Before you take that PEG out I would go 2 weeks with out using it. Having it put back in is much worst than having it a few extra days. How is his weight? Good luck on the dilation.

John's RO told him that he would have to be taking all his supplement by mouth AND gain weight before he could have his PEG taken out.

We have just been told today that John will go in for a gastrocopy next week to determine exactly what the problem is with his swallowing. At that point, I suppose they will consider what the next step should be, maybe putting in a stent and dilation. We will have to see. I am glad that he will be in the care of the gastroenterologist for this part of his treatment since the surgical oncologist flatly refused to consider a dilation.

In the meantime, John has been told by his GP that he now has low thyroid and he has developed severe sleep apnea. It has been a lot of doctors' appointments for us the last few weeks. In the midst of all that, his feeding tube sprang a leak and we had to have it fixed. Never a dull moment.

My gastro doc told me he wanted me to go for one full month without using my peg before he would even consider removing it. I know having a feeding tube is no fun at all but it does serve its purpose. Its much better to go slow with removing it than push to have it out only to find out how much depends on it. If meds are being given by peg then also consider how that will be done once the tube is gone. Start taking meds by mouth to ensure it can be done. Also remember a minimum of 48 oz per day of water? Is that something that can be accomplished every single day? If its not then dont rush to have the feeding tube removed. Dehydration can sneak up on you so quickly and land the patient right in the hospital. It happened to me so thats why Im trying to make sure all angles are considered with the peg removal.

Best wishes!

Good points to remember. Thanks, Christine.

Gloria - glad to hear that you have finally have the GI appointment. Hopefully they will find that whatever is going on and can address/resolve it so John can move forward. I think of him/you often; please keep us posted.

Pamela - Dilations are 'out-patient' procedures but typically requires general anesthesia. I am interested to know what the ENT saw that brought up the dilation. Is there a blockage or stricture? I've recently had 2 dilations due to strictures and it has improved what I can take by mouth so I am very glad I had it done. However, I still use my PEG about every other day or so as I find my weight dropping without the PEG supplement and it is still difficult to eat large portions of food. It is hard to eat enough food throughout the day to match the PEG calories; I'm working on it but food has so much less appeal than it used to. As anxious as I am to have the PEG taken out, I want to be sure I don't have it removed too early and slide backwards in my recovery. I also use it from time to time for water/hydration as well to cover Christine's point. I am happy to answer any questions you have.

Many of us, including me, developed Hypothyroidism from the treatment radiation damage to the Thyroid. Taking a pill a day of Synthroid or it's generic will solve the symptoms caused by that. Problem is determining what his proper dose should be as there is a WIDE range of what's considered normal and apparently what may be a normal level of TSH for me may not be normal for another. That's why we try and tell everyone about to get radiation to the neck to record their pre Tx TSH and keep it just in case.

Luckily for us, John's family doctor has a record of his thyroid level from his annual physical.

That's great. It will be interesting to hear what his doc's say about trying to duplicate his pre Tx TSH levels post Tx and if they do, what his response is. We always tell people to record that pre Tx TSH number but I don't recall anyone ever telling us "it worked". Another thing to consider is that post Tx it's near impossible to remember what "Normal" felt like to compare post Tx to.

I suffered from hyperthyroidism myself and had to have ablation (i.e. the doctor gave me the radioiodine pill to kill off the thyroid). In my case, however, a small part of the thyroid has continued to work. So, I have to take thyroxine -- very small doses of it -- 0.05mg four times a week and 0.075 mg three times a week. My years of going to the endocrinologist tell me that it is a matter of trial and error until one can stay in the normal range. When my thyroid level was high, I felt anxious, wired and lost weight very quickly. If the thyroid level is low (which I have not experienced too much of), one tends to feel tired in the late afternoon and one puts on weight. Low thyroid levels can also impact one's cholesterol level.

Davidcpa, I know I have not really answered your question, but adjusting the dosage when needed is how my doctor has dealt with it. The level does seem to fluctuate.

I agree that trial and error is involved in getting the patient into the "normal" range but my point is that normal range is very broad so one could test normal at the very low end or at the very high end of the normal range but many feel that we are best normal when our TSH levels post Tx are close to what they were pre Tx.