Thyroid Cancer

[eve789]

I got a call from my doctor last night, and looks like I have thyroid cancer. I am not thrilled with the idea of surgery or of having to take a pill everyday for the rest of my life, but from what I understand, thyroid cancer is generally small potatoes as these things go.

I've found some references to increased rates of thyroid cancer for folks with ME/CFS, but was unable to find an actual study anywhere. Does anyone know more about this relationship or an actual research article?

Have you had thyroid cancer or a total thyroidectomy and if so, how did surgery recovery and long-term treatment with hormone replacement play into your ME/CFS symptoms?

 

[ukxmrv]

Eve, so sorry to hear about the cancer. Thryroid cancer runs in my family. So does ME but they are striking different people. Hope someone can give you some practical information and support here.

 

[Sallysblooms]

I am sorry and I hope everything goes very smoothly for you.

 

[Mij]

I'm sorry to hear this too.
You might be interested in this:

http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94

 

[Wally]

I got a call from my doctor last night, and looks like I have thyroid cancer. I am not thrilled with the idea of surgery or of having to take a pill everyday for the rest of my life, but from what I understand, thyroid cancer is generally small potatoes as these things go.

I've found some references to increased rates of thyroid cancer for folks with ME/CFS, but was unable to find an actual study anywhere. Does anyone know more about this relationship or an actual research article?

Have you had thyroid cancer or a total thyroidectomy and if so, how did surgery recovery and long-term treatment with hormone replacement play into your ME/CFS symptoms?

Eve789,

Yes, I have had thyroid cancer (papillary) and I have a partial thyroidectomy, a total thyroidectomy and radiation (radioactive iodine treatment). I had my total thyroidectomy surgery divided into two parts (one week a part) due to the fact that I had a partial thyroidectomy a number of years before and the surgeon wanted to be very cautious about not causing any damage to my vocal cords. Recovery from the actual operation is pretty quick. I also had Hashimoto's Thyroid Disease and I have been diagnosed with MECFS from what appears to be a viral etiology. I am also on thyroid hormone replacement for the rest of my life because I do not have any remaining functioning thyroid gland. I am currently taking a combination of Synthroid (T4) and Cytomel (T3).

I would be glad to provide you with additional information either through posting or by a private "conversation. There are a number of people in the MECFS world who suffer from autoimmune thyroid problems and/or thyroid cancer, so you should be able to learn a lot to help you understand this illness.

 

[Wally]

I'm sorry to hear this too.
You might be interested in this:

http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94

Mij,

Just took a look at this link. Thank you for providing this information. I have been doing some of my own (amateur) research into the possible connections between EBV, Hashimoto's Disease, Thyroid and other Cancers (oral cancers, stomach cancer, lymphomas etc...), MS, RA, MECFS, Vitamin D and Glutathione.

Pretty interesting as you begin to follow the trail. EBV and other herpesviruses have been the agent that I have been researching, but it does seem possible/probable that other environmental and genetic factors may also play a factor in how this trail starts, stops, progresses or ends, along with which cast members are needed by your body/immune system to perform its own special theatrical performance of this illness.

Wally

 

[caledonia]

Have you had thyroid cancer or a total thyroidectomy and if so, how did surgery recovery and long-term treatment with hormone replacement play into your ME/CFS symptoms?

Sorry to hear about your diagnosis. My mom (undiagnosed ME/CFS) had thyroid cancer. This was back in the 80's. Like you have heard, the doc told her, if you have to have cancer, this is the one to have because it's very slow growing and has a very good prognosis.

My mom did radioactive iodine, which destroyed the thyroid, so no surgery was required. She had to go on a iodine free diet for a month, then take the radioactive iodine. The idea was that the thyroid, being starved of iodine, would soak up all the radioactive iodine.

I remember she wasn't too thrilled with the diet because she was already underweight and the diet caused her to lose more weight. We had to use separate bathrooms for a period of time so the rest of the family wouldn't come in contact with the radioactive iodine.

I don't remember it having any effect on her already low energy.

Taking a thyroid pill is no big deal. I take one for autoimmune thyroiditis. It's a small pill - barely nothing compared to all the supplements I have to take.

ps. there was some speculation that my mom's cancer may have been due to accidentally being overexposed to a sunlamp when she was teenager. At that time, the sunlamp was used to treat acne.

 

[Mij]

Hi Wally,

Yes I've also been researching this for over 20yrs. I had a sudden viral onset with highly elevated anti-thyroid antibodies, still have elevated microsomal and was treated for h. pylori, it all seems to have a "trail".
I'm always concerned about thyroid cancer and stay away from unnecessary xrays as much as possibe.

 

[Wally]

Hi Wally,

Yes I've also been researching this for over 20yrs. I had a sudden viral onset with highly elevated anti-thyroid antibodies, still have elevated microsomal and was treated for h. pylori, it all seems to have a "trail".
I'm always concerned about thyroid cancer and stay away from unnecessary xrays as much as possibe.

Ah! Yes. The H.Pylori connection is also interesting. I am not sure what you mean by "elevated microsomal" can you elaborate? Do you still have an elevated anti-thyroid antibody level? Do you have Hashimoto's disease? Have you had any recent thyroid testing done? Did they run viral panels on you when you first became sick? Have you had recent viral panels run? Have you been diagnosed with MECFS?

Wow! Sorry - I have just bombarded you with a lot of personal questions that you may have no desire to share with me or the online world at large. I just find all of these connections so interesting that it makes me want to gather up all the information I can. Thanks again for sharing what you did and if you would like to talk to further, but off the main grid - you can reach me through a "private" conversation through the Forum connection.

Wally

 

[Mij]

Ah! Yes. The H.Pylori connection is also interesting. I am not sure what you mean by "elevated microsomal" can you elaborate? Do you still have an elevated anti-thyroid antibody level? Do you have Hashimoto's disease? Have you had any recent thyroid testing done? Did they run viral panels on you when you first became sick? Have you had recent viral panels run? Have you been diagnosed with MECFS?

Wow! Sorry - I have just bombarded you with a lot of personal questions that you may have no desire to share with me or the online world at large. I just find all of these connections so interesting that it makes me want to gather up all the information I can. Thanks again for sharing what you did and if you would like to talk to further, but off the main grid - you can reach me through a "private" conversation through the Forum connection.

Wally

Hi Wally, I hope eve789 doesn't mind me taking up her thread but here goes.

1) last test showed my anti-microsomal antibodies are still elevated, they should be at 0.
2) anti-thyroid anti-bodies are no longer elevated. The ME doctor who diagnosed me was partners with Dr Hyde years ago and advised no thyroid meds. Some doctors will treat this with meds though.
3) no Hashimoto disease but tend to have "sub clinical hypo thyroid", fluctuates.
4) I'm not sure whether my doc ran viral panel when I first became ill.
5) had various viral panels done 12yrs into the illness. all negative.
6) was very sick with h.pylori from the onset I believe but no doctor thought to test me until 10yrs into the illness and I was treated because I eventually became so ill I was bent over and crawling on the floor.

I had an immune panel done and my CD4, CD8 and CD4/C8 ratio are all abnormal.

 

[jeffrez]

That's too bad, Eve. Topic hits close to home b/c I have Hashimoto's and a couple of nodules. Have been afraid to have them biopsied, tbh - kind of don't want to know ("you can't handle the truth!" Lol, true), and I also don't know how I would have surgery without being able to tolerate anesthesia. I haven't really been able to take thyroid hormone b/c it seems to make my muscle energy crash more (including heart), so I'm always interested to see how people w/ CFS are managing thyroid issues. Hope everything goes well, best of luck!

 

[Wally]

Hi Wally, I hope eve789 doesn't mind me taking up her thread but here goes.

1) last test showed my anti-microsomal antibodies are still elevated, they should be at 0.
2) anti-thyroid anti-bodies are no longer elevated. The ME doctor who diagnosed me was partners with Dr Hyde years ago and advised no thyroid meds. Some doctors will treat this with meds though.
3) no Hashimoto disease but tend to have "sub clinical hypo thyroid", fluctuates.
4) I'm not sure whether my doc ran viral panel when I first became ill.
5) had various viral panels done 12yrs into the illness. all negative.
6) was very sick with h.pylori from the onset I believe but no doctor thought to test me until 10yrs into the illness and I was treated because I eventually became so ill I was bent over and crawling on the floor.

I had an immune panel done and my CD4, CD8 and CD4/C8 ratio are all abnormal.

Hmmm! Even more interesting. Thanks for providing this information. I think I may have hijacked this post/thread so I apologize if I did. At the moment I can't even remember what the original thread was about. Just responded to a post about thyroid cancer. Anyhow, if anyone would like to talk further we can set up a new thread or see if there is already one that would fit better for this discussion. I am going to hop over to another Forum posting to comment and then I need to log off for a little while, but I will check back in later to see if there is any interest in discussing the possible links between autioimmune thyroid disease, thyroid cancer, EBV, Vitamin D etc.... on this thread or on another one. Bye for now.

Wally

 

[taniaaust1]

I was concerned about the incidence of thyriod cancer in a certain subset of ME people some years back and looking into it (I have some stuff which fits into that subgroup eg (d) an unusual high incidence of cervical vertebrae osteoarthritic changes. (I was diagnosed with ortheoarthritis while young, in 3 different places including cervical vertebrae when only in my 30s!! so hence I was concerned on reading about all this). It isnt really normal for one to start getting othreoarthritis till in ones 40s.

Note that study http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94 says

These findings would suggest that 6% of the ME/CFS patients seen, or 6,000 cases per 100,000, had a confirmed thyroid malignancy. Unfortunately, these figures may be conservative since we are in the process of obtaining needle biopsies on six further cases of these first 100 patients. In addition, we have not yet performed thyroid ultrasound on all 100 cases.

I assume the outcome of it did come out far higher (unless it was a different ME/CFS thyriod cancer study I saw) as it was found that 17% of ones of this ME/CFS subgroup had thyriod cancer when they were fully investigated (but i think this study finding was informally reported).

The specialist who was finding all these cases in his ME/CFS patients.. I think it said he now does regular checking for this in his patients, yearly thyriod ultrasounds or something in this subgroup of his patients. (sorry I forgot the specialists/researchers name).

 

[Wally]

I was concerned about the incidence of thryiod cancer in a certain subset of ME people some years back and looking into it (I have some stuff which fits into that subgroup eg (d) an unusual high incidence of cervical vertebrae osteoarthritic changes. (I had orthoarthritis in 3 different places including cervical vertebrae when only in my 30s!! so hence I was concerned on reading about all this).

Note that study http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94 says


I assume the outcome of it did come out far higher (unless it was a different ME/CFS thyriod cancer study I saw) as it was found that 17% of ones of this ME/CFS subgroup had thyriod cancer when they were fully investigated (but i think this study finding was informally reported)

Taniaaust1,

I also remember reading that it was felt that the relationship between ME/CFS and thyroid cancer had not yet been fully investigated. I wonder what it would cost to fully investigate this relationship? Also, it seems that the advances in data mining might be a good starting point for such an investigation. Do you know if there has ever been an informal poll on this Forum or elsewhere asking how many people with a diagnosis of ME, CFS or ME/CFS have also been diagnosed with thyroid cancer?

Wally

 

[taniaaust1]

I just want to point out to all that this study at http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94 is a ME study and not a general CFS study.

 

[Wally]

I just want to point out to all that this study at http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94 is a ME study and not a CFS study. So this thyriod finding is not relevent for CFS.

Taniaaust1,

I did see that the study was done with ME patients, but I know in the United States that the term CFS or ME/CFS has been used when referring to some people who might fit in a definition of ME used in other countries. In my opinion, I think a study whether by the name of ME, ME/CFS or CFS where there may be a relationship with thyroid cancer or other thyroid dysfunction is worth further investigation.

Wally

 

[taniaaust1]

It would thou change this studies results completely if they used a different patient subset to those used in this study.

To validate this study. someone else should use exactly the same criteria in choosing their patients and redo this study.

(otherwise it leads to watered down results like all the CFS studies which include ones of probably many differing things all being tried to be lumped together which then never lets abnormalities of differing things show up...subsets of patients need to be used. If an abnormality is found in any patient group, the same type patients should be used to confirm an original finding.. once vertified.. then they can see if same can be found in other groups).

In the US thou ME patients ended up in CFS studies.. rarely ME criteria was used in patient selection for CFS studies.. If it has.. the authors tend to state it in their article as this studies author did and define their CFS group as being the ME patient group and different from general CFS patients.

Quotes below from this study and its author which clearly shows it is a ME study rather then a CFS one (thou he put CFS in the heading for obvious reasons due to the worldwide confusion out there I'd think). The names dont really matter ..its the studying of like patient groups which does.
http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94

1. Unfortunately, even those defining the illness have tended to treat CFS as a disease and speak of it as a disease, rather than investigating the entire patient as to the causes of their fatigue syndrome. There has been some movement to consider these syndromes as the same. They are not.

ME is essentially an acute onset, post-viral illness with CNS, organ and immune system implications or pathologies. ME has a clearly defined incubation period of 4 to 6 days, and is well known to occur in epidemics. CFS is essentially defined by a persisting fatigue state of six months or more in a patient who rapidly exhausts both physical and cognitive abilities, and who is slow to recover to decreased baseline ability. CFS can have either an acute or gradual onset, has no known incubation period, and has no organ associated pathology other than the immune system. ME has the attributes of a disease process, whereas CFS is clearly a syndrome.

1. Each of the 6 patients fell ill abruptly after an acute infectious disease. Their illness was such that they could no longer function at a normal level after the onset of their acute illness. Each of the 6 patients had significant CNS dysfunction by history, and significant evidence by NeuroSPECT of CNS involvement of both cortical and subcortical brain perfusion. Under the above interpretations of ME and CFS, these 6 patients would fall into the ME group of patients. I would like to state that all ME patients might be confirmed by measurement using SPECT and PET brain scanners.

 

[Wally]

Taniaaust1,

I was thinking that it would be interesting to data mine for patients who fit into the same criteria as used for the ME study to see if thyroid cancer or other thyroid disorders shows up in past or present medical histories. Then if there was significant statistical information obtained from that study further follow-up could be done to see if a wider patient base without a specific "ME" diagnosis may provide further information about a possible correlation between thyroid cancer and a certain subset of patients regardless of the name used to diagnose their illness. It just seems like much of this information may already be captured in patient's charts and/or could fairly easily be updated with present day information. However, since I am not knowledgeable about the study design/cost of the type of research I am suggesting perhaps this is much more complicated and costly than I realize.

Wally

 

[taniaaust1]

There was a large cancer CFS study ... I cant remember what diagnostic criteria they used ..I assume it was just general CFS definition they used? so probably not a ME study but rather a CFS one, that didnt show thyriod cancer as being an issue in CFS patients... (all the more reason to make sure a follow up study matches how the patients were choosen in the ME one)

With the recent CFS cancer study.. that one too I dont know if they had criteria of how long their study participates had to have CFS for to qualify to enroll in the study (maybe some just had ME/CFS for 6mths a year?). If ME//CFS was causing cancer.. one just wouldnt expect to be seeing it in those who havent had the disease for long say only 2-3 years. Those who have it LONGER TERM would be the ones to be looking at to find out if it was causing an increased cancer risk.

The thyriod ME study was done on a patient group who'd had it for a while http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94

Each of these patients had a history of a significant ME/CFS and/or FS for 5 to 7 years prior to the discovery of the thyroid malignancy.

Now would the results have been differen if they had they looked at patients who say had had it for 10-15 years? An increase in cancer according to how long one had had ME.. would help to show if its causing cancer or not.

Maybe someone could convince some cancer researchers to do more study in this area (more money is put into cancer funding then into ME/CFS funding..so maybe we could get cancer funding money from somewhere used to study this)

 

[Wally]

There was a large cancer CFS study ... I cant remember what diagnostic criteria they used ..I assume it was just general CFS definition they used? so probably not a ME study but rather a CFS one, that didnt show thyriod cancer as being an issue in CFS patients... (all the more reason to make sure a follow up study matches how the patients were choosen in the ME one)

With the recent CFS cancer study.. that one too I dont know if they had criteria of how long their study participates had to have CFS for to qualify to enroll in the study (maybe some just had ME/CFS for 6mths a year?). If ME//CFS was causing cancer.. one just wouldnt expect to be seeing it in those who havent had the disease for long say only 2-3 years. Those who have it LONGER TERM would be the ones to be looking at to find out if it was causing an increased cancer risk.

The thyriod ME study was done on a patient group who'd had it for a while http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94


Now would the results have been differen if they had they looked at patients who say had had it for 10-15 years? An increase in cancer according to how long one had had ME.. would help to show if its causing cancer or not.

Maybe someone could convince some cancer researchers to do more study in this area (more money is put into cancer funding then into ME/CFS funding..so maybe we could get cancer funding money from somewhere used to study this)

Taniaaust1,

I like your way of thinking, the idea to approach this from a cancer research funding perspective, rather than from a ME/CFS research project requiring funding, could be a possible way around current funding roadblocks that seem to exist for this illness.

I would fall in the category of someone who had this illness for about 15 years before thyroid cancer was discovered. The same general area of the thyroid where the cancer was found had been biopsided less than a year after the onset of my initial symptoms. No cancer was detected following this first biopsy and partial thyroidectomy, but Hashimoto's Disease was found on subsequent testing of the thyroid tissue removed from the gland. Could early discovery of my thyroid illness and subsequent treatment with supplemental thyroid hormone have helped to knock down some of the inflammation that may have been occurring with this gland?

To add another wrinkle to this puzzle, I am one of those people who had sustained what appeared to be a bad case of mono as a teenager. Then right around the time that I originally became ill, I had sustained a tick bite in my neck (near the same location where my original thyroid tumor was found and this was on the same side of my thyroid where subsequently (15 years later) thyroid where cancer was found. Was this a coincidence or did the tick bite set in motion an immunological reaction that resulted in reactivation of latent EBV (which seems to be the virus that plays a big role in my illness)? Not sure, but if thyroid cancer has been on the radar screen with some long time ME physicians then I would argue that a much more thorough investigation of the impact of this illness on the thyroid gland needs to be investigated. Now if I could only figure out how to make this type of research project happen??? Here is to wishing/praying that a ME/CFS angel comes along to push this type of research forward.

Wally