The THYROID Thread

[luvmarypoppins]

funkydelia - have you gotten your test results back? Wishing you all the best.

Well my endo visit is later. I actually saw I have an old bruise on my hand that I can show her. So at least she knows what I am talking about. Sounds strange wishing you want a symptom etc. Sometimes I feel like the boy who cried wolf with these drs. when you say something and they always say oh that can never happen, thats strange etc. Unfortunately they see that things that are never suppose to happen always seem to with me. Guess unfortunately I have a well documented medical record for all the wrong reasons.

Hope everyone is doing well and enjoying the summer. Check in when you can.

 

[Christine]

Had my endo visit on Monday and got my results this morning.

My TSH is at 0.3 even though I decreased my dose a bit last time. So my TSH went lower (it was at 0.5) yet my Free T4 went way down. That is really odd.

I did have my Vitamin D tested and my level was only at 20--not good!

My hematocrit seems to be on the lower side of normal, which is odd. I had problems with that MANY years ago but I got it under control. I wonder why it's slipping a bit. Hard not to think the worst, like I've got bleeding somewhere. Head in the sand...head in the sand...

 

[luvmarypoppins]

Christine - sorry you are dealing with all these issues. How do you feel with the tsh at 0.3? Well it was good for you that it decreased from 0.5. My endo always wants it as close to zero as possible. And you decreased the dose of levo? Strange, yes.

What did the endo want you to do for the low vit d? Is over the counter supplementation sufficient. That would do nothing for me hence the script for the high vit d dose weekly.

Does your endo want to do any more testing about the hematocrit?

I hope you can get all these things straightened out so you can enjoy being you and be feeling your best.

And speaking of endos too...here is my update from today....

My tsh was 0.1 and the tg was undetectable which she said is excellent, she is very happy and says I am right where she wants me.

Sono was great - nothing seen

I lost 12 lbs since my last visit, yay!

She doesnt know why I am bruising

Told her about my horrible bone pain again from the reclast infusion. She said I will not be getting it next year due to all the bad side effects which of course no one else has etc. So the plan is to have the bone scan in Sept. The bone scan should show improvement over a 2 year period.(comparing it from 2 years ago). If there is no improvement then she is going to think about some kind of shot I would get twice a year.

Biggest concern for her was she is questioning this one med I take for my gastric issues. She said long term it is know to produce carcinoid tumors in the gi tract and I have been taking it for such a high dose for so long etc. She wants me to see a gastro from the univ. hosp. So I have 2 names. Since I always have gi issues, I guess its good to get checked out.

She was talking about only seeing me once a year and calling me for the 6 month results instead of coming in. I said no I would still like to come in for the 6 months. I didnt tell her she is the only dr I see since I dont go to a regular gp or ob/gyn etc.

Whew, that is enough for one visit!

 

[macraven]

Had my endo visit on Monday and got my results this morning.

My TSH is at 0.3 even though I decreased my dose a bit last time. So my TSH went lower (it was at 0.5) yet my Free T4 went way down. That is really odd.

I did have my Vitamin D tested and my level was only at 20--not good!

My hematocrit seems to be on the lower side of normal, which is odd. I had problems with that MANY years ago but I got it under control. I wonder why it's slipping a bit. Hard not to think the worst, like I've got bleeding somewhere. Head in the sand...head in the sand...

did your endo put you on ergo for the low Vitamin D level?
i have hasimoto for over 20 years, really haven't been able to get to the levels that would be best for me.

i changed endo this year and she ran the test for vitamin D.

my test came back with a level of 7 for the Vit. D.
started taking 50,000 iu weekly and will retest regularly.

endo told me the hypothyrodism and low levels of vit D go hand in hand.

 

[luvmarypoppins]

Anyone see the little article on the Yahoo news today that low vitamin d levels are associated with a 50% more chance of developing dementia and alzheimers?

I already have a lot of memory problems at times. More so when tired or stressed etc.

 

[Christine]

How do you feel with the tsh at 0.3? Well it was good for you that it decreased from 0.5.

I feel okay. What's really strange is that my TSH went lower but so did my T4.

What did the endo want you to do for the low vit d? Is over the counter supplementation sufficient. That would do nothing for me hence the script for the high vit d dose weekly.

Take 2000 mg Vit D.

Does your endo want to do any more testing about the hematocrit?

Nope, just told me to take some iron, especially since it was in the normal range, he didn't seem too concerned.

Honestly, I asked for these additional tests. I like the guy be he is solely focused on my thyroid issues and doesn't want to deal with anything more.

Biggest concern for her was she is questioning this one med I take for my gastric issues. She said long term it is know to produce carcinoid tumors in the gi tract and I have been taking it for such a high dose for so long etc. She wants me to see a gastro from the univ. hosp. So I have 2 names. Since I always have gi issues, I guess its good to get checked out.

What medication is that?

 

[Christine]

did your endo put you on ergo for the low Vitamin D level?
i have hasimoto for over 20 years, really haven't been able to get to the levels that would be best for me.

i changed endo this year and she ran the test for vitamin D.

my test came back with a level of 7 for the Vit. D.
started taking 50,000 iu weekly and will retest regularly.

endo told me the hypothyrodism and low levels of vit D go hand in hand.

He just told me to take 2000 mg every day. He told me they only do the prescription for really low levels. I guess 20 doesn't quite hit that mark but, wow, 7!!

 

[Christine]

Anyone see the little article on the Yahoo news today that low vitamin d levels are associated with a 50% more chance of developing dementia and alzheimers?

I already have a lot of memory problems at times. More so when tired or stressed etc.

Yes, it was also in today's Washington Post. Levels below 25 increase your risk of Alzheimer's by 53%. Great.

 

[macraven]

He just told me to take 2000 mg every day. He told me they only do the prescription for really low levels. I guess 20 doesn't quite hit that mark but, wow, 7!!

the last time i checked, anything 30 to 20 was considered low,
under that was severe.

i guess some labs use different numbers in what is considerated severe.
mine was labeled extremely severe and had to go with the RX ergo.

maybe your endo feels if you get more sunlight, an over the counter vit d would be okay.

i came back from orlando and had the lab work drawn 3 weeks later and had the low number.

if you have the test ran again and are on the OTC vitamins, i hope your level does rise.

 

[macraven]

Yes, it was also in today's Washington Post. Levels below 25 increase your risk of Alzheimer's by 53%. Great.

very scary.........

 

[Christine]

the last time i checked, anything 30 to 20 was considered low,
under that was severe.

i guess some labs use different numbers in what is considerated severe.
mine was labeled extremely severe and had to go with the RX ergo.

maybe your endo feels if you get more sunlight, an over the counter vit d would be okay.

i came back from orlando and had the lab work drawn 3 weeks later and had the low number.

if you have the test ran again and are on the OTC vitamins, i hope your level does rise.

I think my level of 20 was considered "insufficiency." Once you hit 19, you are "deficient."

What I am amazed about is the varying practices between doctors of what they will treat and what they won't. I think there is no general consensus in the medical community right now of the correct amounts to use and when. I have several friends who tested in teh "20 something" range with different doctors and they did not get the 50,000 IU treatment. I only know one woman who has and her level was at 12.

 

[branv]

Interesting. I had a 20 for my vit D, and was told to take 4000 mg OTC.

 

[angwill]

Just looked up my vit D results. Last year August I was 29 and told to take 2000mg OTC vit D 2x a day for total of 4000mg. Then March this year I went up to 51 on the OTC. Just thought I would throw that out there. My memory seems to go crazy when my TSH has been high over the years. I have had hypothyroid and hashimotos for about 20 years and last year was the first time my Vitamin D was low. It sounds like I have been lucky. I thought it was just low from having my thyroid taken out and losing a parathyroid.

 

[macraven]

Just looked up my vit D results. Last year August I was 29 and told to take 2000mg OTC vit D 2x a day for total of 4000mg. Then March this year I went up to 51 on the OTC. Just thought I would throw that out there. My memory seems to go crazy when my TSH has been high over the years. I have had hypothyroid and hashimotos for about 20 years and last year was the first time my Vitamin D was low. It sounds like I have been lucky. I thought it was just low from having my thyroid taken out and losing a parathyroid.

that is great your vit d increased up to 51.
my past docs never did run those tests for the vitamins.
i switched to another endo and pleased with her and how she handles my situation.

i am hoping that once i hit a higher level, my bruising will go away.
the leg cramps are miserable to have during the night and was told that will go away also when my vit d level rises.

my T3 and TSH are still out of range.
some times the tests are good and then, i have no idea why it happens, they go out of range. this has gone on for years.........

 

[luvmarypoppins]

I feel like I am the only one who doesnt know what their vit d number is, lol. All she told me this time was - its perfect! So I still have to take the 50,000 iui script.

My dh finally saw his friend. He said they only took out half his thyroid and are still deciding whether to give him synthroid or not.

Dh said his scar is so tiny, about 2 inches and you can only really see it if he actually bends his neck. The most important thing my dh noticed was that his friend does not have the raspy voice anymore.

I dont get leg cramps but I do get the cramps in m feet during the night. I make sure to try and eat a banana as much as possible etc.

Macraven - I hope the cramps decrease for you. I think they are so painful and such a sleep disruption etc.

 

[macraven]

I feel like I am the only one who doesnt know what their vit d number is, lol. All she told me this time was - its perfect! So I still have to take the 50,000 iui script.



Macraven - I hope the cramps decrease for you. I think they are so painful and such a sleep disruption etc.

thank you.

my endo said the leg cramps are due to the low level my vit d is at.
i tell you, it is miserable to be woken up with a leg cramp........
but, i have been reassured when my levels rise, this problem will disappear.

how long have you been on the ergo?
i was told i should be on it for one year.

 

[angwill]

LMP,
I always ask for copies of my labs every time I get them. I can also check in online and they are all there. Tonight I went into the website and if I click on any test it will give me all my results from when I started getting them done in that hospital system.

Macraven,
After surgery I had the most God awful leg cramps and stomach cramps along with horrible join pain mostly in my shoulders. I also itched so bad I would scratch till I bled. Once I was through hypo hell and had my meds back after my WBS along with vitamin D and an increase in calcium those things almost completely went away. The only thing left is a little itch that is not intense at all, and I have a weird rash behind my ears that comes and goes. These were things I never had issues with before surgery despite being Hashimoto's. I do hope your cramping goes away because it can be awful.

Wanted to add that my TSH, T4 and T3 have always fluctuated and my weight right along with it. I was told that once it was removed I should not have as much of an issue with it fluctuating but it has been a year and we are still playing with meds. My endo just added cytomel and decreased my levothyroxine last month to see if we can get my T3 to rise and see if it helps with my weight fluctuating with my TSH levels. I lose and I gain and I lose and I gain everytime we have a med switch depending on the numbers.

 

[Christine]

angwill,

What is your T3 level? I just had mine done and it seems okay but what seems okay in "doctor world" isn't necessarily what's really ideal.

That's good to hear that you were able to get your D level up so well. My doctor told me to take 2000 IU per day. I have the little gummies from Costco and I've been using that for the last few days, but I have gotten some stomach cramping and not sure if it's from that or what. I may try a different type.

Interesting about the itching and rash. What type of rashes did you have. I have very sensitive, dry skin anyway but my shins can get VERY itchy and have been for some time now. I have also had that go away when my iron levels are more robust. We shall see what the vitamin D does.

I can't say I really have rashes but I get odd spots here and there for no reason. Uggghh, sometimes I just hate living in this body!!!!

 

[SingingMom]

I ask for copies of all labs, too. I give them to all my doctors. Lol I was very Low on vit D a few years back and was put on the mega dose. I was told to continue with over the counters, so I take 5000 mg a day, pays whate ER isn't my one-a day. So far it has been good.

Just booked my neck ultrasound. Don't really see the point - 21 years now, but this new endocrinologist likes to have them every 2 years. This is my second with her. Also booked my mammo & ultrasound - September will be "fun". Lol

Off to Aulani in a week! Going to start packing today!!!!! "SingingMom" ....Sent from my iPad using DISBoards

 

[angwill]

angwill,

What is your T3 level? I just had mine done and it seems okay but what seems okay in "doctor world" isn't necessarily what's really ideal.

That's good to hear that you were able to get your D level up so well. My doctor told me to take 2000 IU per day. I have the little gummies from Costco and I've been using that for the last few days, but I have gotten some stomach cramping and not sure if it's from that or what. I may try a different type.

Interesting about the itching and rash. What type of rashes did you have. I have very sensitive, dry skin anyway but my shins can get VERY itchy and have been for some time now. I have also had that go away when my iron levels are more robust. We shall see what the vitamin D does.

I can't say I really have rashes but I get odd spots here and there for no reason. Uggghh, sometimes I just hate living in this body!!!!

The vitamin D I buy are little round liquid pills from Sam's club or Walgreens when they are bogo.

I keep reading how Hashimoto's patients are prone to having Celiac Disease because once you have an autoimmune disease like Hashi your likely to get others like Celiac. That said I have had intestinal issue for about 2 years now and had the doctor test me for Celiac last month and I don't have it. I have been eating activa and taking a probiotic and it has helped quit a bit. I haven't had stomach cramping since being in hypohell after surgery thank God because it was awful where I couldn't move. I don't know which was worse that or the shoulder joint pain that felt like a knife was cutting into it.

My iron levels were tested and were good. The itching on my legs comes with little blisters that are actually under the skin not raised. The itching elsewhere comes with a slightly raised rash. Behind my ears I get little fluid filled bumps that pop and scab. I didn't have any of these before thyroid surgery. I am always using lotion or coconut oil especially on my legs and shins. My legs have always been extremely dry since my thyroid issues started 20 years ago but never itchy till surgery.

My T3 levels have been between 2.6 and 2.9 over the last year and a half so low end of normal. My TSH and T4 have both been on the hypo side of the scale however. T4 is 1.75-2.29 so higher than norm and TSH 0.06 to 0.12 so low end of norm. We will see if lowering the levothyroxine and adding cytomel will bring the TSH up just a bit and bring up the T3 levels to a higher norm. I love the health system website to get all my test results without pulling out the paperwork. lol