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Preparing to See Doc Tomorrow

thyroidstory.mivox.com was started as a simple blog dealing with my new diagnosis of hypothyroidism. Topics include medical information about hypothyroidism, information about hypothyroid medications like levothyroxine (Synthroid) and Armour Thyroid, as well as natural supplements like Thyromine, vincopectine and various vitamins and minerals. The site has now expanded to include discussion forums where other hypothyroid patients can discuss their experiences with hypothyroidism, and share tips for what medications, supplements and weight loss strategies have worked best for them.
Submitted by mivox on Friday, 21 July, 2006 - 6:20amTests & Test Results

[posted by a "guest" as a blog comment ... please create an account and log in when you post, so we can all see who you are, and give you a proper welcome! :-)]

Hi All,

I'm feeling a little dread about seeing the doctor tomorrow to discuss my first labs:

Ferritin 22.5 (11.0-306.0)
TSH 1.34 (0.34-5.60)
Free T4 0.79 (0.58-1.64)
Free T3 2.8 (2.1-3.7)

I just received his note in the mail and it says that everything, including Ferritin, is normal and no changes are needed. Elsewhere I read that a Ferritin of 22.5 is very low. I'm so weary of this that I'm considering packing it in and trying to sort things out without meds. I'd appreciate any impressions of these labs from your experience and/or any advice about what to tell the doc. I have about a third of my hair volume left and more falls out all the time, my weight won't budge, and I can't focus anymore. He would not increase my starting dose of 1/2 grain armour after two weeks and now it looks as if he won't at all. I know..."find someone else to work with." I'd like to avoid that if possible because I just don't have the energy for it. Is there anything I might tell him that will make a difference?

Thank you!

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my test results are 2.9 TSH
Submitted by antoinette on Friday, 21 July, 2006 - 8:14pm

hi mivox i see you changed everything around:) well ive been on armour for 2 months now i beleive,and my tsh is now 2.9 i feel normal they say im in the normal range im i been taking 60mg twice a day since im in the normal range do i just take once a day now?? or do i stay on same? help is appreciated:)

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If you feel good ...
Submitted by mivox on Friday, 21 July, 2006 - 9:10pm

... then I'd say just stay at the same dose. :-)

That's at the high end of normal, but if you're feeling better that's what counts!

(Also, I deleted your duplicate comments. :-) No worries ... I know the new site is a big change, so I'm moving things around and trying to keep everyone up-to-speed.)

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Re: Preparing to See Doc Tomorrow
Submitted by mivox on Friday, 21 July, 2006 - 9:16pm
Quote:

I'm feeling a little dread about seeing the doctor tomorrow to discuss my first labs:

Ferritin 22.5 (11.0-306.0)
TSH 1.34 (0.34-5.60)
Free T4 0.79 (0.58-1.64)
Free T3 2.8 (2.1-3.7)

Ferritin is definitely way at the low end of normal, according to the lab range. I really wish docs wouldn't just blow people off because they're "within" normal range when it's so obvious that they're at the far end of the spectrum!

Have you tried taking iron supplements? If your doc won't increase your Armour at all (which I could understand, seeing the numbers ... if your doc is a "numbers first" kind of person), you might try taking an iron supplement. Lethargy is a symptom of anemia, and chelated mineral supplements are available OTC so your doc doesn't need to approve it.

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How to Use the New ThyroidStory Site (Where & How to Post)
Technical Help For the New Site (Feel free to post your questions!)

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tests
Submitted by antoinette on Friday, 21 July, 2006 - 11:20pm

yea the site is differ.so iposted a couple not knowing if i did it right:),,,,, so the same dose?? my doc.actually wanted me at 1.0-1.5 i was 33 2 weeks ago then tested this wed,now 2.9 do you think if i stay on same dose itll lower? to what im looking for ,i dont know how to stablize have a fear that my doc.may not be able to figure it out since she knows nothing about armour and shes gone till the 1st so im seeing some other doc. dont want to go into hyper mode:( what do you think

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Antoinette: How do you feel?
Submitted by mivox on Friday, 21 July, 2006 - 11:27pm

The most important gauge is how you feel. If you feel like you still have symptoms, you can certainly stand a bit more Armour, judging from your TSH. My doc upped my Armour dose on my last tests, and my TSH was around 2.45. 2.9 is the high side of normal, as I understand it. (See this post for more info: TSH: One size does NOT fit all)

On the other hand, if you feel good now, and you want to stabilize at your current levels, just keep taking the same dose you're on now. If you go into hyper mode, you'll definitely notice the symptoms, and you can cut back from whatever dose you're at.

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Technical Help For the New Site (Please post your questions!)

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reply to how do u feel? (from Antoinette)
Submitted by Guest on Friday, 28 July, 2006 - 1:05am

hi mivox sorry for the delay in response,actually as of now im feeling really fatigued and drained im thinking i need to up my dose of armour.im on 60mg twice a day have any advice on how much i should up?? i was thinking taking my 60mg plus a half then on my 2nd dose just the 60mg,or 60mg plus half and 60mg plus half,what do you think??

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Not sure ...
Submitted by mivox on Friday, 28 July, 2006 - 9:37pm

I'm needing to do some research myself ... My latest labs (at 60mg 2Xs/day) came back with a TSH of .035, and my doc said there were issues with calcium metabolism and long term heart problems if you're "over-replaced", which sounded kinda scary.

It may be that her warnings apply to synthetics and not Armour, but I'm not sure. Cautiously, I'd say go ahead and try a higher dose, but I've just been given a new lower-dose prescription (a 60mg 1x/day and 1/2 of a 90mg 1x/day) because my TSH was so low.

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How to Use the New ThyroidStory Site (Where & How to Post)
Technical Help For the New Site (Please post your questions!)

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To TSH or Not to TSH
Submitted by Ariadne on Friday, 28 July, 2006 - 10:51pm

Hi Mivox,

This is a very important question for so many. On the continuum of hypo treatment the far left advocates—quite compellingly to my untrained eye—for using free T3 and T4 as guides, aiming for the upper range of these levels. TSH, they say, has value only when it is high. Here's a brief summary of their rationale:

"'TSH comes from the pituitary and stimulates the thyroid to make hormone. If thyroid is high enough in the blood then TSH will go down because it doesn't need to tell the thyroid to make anymore hormone. When blood levels of thyroid hormones go low, then TSH goes higher, signaling the thyroid to make more hormones.'

'When you take Armour, the pituitary senses the larger than normal amount hitting the blood as you take your pill and shuts down production of TSH. When you use this up..and don't take more right away, then the TSH is STILL suppressed and this can cause you to feel even more hypothyroid than before. This can happen until you get on an optimal dose of Armour and blood levels of T4 build up enough to keep you level all day long. At this point TSH can be really suppressed, but you are not hyper..unless you are experiencing hyper symptoms. A much better indication of hyper in labwork is to test the Free T3 and Free T4. for optimal thyroid hormone levels, these should both be high in range and some people feel best with a Free T3 a little above range. The reason I say this is because of the experience of MANY patients...this is where we feel best.'"

And yet I live in fear of shutting-off thyroid production completely, not to mention the heart and calcium issues you raised. The other side, of course, is the fact of feeling so much more myself after taking a higher dose. My inclination is toward moderation...taking a dose my conservating doctor is happy with and doing my best with Selenium and Iron, etc. And yet, again, what if my body eventually needs full replacement to be whole and I end up missing out on a lot of life because I'm half brain-dead? My sister-in law has taken a very small dose (Synthroid) for twenty years. She's 57 and on disability for cognitive difficulties that are growing worse. When we went to lunch last week I had to cut her meat for her, take her to the bathroom, etc. I asked her husband about her experience with thyroid meds and he said that she started out way too high, got hyper, then reduced to where she is. He said that according to TSH she's right where she needs to be. She has no other medical conditions though her grandmother did develop Alzheimer's later in life.

I'd love to hear from others going through this dilemma and if there are any vets listening who went through it and came out the other end. Sometimes I feel I should give-up Armour competely or head toward full replacement.

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My hunch ...
Submitted by mivox on Friday, 28 July, 2006 - 11:10pm

... and what I am needing to research (which is not easy, because so little research is being done with Armour), is that the bone-density problems are primarily a side effect of a) low thyroid production overall includes low production of calcitonin, and b) if you are only replacing T4 and/or T3, shutting off natural thyroid production would completely halt calcitonin production. So, given that Armour includes calcitonin, it SHOULD prevent this problem? As for heart problems, my pulse rate was LOWER than it was at my last visit ... so I'm dubious about that.

That said, between my 90mg/day and my 120mg/day Armour dose change, my T4 and T3 levels did not change significantly. So. I'm a little baffled.

I'm going to research (and write up, of course) the calcitonin question, and if the new prescription is not doing it for me as far as feeling better, I'm going to go to the doc with the calcitonin info and ask to be put back up to 120mg/day.

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How to Use the New ThyroidStory Site (Where & How to Post)
Technical Help For the New Site (Please post your questions!)

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tests
Submitted by Guest on Friday, 28 July, 2006 - 11:20pm

mivox-what are the syntoms of hyper how would i know its been a while so cant quite remember what are the tell tale signs?and if you were .035 are you in hyper mode? is she saying that taking armour will cause heart problems?

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hyper ...
Submitted by mivox on Friday, 28 July, 2006 - 11:27pm

My T4 and T3 levels were within (or very near to) normal range, so I'm not in hyper mode ... She's not saying Armour causes heart problems, she's saying that "prolonged over-replacement" can cause heart problems and loss of bone density.

What I need to figure out is if that problem is universal to hypothyroid patients, rather than (as I suspect) being a particular side effect of over-replacement with synthetic meds.

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How to Use the New ThyroidStory Site (Where & How to Post)
Technical Help For the New Site (Please post your questions!)

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TSH-Heart & Calcium
Submitted by Ariadne on Friday, 28 July, 2006 - 11:29pm

Right. There are very many references on the ThyroidMadness references page to studies saying that higher T3 is protective of the heart. The jury seems to be out about calcium, which is a big issue for me, too. I look forward to what you find. Once again you're ahead of the curve.

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am i hyper??
Submitted by Guest on Saturday, 29 July, 2006 - 11:53pm

hi mivox hope you find what your looking for and you get back on track:)question-i uped my dose yesterday by 15mg to each 60mg so im now on 75mg twice a day but im startin to feel dizzy feeling heart rate feels like its alittle faster and the feeling that im goin to get an anxiety attack what you think i should do? cut back? i hiked up dose cuz i was feeling really fatigued like i needed to raise it any advice would really help me out feels like im goin to have a panic attack sometime soon:(

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I felt a touch of this 'til
Submitted by Ariadne on Sunday, 30 July, 2006 - 2:47am

I felt a touch of this 'til dividing my Armnour into three doses throughout the day and early evening. Now I feel steadily well, really as if I'm coming back to life.

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Re: To TSH or Not to TSH
Submitted by Guest on Thursday, 3 August, 2006 - 5:54am

And yet I live in fear of shutting-off thyroid production completely, not to mention the heart and calcium issues you raised. The other side, of course, is the fact of feeling so much more myself after taking a higher dose.

Here's a link to info re: TSH suppression

http://www.altsupportthyroid.org/tsh/tshmedrefs5.php

The study about osteoporosis that doctors cite as a reason to keep patients well above suppression range (and maybe therefore undermedicated) was I believe hyperthyroid patients. These are people whose TSH were suppressed due to their own glandular overproduction of thyroid hormone. So if you are concerned that by shutting down your TSH you are no longer producing enough of your own hormone to counter potential osteoporosis, how does that jibe with the fact the study was done on people who were not taking synthetic hormones, but overproducing natural T1, T2, T3, T4 etc.?

And like you say--what good are strong bones going to do you in your 80s if you're feeling like @#$% from now until you get there?

Your TSH is not an absolute indicator of overreplacement.

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Great link!
Submitted by mivox on Thursday, 3 August, 2006 - 6:18am

Thanks for that link! I'll definitely take that one in with me if I decide to ask to return to a higher dose in 8 weeks! :-)

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help please! :(
Submitted by antoinette on Thursday, 3 August, 2006 - 9:51pm

hi mivox and all im having problems,my doc,says my tsh is 2.9 and my t4 i think was 1.4 she dint test my t3(dumbass) for the past week my muscles all over my body been feeling tired now i cant sleep right, im tossing and turning, she insists that i have a tsh of a normal person, withc i heard a normal thyroid is 1 and below is this true?? im currently on 60mg twice a day been on that dose for 6 weeks now i dont feel normal like as if i need more thyroid i was feeling sooo good about a week ago then feels like im going downhill just alittle,im thinking of uping by 15mg but dont know how to ,and when i should, i really need some advice im so frustrated my doc isnt listening to my syntoms goin by fricking numbers i was going to just up my dose myself and see her later wehn im feeling normal,im also having some emotinal ups and downs witch i dint feel like that a week ago please help me:(

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Eek. New doc, possibly?
Submitted by mivox on Thursday, 3 August, 2006 - 9:57pm

Yeah, most people are NOT going to feel OK at 2.9, from what I understand. Have you looked at this article (TSH: One size does NOT fit all), and printed out the files it references? Maybe if you can show the doc that there are newer recommendations, and that you're at the very top end of normal by the most liberal of the newer guidelines, you'd get a new prescription?

Or, is there any way for you to see another doctor?

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How to Use the New ThyroidStory Site (Where & How to Post)
Technical Help For the New Site (Please post your questions!)

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maybe
Submitted by antoinette on Thursday, 3 August, 2006 - 11:02pm

thanks mivox for the quick response,yea i was thinking of getting a new doc.im just so frustrated cuz i was doin so well now im feeling bad,im going to print out the references and show her,im goin to up my dose by 15mg weather she likes it or not and when im feeling better thatll prove that im right and shes wrong, any advice on how i should up my dose?should i take 15mg along with my 60mg twice a day or just 15mg with my 60 once,meaning(75mg twice a day)or start off slow and take 75mg then 60mg?what do you think

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cognitive effects
Submitted by Guest on Sunday, 3 September, 2006 - 6:43pm

I know someone who has been on thyroid replacement since she was 17 and is now 73. She looks great and is in perfect mental condition. As a matter of a fact she is still holding down a job that requires a sharp mind. She handles documents for a doctor.

Have you read somewhere that thyroid replacement wears on the brain?

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cognitive effects
Submitted by Guest on Sunday, 3 September, 2006 - 6:46pm

the above post is in reponse to Adriadne's reply

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