 2009)

Weasel311 said:


> Hi everyone,
> 
> Just dragged myself out of bed for a little bit and wanted to check in. Went to the GP doctor this morning, we just went over my symptoms and he gave me a prescription for synthroid and orders for more blood work in 2 weeks. He was "nice" but I kinda got the feeling from both him and the ER doc last night that they think hypothyroid is not really something serious. The ER doc was basically like "sorry for the long wait, we have a lot of really sick people here" aka "What are you doing here?" and the doc this morning was like "hypothyroid is a simple fix" and i felt so tired and icky I was crying and he's like "what is making you so emotional?". My body temp is 97.4, they couldn't even get a blood pressure on me today (yesterday in the ER it was 104/72 and my HR is between 50-60). I feel like this morning I had a panic attack, but in my current state it felt like I was slowly drowning. Thankfully hubby brought me home, gave me a hot bath, and let me sleep and is making me some saffron rice now. <3 my hubs. Got my prescription for synthroid, but no one gave me any IV treatment or fluids or anything...hmmm.
> 
> ...


Clearly you are feeling better already. Just a tad, but better. Hence the nice long informational post. LOL!!

I am just thanking God for you right now and also your husband who is nurturing.

So, hubby is a cook? Mine does all the cooking. I love it. Frees me up to do other things like gardening and "stuff!"

Yes; prepare yourself and continue to try and learn all you can about your circumstances so you can be proactive and advocate for yourself.

Will be waiting to hear more from you and I hope that each day is a better day for you from now on.


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## lainey (Aug 26, 2010)

>> He was "nice" but I kinda got the feeling from both him and the ER doc last night that they think hypothyroid is not really something serious. The ER doc was basically like "sorry for the long wait, we have a lot of really sick people here" aka "What are you doing here?"<<

You did go hypo at about the right time from the RAI, so the endo would have been expecting it, and regardless of how quickly your levels tanked, keep in mind that thyroid cancer patients used to have to do this for 6 weeks before their body scans (before thyrogen) and it was rarely fatal, just miserable for the patient. The doctor knows this, you don't, so the least they could have done is explain it to you when you called in terms that would ease your fears.

Therefore, the key word is "emergency", in ER, and you are right, being hypo rates about as high as having the common cold--it is a stereotype, but yes, you are "just tired" and that is not really considered an emergency situation from a doctors perspective--it is a "tolerable" symptom, and not necessarily worthy of an ER visit.

ie: >>I feel bad for anyone who has been dealing long term with hypothyroidism because doctors definitely are NOT sensitive to how you feel.<< AND >> but I have already noticed with hypo they are like "where's the fire?"<<

I'm sorry, yes, this attitude is prevalent, and there are others--file them away and try not to take them too personally, they come with the territory. The idea is to find doctors who can deal with you on your terms in a manner you are comfortable with, and some are better at this than others.

Okay, and your GP is wrong, it's not a "quick fix".


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## Weasel311 (Feb 13, 2011)

I agree, Lainey, the Endo could have at least explained what was going on. When I went to the ER, I never complained or said anything about the wait, I knew they would put me last in line and I was ok with it. I'm at least glad it got the ball rolling.

I think it is worth noting that my understanding was that after the RAI, I would have a slow descent into hypo, not the crash and burn that I have experienced. I do feel like I had the flu for a few days right before this got really bad. I felt ok, had 2 days of headache/nausea, and then came the insane exhaustion. When I had my graves I did not have a single cold or flu at ALL for the entire 2 years I had it. May or may not be a connection. But I was aware that hypo was coming, just not a giant wave of hypo that sucked me under.

Also, the ER doc did say that if I seemed more mentally "confused" he would have admitted me based on all my other vitals with temperature, HR, blood pressure, etc., so he agreed I was in poor shape, just not life-threatening, which is mostly what I went to confirm. Can never be too cautious I spose. The thyroid itself is slightly tender right now, too.


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## Andros (Aug 26, 2009)

Weasel311 said:


> I agree, Lainey, the Endo could have at least explained what was going on. When I went to the ER, I never complained or said anything about the wait, I knew they would put me last in line and I was ok with it. I'm at least glad it got the ball rolling.
> 
> I think it is worth noting that my understanding was that after the RAI, I would have a slow descent into hypo, not the crash and burn that I have experienced. I do feel like I had the flu for a few days right before this got really bad. I felt ok, had 2 days of headache/nausea, and then came the insane exhaustion. When I had my graves I did not have a single cold or flu at ALL for the entire 2 years I had it. May or may not be a connection. But I was aware that hypo was coming, just not a giant wave of hypo that sucked me under.
> 
> Also, the ER doc did say that if I seemed more mentally "confused" he would have admitted me based on all my other vitals with temperature, HR, blood pressure, etc., so he agreed I was in poor shape, just not life-threatening, which is mostly what I went to confirm. Can never be too cautious I spose. The thyroid itself is slightly tender right now, too.


We sure did not want to wait for the life-threatening part; right? LOL!! So so glad you are snapping back. Even your posts sound better.


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