Thyroid advice uk

Hopeful1976

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Hi. Made an appointment with my gp to retest thyroid as I have many of the symptoms of an underactive thyroid. What questions/tests should I ask for? Thanks in advance.
 

nyanko_the_sane

It is a cats life for me.
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Make sure to get TSH, T3 and Free T4 labs done. These labs will screen for hypo or hyper thyroid. There are additional tests that will determine the cause of a thyroid disorder. You might also want to have your vitamin D level checked. Low D can cause issues with your parathyroid glands, which can ultimately lead to osteoporosis.
 

Hopeful1976

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Make sure to get TSH, T3 and Free T4 labs done. These labs will screen for hypo or hyper thyroid. There are additional tests that will determine the cause of a thyroid disorder. You might also want to have your vitamin D level checked. Low D can cause issues with your parathyroid glands, which can ultimately lead to osteoporosis.
Thank you so much
 

Wally

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@Hopeful1976 - I am on my way to an appt, but I will write more later this evening (I am in the U.S.) about a new form of thyroid hormone supplement that I have been trying. Been on it for 10 weeks and the effects have been quite amazing for me. It was only approved in the U.S. at the beginning of March.

I will tag you when I post more info. about this drug, my issues with thyroid blood tests and with supplementation with most of thyroid drugs currently prescribed. This may be a game changer for others with inflammation and gut issues (this can make it more difficult for an adequate amount of thyroid hormone to get into your cells rather than just your blood).

Wally 😎
 

BeADocToGoTo1

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To have the thyroid properly checked, it would include all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH.

Reverse T3 is often overlooked, and so is Hashimotos. But they are very important to check.

If the endo only wants to check TSH....run out of the office and find another. Also ask if they prescribe Armour (NDT), and not just the synthetics. If not, that is not a good sign either.

In addition there are some related nutrient levels that would be good to check:

selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.
 
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I've found GP ordered tests will usually only measure TSH and T4 unless you're highly symptomatic of a thyroid disorder. If you're not getting answers with those results alone you can pay to have a full thyroid panel blood test online. I did this through medichecks, they often have offers on Thursdays on their facebook page for reductions on thyroid blood tests and I think throughout July the Thyroid Ultravit test is reduced, it tests TSH, Free T4, Free T3, thyroglobulin antibodies, thyroid peroxidase, active vitamin B12, Folate, Vitamin D, C-Reactive Protein and Ferritin levels all in one go.
Edited: I did the Thyroid Ultravit rT3 which is more expensive but tests all the above as well as reverse T3 levels, in the UK reverse T3 is mostly ignored so may not be of much use in the long run.
 

Gingergrrl

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TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune)
I was going to write the exact same thing but you beat me to it. I would definitely test for the two Hashi's autoantibodies and it is the only way to rule in or out if thyroid issues are autoimmune.

Also ask if they prescribe Armour (NDT), and not just the synthetics.
I totally agree with this as well. My Endo prefers Armour over the synthetics but I know many do not. I've taken Armour since I was diagnosed with Hashi's in 2013.

I am on my way to an appt, but I will write more later this evening (I am in the U.S.) about a new form of thyroid hormone supplement that I have been trying. Been on it for 10 weeks and the effects have been quite amazing for me. It was only approved in the U.S. at the beginning of March.
I have not heard of this @Wally and look forward to hearing more about it when you have time.
 

Wally

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@Hopeful1976 - Returning here to post much later than anticipated due to problems with my internet service going off line off and on thru-out the evening and early morning hours.

The drug (hormone supplement) that I have been trying for the last 10 weeks is Tirosint SOL. Tirosint is pronounced “tear-o-sint”. This is a liquid form of T4. It was developed by IBSA Group, a Swiss pharmaceutical company. See, https://www.ibsagroup.com/

Tirosint also comes in a get capsule form and this form of the drug had been available for sale for several years. I believe the original approval for this drug by the FDA was in 2007. See, https://www.accessdata.fda.gov/drugsatfda_docs/nda/2007/022121_tirosint_toc.cfm

Please note that the liquid form of Tirosint (Tirosint SOL) is a new delivery system of T4 and It was approved on March 1, 2019 by the FDA to be sold in the U.S. It is my understanding that the liquid form of this drug has been available in other countries in Europe prior to being approved in the U.S. I do not know the current status of this drug in the UK.
See, 1) https://www.biospace.com/article/re...vailable-to-treat-hypothyroidism-in-the-u-s-/ and read here to understand about the development of this drug in liquid form and why it may work better than other forms of supplemental thyroid hormone for people with inflammatory and/or digestive related issues
2) https://tirosintsol.com/?gclid=EAIaIQobChMIsefuiuuv4wIVjvhkCh2vHQk5EAAYASAAEgL0VvD_BwE
and here
3) https://www.ibsagroup.com/therapeutic-areas/endocrinology.html
and here
4) https://www.ibsagroup.com/dam/jcr:b3327c07-6bcf-436e-8d18-43a0b5953bc2/IBSA Fact Sheets.pdf


I did not try Tirosint in the gel capsule form, so I cannot compare whether or not I would have experienced a difference with this form of T4 in relation to the liquid form. The endocrinologist who prescribed Tirosint to me was not optimistic that this brand (Tirosint gel form of T4 ) would do anything to improve any of my symptoms (though she could see that I was clearly showing signs of hypothyroidism). Apparently, this drug had not made any difference with her patients who had tried it, except for a very small minority who did seem to think it worked better than other forms of T4 or T4/T3 that they had previously tried. Interesting part of my story trying Tirosint SOL is that the endocrinologist did not mention that she was prescribing the new liquid form of this drug and it was not clear from subsequent communications if she was even aware that this change in the drug delivery system to a liquid form could produce a different result than the gel delivery system.

For the last 28 years I have tried T4 from several different manufacturers both brand and generic. I have tried products that contained both T4 and T3 and products with just T3. I have also been seen by many of the “top endocrinologists” in the U.S.

My thyroid blood tests compared to my clinical signs of hypothyroidism have always puzzled doctors who have treated and consulted on my case for almost half of my life. I have been told by many (but not all) that the current blood tests (especially the TSH test), are the most accurate tests to determine whether your body is making enough, converting enough or receiving enough (either naturally or supplementally) thyroid hormone to adequately support the functions of the human body that are powered or influenced by thyroid hormone.

As a little bit of background info. about my own thyroid journey, I developed thyroiditis shortly after coming down with flu symptoms (that somehow seemed different than I had ever experienced before and the date of this event will be forever itched into my memory). It took years and years before I was diagnosed with ME, but the onset of my symptoms correspond back to the day I came down with a mysterious flu following a 5 day vacation in Incline Village, Lake Tahoe. I like many other people here on this Forum and elsewhere have also had many trials and tribulations with thyroid issues - such as blood tests, diagnosis and treatment. I can go into more detail with those experiences at a later date, if additional details about my thyroid journey might be helpful to someone reading this post.

In the mean time, I will just say that there has been no other thyroid drug that had resulted in such a remarkable transformation in my level of energy and improvement in mental clarity than this particular drug (with the exception of taking thyroid hormone at levels much higher than recommended based on my thyroid blood test results). Notwithstanding the improvement in symptoms that I have experienced with doses of T4 and/or T3 that caused most physicians (internists and/or endocrinologists) to freak out when seeing my suppressed TSH level, I have only had one experience with a dose of thyroid hormone that appeared to cause some very uncomfortable physical symptoms. It was believed that this was due to switching to a T4/T3 product at a very high dose without considering the need to slowly increase a dose change especially when trialing a different product and a different form of thyroid hormone.

As each person is unique in their health status and what drugs may or may not be compatible within their body and with other illnesses they may experiencing or medications/supplements they may be taking, I can only provide information on how this new drug has worked (so far) for me. However, since it does appear that there may be a group of ME and/or CFS patients that are also experiencing or have experienced thyroid issues (including thyroid cancer), I feel it is important to share my experience with this drug just in case it could help someone else.

It should also be noted that this drug has not alleviated all the symptoms of my illness, but as I have reported here on the Forum in other posts, it has produced a pretty similar and spectacular result that I had from taking high doses of Famciclivor (i.e. fatigue and cognitive functioning). Unfortunately, on Famciclivor the symptom improvement tended to decline after about 5 months and I developed some unpleasant side effects. My best guess is that both drugs were/are getting thru and/or suppressing some level of inflammation and microbiome and viral issues (SIBO, enteroviruses and herpesviruses). But I am not a scientist just a patient who was trained as a lawyer. My background as a lawyer has given me some interesting investigative skills and mostly importantly it has given me the tenacity to keep searching for answers, feeling confident enough to question “any” authority figure/or professional with skills that could exceed my own and to believe that science can often be more of an art than a science in that “ science is not always settled”, but rather an ever evolving quest to gain more knowledge about the mysteries of life that surround us.

Wishing much good luck in your thyroid journey. Feel free to reach out to me thru the Forum or privately by e-mail, if you think I might be able to answer any other questions you may have about my experience with Tirosint or other thyroid or ME questions.

Wally 😎
 
Last edited:

Hopeful1976

Senior Member
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@Hopeful1976 - Returning here to post much later than anticipated due to problems with my internet service going off line off and on thru-out the evening and early morning hours.

The drug (hormone supplement) that I have been trying for the last 10 weeks is Tirosint SOL. Tirosint is pronounced “tear-o-sint”. This is a liquid form of T4. It was developed by IBSA Group, a Swiss pharmaceutical company. See, https://www.ibsagroup.com/

Tirosint also comes in a get capsule form and this form of the drug had been available for sale for several years. I believe the original approval for this drug by the FDA was in 2007. See, https://www.accessdata.fda.gov/drugsatfda_docs/nda/2007/022121_tirosint_toc.cfm

Please note that the liquid form of Tirosint (Tirosint SOL) is a new delivery system of T4 and It was approved on March 1, 2019 by the FDA to be sold in the U.S. It is my understanding that the liquid form of this drug has been available in other countries in Europe prior to being approved in the U.S. I do not know the current status of this drug in the UK.
See, 1) https://www.biospace.com/article/re...vailable-to-treat-hypothyroidism-in-the-u-s-/ and read here to understand about the development of this drug in liquid form and why it may work better than other forms of supplemental thyroid hormone for people with inflammatory and/or digestive related issues
2) https://tirosintsol.com/?gclid=EAIaIQobChMIsefuiuuv4wIVjvhkCh2vHQk5EAAYASAAEgL0VvD_BwE
and here
3) https://www.ibsagroup.com/therapeutic-areas/endocrinology.html
and here
4) https://www.ibsagroup.com/dam/jcr:b3327c07-6bcf-436e-8d18-43a0b5953bc2/IBSA Fact Sheets.pdf


I did not try Tirosint in the gel capsule form, so I cannot compare whether or not I would have experienced a difference with this form of T4 in relation to the liquid form. The endocrinologist who prescribed Tirosint to me was not optimistic that this brand (Tirosint gel form of T4 ) would do anything to improve any of my symptoms (though she could see that I was clearly showing signs of hypothyroidism). Apparently, this drug had not made any difference with her patients who had tried it, except for a very small minority who did seem to think it worked better than other forms of T4 or T4/T3 that they had previously tried. Interesting part of my story trying Tirosint SOL is that the endocrinologist did not mention that she was prescribing the new liquid form of this drug and it was not clear from subsequent communications if she was even aware that this change in the drug delivery system to a liquid form could produce a different result than the gel delivery system.

For the last 28 years I have tried T4 from several different manufacturers both brand and generic. I have tried products that contained both T4 and T3 and products with just T3. I have also been seen by many of the “top endocrinologists” in the U.S.

My thyroid blood tests compared to my clinical signs of hypothyroidism have always puzzled doctors who have treated and consulted on my case for almost half of my life. I have been told by many (but not all) that the current blood tests (especially the TSH test), are the most accurate tests to determine whether your body is making enough, converting enough or receiving enough (either naturally or supplementally) thyroid hormone to adequately support the functions of the human body that are powered or influenced by thyroid hormone.

As a little bit of background info. about my own thyroid journey, I developed thyroiditis shortly after coming down with flu symptoms (that somehow seemed different than I had ever experienced before and the date of this event will be forever itched into my memory). It took years and years before I was diagnosed with ME, but the onset of my symptoms correspond back to the day I came down with a mysterious flu following a 5 day vacation in Incline Village, Lake Tahoe. I like many other people here on this Forum and elsewhere have also had many trials and tribulations with thyroid issues - such as blood tests, diagnosis and treatment. I can go into more detail with those experiences at a later date, if additional details about my thyroid journey might be helpful to someone reading this post.

In the mean time, I will just say that there has been no other thyroid drug that had resulted in such a remarkable transformation in my level of energy and improvement in mental clarity than this particular drug (with the exception of taking thyroid hormone at levels much higher than recommended based on my thyroid blood test results). Notwithstanding the improvement in symptoms that I have experienced with doses of T4 and/or T3 that caused most physicians (internists and/or endocrinologists) to freak out when seeing my suppressed TSH level, I have only had one experience with a dose of thyroid hormone that appeared to cause some very uncomfortable physical symptoms. It was believed that this was due to switching to a T4/T3 product at a very high dose without considering the need to slowly increase a dose change especially when trialing a different product and a different form of thyroid hormone.

As each person is unique in their health status and what drugs may or may not be compatible within their body and with other illnesses they may experiencing or medications/supplements they may be taking, I can only provide information on how this new drug has worked (so far) for me. However, since it does appear that there may be a group of ME and/or CFS patients that are also experiencing or have experienced thyroid issues (including thyroid cancer), I feel it is important to share my experience with this drug just in case it could help someone else.

It should also be noted that this drug has not alleviated all the symptoms of my illness, but as I have reported here on the Forum in other posts, it has produced a pretty similar and spectacular result that I had from taking high doses of Famciclivor (i.e. fatigue and cognitive functioning). Unfortunately, on Famciclivor the symptom improvement tended to decline after about 5 months and I developed some unpleasant side effects. My best guess is that both drugs were/are getting thru and/or suppressing some level of inflammation and microbiome and viral issues (SIBO, enteroviruses and herpesviruses). But I am not a scientist just a patient who was trained as a lawyer. My background as a lawyer has given me some interesting investigative skills and mostly importantly it has given me the tenacity to keep searching for answers, feeling confident enough to question “any” authority figure/or professional with skills that could exceed my own and to believe that science can often be more of an art than a science in that “ science is not always settled”, but rather an ever evolving quest to gain more knowledge about the mysteries of life that surround us.

Wishing much good luck in your thyroid journey. Feel free to reach out to me thru the Forum or privately by e-mail, if you think I might be able to answer any other questions you may have about my experience with Tirosint or other thyroid or ME questions.

Wally 😎
So much thanks for this detailed post! I'm so grateful for the information and support 😊
 

Hopeful1976

Senior Member
Messages
214
Likes
536
To have the thyroid properly checked, it would include all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH.

Reverse T3 is often overlooked, and so is Hashimotos. But they are very important to check.

If the endo only wants to check TSH....run out of the office and find another. Also ask if they prescribe Armour (NDT), and not just the synthetics. If not, that is not a good sign either.

In addition there are some related nutrient levels that would be good to check:

selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.
Thanks! I will show this to the dr! ☺