Possible thyroid disorder, seeing a doctor. Anyone else?
I have had a set of very debilitating symptoms for some time now that I should really have gone further with the doctors with but felt like it was just CFS at the time. I finally found out from my parents today that we have a long history of hyperthyroidism and that might explain a lot.
Worst symptoms are fatigue (14 hours~ sleep per day that is completely unrefreshing), difficulty processing what people are saying to me (I hear it but it just doesn't process, as if they are speaking another language. It's difficult to describe), poor memory and concentration, brain fog, various problems with my vision, tremor, long history of mood problems that have never really been given a straight diagnosis, insanely fast metabolism despite being a skinny kid (2500+ calories to maintain weight).
First popped up about 4 years ago, and I went to the doctor who referred me for bloodwork. To our surprise it all came back clean. Was offered a retest (as they suspected thyroid problems at the time) and failing that an MRI, but I didn't go back as I had exams (and in hindsight I have absolutely no idea why I didn't go after that).
Very recently my hair has started falling out and my sense of smell has gone AWOL. So I had more bloodwork today and will get results next week.
Tl;dr, I just want to know if anyone has been in a similar situation, particularly hear from anyone else with a thyroid problem. Anybody ever had false negatives on a blood test? I was told by my GP back home that the test isn't the most accurate hence being offered a retest, but my GP here told me it is very accurate. And if it's not a thyroid problem I have really no idea what to try next.
Worst symptoms are fatigue (14 hours~ sleep per day that is completely unrefreshing), difficulty processing what people are saying to me (I hear it but it just doesn't process, as if they are speaking another language. It's difficult to describe), poor memory and concentration, brain fog, various problems with my vision, tremor, long history of mood problems that have never really been given a straight diagnosis, insanely fast metabolism despite being a skinny kid (2500+ calories to maintain weight).
First popped up about 4 years ago, and I went to the doctor who referred me for bloodwork. To our surprise it all came back clean. Was offered a retest (as they suspected thyroid problems at the time) and failing that an MRI, but I didn't go back as I had exams (and in hindsight I have absolutely no idea why I didn't go after that).
Very recently my hair has started falling out and my sense of smell has gone AWOL. So I had more bloodwork today and will get results next week.
Tl;dr, I just want to know if anyone has been in a similar situation, particularly hear from anyone else with a thyroid problem. Anybody ever had false negatives on a blood test? I was told by my GP back home that the test isn't the most accurate hence being offered a retest, but my GP here told me it is very accurate. And if it's not a thyroid problem I have really no idea what to try next.
Only some of the symptoms you describe are features of hyperthyroidism, for instance, feeling tired all the time is more a symptom of hypothyroidism. Unfortunately, not everything can be answered with a blood test. Text books and symptom checkers online will tell you that if you have 'this symptom', plus 'this' then it must be 'this' disease. In reality, few medical conditions present in the 'textbook' way. That's not to say that the bloods should not be repeated, and I presume that would include a full workup to check e.g. iron levels too.
It might be that your symptoms could be explained by your mood problems? You hint that these may predate your current symptoms, are you an anxious person? With simple biochemical abnormality ruled out then perhaps it's worth exploring this with your GP.
It might be that your symptoms could be explained by your mood problems? You hint that these may predate your current symptoms, are you an anxious person? With simple biochemical abnormality ruled out then perhaps it's worth exploring this with your GP.
Original post by spleenharvester
I have had a set of very debilitating symptoms for some time now that I should really have gone further with the doctors with but felt like it was just CFS at the time. I finally found out from my parents today that we have a long history of hyperthyroidism and that might explain a lot.
Worst symptoms are fatigue (14 hours~ sleep per day that is completely unrefreshing), difficulty processing what people are saying to me (I hear it but it just doesn't process, as if they are speaking another language. It's difficult to describe), poor memory and concentration, brain fog, various problems with my vision, tremor, long history of mood problems that have never really been given a straight diagnosis, insanely fast metabolism despite being a skinny kid (2500+ calories to maintain weight).
First popped up about 4 years ago, and I went to the doctor who referred me for bloodwork. To our surprise it all came back clean. Was offered a retest (as they suspected thyroid problems at the time) and failing that an MRI, but I didn't go back as I had exams (and in hindsight I have absolutely no idea why I didn't go after that).
Very recently my hair has started falling out and my sense of smell has gone AWOL. So I had more bloodwork today and will get results next week.
Tl;dr, I just want to know if anyone has been in a similar situation, particularly hear from anyone else with a thyroid problem. Anybody ever had false negatives on a blood test? I was told by my GP back home that the test isn't the most accurate hence being offered a retest, but my GP here told me it is very accurate. And if it's not a thyroid problem I have really no idea what to try next.
Worst symptoms are fatigue (14 hours~ sleep per day that is completely unrefreshing), difficulty processing what people are saying to me (I hear it but it just doesn't process, as if they are speaking another language. It's difficult to describe), poor memory and concentration, brain fog, various problems with my vision, tremor, long history of mood problems that have never really been given a straight diagnosis, insanely fast metabolism despite being a skinny kid (2500+ calories to maintain weight).
First popped up about 4 years ago, and I went to the doctor who referred me for bloodwork. To our surprise it all came back clean. Was offered a retest (as they suspected thyroid problems at the time) and failing that an MRI, but I didn't go back as I had exams (and in hindsight I have absolutely no idea why I didn't go after that).
Very recently my hair has started falling out and my sense of smell has gone AWOL. So I had more bloodwork today and will get results next week.
Tl;dr, I just want to know if anyone has been in a similar situation, particularly hear from anyone else with a thyroid problem. Anybody ever had false negatives on a blood test? I was told by my GP back home that the test isn't the most accurate hence being offered a retest, but my GP here told me it is very accurate. And if it's not a thyroid problem I have really no idea what to try next.
Original post by Sean3000
Only some of the symptoms you describe are features of hyperthyroidism, for instance, feeling tired all the time is more a symptom of hypothyroidism. Unfortunately, not everything can be answered with a blood test. Text books and symptom checkers online will tell you that if you have 'this symptom', plus 'this' then it must be 'this' disease. In reality, few medical conditions present in the 'textbook' way. That's not to say that the bloods should not be repeated, and I presume that would include a full workup to check e.g. iron levels too.
It might be that your symptoms could be explained by your mood problems? You hint that these may predate your current symptoms, are you an anxious person? With simple biochemical abnormality ruled out then perhaps it's worth exploring this with your GP.
It might be that your symptoms could be explained by your mood problems? You hint that these may predate your current symptoms, are you an anxious person? With simple biochemical abnormality ruled out then perhaps it's worth exploring this with your GP.
I somehow omitted the most important detail haha... I have a long family history of hyperthyroidism. Family had similar symptoms to me around the time they were diagnosed.
Original post by Sean3000
Still, you did have normal TFTs before? How many months ago was that tested?
First blood test specifically for these symptoms was 3 years ago, which came back normal. I did have other tests for various reasons in the years prior to that, with no TFT abnormalities.
Was a bit suspicious as absolutely everything was normal despite having an awful diet at the time (which has been fixed for a long while now but unfortunately has not alleviated any of my symptoms. Bit silly not doing that before going to the doctors in the first place I know)
I think the bloodwork today was specifically for TFTs (but I don't know a whole lot about it to be honest). Also side note, someone suggested to me to get a private blood test as they told me the NHS tests don't test for presence of anti-TPO and anti-Tg. But surely if they were present it would have an impact on my thyroid hormone levels?
I had similar symptoms to you, particularly really bad fatigue. I went to the doctors when I was 14 (5 years ago) and was diagnosed with HORRIBLY low TSH levels. After going on the synthorid prescribed for it and changing the doses up a bit, I'm not at a healthy range. At the time I was also diagnosed with anemia so that definitely contributed to it (I'm cleared of that now).
I 100% recommend getting blood work done to double check your thyroid levels.
I 100% recommend getting blood work done to double check your thyroid levels.
Tsh would be suppressed irrespective of the cause. So yes it would show up in TFTs. If the tft is abnormal. Then we look for cause with other more specialised tests.
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Progress. Result came back today. Oddly enough, as opposed to the family trend, I have been diagnosed with subclinical hypothyroidism. Was told over the phone I will need a retest every 6 months and eventually will probably need thyroxine.
Now that I have the proof that there is a problem, I am thinking of going to a private consultant and having the autoantibody tests for Hashimotos. Would this be a good idea?
Now that I have the proof that there is a problem, I am thinking of going to a private consultant and having the autoantibody tests for Hashimotos. Would this be a good idea?
Original post by spleenharvester
Progress. Result came back today. Oddly enough, as opposed to the family trend, I have been diagnosed with subclinical hypothyroidism. Was told over the phone I will need a retest every 6 months and eventually will probably need thyroxine.
Now that I have the proof that there is a problem, I am thinking of going to a private consultant and having the autoantibody tests for Hashimotos. Would this be a good idea?
Now that I have the proof that there is a problem, I am thinking of going to a private consultant and having the autoantibody tests for Hashimotos. Would this be a good idea?
Testing for auto-antibodies is something that is available on the NHS and is routinely done in those with overt hypothyroidism.
When it comes to subclinical hypothyroidism, practice is a little more variable, however those who do test positive for anti-TPO are at higher risk of developing overt hypothyroidism later in life. However, the standard practice of those with subclinical hypothyroidism is to repeat the thyroid function tests in another six months anyway. So, at this point, having the TPO test doesn't really change anything. I certainly wouldn't pay for it privately.
However, if your 6 month blood test comes back to show that you've developed overt hypothyroidism, it would be standard practice within the NHS to test for auto-antibodies.
(edited 9 years ago)
Original post by Etomidate
Testing for auto-antibodies is something that is available on the NHS and is routinely done in those with overt hypothyroidism.
When it comes to subclinical hypothyroidism, practice is a little more variable, however those who do test positive for anti-TPO are at higher risk of developing overt hypothyroidism later in life. However, the standard practice of those with subclinical hypothyroidism is to repeat the thyroid function tests in another six months anyway. So, at this point, having the TPO test doesn't really change anything. I certainly wouldn't pay for it privately.
However, if your 6 month blood test comes back to show that you've developed overt hypothyroidism, it would be standard practice within the NHS to test for auto-antibodies.
When it comes to subclinical hypothyroidism, practice is a little more variable, however those who do test positive for anti-TPO are at higher risk of developing overt hypothyroidism later in life. However, the standard practice of those with subclinical hypothyroidism is to repeat the thyroid function tests in another six months anyway. So, at this point, having the TPO test doesn't really change anything. I certainly wouldn't pay for it privately.
However, if your 6 month blood test comes back to show that you've developed overt hypothyroidism, it would be standard practice within the NHS to test for auto-antibodies.
Ah okay, I see. My dilemma now is as to whether or not my symptoms are related to subclinical hypothyroidism or not (as they strongly resemble a thyroid problem) - because if not I still have no explanation as to why I am sleeping 14 hours+ a day etc.
I was also diagnosed with hypothyroidism - it was an ongoing problem since last february with my hormone levels all over the place, so it was only properly diagnosed in january 2015. I'm on levothyroxine which has worked wonders to improve my fatigue and shakiness, but further tests on my thyroid have found that I have lumps which may be cancerous and a developing goitre. This means surgery to totally remove my thyroid in two weeks time, which I'm dreading.
I had to really push and fight to be placed onto levothyroxine because my hormone levels were only considered to be borderline with raised TSH of 4.6 However, the 'normal' range is extremely broad as it covers from 0.6-4.5, meaning that whilst your levels may be 'normal', they are not right for you. I'm so glad that my GP ignored the guidelines and listened to me as an individual, because as I've already said the levothyroxine really improved my symptoms.
The thyroid UK website have a section specifically about private testing: if you think it'll help you to understand more about what's going on then absolutely do it.
http://www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html - all about being diagnosed and starting treatment:
--> even if you have subclinical hypothyroidism you could still ask to have thyroxine on a trial.
http://www.thyroiduk.org.uk/tuk/testing/private_tests.html - give you links to where/how to begin private testing.
Hope this helps, and if you want to talk about it then I'm here!
<3
I had to really push and fight to be placed onto levothyroxine because my hormone levels were only considered to be borderline with raised TSH of 4.6 However, the 'normal' range is extremely broad as it covers from 0.6-4.5, meaning that whilst your levels may be 'normal', they are not right for you. I'm so glad that my GP ignored the guidelines and listened to me as an individual, because as I've already said the levothyroxine really improved my symptoms.
The thyroid UK website have a section specifically about private testing: if you think it'll help you to understand more about what's going on then absolutely do it.
http://www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html - all about being diagnosed and starting treatment:
--> even if you have subclinical hypothyroidism you could still ask to have thyroxine on a trial.
http://www.thyroiduk.org.uk/tuk/testing/private_tests.html - give you links to where/how to begin private testing.
Hope this helps, and if you want to talk about it then I'm here!
<3Original post by meygagagan
I was also diagnosed with hypothyroidism - it was an ongoing problem since last february with my hormone levels all over the place, so it was only properly diagnosed in january 2015. I'm on levothyroxine which has worked wonders to improve my fatigue and shakiness, but further tests on my thyroid have found that I have lumps which may be cancerous and a developing goitre. This means surgery to totally remove my thyroid in two weeks time, which I'm dreading.
I had to really push and fight to be placed onto levothyroxine because my hormone levels were only considered to be borderline with raised TSH of 4.6 However, the 'normal' range is extremely broad as it covers from 0.6-4.5, meaning that whilst your levels may be 'normal', they are not right for you. I'm so glad that my GP ignored the guidelines and listened to me as an individual, because as I've already said the levothyroxine really improved my symptoms.
The thyroid UK website have a section specifically about private testing: if you think it'll help you to understand more about what's going on then absolutely do it.
http://www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html - all about being diagnosed and starting treatment:
--> even if you have subclinical hypothyroidism you could still ask to have thyroxine on a trial.
http://www.thyroiduk.org.uk/tuk/testing/private_tests.html - give you links to where/how to begin private testing.
Hope this helps, and if you want to talk about it then I'm here! <3
I had to really push and fight to be placed onto levothyroxine because my hormone levels were only considered to be borderline with raised TSH of 4.6 However, the 'normal' range is extremely broad as it covers from 0.6-4.5, meaning that whilst your levels may be 'normal', they are not right for you. I'm so glad that my GP ignored the guidelines and listened to me as an individual, because as I've already said the levothyroxine really improved my symptoms.
The thyroid UK website have a section specifically about private testing: if you think it'll help you to understand more about what's going on then absolutely do it.
http://www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html - all about being diagnosed and starting treatment:
--> even if you have subclinical hypothyroidism you could still ask to have thyroxine on a trial.
http://www.thyroiduk.org.uk/tuk/testing/private_tests.html - give you links to where/how to begin private testing.
Hope this helps, and if you want to talk about it then I'm here!
<3Thankyou for your response
and sorry to hear about your thyroid! Hope the surgery goes smoothly!I finally got the precise results from my most recent blood test back, TSH is at 5.4, fT4 at 17.3, and elevated anti-TPO present (which seems to suggest early stage Hashimoto's). Sort of wondering why they didn't test for fT3 though/if that was even necessary?
Interesting that the Levothyroxine improved your symptoms, were any of your fT4/fT3 readings wonky? I am debating asking my doctor about trying levothyroxine at my next appointment, but my fT4 seems to be okay so I'm not sure they would allow me to.
No problem! I hope it helped
Sorry about how long it's taken me to reply, things have been crazy recently. The surgery went ok - it took an hour longer than normal because it was more swollen than first thought, but I'm recovering well and only have to wait three weeks until I find out whether I need radioactive iodine treatment for any malignancy that might still be hanging around.
And those readings seem consistent with the diagnosis of sub-clinical hypothyroidism, the normal range for fT4 is 10-24 (you are right in the middle of that) and for TSH is 0.4-4.5 (your levels are slightly raised). I too had raised TSH (about 6) and low fT4 (at around 9), as well as raised antibodies suggesting Hastimoto's.
What my endocrinologist explained to me is that, if your fT3 levels were normal but TSH was raised, then your thyroid is not working at to a standard that is perfect for your body personally - someone else could have the exact same readings and not have any symptoms because the levels are right for their body.
As you are showing symptoms of fatigue etc you are perfectly within your rights to ask to be put on a trial, or to be referred to a second GP/endocrinologist/ENT for a second opinion. This is your health, so make a fuss if you think that something isn't right and doctors are more likely to listen to you. If I hadn't kept returning over the past year to have repeated blood test (because my symptoms first showed up early 2014), the dodgy levels wouldn't have been found (as hormone levels fluctuate),my thyroid would still be growing and my risk of cancer increasing. Therefore keep pushing for something to be done until you are happy with where your health is at.
They may not have tested your fT3 because it's simply just the hormone that fT4 converts into, and so it isn't necessary in order to determine how well your thyroid is working (it would simply show be same level as fT4 so wouldn't prove anything).
So to sum up this rambling post, you may as well ask for the trial because there is practically nothing to lose - no serious side affects and your health could drastically improve (but equally it could not help at all.) Hope this helps, and keep me posted on what you decide to do
Sorry about how long it's taken me to reply, things have been crazy recently. The surgery went ok - it took an hour longer than normal because it was more swollen than first thought, but I'm recovering well and only have to wait three weeks until I find out whether I need radioactive iodine treatment for any malignancy that might still be hanging around.
And those readings seem consistent with the diagnosis of sub-clinical hypothyroidism, the normal range for fT4 is 10-24 (you are right in the middle of that) and for TSH is 0.4-4.5 (your levels are slightly raised). I too had raised TSH (about 6) and low fT4 (at around 9), as well as raised antibodies suggesting Hastimoto's.
What my endocrinologist explained to me is that, if your fT3 levels were normal but TSH was raised, then your thyroid is not working at to a standard that is perfect for your body personally - someone else could have the exact same readings and not have any symptoms because the levels are right for their body.
As you are showing symptoms of fatigue etc you are perfectly within your rights to ask to be put on a trial, or to be referred to a second GP/endocrinologist/ENT for a second opinion. This is your health, so make a fuss if you think that something isn't right and doctors are more likely to listen to you. If I hadn't kept returning over the past year to have repeated blood test (because my symptoms first showed up early 2014), the dodgy levels wouldn't have been found (as hormone levels fluctuate),my thyroid would still be growing and my risk of cancer increasing. Therefore keep pushing for something to be done until you are happy with where your health is at.
They may not have tested your fT3 because it's simply just the hormone that fT4 converts into, and so it isn't necessary in order to determine how well your thyroid is working (it would simply show be same level as fT4 so wouldn't prove anything).
So to sum up this rambling post, you may as well ask for the trial because there is practically nothing to lose - no serious side affects and your health could drastically improve (but equally it could not help at all.) Hope this helps, and keep me posted on what you decide to do
Original post by spleenharvester
I have had a set of very debilitating symptoms for some time now that I should really have gone further with the doctors with but felt like it was just CFS at the time. I finally found out from my parents today that we have a long history of hyperthyroidism and that might explain a lot.
Worst symptoms are fatigue (14 hours~ sleep per day that is completely unrefreshing), difficulty processing what people are saying to me (I hear it but it just doesn't process, as if they are speaking another language. It's difficult to describe), poor memory and concentration, brain fog, various problems with my vision, tremor, long history of mood problems that have never really been given a straight diagnosis, insanely fast metabolism despite being a skinny kid (2500+ calories to maintain weight).
First popped up about 4 years ago, and I went to the doctor who referred me for bloodwork. To our surprise it all came back clean. Was offered a retest (as they suspected thyroid problems at the time) and failing that an MRI, but I didn't go back as I had exams (and in hindsight I have absolutely no idea why I didn't go after that).
Very recently my hair has started falling out and my sense of smell has gone AWOL. So I had more bloodwork today and will get results next week.
Tl;dr, I just want to know if anyone has been in a similar situation, particularly hear from anyone else with a thyroid problem. Anybody ever had false negatives on a blood test? I was told by my GP back home that the test isn't the most accurate hence being offered a retest, but my GP here told me it is very accurate. And if it's not a thyroid problem I have really no idea what to try next.
Worst symptoms are fatigue (14 hours~ sleep per day that is completely unrefreshing), difficulty processing what people are saying to me (I hear it but it just doesn't process, as if they are speaking another language. It's difficult to describe), poor memory and concentration, brain fog, various problems with my vision, tremor, long history of mood problems that have never really been given a straight diagnosis, insanely fast metabolism despite being a skinny kid (2500+ calories to maintain weight).
First popped up about 4 years ago, and I went to the doctor who referred me for bloodwork. To our surprise it all came back clean. Was offered a retest (as they suspected thyroid problems at the time) and failing that an MRI, but I didn't go back as I had exams (and in hindsight I have absolutely no idea why I didn't go after that).
Very recently my hair has started falling out and my sense of smell has gone AWOL. So I had more bloodwork today and will get results next week.
Tl;dr, I just want to know if anyone has been in a similar situation, particularly hear from anyone else with a thyroid problem. Anybody ever had false negatives on a blood test? I was told by my GP back home that the test isn't the most accurate hence being offered a retest, but my GP here told me it is very accurate. And if it's not a thyroid problem I have really no idea what to try next.
Hey Spleenharvester, I came across this post when I was trying to see if anyone else here was going through treatment for hyperthyroidism under the NHS. So sorry for the late post! I was diagnosed last week with Graves' after going to the doctor two weeks ago for blood work. The fatigue is something that I experienced too but I thought it was me just stressed or something. I would come home from school and then crash till the next morning and repeat for a couple of weeks. I was not aware of any thyroid problems that ran in my family until my mum was telling the doctor about it, but only my grandma and my uncle have hypo but then having thyroid problems in the family doesn't mean you'll get the same ones. With the vision, I started wearing glasses last year so I didn't read too much into that. I was also reading up about the symptoms on line and I've actually gained weight instead of losing and apparently either could happen to hyperthyroid patients. As far as I know TFTs are mostly accurate its rather rare you get false results, but hey I could be wrong about that! How is your condition now?
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