Aa
preparing for my endo referral in 2 days...
Hey everyone,
Wondered if anyone can help me in what the important things to stress to the endocrinologist i am seeing this thursday are:
The history of my TSH levels are:
Dec 2008: 7.5
Feb 2009: 5.8
May 2009: 5.7
September 2009: 7.2
October 2009: 5.7
obviously they are not consistant, I have just had my Thyroid antibodies tested and the levels are normal- ruling out anything autoimmune. I have had a full blood work done for which everything else was ok.
I have over the last year suffered from: muscle weakness, tiredness, bad joint pain, extreme coldness in feet hands and nose, have gone from u.k size 4 to u.k size 8 (which doesnt bother me as i have always been too thin!), a very slight numbess in my left leg (and sometimes in my left arm), irregular periods (that are heavier than they used to be), TMJ pain (dont know if this is related or independent from thyroid problems), noticed a lot of hair falls out in the shower and when brushing, brittle nails, dry itchy eyes, vertigo (although i feel this is more related to my TMJ and grinding my teeth in my sleep).
my main worry is that my G.P keeps saying, oh, your not much over the lab range (which upper limit is 5.5) and i get so annoyed as it is still over the threshold, even if 'not by much'. She keeps trying to prescribe me mild forms of an antidepressant for my anxiety, but i keep trying to tell her that I seem so anxious because I have been feeling like this for a YEAR now and no one is doing anything.
I am worried the endo will say the same thing? Does anyone know whether they use more sensitive lab ranges or will maybe trial me on some kind of meds? I am just wondering what to expect really, and if anyone has any advice as to what I can say to insist my case.
thanks in advance for any help anyone can give,
Clare :-)
Wondered if anyone can help me in what the important things to stress to the endocrinologist i am seeing this thursday are:
The history of my TSH levels are:
Dec 2008: 7.5
Feb 2009: 5.8
May 2009: 5.7
September 2009: 7.2
October 2009: 5.7
obviously they are not consistant, I have just had my Thyroid antibodies tested and the levels are normal- ruling out anything autoimmune. I have had a full blood work done for which everything else was ok.
I have over the last year suffered from: muscle weakness, tiredness, bad joint pain, extreme coldness in feet hands and nose, have gone from u.k size 4 to u.k size 8 (which doesnt bother me as i have always been too thin!), a very slight numbess in my left leg (and sometimes in my left arm), irregular periods (that are heavier than they used to be), TMJ pain (dont know if this is related or independent from thyroid problems), noticed a lot of hair falls out in the shower and when brushing, brittle nails, dry itchy eyes, vertigo (although i feel this is more related to my TMJ and grinding my teeth in my sleep).
my main worry is that my G.P keeps saying, oh, your not much over the lab range (which upper limit is 5.5) and i get so annoyed as it is still over the threshold, even if 'not by much'. She keeps trying to prescribe me mild forms of an antidepressant for my anxiety, but i keep trying to tell her that I seem so anxious because I have been feeling like this for a YEAR now and no one is doing anything.
I am worried the endo will say the same thing? Does anyone know whether they use more sensitive lab ranges or will maybe trial me on some kind of meds? I am just wondering what to expect really, and if anyone has any advice as to what I can say to insist my case.
thanks in advance for any help anyone can give,
Clare :-)
Goolarra gave you some very worthwhile info to absorb and discuss with your doctor. I know the medical system works differently with the NHS in the UK, but there are a couple of things you should emphasize with your doctor. First is the changed reference range TSH also mentioned above. Another is that TSH is a pituitary hormone that is affected by many variables, and studies have shown that it does not correlate very well at all with hypo symptoms. The thyroid test that has been shown to correlate best with hypo symptoms is the free T3 test (FT3).
Another important thing to keep in mind is that the reference ranges for FT3 and FT4 have never been adjusted like was done for TSH, where the data base was purged of those patients that were suspect of being hypo or hyper. If this were done for FT3 and FT4, their reference ranges would move upward and narrow significantly. I believe this is the basic reason why, as Goolarra recommends, that FT3 and FT4 test results in the lower end of the range need to be increased with medication in order to alleviate symptoms. Symptom relief should be all important.
Another important thing to keep in mind is that the reference ranges for FT3 and FT4 have never been adjusted like was done for TSH, where the data base was purged of those patients that were suspect of being hypo or hyper. If this were done for FT3 and FT4, their reference ranges would move upward and narrow significantly. I believe this is the basic reason why, as Goolarra recommends, that FT3 and FT4 test results in the lower end of the range need to be increased with medication in order to alleviate symptoms. Symptom relief should be all important.
You seem to be very knowledgeable about thyroid disease. I was just diagnosed with Hashi's. Thyroid disease is a very hard disease to understand. I was wondering if all Hashi patients usually have high TPO's Tgab's? or if it means something else also if you have a autoimmune disease? not sure of the relation to one another, after reading that some people have normal TPO's & Tgab's, and some are high as mine but both have thyroid disease. Please help me in understanding. From my understanding the true test for Hashi's according to my PCP, are the antibodies, TPO & Tgab, is this true? From what I've read, it's not just the antibodies that make that determination. Another question I've is, not sure when I should be put on something for Hashi's? Here are my most recent results:
3/24/2012-TSH 0.236, range: 0.350-4.940
Free T4 1.00 range: T4-0.70-1.48
4/16/2012- Anti-Microsomal 599 IU/ml also known as the TPO range: 0-34
Thyroglobulin Ab <20 IU/ml range: 0-40
5/16/2012-TSH 0.693
Free T4 0.98- range: T4-0.70-1.48
Free T3 3.74- range: T3-1.70-3.71
7/5/2012-TSH 1.307 uIU/mL
Free T4 1.04 ng/dl
Ultrasound report:
The right lobe measures 4.1 x 1.5x1.5 cm. The left lobe measures 3.8 x 1.6 x 1.3 cm. Heterogeneous thyroid parenchymal echotexture without evidence of a discrete nodule. My understanding is that if my ultrasound was normal, there would be no concern of thyroid cancer and no reason for a thyroid scan.
Thank you for taking the time in viewing my post.
3/24/2012-TSH 0.236, range: 0.350-4.940
Free T4 1.00 range: T4-0.70-1.48
4/16/2012- Anti-Microsomal 599 IU/ml also known as the TPO range: 0-34
Thyroglobulin Ab <20 IU/ml range: 0-40
5/16/2012-TSH 0.693
Free T4 0.98- range: T4-0.70-1.48
Free T3 3.74- range: T3-1.70-3.71
7/5/2012-TSH 1.307 uIU/mL
Free T4 1.04 ng/dl
Ultrasound report:
The right lobe measures 4.1 x 1.5x1.5 cm. The left lobe measures 3.8 x 1.6 x 1.3 cm. Heterogeneous thyroid parenchymal echotexture without evidence of a discrete nodule. My understanding is that if my ultrasound was normal, there would be no concern of thyroid cancer and no reason for a thyroid scan.
Thank you for taking the time in viewing my post.
Almost all of us with Hashi's have elevated antibodies (yes, your doctor is right...it's the true test). Some of us are TPOab positive, some TGab positive, and some both. Hashi's is an autoimmune disease. Once you have one autoimmune to are more likely to develop a second than the general population is to get their first. Hashi's is the most prevalent cause of hypo in the developed world, but there are other forms of thyroiditis (usually temporary) in which antibodies are not elevated.
"From what I've read, it's not just the antibodies that make that determination." I don't know what you are referring to. Please clarify.
Your U/S report indicates that your have nodules, which is also indicative of Hashi's. I don't see any concern for thyroid cancer, but I'm also in no way an imaging expert. A clear U/S indicates no further imaging is required.
Your FT4s are a little on the low side, but considering you're not on meds, not much of a concern. You only have one FT3 (FT3 should be tested every time FT4 and TSH are), but that one is actually high (over range). So, I wouldn't suspect you'd be having any hypo symptoms yet???
Whe to start meds is a controversial subject. Some doctors want to wait until labs go out of range and/or symptoms appear. Others want to start earlier to avoid the worst of the symptoms.
Initial stages of Hashi's can be characterized by swings from hyper to hypo, so medicating at that stage can be tricky.
It can take years or even decades for antibodies to do enough damage to cause symptoms, and sometimes symptoms never do appear. On the other hand, the degeneration can be swift.
"From what I've read, it's not just the antibodies that make that determination." I don't know what you are referring to. Please clarify.
Your U/S report indicates that your have nodules, which is also indicative of Hashi's. I don't see any concern for thyroid cancer, but I'm also in no way an imaging expert. A clear U/S indicates no further imaging is required.
Your FT4s are a little on the low side, but considering you're not on meds, not much of a concern. You only have one FT3 (FT3 should be tested every time FT4 and TSH are), but that one is actually high (over range). So, I wouldn't suspect you'd be having any hypo symptoms yet???
Whe to start meds is a controversial subject. Some doctors want to wait until labs go out of range and/or symptoms appear. Others want to start earlier to avoid the worst of the symptoms.
Initial stages of Hashi's can be characterized by swings from hyper to hypo, so medicating at that stage can be tricky.
It can take years or even decades for antibodies to do enough damage to cause symptoms, and sometimes symptoms never do appear. On the other hand, the degeneration can be swift.
Thanks for the quick response. I've been on edge trying to understand all of this.
From what I've read, it's not just the antibodies that make that determination." I don't know what you are referring to. Please clarify.
Per my PCP, he told me that I definitely have Hashi's because of having the TPO antibodies.
I've always had alot of medical issue's, sinuses, kidney, type 2 diabetes, high cholesterol, triyglycerides, ect.now liver, ect. now knowing I have a autoimmune disorder or disease. I'm realizing why I've always had have so many health issue's. Anyhow, from the research I've done, if understanding correctly. That people with high TPO antibodies, but all other thyroid level's are good, doesn't necessarily mean you've Hashi's, that PCP should be ruling out other diseases before assuming it's Hashi's that's causing the high antibodies.
Ultrasound-Per report and Dr. Mark Lupo, I don't have any nodules or a goiter at this time. What are you seeing on that report that indicates nodules?
I've only had that one blood test for the FT3 test, at my request after leaning it should be tested. My PCP at the time I requested, didn't think the FT 3 had any play in Hashi's. However, because I was persistent in order that lab test, he did. I will be requesting the FT 3/4 and TSH to be added to my every 3 month lab order. I go every 3 months for type 2 diabetes, high cholesterol, trig. my PCP is very thorough, but sometimes they think they're also specialist as you can see from what I mentioned above about his thought on the FT3. Is there any other test I should be having done? Is it possible if not hashi's, the antibodies will go down? one of my concerns is not treating the antibodies.
Whe to start meds is a controversial subject. Some doctors want to wait until labs go out of range and/or symptoms appear. Others want to start earlier to avoid the worst of the symptoms.
That's just what my PCP said, is that he waits till the TSH level goes off the chart & me not understanding why they'd wait till symptoms get worse is very puzzling.. Maybe, I'm missing something.
I know I've read alot about the endocrinologist don't really take interest in thyroid disease, more interesting in diabetes, but I did request to see one. I go in Oct. to one I found, and she specializes in I can't remember now, but whatever part of the thyroid that begins with a P cancer. Therefore, hoping she has more interest in the thyroid.
initial stages of Hashi's can be characterized by swings from hyper to hypo, so medicating at that stage can be tricky.
When I thought back to when my TSH level was low and receiving the call from the dr. with concern. I do recall I had lost a patch of hair in the front on the left side of my head, like receding. Well, I had asked my hairdresser about it, she thought it was a vitamin deficiency. Therefore, she recommended to take Centrum. Well, needless to say, luckily it did grow back. I then realized there were times that I would've heart palpatation's, fatigued ect. Just thought it was nothing serious when they stopped. Could that because my TSH level was low at the time?
From what I've read, it's not just the antibodies that make that determination." I don't know what you are referring to. Please clarify.
Per my PCP, he told me that I definitely have Hashi's because of having the TPO antibodies.
I've always had alot of medical issue's, sinuses, kidney, type 2 diabetes, high cholesterol, triyglycerides, ect.now liver, ect. now knowing I have a autoimmune disorder or disease. I'm realizing why I've always had have so many health issue's. Anyhow, from the research I've done, if understanding correctly. That people with high TPO antibodies, but all other thyroid level's are good, doesn't necessarily mean you've Hashi's, that PCP should be ruling out other diseases before assuming it's Hashi's that's causing the high antibodies.
Ultrasound-Per report and Dr. Mark Lupo, I don't have any nodules or a goiter at this time. What are you seeing on that report that indicates nodules?
I've only had that one blood test for the FT3 test, at my request after leaning it should be tested. My PCP at the time I requested, didn't think the FT 3 had any play in Hashi's. However, because I was persistent in order that lab test, he did. I will be requesting the FT 3/4 and TSH to be added to my every 3 month lab order. I go every 3 months for type 2 diabetes, high cholesterol, trig. my PCP is very thorough, but sometimes they think they're also specialist as you can see from what I mentioned above about his thought on the FT3. Is there any other test I should be having done? Is it possible if not hashi's, the antibodies will go down? one of my concerns is not treating the antibodies.
Whe to start meds is a controversial subject. Some doctors want to wait until labs go out of range and/or symptoms appear. Others want to start earlier to avoid the worst of the symptoms.
That's just what my PCP said, is that he waits till the TSH level goes off the chart & me not understanding why they'd wait till symptoms get worse is very puzzling.. Maybe, I'm missing something.
I know I've read alot about the endocrinologist don't really take interest in thyroid disease, more interesting in diabetes, but I did request to see one. I go in Oct. to one I found, and she specializes in I can't remember now, but whatever part of the thyroid that begins with a P cancer. Therefore, hoping she has more interest in the thyroid.
initial stages of Hashi's can be characterized by swings from hyper to hypo, so medicating at that stage can be tricky.
When I thought back to when my TSH level was low and receiving the call from the dr. with concern. I do recall I had lost a patch of hair in the front on the left side of my head, like receding. Well, I had asked my hairdresser about it, she thought it was a vitamin deficiency. Therefore, she recommended to take Centrum. Well, needless to say, luckily it did grow back. I then realized there were times that I would've heart palpatation's, fatigued ect. Just thought it was nothing serious when they stopped. Could that because my TSH level was low at the time?
TPOab and TGab can be slightly elevated with other autoimmune diseases. I've been frustrated in my reading in that "slightly" never seems to be defined. Your result is pretty high, though, so I doubt you'd be considered "borderline" in any way. As I said, Hashi's can move very slowly, and you can have antibodies for a very long time before they do enough damage to cause either symptoms or out of range labs.
As I mentioned, imaging is not my forte, so please don't quote me on my comments! "Heterogeneous thyroid parenchymal echotexture without evidence of a discrete nodule." "Heterogeneous" is what made me think of nodules, though, you're right, nodules aren't apecifically indicated. A discrete nodule is often indicative of thyroid cancer (one nodule is worse news than many), and you don't have a discreet nodule, which is good. Imaging is not my thing. Some of our members are very good with imaging, so if you wanted to start a new thread, someone with a lot more knowledge will comment.
"one of my concerns is not treating the antibodies." There is no proven way to treat the antibodies. Many people claim to have protocols that treat the antibodies, but none has been proven in a large scale study of a heterogeneous population. Two of the more popular theories involve selenium and a gluten free diet.
Once we have antibodies, we have them for life. They can go down, and in fact, they vary wildly even intraday, but they're always there.
"That's just what my PCP said, is that he waits till the TSH level goes off the chart..." No, doesn't make sense to me, either. First off, TSH is the least important of the tests (FT3, FT4 and TSH). Any doctor who thinks TSH is the gold standard in thyroid diagnosis and treatment is not a good thyroid doctor. What makes a lot more sense is to say, "Wait until symptoms appear or FT3 and FT4 drop, whichever comes first." FT4 below midrange and FT3 below upper half to third of range is where many people start having symptoms. There's no reason to wait until either of those is below range...most of us are in hypo hell by then.
You're probably referring to papillary cancer. And, yes, that might indicate she has more interest in the thyroid than some endos. However, be aware that some doctors take "specializing" to a higher level. Perhaps ALL she wants to treat is papillary cancer. I think it's always worthwhile to do a telephone interview with a prospective doctor (probably through a nurse). With a couple of pertinent questions you can weed out some not worth the time and money of seeing. What thyroid tests do they regularly order for their hypo patients? You know the answers you want to hear to those. What meds are they open to prescribing (T4, synthetic T3/T4 combos, desiccated)? Even just those two questions will give you a pretty good idea of where they're coming from. When I was endo shopping, I wrote up a questionnaire and emailed or faxed it to all the endos in the area.
Keep in mind that your TSH level causes no symptoms. TSH is nothing but a messenger from your pituitary to your thyroid to tell it to produce thyroid hormone. TSH level should reflect FT3 and FT4 levels, i.e. when TSH levl is low, FT3 and FT4 should be high and vice versa. That's in a perfect world. If your TSH level was low, and that ACCURATELY reflected your FT3 and/or FT4 being high, then it could cause palps and fatigue. However, those are both symptoms that can "cross over" and be symptoms of either hypo or hyper.
Since you FT3 is high, I'd recommend having TSI (thyroid stimulating immunoglobulin) tested. TSI is the definitive test for Graves'. In Graves', TPOab can be somewhat (again undefined) elevated. Also, though very rare, some people do have both Graves' and Hashi's. If you want to cover all the bases, you might also ask for B-12, D, iron and ferritin. Deficiencies in those often seem to accompany thyroid problems, and some are necessary for the metabolism of thyroid hormones.
As I mentioned, imaging is not my forte, so please don't quote me on my comments! "Heterogeneous thyroid parenchymal echotexture without evidence of a discrete nodule." "Heterogeneous" is what made me think of nodules, though, you're right, nodules aren't apecifically indicated. A discrete nodule is often indicative of thyroid cancer (one nodule is worse news than many), and you don't have a discreet nodule, which is good. Imaging is not my thing. Some of our members are very good with imaging, so if you wanted to start a new thread, someone with a lot more knowledge will comment.
"one of my concerns is not treating the antibodies." There is no proven way to treat the antibodies. Many people claim to have protocols that treat the antibodies, but none has been proven in a large scale study of a heterogeneous population. Two of the more popular theories involve selenium and a gluten free diet.
Once we have antibodies, we have them for life. They can go down, and in fact, they vary wildly even intraday, but they're always there.
"That's just what my PCP said, is that he waits till the TSH level goes off the chart..." No, doesn't make sense to me, either. First off, TSH is the least important of the tests (FT3, FT4 and TSH). Any doctor who thinks TSH is the gold standard in thyroid diagnosis and treatment is not a good thyroid doctor. What makes a lot more sense is to say, "Wait until symptoms appear or FT3 and FT4 drop, whichever comes first." FT4 below midrange and FT3 below upper half to third of range is where many people start having symptoms. There's no reason to wait until either of those is below range...most of us are in hypo hell by then.
You're probably referring to papillary cancer. And, yes, that might indicate she has more interest in the thyroid than some endos. However, be aware that some doctors take "specializing" to a higher level. Perhaps ALL she wants to treat is papillary cancer. I think it's always worthwhile to do a telephone interview with a prospective doctor (probably through a nurse). With a couple of pertinent questions you can weed out some not worth the time and money of seeing. What thyroid tests do they regularly order for their hypo patients? You know the answers you want to hear to those. What meds are they open to prescribing (T4, synthetic T3/T4 combos, desiccated)? Even just those two questions will give you a pretty good idea of where they're coming from. When I was endo shopping, I wrote up a questionnaire and emailed or faxed it to all the endos in the area.
Keep in mind that your TSH level causes no symptoms. TSH is nothing but a messenger from your pituitary to your thyroid to tell it to produce thyroid hormone. TSH level should reflect FT3 and FT4 levels, i.e. when TSH levl is low, FT3 and FT4 should be high and vice versa. That's in a perfect world. If your TSH level was low, and that ACCURATELY reflected your FT3 and/or FT4 being high, then it could cause palps and fatigue. However, those are both symptoms that can "cross over" and be symptoms of either hypo or hyper.
Since you FT3 is high, I'd recommend having TSI (thyroid stimulating immunoglobulin) tested. TSI is the definitive test for Graves'. In Graves', TPOab can be somewhat (again undefined) elevated. Also, though very rare, some people do have both Graves' and Hashi's. If you want to cover all the bases, you might also ask for B-12, D, iron and ferritin. Deficiencies in those often seem to accompany thyroid problems, and some are necessary for the metabolism of thyroid hormones.
TPOab and TGab can be slightly elevated with other autoimmune diseases. I've been frustrated in my reading in that "slightly" never seems to be defined.
My understanding is having antibodies is a autoimmune disease & there could be 101 reason as to what they're, unfortunately there's no one bloodtest to determine what's or what causes the disease.
Hashi's can move very slowly, and you can have antibodies for a very long time before they do enough damage to cause either symptoms or out of range labs.
Probably because of me just learning about antibodies and Hasi's. I was saying, that I'm thinking that I've probably always had a autoimmune disease, with all of the medical issue's I'm having and now it's starting to attack the thyroid, because I've never had a issue with my TSH, T4 level's and the PCP has been monitoring for yrs. now. It's just recently, that I'm having problems.
In no way was I trying to be critical of your knowledge of my ultrasound result. Was just sharing Dr. Lupo's comment. I'm truly sorry, if I gave you that impression.
What thyroid tests do they regularly order for their hypo patients? You know the answers you want to hear to those. What meds are they open to prescribing (T4, synthetic T3/T4 combos, desiccated)?
Thanks for that advice. I would've never of thought of that and it's getting very costly with all these test, co-pays, medicine's ect. I will definitely take your advice and call for a phone interview. However, I'm not that knowledgeable with this disease to know what to ask, other than the questions you've provided above. Is there anything else I should ask? should the answers to, what thyroid test do they do regulary be, TSH, FT3, FT4, TSI? is that all of them? (T4, synthetic T3/T4 combos, desiccated)?
are the answers i would want to what medicine's they use?
If you want to cover all the bases, you might also ask for B-12, D, iron and ferritin. Deficiencies in those often seem to accompany thyroid problems, and some are necessary for the metabolism of thyroid hormones.
I will have my PCP order labtest for B-12, iron, ferritin & is that Vitamin D?
I would really like to thank you for all of your help in assisting me in learning about this disease. I am in great appreciation.
My understanding is having antibodies is a autoimmune disease & there could be 101 reason as to what they're, unfortunately there's no one bloodtest to determine what's or what causes the disease.
Hashi's can move very slowly, and you can have antibodies for a very long time before they do enough damage to cause either symptoms or out of range labs.
Probably because of me just learning about antibodies and Hasi's. I was saying, that I'm thinking that I've probably always had a autoimmune disease, with all of the medical issue's I'm having and now it's starting to attack the thyroid, because I've never had a issue with my TSH, T4 level's and the PCP has been monitoring for yrs. now. It's just recently, that I'm having problems.
In no way was I trying to be critical of your knowledge of my ultrasound result. Was just sharing Dr. Lupo's comment. I'm truly sorry, if I gave you that impression.
What thyroid tests do they regularly order for their hypo patients? You know the answers you want to hear to those. What meds are they open to prescribing (T4, synthetic T3/T4 combos, desiccated)?
Thanks for that advice. I would've never of thought of that and it's getting very costly with all these test, co-pays, medicine's ect. I will definitely take your advice and call for a phone interview. However, I'm not that knowledgeable with this disease to know what to ask, other than the questions you've provided above. Is there anything else I should ask? should the answers to, what thyroid test do they do regulary be, TSH, FT3, FT4, TSI? is that all of them? (T4, synthetic T3/T4 combos, desiccated)?
are the answers i would want to what medicine's they use?
If you want to cover all the bases, you might also ask for B-12, D, iron and ferritin. Deficiencies in those often seem to accompany thyroid problems, and some are necessary for the metabolism of thyroid hormones.
I will have my PCP order labtest for B-12, iron, ferritin & is that Vitamin D?
I would really like to thank you for all of your help in assisting me in learning about this disease. I am in great appreciation.
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