Having surgery Wednesday. Any DS'ers that had total thyroidectomy post-op?
So the inevitable has happened. I knew I had Hashimoto's Thyroid Disease (caused by my lupus) pre-DS. Every 6 months I have been getting biopsies and MRI's annually to make sure my thyroid hasn't grown or developed cancer. Well I had an MRI a few weeks ago that showed additional growth and it is putting pressure on my carotid artery and trigmenal nerve. On Wednesday I will be having a total thyroidectomy. We will not know if it has become malignant until it's removed. My vascular surgeon said my surgery may take anywhere from 1 to 6 hours, which is such a big time difference it makes me uncomfortable. This is really scary for me for multiple reasons.
One of my many concerns is how bad will I stall and how it will affect my weight loss? I have only talked to one DS'er in the past that I know of that has a thyroid issue. I'm also worried about healing, scarring, vocal cord damage, parathyroid damage (which I was told is higher risk in my case), death (more scared of this surgery than I was the DS), thyroid medication post-op, and supplementation since I was told I need to increase my calcium and vitamin D3 (even though neither my DS surgeon or the vascular surgeon know to what amount since I am considered an unusual case now).
If there is ANY one out there that may have ANY advice or words of wisdom, please let me know.
One of my many concerns is how bad will I stall and how it will affect my weight loss? I have only talked to one DS'er in the past that I know of that has a thyroid issue. I'm also worried about healing, scarring, vocal cord damage, parathyroid damage (which I was told is higher risk in my case), death (more scared of this surgery than I was the DS), thyroid medication post-op, and supplementation since I was told I need to increase my calcium and vitamin D3 (even though neither my DS surgeon or the vascular surgeon know to what amount since I am considered an unusual case now).
If there is ANY one out there that may have ANY advice or words of wisdom, please let me know.
Winning isn't everything, but wanting to win is.
DONT BE AFRAID TO FAIL......BE AFRAID NOT TO TRY!
highest weight 313/ surgery 255 / current 185 / goal 135 Height 5'6"
DONT BE AFRAID TO FAIL......BE AFRAID NOT TO TRY!
highest weight 313/ surgery 255 / current 185 / goal 135 Height 5'6"
No post op, but pre-op.
The time difference is so they can get as much thyroid out as they can without damaging your vocal chords or parathyroid glands. My vocal chords were damaged, but mostly healed within about six months. Until then, I had a sexy Marilyn Monroe-esque whispery voice. I didn't mind it, frankly. I had to take rx potassium for several months afterwards. I think the parathyroid glands get jostled no matter what they do and they are very sensitive.
I used vitamin E oil on my scar and it is barely visible now. But, so what? It is not disfiguring and while it was still bright red, I enjoyed telling people that they should "see the other guy."
I felt SO much better once it was out of me, I really don't recall any post op pain or discomfort. Compared to the DS, it's like taking out a splinter.
Don't worry yourself ragged about your vitamins. Boost yourself now and you can deal with any deficiencies afterwards. It really won't be a problem. Don't wory about your vitamins while you're in the hospital, either. You're generally not allowed to bring in your own meds, anyway. You can skip a few days without any harm.
You may not stall and so what if you do? A stall is temporary and out of our control, anyway. Nothing to worry about. Things will pick up where they left off eventually.
Don't anticipate getting a lot of protein in the hospital. A year and a half ago I was in the hospital for several weeks and the best they could do for a high protein diet was lasagna with meat sauce. Don't worry about that, either. You can not worry about your protein intake for a few days. It won't kill you and you can just pick up where you left off when you get home. I survived hospital food.
Don't tie yourself all up into a large knot of worry over this or make it harder or more complicated than it needs to be.
You'll be fine. Promise.
The time difference is so they can get as much thyroid out as they can without damaging your vocal chords or parathyroid glands. My vocal chords were damaged, but mostly healed within about six months. Until then, I had a sexy Marilyn Monroe-esque whispery voice. I didn't mind it, frankly. I had to take rx potassium for several months afterwards. I think the parathyroid glands get jostled no matter what they do and they are very sensitive.
I used vitamin E oil on my scar and it is barely visible now. But, so what? It is not disfiguring and while it was still bright red, I enjoyed telling people that they should "see the other guy."
I felt SO much better once it was out of me, I really don't recall any post op pain or discomfort. Compared to the DS, it's like taking out a splinter.
Don't worry yourself ragged about your vitamins. Boost yourself now and you can deal with any deficiencies afterwards. It really won't be a problem. Don't wory about your vitamins while you're in the hospital, either. You're generally not allowed to bring in your own meds, anyway. You can skip a few days without any harm.
You may not stall and so what if you do? A stall is temporary and out of our control, anyway. Nothing to worry about. Things will pick up where they left off eventually.
Don't anticipate getting a lot of protein in the hospital. A year and a half ago I was in the hospital for several weeks and the best they could do for a high protein diet was lasagna with meat sauce. Don't worry about that, either. You can not worry about your protein intake for a few days. It won't kill you and you can just pick up where you left off when you get home. I survived hospital food.
Don't tie yourself all up into a large knot of worry over this or make it harder or more complicated than it needs to be.
You'll be fine. Promise.
Check out my profile: http://www.obesityhelp.com/member/goodkel/Or click on my name
DS SW 265 CW 120 5'7"
I too have Hashimoto's and recently had a partial thyroidectomy which was unplanned. My surgeon found a mass on my thyroid when he was removing my parathyroid so I got a 2 for 1. Turned out to be an oncocytic metaplasia. So many growths turn out to be non-cancerous and to lose the entire thyroid is unnecessary. I wasn't going to respond to your post but then I received my latest issue of Mary Shomon's e-newsletter in my inbox and it had this timely article:
http://thyroid.about.com/od/cancergoiternodules/a/veracyte-a firma-thyroid-analysis-nodules.htm?nl=1
If you don't have to lose the entire thyroid then don't. It just isn't worth the future health issues. I am fortunate to have a surgeon who isn't keen on removing the entire thryoid if it isn't necessary.
You mentioned you have lupus. Since you are prone to autoimmune diseases, you should really consider low dose naltrexone. I remember recently posting on a thyroid question on this forum and suggesting LDN at that time and the poster was already taking it. I can't remember if it was you but I don't think it was so please consider this remarkable alternative. My wonderful surgeon was not familiar with this treatment so I printed out the entire homepage of the site I am about to suggest and asked him to consider it. A week later, after he 'did his himework', he called me and gave me a script for it. I just started it last night and I am very excited about it.
http://www.lowdosenaltrexone.org/
http://thyroid.about.com/od/cancergoiternodules/a/veracyte-a firma-thyroid-analysis-nodules.htm?nl=1
If you don't have to lose the entire thyroid then don't. It just isn't worth the future health issues. I am fortunate to have a surgeon who isn't keen on removing the entire thryoid if it isn't necessary.
You mentioned you have lupus. Since you are prone to autoimmune diseases, you should really consider low dose naltrexone. I remember recently posting on a thyroid question on this forum and suggesting LDN at that time and the poster was already taking it. I can't remember if it was you but I don't think it was so please consider this remarkable alternative. My wonderful surgeon was not familiar with this treatment so I printed out the entire homepage of the site I am about to suggest and asked him to consider it. A week later, after he 'did his himework', he called me and gave me a script for it. I just started it last night and I am very excited about it.
http://www.lowdosenaltrexone.org/
Thank you so much for your reply. I had a thyroid biopsy after my DS. My results were inconclusive and my Endocrinologist recommended a total thyroidectomy (again). I have been putting off surgery for over a year because of my fear of becoming hypothyroid (and the weight gain issues). Unfortunately I have mulitple bilateral nodules with a dominate nodule on my right side. Here is a copy of my report:
Source Right Thyroid aspirate
History 2 solid thyroid nodules within the right and left lobes
Specimen 2 prepared slide, Thin-Prep
Interpretation both biopsies contain groups of bland follicular cells, with Hurthle cell neoplasm, a variable amount of colloid, and scattered histiocytes. Findings are consistent with colloid nodules.
Radiology: Ultrasound Head/Neck Soft Tissue (performed prior to FNA biopsy)
The thyroid gland is enlarged with the right lobe measuring 5.9 cm x 3.9 cm x 3.4 cm. The left lobe measures 6.4 cm x 3.3 cm x 2.4 cm. The isthmus is 1.8 cm is AP diameter.
There is diffuse heterogeneity of the echogenicity of the thyroid gland. In the mid/lower pole of the right lobe, the dominant, solid nodule measures 2.7 cm x 2.5 cm 2.9 cm in maximum diameter. There are three discrete solid appearing nodules demonstrated in the left lobe. That superiorly measures 9 mm x 8 mm x 7 mm, and that slightly more inferior, however, contiguous with the above nodule measures 1.5 cm x 1.4 cm x 1.4 cm. The largest nodule is in the lower pole measuring 4.2 cm x 3.3 cm x 3.1 cm maximum diameter. The dominant nodule in the isthmus measures 1.4 cm x 1.4 cm x 1.3 cm.
Impression Diffuse heterogeneity of the echogenicity of the thyroid gland with multiple solid nodules present, with a dominant nodule in the lower pole of the right lobe measuring 2.9 cm maximally, and the dominant nodule in the left lower pole measuring 4.2 cm. The findings are most consistent with multinodular goiter; however, malignancy cannot be excluded on the basis of this examination. Clinical correlation is recommended.
Unfortunately I think it's too late for me to request LDN prior to my total thyroidectomy tomorrow morning. If my nodules were only on one side, my MRI and biopsy were not changing and inconclusive, or I had more time (like 6 months ago) I would ask for a prescription. Perhaps post thyroidectomy I can ask? Maybe I have put this off too long? All I know is I really do not want to go through with this surgery tomorrow, but I think the results show I need to because they can not rule out malignancy.
Source Right Thyroid aspirate
History 2 solid thyroid nodules within the right and left lobes
Specimen 2 prepared slide, Thin-Prep
Interpretation both biopsies contain groups of bland follicular cells, with Hurthle cell neoplasm, a variable amount of colloid, and scattered histiocytes. Findings are consistent with colloid nodules.
Radiology: Ultrasound Head/Neck Soft Tissue (performed prior to FNA biopsy)
The thyroid gland is enlarged with the right lobe measuring 5.9 cm x 3.9 cm x 3.4 cm. The left lobe measures 6.4 cm x 3.3 cm x 2.4 cm. The isthmus is 1.8 cm is AP diameter.
There is diffuse heterogeneity of the echogenicity of the thyroid gland. In the mid/lower pole of the right lobe, the dominant, solid nodule measures 2.7 cm x 2.5 cm 2.9 cm in maximum diameter. There are three discrete solid appearing nodules demonstrated in the left lobe. That superiorly measures 9 mm x 8 mm x 7 mm, and that slightly more inferior, however, contiguous with the above nodule measures 1.5 cm x 1.4 cm x 1.4 cm. The largest nodule is in the lower pole measuring 4.2 cm x 3.3 cm x 3.1 cm maximum diameter. The dominant nodule in the isthmus measures 1.4 cm x 1.4 cm x 1.3 cm.
Impression Diffuse heterogeneity of the echogenicity of the thyroid gland with multiple solid nodules present, with a dominant nodule in the lower pole of the right lobe measuring 2.9 cm maximally, and the dominant nodule in the left lower pole measuring 4.2 cm. The findings are most consistent with multinodular goiter; however, malignancy cannot be excluded on the basis of this examination. Clinical correlation is recommended.
Unfortunately I think it's too late for me to request LDN prior to my total thyroidectomy tomorrow morning. If my nodules were only on one side, my MRI and biopsy were not changing and inconclusive, or I had more time (like 6 months ago) I would ask for a prescription. Perhaps post thyroidectomy I can ask? Maybe I have put this off too long? All I know is I really do not want to go through with this surgery tomorrow, but I think the results show I need to because they can not rule out malignancy.
You have to do what you feel is best of course. I also have a thyroid completely covered in nodules. My surgeon calls it warty. All I can suggest is do as much research as you possibly can and make reasonably sure you have considered all options. I would not ever consider a complete thyroidectomy unless I was 100% certain it was malignant. Your doctors cannot provide you with that diagnosis and the first link I provided you explains the Afirma thyroid analysis which allows doctors to determine whether there is a malignancy or not. If the Afirma analysis determined you did not have a malignancy, you could halt the progression of your Hashimoto's (and lupus) with LDN.
At the very least you might want to consider contacting one of the doctors familiar with this procedure since only 20-30% of inconclusive FNA biopsies turn out to actually be cancerous. That means 70-80% of those who have total thyroidectomies due to an inconclusive biopsy needlessly had their thyroid removed. I understand your doctor wants to cover all the bases, so to speak, but you will have to live with the results. Once the thyroid is gone, it is gone. You can't get it back. Just like it is important to do as much research as you can when deciding on what type of WLS to get, the same goes for the thyroid. There is no revision surgery once the thyroid is gone.
I only had a small part of my thyroid removed and I feel terrible. It has affected so many other parts of me that I was not expecting. My facial skin is so dry I have to saturate it with pure shea butter every night. Who uses 100% pure (organic and unrefined, of course) shea butter on their face? If I don't, my skin peels. Yes, it peels. It is ugly and prior to this surgery I had oily skin. I never had bowel problems (I am still pre-op) and now I have irritable bowel. Turns out there is a very strong connection between the gut and the thyroid. The mood swings - well, let me tell you, the parathyroid tumor was supposed to give me irritability and a not so charming personality but having a partial thyroidectomy has given me the worst mood swings and irritability I have ever encountered. PMS would be pleasant compared to this. One of the benefits of LDN is that it improves the mood so I am particularly looking forward to that.
Bottom line is that the decision is yours to make and so are the consequences. I truly understand the fear that a potential cancer diagnosis causes and waiting for the pathology report on the mass the surgeon removed from my thyroid was the longest wait of my life. I was terrified since cancer runs in my family. I am just so grateful that he did not remove the entire thyroid like so many other surgeons would have done. I hate the effects of the partial thyroidectomy and I don't even want to think about a total thyroidectomy which is why I researched Hashimoto's and fortunately found out about LDN. I am hopeful that it will reverse some of the symptoms I've developed and more importantly, prevent any future autoimmune diseases from developing. Good luck in whatever decision you make.
At the very least you might want to consider contacting one of the doctors familiar with this procedure since only 20-30% of inconclusive FNA biopsies turn out to actually be cancerous. That means 70-80% of those who have total thyroidectomies due to an inconclusive biopsy needlessly had their thyroid removed. I understand your doctor wants to cover all the bases, so to speak, but you will have to live with the results. Once the thyroid is gone, it is gone. You can't get it back. Just like it is important to do as much research as you can when deciding on what type of WLS to get, the same goes for the thyroid. There is no revision surgery once the thyroid is gone.
I only had a small part of my thyroid removed and I feel terrible. It has affected so many other parts of me that I was not expecting. My facial skin is so dry I have to saturate it with pure shea butter every night. Who uses 100% pure (organic and unrefined, of course) shea butter on their face? If I don't, my skin peels. Yes, it peels. It is ugly and prior to this surgery I had oily skin. I never had bowel problems (I am still pre-op) and now I have irritable bowel. Turns out there is a very strong connection between the gut and the thyroid. The mood swings - well, let me tell you, the parathyroid tumor was supposed to give me irritability and a not so charming personality but having a partial thyroidectomy has given me the worst mood swings and irritability I have ever encountered. PMS would be pleasant compared to this. One of the benefits of LDN is that it improves the mood so I am particularly looking forward to that.
Bottom line is that the decision is yours to make and so are the consequences. I truly understand the fear that a potential cancer diagnosis causes and waiting for the pathology report on the mass the surgeon removed from my thyroid was the longest wait of my life. I was terrified since cancer runs in my family. I am just so grateful that he did not remove the entire thyroid like so many other surgeons would have done. I hate the effects of the partial thyroidectomy and I don't even want to think about a total thyroidectomy which is why I researched Hashimoto's and fortunately found out about LDN. I am hopeful that it will reverse some of the symptoms I've developed and more importantly, prevent any future autoimmune diseases from developing. Good luck in whatever decision you make.
I just wanted to give a quick update. I had the surgery on Wednesday as planned. Apparently it was a good thing I had the total thyroidectomy afterall. The thyroid had began growing into my chest cavity. The surgeon/doctors never ordered an MRI of the chest so they were not aware of it until surgery.
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