Hi I'm new to this forum and really need some advice. My partner went through a large dose of chemotherapy and radiotherapy in 2011; for throat cancer. He became unwell after treatment had finished mainly with struggling for breath dry skin ;sickness; constipation ; loss of appetite . Luckily he has a stomach peg feeding tube so I was able to administer his dietary requirements via the tube which was ensures . He is not very active since treatment finished and very rarely leaves his bedroom he complains a lot of tiredness . He had his bloods taken quite a few times throughout 2011 and 2012 and the results according to his doctor was okay no problems was seen.his symptoms got worse especially the breathing so I requested the doctor have a look at him again as he clearly was not in good health. Around the last couple of months of 2012 another set of blood results came back this time saying that his thyroid was not working and treatment from the radiotherapy had destroyed it. He was started on a 50mg dose of levothyroxine . The difference of his over all health was amazing he began to feel hungry again his breathing improved. And he was becoming more active. After about 4_6 weeks he had another repeated blood test done to check his levels and surprisingly the doctor said that his thyroid still was not functioning properly and his dose of levothyroxine was increased to 100mg. This dose made him extremely sick. Bloated . Full of trapped air. Tired and constipated. On his check up appointment. At the hospital for the throat cancer they also took more blood tests as my partner was explaining to his consultant how I'll he felt and was fed up of being sick. These results came back again saying that his thyroid or the bit that drives the thyroid was still very low so again they raised his tablets to 125mg . This increase has completely knocked him around even worse then before the breathing difficulties has increased . His either feeling or being sick every morning this is often accompanied by extreme bouts of constipation and bloated stomach . And also extremely dry skin these side effects are still on going and its difficult now to administer any kind of liquid feed as its not moving round the body quick enough and just lying on his stomach and I imagine the build up of that is also adding to the sickness problem. I called out the dietrietion 2 weeks ago to discuss his feeds as they are very bulkey and I asked her to request forti juice rather then fibre ensures I then explained about his thyroid and his mobility problem. She did not want to change his ensures to the juice instead she changed the 200mg ensure fibre to the smaller ensures which is 125mg but with the same contents as of the 200mg which is now even worse. I have to push hard on the feeding syringe now to release the feed in to his feeding tube it's a very bulky liquid . The constipation is at its worse the sickness is never ending and his breathing is very bad. And now his latest blood results have again come back as showing that his levels are still not correct . The doctor stated that she would not want to increase his dose anymore as it would make him extremely poorly .I have also had to buy replacements liquid meals for him that are water based not milky with also all the added vitamins and amnio acids and minerals which I found a perfect protein build up meal replacement from Holland and barret . I no I shouldn't give him that but I'm scared about his weight loss and his immunity not being able to protect him if there was a return of that aweful illness . I'm at a loss here and running fast out of options . I have researched into everything to help him bring bis thyroid levels up and to improve his over all health can anyone suggest anything that could help please and is all those side effects normal to have whilst taking levothyroxine. Thank you to anyone in advance who can offer any kind of advise . I also do not have his recent blood results as our doctor just tells us . Thanks
It seems to me that a jump from 50mcg to 100mcg is a big jump, and then to raise it by another 25 mcg on top of that.
Considering your husband is ill I'm not sure what the correct thing to do. It does sound to me that they are paying more attention to lab results than what your husband is saying (very typical). I tend to think someone with a low metabolism due to illness or lingering effects of chemo might need to be treated a lot more gently than they are doing.
Remembering something I read: They are supposed to start older patients or patients with health issues off on much lower doses of thyroid meds. Like 25 mcg, then up slowly over a couple of months. And pay attention to signs that other things aren't keeping up.
Perhaps you should get a referral to an endocrinologist to give a second opinion.
I have recently stopped taking levothyroxine because of nasty side effects
I would reduce your husbands thyroxin back to the level he responded
positively to. Doctors are good but sometimes they go by results on
paper rather than the patient in front of them. Let your husband decide
what he puts into his body and empower him to gain some control back
into his life. He has nothing to loose and the doctors might learn to listen
more to their patients. He is lucky he has you to fight his corner for him.
What thyroid tests are being done on your partner? It sounds like they might only be doing TSH and are trying to adjust medications based on that. We see that a lot, especially in UK, with the NHS guidelines.
Please post whatever thyroid blood test results you have and be sure to include reference ranges, as those vary lab to lab and have to come from his own report.
It would seem that if your partner isn't digesting/metabolizing the Ensure (fiber typically helps with constipation not make it worse) that you're putting into his feeding tube, maybe he isn't metabolizing the thyroid medication, either.
Hi Crystal, I will leave the thyroid discussions to other members of this group, but I can talked extensively with you about the feeding tube. Here is my take on what you've mentioned here. Please clarify for me where I'm not understanding you, ok?
First of all the breathing problems. Is it a g-tube? j-tube? I'm very, very familiar with g-tubes, specifically Mik-key buttons. If it is a g/t of any sort, did your partner have a fundo at the time? If so, I'd guess a partial. Sometimes when g/t are placed, a fundoplication is also performed. That is an anti-reflux procedure that kind of ties the top of the stomach to the base of the esophagus in order to tighten the sphincter. For whatever reason, it isn't uncommon for placement of a g/t to compromise the integrity of sphincter necessitating a fundo to keep stomach content from refluxing back up.
If he is refluxing and also lying down a lot, he may be refluxing content and aspirating some into the airway and that may be causing the breathing difficulties. A swallow study can detect this as well as an upper GI to visually assess the site. Might consult with a pulmonologist about lung status. If he has had a fundo, perhaps it has loosened to some degree. Sometimes feeding too fast can overwhelm the gut and the site may loosen.
Bloating-sometimes feeding too fast causes this. Are you venting when he is bloated? That can certainly help. If you do so, be sure allow any stomach content to come up, let air out, and send content back down. If more comes up than the tube allows (are you using like a 2oz big syringe to send food down?), have a cup handy, dump the tube, let air come up, send back content. Even if it looks/smells gross, tossing it could cause an imbalance in electrolytes.
Food staying in stomach too long-a barium study could detect motility rate. If it is determined that he has dismotility, may prescribe med for this. Smaller, more frequent feeds will help too. Might try smaller feeds, like just 2oz at a time. I know it seems like you'll be feeding all the time, but it might really help. Worth a try. Might even consider pumping food overnight at a slow rate. That is what we did with my daughter, she took most of her liquid over an 8-12 hour period then either bolused during the day at regular mealtimes or sometimes we'd pump it over an hour. Helped tremendously.
Pushing the food in-An upper GI would be helpful. I'm wondering if there is granuloma blocking the stoma area on the inside. Scar tissue is a real you know what. If there is granuloma, that can be addressed if it is physically blocking the area.
Another reason push can be difficult-The tube can be clogged. Are you cleaning/checking/changing it regularly? I'm not sure how the peg is secured. Ours was a 5cc balloon which was easy to deflate, check, reinsert. There are different ways to clean clogged g/t if the tube is still a good tube. You might check that.
Constipation-lordy, lordy this is an issue, isn't it?! We could not use Pediasure with fiber. The fiber was just too much. It did not help with movement of stool through gut, but rather clogged it up. We were plagued with poop issues, megacolon, pain, awful! We used regular Pediasure. If you can't switch, keep this in mind, the Ensure with fiber alone won't unconstipate. I shouldn't say won't, as I am not a doctor, but I would stress it likely will not. In our experience, if a fairly immobile person is taking in lots of fiber, that person needs lots of extra water, not just the fluid of the meal replacement. You might ask about water in a pump overnight, say 16 or so ounces. Backing up again here, I'm assuming your partner is NPO, but probably isn't, right? If not, he could drink extra water throughout the day and lots of it. You might also ask about using some Ensure with and some without fiber. He would be getting some fiber, but not as much. Maybe you'll find the sweet spot. You could also ask the GI about adding Miralax to water supplements. That has been our magic bullet! You could also ask about adding MCT oil to the Ensure. Its a thick multichain triglyceride that supplies calories and because it is an oil, can help with constipation. I can't recall if it is OTC or Rx, but you might ask about it. If you use it, know that it caused our Mik-key to break down a little faster. Sending it down by itself cause even quicker breakdown so we mixed it with the Pediasure.
Medicine-as I said earlier, I can't add much to what has already been said except to suggest you give the med on an empty stomach and then not adding anything to the gut for an hour. Give that plenty of time get in the system.
How much exercise is your partner getting? How is his mental health? How are you doing as a caregiver? Are you guys getting out for walks? Smelling fresh air? Feeling sunshine on your face? Planting flowers? Setting up birdfeeders near a window for viewing? Having movie marathons? Playing games? Whatever it is you enjoy, I'd encourage you to ink that into your days. It sounds like you both have a lot going on. Take good care of yourselves as you tweak the healthcare plan. Good luck to you both.
Thank you to everyone for all your messages. Each one has been extremely helpful and has given me new methods to try. I totally agree with the comment about doctors and I must say if they had checked my partner when he first came to them he wouldn't be in the state he is now.He was attending every month sometimes 2_3 Times in that month complaining of weight loss then chronic cough. Then his voice went. It took them over 12 months to refer him to the hospital and by that time he was given 1_3 months to live if he didn't have treatment which he had to have all his teeth extracted . A trachyostomy and this feeding tube. Though I can't grumble about the feeding tube it did save his life. His feeding tube is a g tube , but he is not fed by the machine I do it manually with 60 mil syringes at present I'm feeding 25mil of ensure and 25 mil of water every half hour.his calorie intake is worked out to 2,400 per day and I find this very hard especially when the sickness and bloating is present that is a very good comment about extracting the wind I was not aware I could do that,though when I open the end to feed him sometimes a lot of air comes out but not enough. I do clean it daily and apply meflex dressing to the site and I change the bubble once a week that holds the tube in place it's a 5 mil change. You are very knowledgeable in the feeding tube it's good to speak to someone who has experienced similar problems . I was literally taught by a Macmillan nurse within 20 min how to change and clean trachyostomy tube. How to use the suction machine to extract gung out of the throat and chest.and how to use the nebulizer . Apply the dressings and how to administer feeds through his stomach g tube. Yes it was a shock to the system but I new I had to do it and do it properly, I don't have his most recent blood tests but I will put the past few on as soon as I scan them on to my computer , from what I have worked out by listening to the doctors is the T S H that drives the thyroid is not functioning properly, I'm also wondering how long the levothyroxine stays in the system as he takes these around 11am after his stomach has settled and he also takes simavastine about 9pm I'm sure that these react with each other. The doctor has also put him on some more tablets now for dissolving trapped gases in his stomach . As for the question how Mobil my partner is the answer to that is not very Mobil at all . We haven't been out properly now since I left work to become his full time carer in 2011, I was very thankful at that time for the use of on line shopping as I could not leave him for long periods at a time. It's funny out of all the work I have done in my life this has been the hardest of them all, but also very rewarding when all your hard work finally starts to pay off. I am the most grateful person in the world and all those little sacrifices I gave up to care for him is nothing compared to positive outcomes. Thanks to you all once again x
Crystal, I am likewise, knowledgeable with trachs, whether air/foam/water cuffed. I almost asked about trach because very often, someone trached is also pegged. Please ask anything and I will try to help. My beloved child was trached/pegged for 12 years. Perhaps I can be of support to you. Why is your partner trached/pegged? Surely not for thyroid issues alone? Please be well.
Hi Courtney thank you for your reply .He had to have the trachyostomy because of swelling in throat from treatment of cancer, since having the trachyostomy taken out did you find that the hole takes forever to close, and the slightest cough or wrench the hole blows straight back open again, I'm hoping on his next hospital visit they could recommend something other then surgery to close it completely , hope you don't mind me asking what your daughter had trachyostomy in for and peg tube hopefully it was not what my partner had. Even with saying that I watched my partner who is only middle aged live with that device for over 1 year,one stage I was told it might have been permanent thankfully that was not the case,but isn't it horrible to watch a grown man or women having to struggle with it, I just can't imagine how you or your family coped with such a young person going through the same thing, another thing we was told before he was diagnosed after one of those lung tests that he had C O P D would it be possible do you think that accurate readings would have been effected by the tumour as it was half way across his airway and may be he does not have COPD at all,fair play to you though Courtney how you coped mentally and physically for 12 years I don't no, I found the physical side not to bad as it did get easier as time went on it was the mental side I really struggled with and still do, slightest cough or any kind of sickness I was panicking in case it had came back and moved to another area in his body I got so panicked I was looking constantly for changes in him like skin colour .weight loss . Skin appearance I now understand why they say cancer is a long journey many of times especially like the other day when he was sick and couldn't tolerate any liquids I really felt like giving in I was exhausting my self mentally thinking what else to try as nothing has worked but then another part of me says what if something happened now that could have been prevented if you had not given in that's what keeps pushing me on everyday as I don't want regrets over what if,, why did I do that ,,I should have ,,, yes it's a very long journey , did your daughter ever get infections from the constant constipation I have a feeling that my partner may have one across the tube site as it looks quite swollen but when I contact the doctor I need to be prepared to ask the right questions other wise they would throw any prescription at him. If there was an infection would it be bacterial or fungus I would guess fungus but what do you think.
Thanks Gibson 1 for your reply I to would have thought they would be a little bit more sensitive especially with these on going problems. When his levothyroxine was raised for the second time to 100 mg and the side effects was really bad I took my partner back to the doctors to make sure what he was going through was normal for that medicine our doctors reply was the tablet does not cause sickness or constipation it must be all the other tablets he takes . I said you mean the other tablets that you prescribe him like vitamins , carbamazapin for seizures . Rantadine in which I stopped because it caused a reaction with another tablet he took off you .and his tablet for cholesterol , or are you referring to his break through pain relief that is not taken daily, over the past few years especially since my partner took bad I have took more interest in the level of care he receives as I don't want any mistakes made regarding his health , I attend every hospital and doctors appointments with him and if I'm not sure of something and I don't get a straight answer I come on to sites like here and get help off friendly people like yourself who has either been through it or no someone who's going through it, it's all you people that share your knowledge that keeps me motivated and knowledgeable x
Stomas do sometimes close on their own, but in our case, it was quite patent since it was accessed for so many years. When we decannulated, we scheduled surgery to close the site. The scar is so faint and the tissue is flat so one can hardly tell there was a trach. If your partner has been trached for a year or more and if the site was well healed, few infections at the site, it may be more difficult for it to heal on its own. Do you just leave it open? I wonder if using a medical tape of some sort to cover it would allow the area to heal and not be compromised by the force of coughing? Tegaderm or something like that?
I don't know anything about COPD except that it is a chronic lung condition. I do know this about lung tissue though, we are born with X number of lung cells. Once they are damaged, those cells are damaged. My little one had lung problems from the beginning (born with a congenital disability) and some lung tissue was damage/scarred. Over the years though, she kind of outgrew the scarring and here is why. As a baby, the lung cells are small. If they are damaged and the reason for damage is addressed, the cells no longer continue scarring. As a baby grows and the size of the lung cells grow too, the new, bigger size is not completely damaged any more, just the original scarred area. As a the child grows, the ratio of damaged vs. undamaged tissue is opposite. Where as a baby there was more damaged tissue, there is not more healthy tissue. In the case of an adult whose lung cells have fully developed, if a lot of the tissue is damaged/scarred, there is less hope that the scales will tip the other direction. In that case, a person would have a degree of lung function compromise and that may be what your partner has. I hope I'm saying this in a way that makes sense. Something else about your partner's lung status that may improve is the fact that once the stoma closes, he will have much greater positive lung pressure and will be able to cough/clear secretions much better. His dx of COPD may not change, but how he is able to function may improve.
My experience with g/t infection is thankfully very little. It was only the very last month having the g/t that we saw infection at the site. I believe it was yeast, very red, irritated looking. We tried to take out the g/t and not surgically close it. That did not work. Stomach content leaked, burned the skin, then the infection. After about three, four weeks of that, we went to the OR to close it. An infection I have seen on another young person was strep at the site. That was awful! The area was about four inches in diameter, red, bleeding, pus. As far as constipation causing infections, we never had that.
I agree with you that the physical aspect of caring for a person can be learned. The mental/emotional toll is high. I understand what you are saying about wanting to do everything you can so you know that you've done enough. I would say to you though, that you must absolutely take care of yourself. You have to have a little distance sometimes so you can check yourself. Also, by taking care of yourself, your partner sees that you are ok. It can also bring a sense of normalcy to a difficult situation. Its also tricky once things stabilize and even improve to not have that knee-jerk reaction every time our loved one coughs or doesn't feel well. We kind of go into auto-pilot and start triage when really its normal to cough or clear our throats; it doesn't at all mean we are dying. Its hard to dial it back a bit.
Wow, I think that you chrystal161 are an Amazing, Wonderful Lady... I have had My own oroblems with Levothroxine & Side effects. But I do know that I had an (my dr words) Abnormally" underactive Thyroid gland. When I was finally diagnosed. When I was startes on Levothroxine I was given 50mg. The next day I was Shaking, dizzy, strong palpitations, kept having memory lapses (completly confused), hot+cold flashes, Dry reaching/sick. I am on meds for Depression & anxiety, (I suffer with anxiety problems).
But I was told "I MUST TAKE LEVOTHROXINE" or I would be as ill as before diagnosis. So I Continued taking 50mg untill I could see a doctor. 8days later (Dr appt) I was nearly at the end of my teather as My Sleep was Non existant, but I was exausted... My Doctor immediatly told me to STOP taking Levothroxine ug for5days & Re-start again at 25mg. untill after my next bloods were back...
My symptoms eased off (Not Completly), but more managable. I get my bloods taken every 3-4mts. I am told that My Thyroid is "Showing an improvement", but Still very Low. So over the last 12mts I have had My Levothroxine put up to 100mg, at 25mg rises. I Noticed the side effects (I stated) but on alower level for abt 5-7 days. After each increase. So I thing that 50mg jump your partner was given was Harsh. Each time I have had any changes on my Levothroxine. It seems to be 5-7 days of Crazyness before I feel any Benefit from medication...
Im probley of No use to what you are trying to resolve ?? But I thaught My personal "LEVOTHROXINE" issues might help ??
Your Partner is So Lucky to have an Amazing Person like you to Love & Care for them. Your an Insperation... Kindest Regards :) xxx.
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