The THYROID Thread

[luvmarypoppins]

Micayla - Sending you some thoughts. I am sure tomm. cant come fast enough for you to hear from your endo. My thoughts and prayers are with you. Hang in there!!

dis chick - How did your surgeon visit go? I just wanted to say if they suspect any voice problems are they going to do a scope on you? My surgeon did a pre op scope and lots of post op scopes. You could see the damaged/weak vocal cord etc. They mentioned to me there is an operation if the voice really is not comng back. Its just one day. They put you to sleep and inject foam on both sides of the vocal chord to bring it closer together. It was an option but ptl I didnt need it. Hope all went well for you.

 

[Just_Trish]

Hi there everyone,

I am ashamed to admit how naive I am/have been about my thyroid. I was diagnosed hypo about 5 years ago. I have been on 50mcg of levothyroxine since day 1 and my TSH has been usually about 5. The Dr (Primary care) was satisfied with that, although at times it has bounced as low as 3.5

For the last couple of months I've been feeling terrible run down and sluggish, NO energy whatsoever. Finally went to the Dr (no insurance so I can't go as often as I would like) my TSH was 13!! Now, again, naive here so I don't know the other numbers. They raised me to 75mcg and I actually feel a little more alive, but not great.... they said they would retest in 6 weeks and raise again if needed.

My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!

Thank you for any input!

 

[mrsklamc]

My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!

Thank you for any input!

No...it's labeled very clearly on my synthroid bottle that calcium (tums) can interfere with absorption, so I don't think that's a leap at all...and Synthroid is a long acting drug, so 6 weeks is a standard amount of time to wait before testing your levels to see how you are doing. I am sorry.

 

[angwill]

Hi there everyone,

I am ashamed to admit how naive I am/have been about my thyroid. I was diagnosed hypo about 5 years ago. I have been on 50mcg of levothyroxine since day 1 and my TSH has been usually about 5. The Dr (Primary care) was satisfied with that, although at times it has bounced as low as 3.5

For the last couple of months I've been feeling terrible run down and sluggish, NO energy whatsoever. Finally went to the Dr (no insurance so I can't go as often as I would like) my TSH was 13!! Now, again, naive here so I don't know the other numbers. They raised me to 75mcg and I actually feel a little more alive, but not great.... they said they would retest in 6 weeks and raise again if needed.

My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!

Thank you for any input!

Thyroid meds are supposed to be taken on an empty stomach and with water only. I had problems when I took a multivitamin with Iron and the Iron caused my TSH to go into the 20's. I now take it as soon as I get up with water and then don't eat for at least two hours afterward. I also take a multivitamin with no iron at night.

HTH

 

[mrsklamc]

Endo called this morning and scheduled an ultrasound for today. If they can see lymph nodes, she wants to do surgery. She didn't say RAI but I'm sure she's thinking it cause she said to switch back to cytomel.

 

[Christine]

Endo called this morning and scheduled an ultrasound for today. If they can see lymph nodes, she wants to do surgery. She didn't say RAI but I'm sure she's thinking it cause she said to switch back to cytomel.

Uuugggghhhh. I'm sorry (I think). Sounds like your endo is taking the best approach. Surgery is always the gold standard. If you can get at it, then just pull it out. I am sort of surprised that they didn't put you back on your meds. I wonder what the thought process is there? Probably if they can't see anything on the ultrasound you'll just go right in for RAI.

 

[Just_Trish]

No...it's labeled very clearly on my synthroid bottle that calcium (tums) can interfere with absorption, so I don't think that's a leap at all...and Synthroid is a long acting drug, so 6 weeks is a standard amount of time to wait before testing your levels to see how you are doing. I am sorry.

Wow....thanks for the info! I just checked both mine and my mothers bottles (filled at 2 different pharmacies) and neither one is marked with that. Just says to take with a full glass of water.

After this fright I am definitely going to learn more about all this thyroid stuff so I can be better informed!

 

[mrsklamc]

Probably if they can't see anything on the ultrasound you'll just go right in for RAI.

I have been back on the synthroid since Weds. so I'd guess that's what she's thinking...I did ask about the alcohol ablation and she said the problem with alochol ablation is that you have to know exactly what you are looking at to do it, and if that's the case she'd rather do surgery. Which confuses me just a tad because she's the one who first brought up alcohol ablation. But, whatever.... not looking forward to RAI but I'll live.

 

[luvmarypoppins]

Micayla - . Its good your endo/surgeon has a plan.

Wishing you all the best with the ultrasound today.

My surgeon told me if it comes back they will cut out as much as possible and then do more RAI too. I had the 47 lymph nodes out. They told me there are over 200 in your neck. I am guessing about 50 in each quadrandt etc.

So do you have to do the med withdrawl and diet again? Just curious as to what your endo thinks of thyrogen. But I am sure they want the consistecy of the withdrawl and supposedly it more sensitive?

 

[mrsklamc]

So do you have to do the med withdrawl and diet again? Just curious as to what your endo thinks of thyrogen. But I am sure they want the consistecy of the withdrawl and supposedly it more sensitive?

She hasn't told me.

 

[mrsklamc]

The ultrasound tech said there was nothing there so I have no idea what the next step is (other than, wait for the endo to call me.)

 

[grafxgirl]

I was diagnosed with Hashimoto's Disease in April of 2007. Boy has it been a long, hard battle! It was about 6 months after my son was born, I was having hair loss, brittle nails, dry skin, tingly hands/feet, weight gain (over a year's time I went from my usual 120 lbs to 186 lbs!), joint pain, and irritability. My OB and GP told me it was because it takes time for the body to go back to normal after a pregnancy, and in most cases up to a year (I no longer have them as doctors). I decided to switch because no one was listening, and my new GP immediately sent my blood work off for some test. The next day, she said it was my thyroid, and referred me to an endocrinologist. I was immediately started on Synthroid, and also sent for ultrasounds of my thyroid and it was discovered that I had 3 nodules on the left side of my thyroid so it was time for a biopsy, at which they decided to keep an eye on the nodules because they were very small. Within 6 months time they noticed 2 of the nodules disappeared, and one was nearly gone. As of this January, it has been 2 years and my ultrasounds are great, and I am now seeing my endocrinologist every 6 months instead of every 2 months. I do struggle with weight, but have managed to lose 55 lbs with lots and lots of running and strength training, as well as a good diet. I realize I will have my ups and my downs, and just try to do what I can day to day to keep a positive attitude and just stay healthy.

 

[grafxgirl]

Hi there everyone,

I am ashamed to admit how naive I am/have been about my thyroid. I was diagnosed hypo about 5 years ago. I have been on 50mcg of levothyroxine since day 1 and my TSH has been usually about 5. The Dr (Primary care) was satisfied with that, although at times it has bounced as low as 3.5

For the last couple of months I've been feeling terrible run down and sluggish, NO energy whatsoever. Finally went to the Dr (no insurance so I can't go as often as I would like) my TSH was 13!! Now, again, naive here so I don't know the other numbers. They raised me to 75mcg and I actually feel a little more alive, but not great.... they said they would retest in 6 weeks and raise again if needed.

My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!

Thank you for any input!

The advice my endocrinologist gave me was to take my Synthroid first thing in the morning, on an empty stomach with plenty of water. She told me to not eat for at least 1 hour but 2 hours would be the best. Do not take any medications such as vitamins, calcium, birth control, antacids within a 4 hour time period after taking the Synthroid. I was also told not to drink coffee because it also affects the effectiveness of the Synthroid. Avoid soy products and grapefruit/grapefruit juice.

When I first started I was also taking Levothyroxine. It is the generic for Synthroid. My levels bounced all over the place and would not stabilize. My endocrinologist said it would be best to switch over to the brand name Synthroid. The reason is there are many companies that make the generic form; they don't do them the same, which means ingredients fluctuate and effectiveness fluctuates. The pharmacies don't tend to order from the same company all the time, which means, your prescription may change a bit. This is not true for the brand name, and most patients see improvement when using it. We gave it a shot and it worked! My levels stabled out and finally dropped down to the normal range.

I also like my doctor because she listens to what I have to say about how I'm feeling and she uses that as an indicator to adjust my medication instead of just relying on charts and figures.

 

[grafxgirl]

I can't thank you enough for the information ya'll have been able to give me. I'd like to pick your brains again, if you don't mind.

Last time I posted I mentioned the random sore throats. Still doing that, but since last week it feels like I have a big lump in my throat. My thyroid is definitely enlarged. Sometimes it is more uncomfortable than other times. I'm having my follow-up blood work done today, so I'll find out if my dose adjustment was enough..

I don't even know what I'm asking... maybe I just need a pat on the head? I can't find anything about any of this that would send me running for the doctor's office. I can't feel any new nodules, overall I feel about the same. Any words of wisdom for me?

I had a feeling of a lump in my throat too, and sometimes felt like my throat was closing off. As my medication increased it disappeared. I think it is time for an increase again since I'm occasionally feeling the tightness in my throat recently, along with a little tiredness. My appt. is next week so we'll see what happens.

 

[angwill]

I am glad you got your thyroid taken care of and did what was best for you.

One thing that is true is that a lot of women have thyroid issues after having a baby and it does take up to a year for the hormones and others to level off and become normal. A lot of doctors don't want to put women within a year of having a baby on synthroid because once you start taking it you can never stop. Their hope is that things will level off within the year and there will be no need to take the meds for the rest of your life and if not then they take action.

I was diagnosed with Hashimoto's Disease in April of 2007. Boy has it been a long, hard battle! It was about 6 months after my son was born, I was having hair loss, brittle nails, dry skin, tingly hands/feet, weight gain (over a year's time I went from my usual 120 lbs to 186 lbs!), joint pain, and irritability. My OB and GP told me it was because it takes time for the body to go back to normal after a pregnancy, and in most cases up to a year (I no longer have them as doctors). I decided to switch because no one was listening, and my new GP immediately sent my blood work off for some test. The next day, she said it was my thyroid, and referred me to an endocrinologist. I was immediately started on Synthroid, and also sent for ultrasounds of my thyroid and it was discovered that I had 3 nodules on the left side of my thyroid so it was time for a biopsy, at which they decided to keep an eye on the nodules because they were very small. Within 6 months time they noticed 2 of the nodules disappeared, and one was nearly gone. As of this January, it has been 2 years and my ultrasounds are great, and I am now seeing my endocrinologist every 6 months instead of every 2 months. I do struggle with weight, but have managed to lose 55 lbs with lots and lots of running and strength training, as well as a good diet. I realize I will have my ups and my downs, and just try to do what I can day to day to keep a positive attitude and just stay healthy.

 

[Christine]

Wow....thanks for the info! I just checked both mine and my mothers bottles (filled at 2 different pharmacies) and neither one is marked with that. Just says to take with a full glass of water.

After this fright I am definitely going to learn more about all this thyroid stuff so I can be better informed!

Those instructions will not be on the bottle. They will come on the little printout that the pharmacy should be giving you each time you pick up your perscription. You an also read it on line. It is often called a drug monologue.

 

[mrsklamc]

Per usual - Christine is correct. Start LID immediately, stop meds immediately, get TSH tested on Monday. Getting the Tg tested again too just in case the cytomel did anything to it, although the doc seems to think she's just humoring me. As soon as TSH is over 30, another treatment dose of RAI.

 

[Christine]

Per usual - Christine is correct. Start LID immediately, stop meds immediately, get TSH tested on Monday. Getting the Tg tested again too just in case the cytomel did anything to it, although the doc seems to think she's just humoring me. As soon as TSH is over 30, another treatment dose of RAI.

So glad to hear from you. I've been thinking about you all day and I keep checking this thread for you!!

So, I am taking from this that the ultrasound didn't show anything?

Glad to hear you have a plan. I'm betting your TSH rises pretty fast at this point because you have no long-acting meds in your system.

Hang in there. Did you doctor say that they will do a post-ablative scan. I would like to know if they can see this remnant once you have taken the ablative dose of RAI.

 

[luvmarypoppins]

I have been thinking about you and praying for you too Micayla.

I am glad that the ball is rolling so to speak. Wish that you wouldnt have to go through all of this again. My heart aches for you, but I know you are a fighter and you know you have been there and done that before.

Did your endo tell you what the rai dosage will be this time? Hang in there and fight tough. There is light at the end of the tunnel.

 

[mrsklamc]

Thank you...no, she didn't say what the dosage is or whether there would be a post ablative scan but I would assume so...Surely they'd want to do that. She did say there is nothing on the scan but there's SOMETHING causing the Tg and she wants to get rid of whatever it is.

The ultrasound lady mentioned yesterday that they are starting to trend towards doing an ultrasound automatically with the nuclear scan...I kinda wondered why they hadn't.

Dr. said she'd order the RAI as soon as the TSH hit 30. Part of me has to wonder if we'd be doing this if they hadn't done the initial 'tracer' dose since Christine mentioned the school of thought that says it stuns the thyroid. Maybe this dose will be more effective then?

I told my DH I know we *can* do this but my inner two year old says "I don't WANNA!'