Re: Hi all, my results after I flipped to hyper from hypo...
Okay, just saw my doc. It turns out that my numbers were off - either I wrote them down wrong, or they told me wrong.
My free T4 was 24 and went down to 23, not 10 within 2 weeks.
My free t3 was 11.11 and went down to 10.62 within 2 weeks.
So, nothing major. So, for that reason the doc didn't think that I should be discontinuing my meds, and didn't order new bloodwork either. I wont be seeing my endo for about a month, and my doc and she both consider me "stable" at this time, because they say they know that I have Graves for sure, and they know that it takes 6 months to a year for it to end itself with the suppression meds.
I felt pretty satisfied at the end of it, though I guess I would've liked more bloodwork anyways.
He also looked back to when I started coming to the clinic, and my numbers for my TSH was always "within normal range", but fluctuated from 3+ (never lower than 3) to 6.0, to 4.7 to 9.0, yet my Free t4 always stayed around 11. He says looking back that they could have tried to give my some Levo to see if my norm is lower and to see if I felt better. They said that it's all about symptoms - well I told him that I gained 90 pounds within 5 years, was tired all the time, cold, and had bad dry skin. And of course it turned into a "well if we all had the benefit of hindsight ahead of time this world would be a different place".
So, I felt like a big idiot. Here I stopped my meds - now have to keep taking them. I will take benadryl with it to help with the itching. He says he's almost positive I have Graves from my numbers and my anti-tpo results (340+ instead of 0-30).
My goiter is a "looks like one, but might not be one" situation apparently. Also, it's not a solid mass so they said that cancer is very unlikely.
So, mixed bag. I feel stupid, and the doc thinks that I don't trust him and that I'm overly-researching and "confusing myself". I guess he's partly right...
Re: Hi all, my results after I flipped to hyper from hypo...
Please do not beat yourself up over this....I think something is still amiss.
What happened during your appointment reminds me so much of what went on between me and endo #2. I'd go into my appointment, armed with all sorts of research and she'd shoot down everything I said and confuse me.
I "dated the wrong guy for too long" with her.
We really need to see reference ranges whenever labs are posted 'cuz they vary from lab to lab.
But, in looking at your earlier posts and using the information you just provided now, your FreeT4 went from 24 (top of the 10-24 range) to 23 after going from 75mcg levo to 25mcg for two weeks.
And, your slightly over-range FT3 went from 11 to 10.62 after the same amount of time.
Firstly, it takes at least 4-6 wks. for a dose adjustment to reflect in levels.
Secondly, if you have Graves' disease, your FT4/FT3 levels would have INcreased, not decreased. And, your TSH would be suppressed....undetectable.
Hate to tell you this but, you are not being given accurate information.
Your TPOabs do NOT confirm Graves' - all they confirm is an antibody attack on the thyroid that is causing inflammation.
You need that TSH receptor antibody test to confirm Graves'.
Your history of high TSH points directly, without a doubt, to hypothyroidism....so does your weight gain and other symptoms.
The doctors that treat thyroid disease are often worse than the disease itself.
Re: Hi all, my results after I flipped to hyper from hypo...
me again
Is there any way you can get blood work done? I know there are a bunch of online labs people use - not sure if they're available in Canada.
I am very concerned about you continuing on 5mg Tapazole....I think you understand what's been said about the fact that it will take longer for your FT3 to drop.
And, I bet your FT4 has already dropped down quite a bit after taking Tapazole for 2 wks.
Re: Hi all, my results after I flipped to hyper from hypo...
typical me...back again
Something seems "off" with your FT4 of 11 as you quoted your TSH history....if your FT4 was indeed 11 when you had those high TSH levels, that tells me your FT4 was at the bottom end of the range (which you posted earlier as 10-24).
Couple that with your weight gain and other symptoms...your doctors should have given you levo back then.
I guess when you said "they could have seen if your norm was lower", they were referring to your TSH 'cuz nobody's FT4 norm is at the bottom end of the range.
You poor thing - suffering all these years....suffering now.....and, quite honestly, I think you can expect to continue suffering unless you can see another doctor.
Re: Hi all, my results after I flipped to hyper from hypo...
Sammy
My TSH was found to be less than .015 and after being off of 75mg Levo for 2 weeks it was still non-detectable - so that's also why they think I have Graves.
When I said that they should have checked if I had a lower norm, I meant my TSH - that it was never lower than 3 and some people need around 1 or 2 to feel best.
He's finally admitted to me that they "could" have given me some Levo back then to see if I felt better, but again - 'hindsight', plus he wasn't my doc all along - just in the last 3 years, but he did have the info - same clinic - same file.
Re: Hi all, my results after I flipped to hyper from hypo...
I'm sorry...it seems your doctors are not aware of yet another aspect concerning TSH.
TSH lags behind 6 wks. from changes in thyroid hormone levels.
What this means is - your thyroid hormone levels can change as a result of a dose adjustment but it's effects on TSH will not be evident until 6 wks. after that change.
So, the TSH reading you got after being off 75mcg levo (and on 25mcg) for two weeks actually corresponds to when you were taking 75mcg levo.....and a lowish TSH is more than expected when people take thyroid hormone replacement meds.
When someone has Graves', the TSH is undetectable and the thyroid hormone levels are very much over-range. I can understand the doctor's thoughts about Graves' but do not understand why they didn't test for it....then, they would know the right thing to do moving forward - rather than starting you on Tapazole almost a month after the labs/symptoms that caused concern.
OK...re your comments about lower norm. I thought you were referring to your TSH. Truly, TSH 2.0 is considered high. Most people fare better with TSH 1.0 or lower.
And, remember, TSH is not a good indicator of thyroid function....especially once the patient is taking thyroid hormone replacement meds such as levo. The HPT (hypothalamic-pituitary-thyroidal) feedback loop is interrupted when exogenous thyroid hormone comes into the picture....this boils down to TSH not being helpful at all (and it really isn't to begin with )
Hindsight is often 20/20 for us since we've been forced to learn as much as possible about our disease and, by the time we learn relevant facts, we look back and realized things could have been better in the past.
Doctors treating thyroid disease shouldn't have these 20/20 hindsight experiences. As you mentioned, he had the records for the past 3 years and he "should" (vs. could) have tried giving you levo to see if you felt better.
That's how doctors did things before the TSH test was invented in the 1970's....they gave trial doses of levo to see if a patient presenting with obvious hypo symptoms would feel better.
The TSH test was the undoing of things for thyroid patients.
Re: Hi all, my results after I flipped to hyper from hypo...
Me again
New blood work will tell you a lot. It's been over 6 weeks since your last labs and over 2 wks. since you started Tapazole.
Tapazole's effects are fast-acting and blood levels taken after 2 wks. on a particular dose will be accurate.
And, how about putting the whole Graves' question to bed with one easy blood test?
Ask the doctor to run the TSH Receptor Antibody test (that is the test used in Canada).
Positive result = Graves'...plain and simple.
Re: Hi all, my results after I flipped to hyper from hypo...
Hi again,
so when they showed me that I had wrong numbers written down, they basically assumed that explaining that made my bloodwork request null and void, and I didn't know better than to insist on it. The doc came in, after being told by the resident I saw that I was accusing him of omitting stuff, and said - "okay, what do you think has been happening here?" So I told him. He showed me the results, and I felt stupid - seeing the wrong numbers. The idea of new bloodwork didn't come up after that, probably partly because I didn't say anything about it after that, in fact I was apologizing.
Plus, they want my endo do deal with that stuff now, though I wont see her for a while yet, because I'm now her patient, and they don't want to be making decisions on her behalf. So why don't they call her? I don't know. I think they think that everything is fine with me, that I'm being overly-concerned and overly-informed and confused and wanting some extra attention maybe.
I've read here before that the TSH is an indication of what was happening 6 weeks earlier - so you're saying that that 2 week-later test only showed what was up with my thyroid while I was still on the Levo, right? I would have needed bloodwork 6 weeks after I'm off Levo to show the accurate levels, right?
Damn, this is so confusing... I think that at this point I have no choice but to wait on my endo, because they already think I'm crazy and more bothering of them will not help.
Re: Hi all, my results after I flipped to hyper from hypo...
I understand what happened....unfortunately, hindsight is often 20/20.
I thought the levo dose was reduced to 25mcg vs. you going completely off - no matter what, the same facts apply.
Labs 2 wks. after a levo dose adjustment are pretty much meaningless....the body vacillates as it adjusts to new meds doses and things don't really settle in until 4-6 wks. after a dose adjustment.
That is why I kept saying the endo (or someone) should have run new labs before starting you on Tapazole....no one knew for sure where you were at.
The fact that your levels didn't go UP after the dose reduction is a sign you don't have Graves'.
Now, even though the actual bloodwork was discussed, how did they justify starting Tapazole based upon 6 wk. old bloodwork?
And, I would hope that, based upon your symptoms, you could still get new bloodwork since it's been so long.
No chance of calling?
Not sure if you can do this in Canada but I am aware of online lab services - you order bloodwork online and pay for it....then go to a local lab for the draw.....they mail the results to you.
Perhaps you can find a way to speak with the endo? I'm not sure how things work in Canada - there's another member on here from Canada - maybe you can contact her....she seems to be working with a knowledgeable doctor. (I know Canada is huge so this, of course, might not be realistic).
I guess, moving forward, you realize the need to maintain accurate records of your labs. So sorry you're going through this
It's hard not to feel intimidated with doctors....I lived through that with endo #2.
Re: Hi all, my results after I flipped to hyper from hypo...
I think from what I can see that I had my bloodwork about 4 weeks earlier when I got put on the Tapazole, and they didn't see any difference so I think they thought I was stable.
But, as you said, they should have tested again because they'd see the Levo dose adjustment at that point in my bloodwork.
I don't see how calling my doc would improve anything at this point. Perhaps if I call her, but I don't want to start off on a bad note with her before I even see her, right?
And I can't afford to get online labwork, plus that would start a bunch of questions - why didn't you do or that, or how do you know they're reputable, etc...
Re: Hi all, my results after I flipped to hyper from hypo...
Sammy - I think I'm in a holding pattern here. I hope that I can see my endo soon, because of all of this.
I don't think that calling the doc again at this point would help anything. I could call the endo, but I don't want to start off on a bad foot with her, before I even see her, you know...
I can't afford an online service, and I don't see how they would approve of or accept any tests done that way anyways - plus I think they would just wonder why I had done that.
Re: Hi all, my results after I flipped to hyper from hypo...
I understand where you're at.....just feel so very badly for you.
As I told you, when dealing with hyperthyroidism (true hyperthyroidism), there is no way a knowledgeable doctor should start a patient on anti-thyroid drugs based upon 4 wk. old labs.
Same thing applies to any thyroid meds dose adjustments - this was something pounded into my head during my hyperthyroid phase of Graves' - never make a dose adjustment without having very recent labs beforehand (as in, no more than a week old...2-3 day old even better).
Unfortunately, your experience is one of those 20/20 hindsight things...the best we can do with those is learn from them and hope we can use that knowledge moving forward.
Re: Hi all, my results after I flipped to hyper from hypo...
Okay, small update, but nothing good.
1) No news about any appts for my endo - it's been 1 month since they contacted her - and no letter or phone call from her yet.
2) I am forced to bother my doc again this monday, because I will be completely out of the 1 month prescriptions for both Tapazole and Atenolol by then. We'll see if he thinks bloodwork is worthy at that point.
3) Since when it rains it usually pours - I have had a serious fall and sprained my ankle, which is almost better, but I also either bruised or broke my tailbone and I have been in total pain for weeks - and of course I've read that this is something that you need to just wait out - it can take from months to years to heal - so, THAT'S AWESOME!
Further to #3 - during all of this insanity with my depression/thyroid, etc. I have found some solace in my photography and nature outings - but last weekend we drove for only 40 minutes and I was almost crying in pain 2 days later! So, it's spring - critters are out, and I am determined to either do some homeopathy or to layer my seat like the princess and the pea - because there is NO WAY I am not going to continue with the one thing that brings me joy!
Re: Hi all, my results after I flipped to hyper from hypo...
UPDATE:
Due to the info below I have called my endo - who I've yet to see for the first time, and left a message. Whether she will call me back, or a secretary, remains to be seen...
I've also posted this in my other thread, but I am definitely having some of my hypo symptoms back - just today my fatty tongue has reappeared. So, now my body is confirming that I have flipped to hypo again, yet I am still being told to take the TAPAZOLE, based on my TSH alone - which again was undetectable.
On April 9th my Free T3 was 6.27 (3-7 norm)
and my Free T4 was 15.4 (10 - 24 norm)
So that was over a week ago, and I have on my own reduced my Tapazole to 3.5mg and then to 2.5mg recently, and yet I'm developing symptoms of hypo now - so it's probably continuing to go down too far - because I'm still taking suppressants, right?
Has anyone taken both a suppressant and a stimulant at the same time? I have read that that sometimes results in a much milder thyroid response and less crazy fluctuations...
Re: Hi all, my results after I flipped to hyper from hypo...
Sorry to hear of your continuing struggles.
I am incredulous to hear how your doctors are not addressing your situation!
Your early April labs clearly indicated the need for a Tapazole dose reduction (dosing is ALWAYS based upon the FreeT4 level which should be maintained in the upper third of the range...your level wasn't even at mid-range).
The meds regimen you mention is called "Block and Replace" and is most often used for Graves' patients that have gone hypo on the smallest dose of anti-thyroid drug. This way, the patient can experience the immuno-suppressive qualities of ATD's but, with the addition of some levothyroxine, maintain proper thyroid hormone levels.
Most often, BRT consists of 5mg Tapazole and 50mcg levo (which is thyroid hormone replacement - not really a "stimulant")
We still don't know if you even have Graves' disease so, BRT wouldn't necessarily be right for you.
I think you were wise to reduce your Tapazole dose to 2.5mg....
And, yes, if you really don't need the Tapazole, your thyroid hormone levels will continue to drop.
Sure hope you can get in to see the endo soon and get labs....or, at least get some new labs within 2-3 wks. of the date you started 2.5mg.
Re: Hi all, my results after I flipped to hyper from hypo...
Good to hear from you! How was your holiday?
I will be seeing her finally sometime in the middle of May, but my doc approved new labs in 2 more weeks (3 weeks since I saw him), but again, who knows if he'll go by the TSH again.
(I may be repeating some of this...) When I told the resident that the TSH, in my understanding, is not the test one should be basing dosing on, he asked me what is - like "lets hear your expert opinion" - and I said the Free T4 & T3 tests, and he said "well, we go by TSH here and it's still non-detectable". When I asked, isn't the TSH 6 week-old info every time? He said he knew nothing of the sort.
That's partly why I changed the dose on my own. I have actually started to show some hypo symptoms that I used to have - like my fatty tongue and dry skin on my hands, but still have the palpitations at night and other seemingly-hyper symptoms.
I think that they are really in the Graves frame of thought and that is telling them that I will be hyper for months if not a year, and therefore continued Tapazole will be necessary - and they think I'm panicking and wanting to show off my "research" in order to question them.
Is it possible that I have Graves, and that in this little time I would have already flipped to hypo - does that happen with Graves? Or, does it really take the several months to work. Because, wouldn't that be the obvious proof - if that doesn't happen in Graves?
Re: Hi all, my results after I flipped to hyper from hypo...
mmandar, I am so sorry to read all this about your situation. Ugh. I really appreciate reading all you and everyone else has to say about these issues.
I'm having issues with my thyroid (or maybe it's my doctor, or anxiety, or...??) since 2/28/2011 after having been "diagnosed" hypo after an ER visit for an anxiety-related bout with heart palpitations revealed a "slightly low" TSH level.
The long and short is that I think I've been mistreated, because after starting Synthroid things have gone way down hill.
It's just mind boggling how much confusion and mismanagement there seems to be when it comes to anything thyroid related.
I'd love to hear what you all would say about my story, so I'll probably start a thread here shortly...
Re: Hi all, my results after I flipped to hyper from hypo...
Quote:
Originally Posted by mmandar
Good to hear from you! How was your holiday?
I will be seeing her finally sometime in the middle of May, but my doc approved new labs in 2 more weeks (3 weeks since I saw him), but again, who knows if he'll go by the TSH again.
(I may be repeating some of this...) When I told the resident that the TSH, in my understanding, is not the test one should be basing dosing on, he asked me what is - like "lets hear your expert opinion" - and I said the Free T4 & T3 tests, and he said "well, we go by TSH here and it's still non-detectable". When I asked, isn't the TSH 6 week-old info every time? He said he knew nothing of the sort.
That's partly why I changed the dose on my own. I have actually started to show some hypo symptoms that I used to have - like my fatty tongue and dry skin on my hands, but still have the palpitations at night and other seemingly-hyper symptoms.
I think that they are really in the Graves frame of thought and that is telling them that I will be hyper for months if not a year, and therefore continued Tapazole will be necessary - and they think I'm panicking and wanting to show off my "research" in order to question them.
Is it possible that I have Graves, and that in this little time I would have already flipped to hypo - does that happen with Graves? Or, does it really take the several months to work. Because, wouldn't that be the obvious proof - if that doesn't happen in Graves?
Oy!
Hi there!
Thanks, my vacation was great....too short, of course
Glad to hear you'll be getting labs....and, while "they" go by TSH, "they" are sorely mistaken. Maybe you could buy a copy of "Thyroid for Dummies" written by endo Dr. Alan Rubin and show them how "they" should be looking at the actual thyroid hormone levels and not TSH. UGH!
I don't know of a single person with Graves' that flips into hypo as soon as you did except for the many of us who were overmedicated with Tapazole/methimazole/PTU.
If a person is medicated properly for Graves' and has an appropriate starting dose, thyroid hormone levels fall into range after 6-8 wks. Then, moving forward from there, the dose is reduced to keep FreeT4 levels at least at mid-range, if not higher.
Remission from Graves' can happen as soon as 12-18 months after starting meds....more often 2-4 years....and sometimes never.
Going hypo from Graves' for the "right" reasons (not overmedication but, as a possible progression of the disease course) happens AFTER remission. My signature tells a typical story for 20% of Graves' patients.
All of your "Graves' mysteries" can be easily solved with the TRAb antibody test (Canada's equivalent of the TSI test)....I sure hope you can convince your doctors to run one for you....otherwise, you might want to get it done yourself.
Re: Hi all, my results after I flipped to hyper from hypo...
You can Google hypothyroid symptoms and look for lists compiled from patients' experiences....palps are definitely listed.
I am one of those people that can have palps when hypo - this would usually happen at night...or upon waking in the middle of the night/too early in the morning....I've also had moments of a somewhat irregular, heavy-feeling heart beat.
Cardiac issues are well-documented in hypothyroidism.
How was your holiday?
