LDN refief but wait....a new problem

DebE13 · Post by **DebE13** » Mon Dec 28, 2015 9:18 pm

Well the LDN was an instant success. Most of the muscle pains and joint pains improved overnight. Yay me! The relief was something I desperately needed. After three days, I had a couple of bad days and I thought maybe it was a fluke that it helped but it passed and it seems to be doing more good than bad. I am now about two and a half weeks into taking 3 mg and the past couple days have been horrible as far as my thyroid meds are concerned. I'm having the same feelings I had right after my thyroidectomy - the feeling like I'm going to crawl out of my own skin and that I'm going nuts. I hate to bring that up to my endo again but made the call to have my labs done. I was scheduled to have them done next week so it wasn't a big deal. I've been having chest cramping ??? I don't know how to explain it but it's not chest pains (because I think of a heart attack) and it's not fluttering or anything like that. It's maybe tight (but again I think of a heart attack and that's not it- at least I think so

). My heartbeat has been strong at times and when I check it on the BP cuff it says 80-90 at various checks. I'm usually at 70. I don't want to make a big deal out of nothing because it's the same feeling when my meds were off in the beginning. But it is a bid deal because I feel really out of it.

I did read that LDN can boost the immune system and thyroid patients may need to monitor their meds and make adjustments. It was also recommened to start at a 1.5 mg dose which I stumbled across after I already was on 3 mg. I haven't noticed any side effects so far. I was waiting for the vivid dreams and have only experienced better sleep. I finally put two and two together after my husband kept asking what was wrong with me. At first I thought it was just the holidays. Christmas is not an enjoyable time of year for me so I thought it was just moodiness because of the holidays.

I actually skipped my afternoon dose of T3 today, which may not have been the best choice but since I had labs done after work I was already late in taking it. I take it at 1 pm and my labs were at 2:45 so I wait to take it until after my blood is drawn since the timing is so close. I'm afraid my endo will want to cut out my afternoon dose as a solution which I don't want to do. I guess I will have to wait and see what my numbers are first. I fought so hard to have the split dose...... Sigh.

I meet with my PCP on Friday to check in. I'm her first patient she has used LDN for myalgia reasons. The plan was to bump up the LDN to 4.5 mg but I'm wondering if that will be too much? I seem to be sitting on a threshold of it not being enough. Not all the muscle and joint pains have resolved or they seem to lightly linger. I was thinking a higher dose may be worth a try but now I'm a bit worried about my thyroid meds. What a roller coaster. I seem to be switching rides and bouncing back and forth between issues.

I definitely want to stay on the LDN. I agreed to see the rheumatologist at the end of January but if my pains have improved, what can be accomplished through that visit? At this point, I don't really care what you want to name it- lupus, mixed connective tissue disorder, fibromyalgia..... The LDN is working and I'm good with that. That may not be the best attitude but I'm not sure how the visit will play out or a dx can be made if I'm not complaining of any pain. I actually still have pains but it's back to a tolerable level and I didn't think it fair to expect it all to go away.

So again, I feel like a basket case of mixed woes. It is a reminder that things can always get worse. I haven't noticed any improvements with my MC. Maybe a few less trips to the bathroom but nothing I can directly relate to the LDN. Maybe once I've been on it longer ? My MC has been pushed to the back burner for quite a while.

Post by **tex** » Mon Dec 28, 2015 10:14 pm

Deb,

It appears that the LDN is increasing the effectiveness of your thyroid supplements. The symptoms you describe, including the elevated heart rate, and being aware of a noticeably stronger heartbeat, are symptoms of hyperthyroidism (or in your case, overtreated hypothyroidism because of the LDN). It can resemble a panic attack. You will also probably notice your weight declining, without any diet changes, because this condition boosts metabolism.

I've experienced those symptoms, so I can understand how you feel. In my case though, I would typically wake up during the wee hours of the morning, and find it very difficult to get back to sleep.

Tex

Deb · Post by **Deb** » Tue Dec 29, 2015 5:18 am

Deb, here is some further info on LDN and thyroid meds. I had to reduce my NDT when I started on LDN. http://www.stopthethyroidmadness.com/ldn/

Marcia K · Post by **Marcia K** » Tue Dec 29, 2015 9:18 pm

Deb, Are you on Facebook? There is a LDN group on there. I don't take it, but I have seen their posts. I hope you find answers to your issues.

brandy · Post by **brandy** » Wed Dec 30, 2015 8:24 am

Hi Deb13,

You are doing a great job working through things. Perhaps push your rheumatologist appointment back 8 weeks and reevaluate depending on how you are doing.

Brandy

Post by **tex** » Wed Dec 30, 2015 11:37 am

If you are going to stick with the LDN for a while, a visit with a rheumatologist at the end of January (before you have been able to reach a state of homeostasis with the LDN) would accomplish little, and might jeopardize your chances of having a productive appointment later if you still need an appointment at that point.

Tex

DebE13 · Post by **DebE13** » Thu Dec 31, 2015 5:59 pm

Tex, I'm still waiting for some input from my endo. I had my labs done but it appears he only tested for TSH but I am giving him the benefit of the doubt and assuming the free T3 and free T4 labs aren't in yet due to the holidays. My TSH has taken a jump to 1.47 uIU/ml (low 0.35, high 4.50) compared to my October labs at 1 uIU/ml which were the follow-up after I started taking liothyronine this summer. He most certainly will not like the jump and I hope he realizes the correlation to LDN. We are currently on shakey ground since he dismissed my request to switch to Tyrosint to see if that would be a change for the better.

Since I will need an adjustment to my meds, is it reasonable to expect the levothyroxine dose to be decreased instead of the liothyronine? I currently take 100 mcg of generic synthroid and 10 mcg of generic cytomel (split dose in AM and afternoon) daily.

I still wake up about 2:30 AM every morning but don't have a problem getting back to sleep. I still wake often throughout the night but my sleep seems more restful since I started the LDN. I still have pains but it is back to what seems to be the norm for me and I am functional. I had a follow-up visit with my PCP today and we decided to keep my dose at 3 mg daily for now. I am undecided at this point if I should try the 4.5 mg dose to see if more of my pain would be controlled or if it would be too much. I've only been taking it for three weeks now so there is plenty of time to try a stronger dose. I'm just not sure if it is needed or not.

I was surprised to get a "thank you" from my PCP. She said this was something that she would not have considered but since I did my own research, she was willing to give it a try. I am hopeful that she has other patients in mind that may benefit from the use of LDN. Of course, I had to pass on the credit to everyone here. She seemed very interested in MC and the other AI issues that go with it.

The panicky feelings I have are very annoying since that is not me. I keep feeling like I'm right on the edge and going to loose it. It's odd how the feelings are very strong but in the back of my mind I have a voice telling me this is just stupid and to knock it off but I can't. To try to explain it to someone who has never experienced it is almost impossible.

Deb, Thanks for the link to the Stop the Thyroid Madness. I did stumble across this one when I was researching the topic. It is a great resource! I wish I could find a doc who would allow me to try NDT.

Thanks for the FB suggestion Marcia. It is on my list of things to do. Sadly, my productivity has declined and it seems to take forever to get everyday stuff done. Today I was running errands and realized I had not paid our property taxes yet and today is the 31st. I was totally disgusted with myself because I NEVER forget things or get behind. I find this fog that surrounds me to be problem that I need to eliminate.

Brandy and Tex- thank you for that suggestion. I hadn't thought much about it and am going to push the appointment back a bit since I will be falling within the six week mark with LDN when I have the appointment. I'd also like to see how I feel after my thyroid meds are adjusted too. I have one set of aches and pains pretty much under control but now am dealing with hyper/hypo symptoms again so am feeling quite miserable- just in a different way. I made the appointment as a sign of goodwill with my PCP since she was willing to let me try the LDN. I'm still not convinced this appointment will be that productive. My ANA(HEp-2) did come back positive at 1:80 but it doesn't seem that reliable. I'm not too familiar with its implications but it was made clear that it is at the very low end of positive (almost like it was normal- although you all know my opinions on normal, haha) My creatine kinase came back within normal ranges too which is great but doesn't explain the whole-body muscle pain I was experiencing.

One step at a time..........

Post by **tex** » Thu Dec 31, 2015 8:28 pm

Deb,

Did you do the blood draw for the thyroid lab tests at a different time of day this time (relative to the times that you take your thyroid supplements)? The reason I ask is because an increase in the TSH indicates a need for more thyroxine, not less. But your result wasn't high enough to indicate a need for more hormone supplement. Instead it just indicates that there's no reason to reduce your treatment. Maybe that result was just a fluke — sometimes results can be out of line for no known reason. But whatever the case, it went in the wrong direction (and it's way too high) for someone who is supposedly experiencing hyperthyroid symptoms.

Both hypothyroidism and hyperthyroidism can cause muscle issues. In general, hypothyroidism is much more likely to cause muscle aches and pain than hyperthyroidism. Hyperthyroidism is less likely to cause muscle pain, but it can cause what is known as muscle-wasting. When muscles are affected by thyroid issues, the target muscles are usually those known as the proximal muscles, such as in the thigh and shoulder area, that are closest to the main part of the body. The distal muscles (which would be less likely to be affected) are located in the forearms, hands, lower legs, and feet.

l still wonder if your muscle pain may have been caused by insufficient thyroid supplement. Maybe the LDN is reducing the pain simply because it makes your thyroid supplements more effective. But thyroid surgery throws a monkey wrench into your HPT axis feedback system, and the LDN may be affecting it in unpredictable ways.

IOW, if your recent TSH test is correct, you should not be having hyperthyroid symptoms, but obviously you are. It would definitely be helpful to know your Free T3 and Free T4 results. I hope he ordered those tests.

But thinking about this, since you no longer have a thyroid gland, I'm not sure that LDN should even have any affect (on thyroid issues). The question is, "Does LDN make the thyroid perform more effectively, or does it enhance the effectiveness of thyroid hormones (T3, T4, etc.)?"
If LDN makes the thyroid perform more effectively then it shouldn't have any effect if the thyroid gland has been surgically removed. But if it works by making thyroid hormones more effective (regardless of whether or not the thyroid gland is intact), then it could definitely cause hyperthyroid symptoms. Now I'm wondering if there is any information available on cases where LDN was used by patients who have no thyroid gland. IOW, are you aware of anyone else who started using LDN after a thyroidectomy?

Tex

DebE13 · Post by **DebE13** » Fri Jan 01, 2016 6:47 am

I used to get my labs done in the morning before I took my pills but when I started my new job about a year ago I had to switch and have my labs drawn after work, always around 3 PM. I take my morning pills at 7 AM and then my afternoon dose of liothyronine at 1 PM. On lab days, I wait until after I have my labs drawn to take it. It may be a bit late in the afternoon but I didn't want the results to be skewed taking it so close to when my blood is drawn. So really, nothing has changed as far as when I get them done.

I'm not sure what the target TSH level is for other thyroid patients who have had cancer but I believe my endo is satisfied if mine is around one. He seems less concerned about the supression, in my case, since I had microcarcinomas that were totally encapsulated with no lymph node involvement. I had no RAI or follow up treatment for the cancer since my TT aside from the ultrasounds. I still don't see any results from my Dec 28th labs for free T3 and free T4 which I find very frustrating. He just did TSH and thyroglobuln tumor marker & TA-TG. I haven't heard from his office yet.

After a long battle and getting a second opinion with a recommendation for a split dose of liothyronine, my endo reluctantly agreed to allow it. The March labs are prior to the addition of the generic cytomel and the Sept & Oct labs are follow up. There is improvement but I continued to complain of fatigue and what I believe are thyroid treatment issues. I told him that I would like my free T3 numbers to be closer to the higher range of normal to see how I feel before I started investigating other causes. No changes were allowed.

March: Free T3 = 2.2 pg/mL (low 2.3, high 4.2)
Sept: 2.8
Oct: 2.8

March: Free T4 = 1.3 ng/dL (low 0.9, high 1.8)
Sept: 1.1
Oct: 1.1

I've always complained of muscle pain since my TT but it became increasingly unbearable the past few months and changed into something new. Literally, every muscle in my body hurt along with my joints to the point I was worried about being able to work. The neck and shoulder pains have been regular since my TT but the distal muscle pain have become more frequent. I was having quirky foot and toe pains that were quite severe and pains in my arms that made me feel like I had just done a strenuous work out. Of course, I try to factor in some wiggle room for job-related causes since I do heavy lifting and am on the move all day long. However, I don't think this should really come into play at this point because I've been doing it for so long that my muscles are back to pre-office/desk job days. So it's a hodge-podge of pains.

There was a cautionary warning I came across after I started the 3 mg dose that came from the lowdosenaltrexone.org website that stated:

"2. Those patients who are taking thyroid supplement replacement for a diagnosis of Hashimoto's thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism."

I asked similar questions on the ThyCa support group website and only had a few responses confirming that my meds may need to be adjusted.

Post by **tex** » Fri Jan 01, 2016 11:44 am

Deb wrote:"2. Those patients who are taking thyroid supplement replacement for a diagnosis of Hashimoto's thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism."

I asked similar questions on the ThyCa support group website and only had a few responses confirming that my meds may need to be adjusted.

Theoretically, I cannot have MC, because I no longer have a colon. Likewise (theoretically at least), since you no longer have a thyroid, your immune system cannot produce antibodies against it. You would have to have at least part of your thyroid intact in order to have Hashimoto's. Your immune system cannot produce antibodies to an organ that is no longer in your body.

But the problem with theory is that sometimes it gets trumped by real world events. Virtually no issue is as distinct as some people would have us believe. There are always gray areas that fall outside the "official" description. I still have most of the symptoms of MC if I slip up on my diet, so obviously the disease is incorrectly described. Likewise, the full spectrum of effects of a thyroidectomy is not fully understood, which implies that it may be misunderstood.

Thyroid hormone receptors are found in all tissues, and they are especially concentrated in cardiac and skeletal muscles. That's why heart rate is so dependent on proper thyroid hormone levels, and it's why thyroid hormone issues can cause muscle and joint pains.

I can't pinpoint the problem, and I can understand your endo's dilemma (because your lab test results look good), but I believe that something is definitely wrong with your treatment (that's obvious by your symptoms). And in order to correct the problem, the physician in charge is going to have to mostly ignore your lab results and treat according to symptoms (and responses to treatment changes). This is what doctors did back in the good old days, before the TSH test was developed. The adoption of that test marked the end of complete symptom relief for many patients.

But trying to iron out thyroid treatment issues while you are taking naltrexone is a very different problem, and it will surely be rather tricky, at best, because it adds a whole new dimension of complexity to LDN treatment.

Tex

DebE13 · Post by **DebE13** » Sun Jan 03, 2016 10:21 am

Well, crap! I'm not sure my endo will be up for the challenge. I had my labs drawn on tge 28th and I still haven't heard from their office, although we have the holiday and weekend sandwiched in between so that is part of the delay. This is the first time he checked TSH only.

I will have to message him today and get a call tommorow.

Yesterday was pretty bad and today is following suit. My heartrate is going between 80-98 beats/minute which, for me, is very disturbing and quite uncomfortable. My normal rate is somewhere around 65-74/ minute. I skipped one 50mcg levothyroxine pill this morning because the thought of taking my pills makes me cringe. I don't like doing that either because I have no clue what I should be doing and know it's not a good idea to guess......but I did anyway. It didn't help because my heart rate is back up to the uncomfortable. My husband wants me to go get checked out but I don't see what they can do. I just have to wait until I get a new dose.

The LDN has been incredible so far and I have noticed a slight improvement in my MC which I am hesitant to mention because nothing ever seems to work. I haven't taken any entocort since the 23rd and am tempted to see if I can discontinue entirely. I read steriods should be avoided on LDN since it supresses the immune system and LDN works at boosting it. I'm not sure if the extreme low dose that I take makes that much of a difference but it's still a steriod. Although, I am afraid that if I can go off it may not work if I need to take it again.

It's a double edged sword. Sigh.

Post by **tex** » Sun Jan 03, 2016 11:34 am

Deb,

It can take a few days for a treatment change to start making noticeable changes in symptoms.

Tex

DebE13 · Post by **DebE13** » Tue Jan 05, 2016 10:57 am

Just got off the phone with the nurse, our third conversation and still no recommendation. It seems mentioning the LDN means nothing. He is looking at my TSH only and left a note for a nurse to call to see if I want to increase the levothyroxine. It's my choice, if I'm having no symptoms then my meds can stay the same.?? Is no one listening to me?

Does an increase seem right? Will my heart rate go back to normal with more?

JFR · Post by **JFR** » Tue Jan 05, 2016 11:32 am

DebE13 wrote:Just got off the phone with the nurse, our third conversation and still no recommendation. It seems mentioning the LDN means nothing. He is looking at my TSH only and left a note for a nurse to call to see if I want to increase the levothyroxine. It's my choice, if I'm having no symptoms then my meds can stay the same.?? Is no one listening to me?

Does an increase seem right? Will my heart rate go back to normal with more?

It's probably not that they're not listening but rather that their hearing is selective. If what you say does not fit into their paradigm it is ignored. It reminds me of the old Belushi Ackroyd cheeseburger routine on SNL. No matter what people ordered all they could get was a cheeseburger. I know this doesn't help but unfortunately, as we all well know, if we don't fit the medical paradigm we're pretty much invisible.

Jean

DebE13 · Post by **DebE13** » Tue Jan 05, 2016 11:49 am

I've seen that skit..... Thanks for making me laugh. My patience has worn thin and since he failed to test my free T3 and free T4, I am quite frustrated.

Well, now I'm thoroughly confused. Apparently my endo saw my labs from Dec 28th and made the note that he would suggest increasing my levothyroxine slightly (based on my TSH labs alone) if I was having symptoms. If I was not, then no change would be required. No one ever contacted me about that. Now that the LDN has entered the picture no change will be allowed until the cause of my chest pains and increased heart rate is figured out by my PCP.

Well, what symptoms would that be? I am having plenty of them right now.......

The nurse read me his response since they were communicating via email since he was working at a different location today. I could not retain most of it and remember comments that something was a moot point autoimmune related because I have no thyroid. (Maybe what you were referring to, Tex?) He was opposed to the LDN because there is little known about it and that he won't change my meds. I asked the nurse to send me what he wrote because I needed to see it to fully understand what he was saying. She said she would try but didn't know how through their messaging system and wouldn't take my email address (copy/paste..... easy-peasey). Must not have worked because I have nothing to refer to.

My PCP was out of the office today. My endo's nurse called my PCP's nurse and I guess my two doctors need to have a talk tomorrow and they will get back to me. I need to message my PCP tonight to give her my take on the situation because I am less than pleased. Over the past week I have skipped one of my liothyronine pills and two of my levothyroxine pills, all on different days because I was dreading taking them. Not cool in my book but it has lessened the pounding in my chest although there is still an uncomfortable feeling. I'm sure the added stress on it is doing me no good. My endo's nurse called me back to give me an update that I will hear more tomorrow and commented that I am only going to be on the LDN until I see the rheumatologist at the end of the month.

I did the big HUH? but then decided to not get my undies in a bundle because I just had a conversation last week with my PCP during our office visit and I have another refill left and she agreed the next one would be a three month at once so I could get the better deal under my co-pay. Our only hang up was waiting on the dose and if it would stay at 3 mg or go up to 4.5 mg in time. She wants me to see the rheumatologist as a second set of eyes on my situation. I don't believe I misunderstood her intent as she was very please that I was finally finding some relief. I made it clear to my endo's nurse that I have no intention of taking Humira or other drugs of that nature when the LDN already works for me. Again, it didn't pay to get riled up because I'm sure she has no clue and no interest.

So now what????

I called the compounding pharmacy and had a chat with the pharmacist. We were on the phone for twenty minutes talking LDN. She only recalled one other person on LDN that had thyroid issues and is taking Armour. She did not experience any problems. Most of the 80 people they deal with use LDN for pain management. She also does not recall anyone complaining of increased heart rate or chest discomfort as a side effect. She said so far, the only side effect reported was sleep disturbance and they aren't sure if the LDN was the cause. She gave me the name of the doctor who uses Armour. He is not an endo but internal medicine. I called and made an appointment for a second opinion. BUT, I can't get in until the middle of February. sigh. Not sure if I will keep it but for now, it's on the books. I cannot stay with my current endo. I've known it all along but now I'm really stuck. I don't want to go off the LDN- it's working and I'm feeling chipper despite the other issues. My endo is an NDT and cytomel hater so it seems anything remotely "alternative" is something to be dismissed

My second choice is to contact the endo that I saw in July that is 2 1/2 hours from home and ask her if her offer is still on the table. If she is willing to be my endo and consult with my PCP for the treatment of my thyroid. That would be an option if my PCP is also agreeable. I'm not sure what will come out of her conversation with my endo tomorrow but I am not going to spend my money and time getting a cardio work up for this. Am I being unreasonable?

I may very well end up in the looney bin. Both options have their drawbacks but I seem to be up against a wall.

Any thoughts on the situation? I really can't tell if I'm being unreasonable or not.