Thyroid nodule biopsy anyone?

[BigMama1]

The word biopsy is REALLY freaking me out, so hoping you all can calm me down and keep me away from the Google. Here’s what I know:

5 years ago the dr felt a nodule on my thyroid. Blood levels all normal, ultrasound showed the nodule, did some kind of nuclear study where I had to swallow a radioactive pill to track how well my thyroid was functioning. Apparently it was functioning fine and the nodule wasn’t large enough to consider doing a biopsy.

Hadn’t even thought about it until this summer realized I was often feeling like food was stuck in my throat or having trouble swallowing. Dr did bloodwork and ordered ultrasound. Blood work levels for everything - sugars, lipids, iron, red count, white count T3, T4 and TSH are all in the normal
range. Only thing flagged was a significant vitamin D deficiency.

Ultra sound results showed larger nodule(s) with calcifications. I know that can be a sign of thyroid cancer but don’t want to go down the rabbit hole of looking up too much on line until I know that is a genuine concern. Getting referred to a general surgeon for biopsy and then will know more.

In the meantime…

• Has anyone ever had a thyroid biopsy?
• is it done just with a local anesthetic?
• any ideas what else could be irregular other than cancer that they would be looking for with a biopsy?
• are calcifications ever just calcifications like you might see in tendinitis? Or is it always a sign of something bad?

Feel free to tell me I have nothing to worry about, or that biopsy is a scary word and it’s ok to freak or a little. I do have a wee bit of anxiety disorder and tend to jump to the worst case scenario right away

[Color_of_Light]

@BigMama1

The word biopsy is REALLY freaking me out

>>>BigMama1<<<
I know how worrisome this experience can be because I’ve been through it, and I’ve had other body parts biopsied, too. If it’s any consolation, thyroid biopsies are very common. Anyone who has a goiter who sees a doctor gets a thyroid ultrasound (if it’s a good doctor). If the thyroid is enlarged, nodules are often the cause, and if there are nodules, it is very common that they are biopsied. The biopsy is done under local anesthesia with a fine needle and it’s ultrasound guided. Mine was done by a radiologist. There is very little discomfort involved. I practically fell asleep during mine. If your nodules are in a difficult to reach location, you might feel pressure on your trachea like I did.

As scary as the procedure sounds, the good thing is that thyroid calcifications do not automatically mean cancer. They can be either benign or malignant. They are caused by some sort of thyroid disease disrupting normal hormones (autoimmune or non-autoimmune) within your thyroid, which causes build up of calcium salts in your thyroid. Do you have any hypo, hyper or other odd symptoms?

Did they label your nodules as having microcalcifications, calcifications, or other details? Are they fluid filled, solid, or semi solid? Nodules and a goiter are usually associated with some sort of thyroid disease. It could be hypothyroidism or hyperthyroidism, Graves or Hashimoto’s. You really do have to test the antibodies because it’s normal for people with “normal” labs have Hashimoto’s. Did they test your antibodies?

The funny thing about thyroid labs is far too many doctors don’t understand the thyroid or the labs, and they think that if you are somewhere in the huge range, you are “normal” and you are fine. This is so not true! “Normal” is a huge range of lows and highs. People below middle range usually have some sort of symptoms and people above the upper 3/4 usually have some sort of symptoms. I was told I was “normal” when I was diagnosed with Hashimoto’s. At the time I had a ton of symptoms, but because I was “normal”, the doctor ignored my symptoms and would not give me the medication. In reality, my “normal” levels were lowish, but still in the middle of the lab range. I became very, very sick as a result of not receiving treatment for too long. I had to weed through 5 more doctors until I found one who knew the right things about thyroid and who would finally give me the treatment. That being said, since you have nodules (thyroid disease) and your doctor thinks your labs are normal, I recommend that you find a doctor who specializes in thyroid and who can tell you if your labs are actually good or not.

A little non-thyroid side story about calcifications. I have them in my breasts. These calcifications can be associated with breast cancer, but not always, just like in the thyroid. Four years ago I had a double biopsy. In my case, the suspicious areas were not associated with calcifications. The cells were benign. I actually just had a mammogram and an ultrasound on two suspicious lumps today, which are negative. After today, I am going to get a complete ultrasound breast screening bilateral because compared to a mammogram, a screening ultrasound is more sensitive for breast cancer detection (97.3% vs 74.7%). I just want to make sure everything is ok.

Back on track to you and your biopsy. It’s a fine needle that sucks up some cells and then they stick a band aid over the biopsy spot. Since it’s just a band aid, that lets you know that it’s not a very invasive procedure. I hope this puts your mind at ease at least a little bit about your biopsy.

[BigMama1]

@Color of Light

>>>BigMama1<<<
I know how worrisome this experience can be because I’ve been through it, and I’ve had other body parts biopsied, too. If it’s any consolation, thyroid biopsies are very common. Anyone who has a goiter who sees a doctor gets a thyroid ultrasound (if it’s a good doctor). If the thyroid is enlarged, nodules are often the cause, and if there are nodules, it is very common that they are biopsied. The biopsy is done under local anesthesia with a fine needle and it’s ultrasound guided. Mine was done by a radiologist. There is very little discomfort involved. I practically fell asleep during mine. If your nodules are in a difficult to reach location, you might feel pressure on your trachea like I did.

As scary as the procedure sounds, the good thing is that thyroid calcifications do not automatically mean cancer. They can be either benign or malignant. They are caused by some sort of thyroid disease disrupting normal hormones (autoimmune or non-autoimmune) within your thyroid, which causes build up of calcium salts in your thyroid. Do you have any hypo, hyper or other odd symptoms?

Did they label your nodules as having microcalcifications, calcifications, or other details? Are they fluid filled, solid, or semi solid? Nodules and a goiter are usually associated with some sort of thyroid disease. It could be hypothyroidism or hyperthyroidism, Graves or Hashimoto’s. You really do have to test the antibodies because it’s normal for people with “normal” labs have Hashimoto’s. Did they test your antibodies?

The funny thing about thyroid labs is far too many doctors don’t understand the thyroid or the labs, and they think that if you are somewhere in the huge range, you are “normal” and you are fine. This is so not true! “Normal” is a huge range of lows and highs. People below middle range usually have some sort of symptoms and people above the upper 3/4 usually have some sort of symptoms. I was told I was “normal” when I was diagnosed with Hashimoto’s. At the time I had a ton of symptoms, but because I was “normal”, the doctor ignored my symptoms and would not give me the medication. In reality, my “normal” levels were lowish, but still in the middle of the lab range. I became very, very sick as a result of not receiving treatment for too long. I had to weed through 5 more doctors until I found one who knew the right things about thyroid and who would finally give me the treatment. That being said, since you have nodules (thyroid disease) and your doctor thinks your labs are normal, I recommend that you find a doctor who specializes in thyroid and who can tell you if your labs are actually good or not.

A little non-thyroid side story about calcifications. I have them in my breasts. These calcifications can be associated with breast cancer, but not always, just like in the thyroid. Four years ago I had a double biopsy. In my case, the suspicious areas were not associated with calcifications. The cells were benign. I actually just had a mammogram and an ultrasound on two suspicious lumps today, which are negative. After today, I am going to get a complete ultrasound breast screening bilateral because compared to a mammogram, a screening ultrasound is more sensitive for breast cancer detection (97.3% vs 74.7%). I just want to make sure everything is ok.

Back on track to you and your biopsy. It’s a fine needle that sucks up some cells and then they stick a band aid over the biopsy spot. Since it’s just a band aid, that lets you know that it’s not a very invasive procedure. I hope this puts your mind at ease at least a little bit about your biopsy.

Bless you for such a detailed and helpful response. It really does make me feel better!

I have had every symptom of low thyroid for as long as I can remember: fatigue, feeling cold significant weight gain, dry itchy skin even the eyebrow thing. Every symptom except thyroid function. Labs are always normal but they only test T3, T4, and TSH. When nodule was originally discovered it was too small to biopsy but they did some uptake test to determine how efficiently it was working and it
was fine. So after my labs come back they always tell me to watch my diet, exercise more and get lots of sleep. Ha!

[PKP]

BigMama1, It’s in our nature to worry! I try to tell myself that worrying won’t change the outcome so not to waste my energy, but it only sometimes works.

I’ve had my thyroid biopsied twice, as I have a nodule on it that is big enough to have been noticed by my child’s ENT. The first biopsy was done in the dr office and came back inconclusive, which freaked me out. The second was done by an oncologist I was then referred to (another freakout), and the results were clear. The biopsies were quick and painless.

I have my thyroid checked by ultrasound every year, and the nodule grows slowly but still looks the same. It has microcalcifications, too. My doc is not at all concerned, so neither am I.

interesting about symptoms … I’m tired, always cold and my skin is very itchy. What’s the “eyebrow thing” you mentioned? My thyroid panel comes back normal every year…

I’ll be thinking of you. Please keep us posted.

[Groom_amp_Taxi]

The long version: I was diagnosed with a goiter while in grad school (circa 1983). It was rather unsightly, and even though function was fine, I was put on Synthroid to suppress it which worked fairly well for a long time. Somewhere in the range of 84 to 86, I had the nuclear scan with the radioactive pill to check things out. I had kids in 1992 and 1994. Knowing there was some thyroid disease, my thyroid hormone levels were monitored and adjusted during pregnancy. My first child was born via emergency c-section due to fetal distress, and there was some thought that the thyroid levels might have had something to do with the distress. During second pregnancy, goiter became more prominent again, and after second child was born in 94, I had needle biopsy (non ultrasound guided at that time but probably would be now) as well as more imaging. Ended up having surgery to remove thyroid altogether and have maintained quite well on levothyroxine with minor tweaks to dosage at annual checks. Some of my timeline may be a bit off here, but that’s the gist of it - ancient history now!

I recall being freaked out by the “b word” at the time of the biopsy. I think I recall the doctor telling me the needle biopsy was likely to be inconclusive because they couldn’t (at that time) be sure the needle was being poked into the actual areas of concern - and even if they successfully poked the nodule, they might not poke a cancerous part of it even if there WAS cancer there. Therefore the only way to conclusively find out if there was any thyroid cancer was basically to remove and biopsy the whole thing. For that reason and for cosmetic reasons as well, I went ahead with the surgery.

I also recall one of the docs along the way telling me that even if a thyroid cancer were to be detected, that would be one of the better kinds of cancer to get as they tend to be very slow growing and with very rare exceptions are not going to be fatal.

Oh, and one of the docs - maybe the surgeon, maybe the one that did the needle biopsy - referred to my thyroid as “gnarly”.

[RMJacobs]

All the other replies are right on, and the detail in Color of Light’s response is great.

I had a needle biopsy many years ago. I think mine was ultrasound guided. It was no big deal. Luckily, I knew that going in, as I knew someone who’d had it done recently.

My result was no cancer. I’d do the biopsy again if it was needed.

I have Hashimoto’s, by the way, and was diagnosed 27 years ago or so. That, too, has never been a big deal, as I have so much other autoimmune stuff going on. Makes the Hashi’s seem insignificant.

Rebecca

[Color_of_Light]

@BigMama1

Bless you for such a detailed and helpful response. It really does make me feel better!

Awe! Good! I was hoping it would! :encouragement:

Oh no! This is not what I was expecting to hear, especially since you said your doctor said you are “normal”. This is not normal at all. You have so many of the major symptoms, you have a goiter with large nodules, and you’ve been told your levels are “normal”? What is wrong with some doctors? Too many can’t recognize thyroid disease when it is staring them in the face. This just makes me want to scream because this sort of medical negligence happens all of the time. It happened to me, it happened to you, and it continues to happen to some people here, and they are still suffering with symptoms due to being under medicated. You have thyroid disease. If your levels were normal FOR YOU, then you would not have any of these symptoms. Which T3 and T4 tests did they do? Hopefully the right ones, the free ones? All the others are a waste of your time and money because they are wrong tests. You need to test your TPO and TG thyroid antibodies to find out if Hashimoto’s is the cause of your thyroid disease.

Based on all of your hypo symptoms, I would bet you that your levels are not really “normal” or good at all. I would not at all be surprised to find that your levels are between 50% and 25% of the range, or lower. If my levels start to drop to below 60% of range, I become narcoleptic. I have terrible brain fog, major forgetfulness, inability to talk or communicate in any form successfully (to the point of where I was worried that I had Alzheimer’s and I was crying in fear and frustration in my doctors office). I start gaining weight. The lower my levels drop, the worst all of these symptoms become. Once I increase my T4 and get it back up to 60-70%, then all of my symptoms go away. This is just where my numbers must be for me to have no symptoms. Everyone is different, but most people who have thyroid disease have no symptoms if their levels are kept over 50% and up to 75%.

Do you know why your nodule grew? It’s because whatever the cause of your thyroid disease, it is causing your thyroid hormones to be at the wrong level for you. They were allowed to drop too low in the range. You can thank your trusty doctors for that one. The good news is that your nodules and goiter will usually shrink…if you are put on the right level of medication. The other good news is that if you are on the right medication, you will be either symptoms free or practically symptoms free! Existing symptoms are what measures successful treatment. Successful treatment is minimal symptoms.

Too many people forget that if someone is on medication, still has a large goiter, still has weight problems and other hypo problems, then they are under medicated because their levels are still too low. Someone like this is probably being told their levels are “good” and that they are “normal”. Major fail and they are still suffering with symptoms years or decades later. Actual good levels = no symptoms.

Finding a doctor who can treat thyroid disease correctly is not easy, but it is possible. I’ve had the best advice with non-MD’s and the worst advice I’ve ever heard from MD’s. Through the years since I was finally diagnosed, I have probably seen at least 20-30 MD’s for problems related to this disease. That is excluding the 30+ that I saw trying to get a diagnosis. Almost every person that I’ve met with thyroid disease tells a similar story. :concern:

[Color_of_Light]

@PKP

I’ve had my thyroid biopsied twice, as I have a nodule on it that is big enough to have been noticed by my child’s ENT. The first biopsy was done in the dr office and came back inconclusive, which freaked me out. The second was done by an oncologist I was then referred to (another freakout), and the results were clear. The biopsies were quick and painless.

I have my thyroid checked by ultrasound every year, and the nodule grows slowly but still looks the same. It has microcalcifications, too. My doc is not at all concerned, so neither am I.

interesting about symptoms … I’m tired, always cold and my skin is very itchy. What’s the “eyebrow thing” you mentioned? My thyroid panel comes back normal every year…

I’ll be thinking of you. Please keep us posted.

PK, Oh no, not you too! See my above post to BigMama1. Growing nodules=goiter=hypo symptoms=thyroid disease. I would also not be surprised that your actual levels are not “normal”, either.

Your story and BigMama1’s story have been posted here by others before you way too often. It’s always the same story. People have the symptoms, their docs can’t decipher their labs correctly, they are told they are normal, they are left un medicated, and their symptoms continue for years and slowly increase, or they suddenly get much worse. They trust their doctor’s word too much, and they don’t seek a new doctor until their thyroid is even more permanently damaged…

“Normal” is always when you do not have any symptoms. Symptoms mean abnormal.

The eyebrow thing is a severe outward sign of thyroid disease. The outer 1/4 of your eyebrow falls out and stops growing. Thinning or hair falling out of your head is also another symptom of low thyroid hormones.

[CanadianTrotter]

I have a large growth of nodules on my thyroid that was discovered by an endocronologist when trying to get my diabetes under control. I was going for ultrasounds once a year and on one of them the radiologist said, “No Follow Up”, I thought that was good news and that it had either significantly shrunk or disappeared. Then I began having difficulty swallowing and decided to ask my doctor for another ultrasound, it took 45 minutes to do it and it had grown 3x’s larger since the last radiologist said no follow up needed. Suddenly I was rushed in within the week for a biopsy which came back clear of cancer and then needed to go every 3 months for ultrasounds. Then the mass shrunk supposedly because of the biopsy and now I’m back to 1x a year for ultrasounds which I am uncomfortable with because it had grown so quickly and large the last time.

The biopsy was no problem and didn’t hurt at all during or after the procedure.

[CanadianTrotter]

@Color of Light

Awe! Good! I was hoping it would! :encouragement:

Oh no! This is not what I was expecting to hear, especially since you said your doctor said you are “normal”. This is not normal at all. You have so many of the major symptoms, you have a goiter with large nodules, and you’ve been told your levels are “normal”? What is wrong with some doctors? Too many can’t recognize thyroid disease when it is staring them in the face. This just makes me want to scream because this sort of medical negligence happens all of the time. It happened to me, it happened to you, and it continues to happen to some people here, and they are still suffering with symptoms due to being under medicated. You have thyroid disease. If your levels were normal FOR YOU, then you would not have any of these symptoms. Which T3 and T4 tests did they do? Hopefully the right ones, the free ones? All the others are a waste of your time and money because they are wrong tests. You need to test your TPO and TG thyroid antibodies to find out if Hashimoto’s is the cause of your thyroid disease.

Based on all of your hypo symptoms, I would bet you that your levels are not really “normal” or good at all. I would not at all be surprised to find that your levels are between 50% and 25% of the range, or lower. If my levels start to drop to below 60% of range, I become narcoleptic. I have terrible brain fog, major forgetfulness, inability to talk or communicate in any form successfully (to the point of where I was worried that I had Alzheimer’s and I was crying in fear and frustration in my doctors office). I start gaining weight. The lower my levels drop, the worst all of these symptoms become. Once I increase my T4 and get it back up to 60-70%, then all of my symptoms go away. This is just where my numbers must be for me to have no symptoms. Everyone is different, but most people who have thyroid disease have no symptoms if their levels are kept over 50% and up to 75%.

Do you know why your nodule grew? It’s because whatever the cause of your thyroid disease, it is causing your thyroid hormones to be at the wrong level for you. They were allowed to drop too low in the range. You can thank your trusty doctors for that one. The good news is that your nodules and goiter will usually shrink…if you are put on the right level of medication. The other good news is that if you are on the right medication, you will be either symptoms free or practically symptoms free! Existing symptoms are what measures successful treatment. Successful treatment is minimal symptoms.

Too many people forget that if someone is on medication, still has a large goiter, still has weight problems and other hypo problems, then they are under medicated because their levels are still too low. Someone like this is probably being told their levels are “good” and that they are “normal”. Major fail and they are still suffering with symptoms years or decades later. Actual good levels = no symptoms.

Finding a doctor who can treat thyroid disease correctly is not easy, but it is possible. I’ve had the best advice with non-MD’s and the worst advice I’ve ever heard from MD’s. Through the years since I was finally diagnosed, I have probably seen at least 20-30 MD’s for problems related to this disease. That is excluding the 30+ that I saw trying to get a diagnosis. Almost every person that I’ve met with thyroid disease tells a similar story. :concern:

I’ve had three doctors tell me they think I have Lupus or some other autoimmune disease, they have sent me for tons of tests and everything has come back negative. Even my RA tests came back negative yet I have every symptom and am being treated for RA. Now my RA doctor has started me on Hydroxychloroquine Sulfate while sending me for a large battery of ultrasounds to check for Seronegative issues and to a Haematologist.

This is after years of chronic pain and infections and being tested for many things but everything coming back negative. I was so frustrated that I stopped pursuing medical help until recently getting a few doctors that actually want to put the effort into getting to the bottom of this.

[BigMama1]

Still waiting for the appointment from the surgeon for biopsy but in the meantime should Inask my FP did more blood work? Here are the results of the three things hey tested, and the lab’s normal
range:

TSH 1.67 (normal 0.32-4.00)
Free T4 13 ( normal 9-19)
Free T3 3.6 (normal 3.1-6.2)

[Color_of_Light]

@BigMama1

Still waiting for the appointment from the surgeon for biopsy but in the meantime should Inask my FP did more blood work? Here are the results of the three things hey tested, and the lab’s normal
range:

TSH 1.67 (normal 0.32-4.00) A good number, but it means that for some reason your pituitary gland is not communicating normally with your thyroid because…
Free T4 13 ( normal 9-19) Too low. It should be over 50%, but you are not even up to 50% of range, which would be 14. You are only at 13.
Free T3 3.6 (normal 3.1-6.2)[B]Too low because it is at the bottom of the range. It should be over 50%. You are not even at 25%. Your number also means you are not converting T4 to T3 because of how low this is. If you were over 50%, you would be at least at 4.65. You are at only 3.6.

This explains why you have all of your symptoms.[/B]

Yes, you should. Your doctor actually did test the right basic tests, the three above, so that’s good. You still need two antibody tests, TG/ab and TPO/ab. Your goiter, symptoms and low thyroid hormones above are all symptoms of thyroid disease.

Remember, “normal” lab ranges are created by testing healthy individuals and does not consider those with disease. Normal means disease-free. In other words, all the people who were involved in the study to create those “normal” lab ranges did not have thyroid disease. They did not have goiters, they did not have hypo or hyper symptoms, and they were not on any thyroid medication. Doctors forget that people with diseases cannot be compared to “normal” and healthy lab ranges. Symptoms of disease and thyroid ultrasound showing nodules or thyroid disease must be considered in combination with lab results. Doctors also forget that TSH does not come from the thyroid, it comes from your pituitary gland and does not tell you how your thyroid is functioning. All if tells you is how well your pituitary gland is communicating with your thyroid. If there is a communication problem, then TSH will have a good number but thyroid hormones will be low. That’s what your results mean, and I have this exact same problem. Because my TSH was already low, but my Ft4 and Ft3 are low, taking thyroid medication makes my TSH go very low. It has to, otherwise my Ft3 and Ft4 would still be too low and I’d have all of my symptoms. I’ve had doctors who don’t understand this and who wanted me to reduce my medication because they thought my TSH was too low. Reducing medication would mean my TSH would go up, but my thyroid hormones would become too low again. This is totally the wrong thing to do. If I allowed them to do this, then I’d be sick all over again and completely non-functioning. It took me awhile to understand this how it is when your pituitary isn’t communicating very well with the thyroid. Then it took me awhile to find a doctor who would not keep making me sick.

[Color_of_Light]

@CanadianTrotter

I’ve had three doctors tell me they think I have Lupus or some other autoimmune disease, they have sent me for tons of tests and everything has come back negative. Even my RA tests came back negative yet I have every symptom and am being treated for RA. Now my RA doctor has started me on Hydroxychloroquine Sulfate while sending me for a large battery of ultrasounds to check for Seronegative issues and to a Haematologist.

This is after years of chronic pain and infections and being tested for many things but everything coming back negative. I was so frustrated that I stopped pursuing medical help until recently getting a few doctors that actually want to put the effort into getting to the bottom of this.

I know that frustration very well! I thought for awhile that I had Lupus or RA, too. They also came back negative. Then I asked the doctor to test thyroid antibodies. He had never heard of the tests. One came back positive and very very high. Did you test autoimmune markers like compliment proteins? If they tested specific antibodies and they came back negative, seronegative is what came to my mind, too. Did you do an ANA cascade? Did you test thyroid antibodies, too? What I thought was Lupus, ended up being Hashimoto’s. I had no idea that Hashimoto’s could be so debilitating. Even now, some people think I just pop a daily pill and I am good to go for the rest of my life. This is the farthest thing from the truth!

Infections are the worst if you have immune system problems. Any infection or sickness will exacerbate autoimmune conditions. Inflammation increases, antibodies which also increases inflammation, and then the chronic pain and other symptoms flare way up. I discovered this when I had several UTI’s. That infection caused reactive arthritis for me. Another time I was been bitten by hay mites twice in the same month and had a horrible response to that. Pain everywhere and major problems with my fingers.

I have given up a few times myself. Then I’d meet a doctor who cared and I’d have hope again. Isn’t it the biggest sigh of relief and lots of happy tears when you finally find a doctor who cares enough to help you?

[BigMama1]

@Color of Light

Yes, you should. Your doctor actually did test the right basic tests, the three above, so that’s good. You still need two antibody tests, TG/ab and TPO/ab. Your goiter, symptoms and low thyroid hormones above are all symptoms of thyroid disease.

Remember, “normal” lab ranges are created by testing healthy individuals and does not consider those with disease. Normal means disease-free. In other words, all the people who were involved in the study to create those “normal” lab ranges did not have thyroid disease. They did not have goiters, they did not have hypo or hyper symptoms, and they were not on any thyroid medication. Doctors forget that people with diseases cannot be compared to “normal” and healthy lab ranges. Symptoms of disease and thyroid ultrasound showing nodules or thyroid disease must be considered in combination with lab results. Doctors also forget that TSH does not come from the thyroid, it comes from your pituitary gland and does not tell you how your thyroid is functioning. All if tells you is how well your pituitary gland is communicating with your thyroid. If there is a communication problem, then TSH will have a good number but thyroid hormones will be low. That’s what your results mean, and I have this exact same problem. Because my TSH was already low, but my Ft4 and Ft3 are low, taking thyroid medication makes my TSH go very low. It has to, otherwise my Ft3 and Ft4 would still be too low and I’d have all of my symptoms. I’ve had doctors who don’t understand this and who wanted me to reduce my medication because they thought my TSH was too low. Reducing medication would mean my TSH would go up, but my thyroid hormones would become too low again. This is totally the wrong thing to do. If I allowed them to do this, then I’d be sick all over again and completely non-functioning. It took me awhile to understand this how it is when your pituitary isn’t communicating very well with the thyroid. Then it took me awhile to find a doctor who would not keep making me sick.

Thank you for this!

[CanadianTrotter]

@Color of Light

I know that frustration very well! I thought for awhile that I had Lupus or RA, too. They also came back negative. Then I asked the doctor to test thyroid antibodies. He had never heard of the tests. One came back positive and very very high. Did you test autoimmune markers like compliment proteins? If they tested specific antibodies and they came back negative, seronegative is what came to my mind, too. Did you do an ANA cascade? Did you test thyroid antibodies, too? What I thought was Lupus, ended up being Hashimoto’s. I had no idea that Hashimoto’s could be so debilitating. Even now, some people think I just pop a daily pill and I am good to go for the rest of my life. This is the farthest thing from the truth!

Infections are the worst if you have immune system problems. Any infection or sickness will exacerbate autoimmune conditions. Inflammation increases, antibodies which also increases inflammation, and then the chronic pain and other symptoms flare way up. I discovered this when I had several UTI’s. That infection caused reactive arthritis for me. Another time I was been bitten by hay mites twice in the same month and had a horrible response to that. Pain everywhere and major problems with my fingers.

I have given up a few times myself. Then I’d meet a doctor who cared and I’d have hope again. Isn’t it the biggest sigh of relief and lots of happy tears when you finally find a doctor who cares enough to help you?

I’m relating to much of what you are saying and I’m going to write down your test suggestions and approach my RA Doctor with them. She’s young and specializes in autoimmune diseases and she has put me through a lot of blood tests I’ve never heard of before and can’t member the names of. She previously put me through X-rays of my entire body and it all came back negative except for a bit of osteo in my back(broken back from car accident) and two Spurs in my left heel. Yet the week after my X-rays I marched in to see my GP with a flare up so bad I had spindle fingers on both hands and asked him how the hell can X-rays come back negative? Now I’m going for ultrasounds called US synovitis protocol assessing for seronegative RA-erosions-Doppler flow, RF,ANTICCP, HLAB27 NEG. I’m also scheduled to see a Haematologist because of the amount of protein in my blood.

Since I had my two kids my immune system has been shot, I get constant infections of many types and kinds, I’m extremely sensitive to everything around me, blood sugars are extremely out of whack ranging from extreme highs to extreme lows and very difficult to treat even being on two types of pills and three types of insulin, diagnosed with fibro/mayo fascial, chronic and widespread cysts, chronic overall/widespread pain and the list goes on. One of my aunts was diagnosed with Lupus and my grandmother had severe RA and apparently it’s all genetic.

The one good thing that has happened is this doctor said to me the other day as I was leaving her office that she’s not giving up on me, that alone gave me hope and confidence. The first time I met her I burst into tears when she said we will get to the bottom of this but that I needed to be patient and understanding with her. She told me that when I have my next flare up to take pictures if it’s on a weekend and through the week to call and make an immediate appointment with her.

I’m not holding my breath but I am feeling hopeful for the first time in a very long time.

[shiloh]

No advice here - others have given great advice. All I will say is Back away from the Google! Back I say! Don’t look stuff up because (at least to me) it seems that all that is out there is focused on the negative. If you need to know how this procedure will be done - ask when they call to schedule. Also your surgeon should be advising you exactly what will happen.

I will be jingling for you. I have some of the same concerns. They found cysts on my thyroid lymph glands and they never even bothered to tell me until I really pressed them. So I will be watching this thread closely.

[CanadianTrotter]

@Color of Light

I know that frustration very well!

I found my blood requisition from my diabetes doctor…all of the usual Biochemistry stuff is checked off and she added the following,

TSH,feeT4, free T3, anti TPO antibody
Micoalbumin
estimated GFR
insulin
c peptide
anti GAD antibody

Is there anything else that you think should be added to that? I really don’t want to go for these tests and miss anything pertinent that the doctor didn’t know or think of. I’m going to see my diabetes counsellor(who works with the diabetic Doctor) on Monday and can ask her to contact the doctor to add anything that should be added. I don’t have my next appointment with the diabetic Doctor until Januay but am seeing the haematologist on Nov 7, so I’m wondering if I should just bring this requisition to that appointment and get it all done then instead of waiting for January? That way I can mention any of the other tests you’ve recommended to him as well.

Thanks so much for sharing your knowledge and experience COL! I started having these symptoms 30 years ago and it’s all coming to an unmanageable/unbearable head and I really need to get it all figured out ASAP. I’m relocating long distance in the spring/summer 2019 and really don’t want to start over from scratch with all new doctors. It would be great to at least be on some sort of a half decent treatment plan before moving. Thanks for all of your help!

[Where_sMyWhite]

CT, do you see a nephrologist?

Maybe ask for a kidney function panel. Spilling protein could be (not a Dr here) a sign your kidneys are working too hard.

[CanadianTrotter]

@Where'sMyWhite

CT, do you see a nephrologist?

Maybe ask for a kidney function panel. Spilling protein could be (not a Dr here) a sign your kidneys are working too hard.

Kidneys are monitored and checked on a regular basis, levels have been a bit high a few times but returned to normal so nothing that concerned my doctors which is why they’re sending me to a haematologist.

[Color_of_Light]

@CanadianTrotter

Kidneys are monitored and checked on a regular basis, levels have been a bit high a few times but returned to normal so nothing that concerned my doctors which is why they’re sending me to a haematologist.

@CanadianTrotter

Thanks so much for sharing your knowledge and experience COL!

You’re welcome! In your above thyroid tests, that doctor only ordered one thyroid antibody and forgot the other one, TG/ab. Each is totally separate and this second one needs to be added. Also, if no one has done an ANA Cascade, ESR/SED Rate, CRP, you have enough symptoms that these should all be tested (a long time ago :(). C3 and C4 Complement Proteins, too. These are the most common of the complement tests. These two relate to Lupus, kidney disease and autoimmune disease. ANY doctor or registered nurse can order these tests, not just specialists.

TSH,feeT4, free T3, anti TPO antibody
Micoalbumin
estimated GFR
insulin
c peptide
anti GAD antibody

This is a diabetes doctor ordering this? With your history of abnormal kidney values and protein dumping, why isn’t this doctor doing a kidney function panel?

@Where'sMyWhite

CT, do you see a nephrologist?

Maybe ask for a kidney function panel. Spilling protein could be (not a Dr here) a sign your kidneys are working too hard.

I totally second seeing a nephrologist. Your kidneys are monitored and checked, but no one is getting to the cause of the problem? Hmmm. Your kidneys are somehow involved if you have abnormal labs, both abnormal kidney values and protein dumping. Which kidney values have been high? There is a reason this is happening and it needs to be discovered. Your other doctors aren’t getting to the bottom of the cause and you have enough evidence to prove the need to see a nephrologist. Have you had a serum Protein Electrophoresis Immunofixation Electrophoresis and Serum Free Light Chains? There are some diseases that present with pain, hand and finger problems, myofacial pain, kidney problems (have some of your infections been UTI’s?), and protein dumping that can be ruled out with these tests. How about a urine protein test?

From what you are saying, it seems like you could have multiple things going on here. First is the cause of having constant infections. There is a reason for this. Have you had your immunoglobulins tested? There are some disorders such as an immunoglobulin deficiency that leads to constant infections. Certain immunoglobulin deficiency is treated with IV immunoglobulins. The tests might be called Quantitative Immunoglobulins or similar. What you are looking for is your total level of the main immunoglobulins: A, G, and M.

Second, having constant infections puts the immune system into overdrive and then it suddenly doesn’t work properly anymore. Having constant infections can lead to autoimmune diseases. Good that you’re checking thyroid antibodies, GAD (to test for Type 1 autoimmune diabetes), have done RF. For Lupus, have they tested Anti-dsDNA? How about testing for an autoimmune disease called Sjogren Syndrome? There are lots of symptoms, but the ones that jump out at me that you have mentioned are muscle pain, joint swelling and pain, and about 5% of people with Sjogren’s have kidney problems. The antibody tests for Sjogren are called Anti-SS-A and Anti-SS-B.

Third, what exactly is causing your kidney values to seesaw, your blood sugar to seesaw, and spilling of protein? Are these symptoms related or are they from separate issues? Could go either way. These might be a separate issue from the first two, or it could be an autoimmune disease or something else entirely. This is where a nephrologist comes into play.

Lastly, what does your diet consist of? Have you kept a food and reactions log? If you eat any sugar, sugar can be a cause of chronic pain. Pain effects your blood sugar, usually by increasing it. It becomes a vicious cycle. Then there are several food groups that cause inflammation and pain, too, so then up/down with the glucose.