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Deb wrote:Does an increase seem right? Will my heart rate go back to normal with more?
No, that's what I predicted he would say in my third post in this thread. But an increased dose will make your heart rate go up, not down.
If you are going to continue to use the LDN, you apparently will need to lower your thyroid treatment dose, because the symptoms you describe are hyperthyroidism symptoms (or symptoms of over-treated hypothyroidism). Too much thyroid hormone can also cause heart palpitations, heart pounding, etc. None of those cardiac symptoms are good for your health.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
My PCP said she'd be willing to partner up with the endo I met with this summer. I messaged her and asked if the offer was still on the table. In the meantime, my PCP wants lab work and an EKG done with a 48hour monitoring.
Does it pay to do that before seeing if dropping my meds would work? Or a good precautionary measure to rule out any actual cardiac problems (never had any, ever). Or will it just be skewed?
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Well, it's probably the meds, but if your PCP wants to see the labs, then it's best to stay on her good side if you want her to take charge of your thyroid treatment responsibilities in partnership with your "summer" endo.
And it may be a good idea just to make sure that there aren't any real cardiac problems. Yes, the results will probably be somewhat skewed, but they should still provide useful information about the health of your heart.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, would it be really stupid to skip my thyroid meds today? I know you are not a doctor and all my choices are my own but i value your experience and opinion. The timing of everything has been unfortunate. My "summer" endo has become my full time endo. I will have to sort out insurance and coordination expectations later. I'm not sure how my new endo will view the situation since my TSH is indicating the opposite of what I'm requesting. She did say since i started a new med she wants current readings. I thought that was what i was doing on the 28th so now I will most likely need to get current free T3 and free T4 labs today, so the results won't be available until next week and Im stuck waiting again over the weekend. Since my ferritin has been for a long time and still is very low, I inquired about adding a reverse T3. Not sure if that will be helpful or not.
My automated chemistry labs returned normal. The EKG was done and I came home so I assume tgere is nothing drastcally wrong.... Or it wasn't looked at yet. I have the Holter monitor hooked up and am wired up until Saturday. The results won't be done til sometime next week. The heartbeat is driving me nuts. I hesitate to say chest pain because it's not that. Just took my BP and heart rate was at 121. Took it again on other arm and it was 111. This was not after shoveling but just getting ready for work. It all seems so wrong.
In the meantime, WI has finally had more snow. I will be shoveling all day long....my house, at work, my folks. Nothing like being sweaty and taped up with wires.
On a side note.... I checked with my GI about using entocort while on LDN. They are not familiar with it and said it has no benefits for MC and I can continue it as needed. Well, it's my intent to see if I can make it without using it since it is a steriod. So far, I can say it's been a surprisingly pleasant bonus that I am seeing improvements with my bowel habits. The excessive gass in the mornings has pretty much been eliminated.
Whohoo!
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I apologize for my late response. I had a power outage this morning, so I'm way behind on everything.
Regarding thyroid supplements, I wouldn't skip them entirely, but you should certainly be able to cut them in half without any major problems, at least long enough (a few days) to see if that helps to relieve the tachycardia. If you've already skipped them for the day, don't skip them tomorrow, because after a few days the effects can cause heart palpitations and insomnia, and other issues. Been there, done that, and it wasn't fun, even though I still have a functional thyroid gland.
Incidentally, did you know that low ferritin is commonly associated with hypothyroidism? None of these problems would have occurred (before you began taking LDN) if your thyroid treatment dosage had been correct. But now LDN has shifted everything in the opposite direction, and your dosage is either too high, or improperly divided between T4 and T3. I'm amazed that LDN could interact so strongly with thyroid issues.
That article also holds a clue about why your digestion has improved now that you are hyperthyroid. Hypothyroidism can cause low stomach acid, and that can lead to poor digestion. Poor digestion can lead to gas, bloating, and D. That implies that there is a chance that Betaine HCL might resolve your digestion issues.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks Tex, it's amazing how we take power for granted. It sure can put a halt to the day!
I couldn't bring myself to take my meds this morning knowing that I would be going into the weekend with no modification to them. I'm not sure how it will effect the results recorded on the heart monitor but maybe it will improve enough by tomorrow afternoon when I can take it off that I can make my point. I'm a bit nervous now that I'm switching endos because everything is moving so slow and the whole prior authorization with my insurance company is going to be a pain. But in the big picture, once I get where I need to be, my appointments out of town can be coordinated far in advance and should go fairly smoothly. I do it with my son's liver transplant team and GI all the time. I keep reminding myself it won't be much longer and I can put this behind me and it's a lesson learned. I did take my 5 mcg liothyronine pill this afternoon.
My PCP was very up front about not being familiar with T3 dosing so I'm waiting for my new endo to send an order to complete my labs since x-endo only ordered TSH labs. I was hoping to get those drawn today but the communication process was too slow. I told myself last weekend to just hang in there so I will be doing it again one more time. I thought they'd treat the whole heart rate thing quicker. I feel pretty crappy but know it's just a matter of time. I just worry about what damagae is going on on the meantime.
I ran across that article just recently and am amazed that my ferritin levels were ignored for so long. I'm glad the information was available here or I would have never known to look into it.
I recently started drinking Braggs apple cider vinegar, a couple teaspoons a day. I figured it couldn't hurt. I've been using the HCL on occassion when my stomach has that yuk feeling like food is just sitting there but the LDN really has made a difference. I still have D but the frequency has lessened a bit and instead of always WD it is becoming loose D. Not sure how to explain it but it feels more formed coming out even though it ends up with no form when it hits the toilet bowl. It's just different in a good way. I was reading that LDN can cause weight gain in some people GI issues because nutrients are absorbed better as the gut heals. Not that I want to gain weight but the idea of malabsorption issues improving made me feel a bit giddy. I try not to get too hopeful because I've been let down so many times but if I kerp trying, eventually something has to fall in place, right? :)
The pesky little hemorrhoids that have been constant for years have seemed to disappear. I know I got excited not to long ago when they resolved during the very brief time I tried Colestipol so hopefully this time they will remain at bay. I've also noticed a more runny nose and a great improvement in my sinuses. For years, I've always felt stuffy and now my sniffer feels great!
I did run across the dosing recommendations of LDN for thyroid patients too late and wonder had I started at the 1.5 mg dose at the start if I'd be in this situation. live and learn.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
D instead of WD is a big improvement, though as you say, it may not seem obvious. I can recall that when I was still reacting, one of the differences between D and WD was inflamed hemorrhoids.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
It sure is an added bonus. I had given up hope on ever being without them.
Fyi- did a check twice tonight and my heart rate is back in the 70's which feels soooo much better than the 120s from this morning. I'm interested in how it will read in the morning since it seems to peak then. I will have to sit down and provide a timeline of my meds to include with my "diary" I am required to keep noting any physical activity. Hopefully that will explain the miraculous change in data and excuse my WAG self dosing of meds.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
That's a great response. I think you've nailed it. So yes, definitely keep careful notes on meds, doses, activity levels, and coordinate the timing.
And keep an eye on your heart rate because if your thyroid level gets too low, it's possible for bradycardia (excessively slow heart rate — in the lower 60s) to develop.
Thanks for the update.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Deb,
I've long had hypothyroid symptoms with "normal" TSH labs. Apparently my autoimmune issues mean I have trouble converting T4 to T3, so my doc started me on 10 mcg Cytomel (T3), then switched me to 1 grain Armour. My heart rate went from 60 to 70 over a couple of days, and my body temp from 97.4 to 98.6. The 1 grain Armour was too much by week 2 (I'm on 4.5 mg LDN). My temp was 98.9 and heart rate was in the 80s. Even though I knew I was a little hyper, my TSH was normal. Only my Free T3 was high at 6.3.
With your symptoms, I'd lower the thyroid dosing, not increase.
I'm now on 3/4 grain NatureThyroid and feeling good, tolerating winter weather for once.
As I understand it, LDN only affects your thyroid replacement dosing if you have Hashimoto's, because LDN reduces the immune attack on your thyroid.
Incidentally, I was also deficient in iodine, so I take a supplement a few days a week. Not sure if you need iodine when you no longer have a thyroid...
in line with Zizzle's comment about Iodine - I did my annual iodine urine level test, and I am still moderately deficient. I had been supplementing but not enough.
I have been listening to quite a few podcasts about iodine in the past week and doing a bit of reading
Yes, you still need iodine when no longer have a thyroid. Iodine is not just for thyroid, it is for endocrine system in total, mast cell immunoglobulin homeostasis, myelienation and synaptogenesis
the myelienation and synaptogensis is linked to nervous system health and nervous system function - which may explain your fatigue/pain etc.
the endocrine system is key for mood, sleep, metabolism,
might be worth doing the iodine test (most likely you will have to pay)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I am still waiting to hear back from my endo as far as what to do with my meds. I was a tad bit aggravated this week that my doctor's office failed to send her the results of my labs done on Tuesday the 12th. My doctor was kind enough to message me that evening with the results because she was going to be out of the office the following day but her staff dropped the ball on getting the results where they needed to be. After several messages from my endo's office informing me they were still waiting and several more phone calls and assurances that the lab results would be sent it was late Friday afternoon, they still didn't have them. Grrrr. So hopefully tomorrow I will get some direction.
Zizzle, I agree I need less but with my TSH taking a jump from 1.47 uIU/mL to 8.85- I'm not sure what her take on the situation will be. I was very up front with her about my ten days of skipping/reducing meds but it really does throw a monkey wrench into knowing what I really need. I felt better and the chest discomfort stopped after dropping my dose. That is the only reason I chose to reduce them so drastically. It was the second weekend in a row with a racing heart and feeling like I was going to give up the ghost. I received a simple message from my PCP that the results of the EKG and Holter Heart Monitor came back "normal." I am interested in more detail than that because I did a considerable amount of snow shoveling throughout the 48 hours I wore the device and I know I wasn't feeling right. I'm not complaining about the good result but it just doesn't make sense to me unless I'm misunderstanding the information that is being read.
The really odd part about the whole situation now is I went back to taking my thyroid meds at the dose prescribed since last Wednesday, I'm not having any issues. However, I do get winded much easier than I should and my heart rate jumps more than usual during exertion, which is often during the working day.
I understand that I'm not supposed to have Hashimoto's anymore since I have no thyroid but I am still trying to understand why I would have such a strong reaction two weeks after starting LDN. The only explanation that makes sense to me is that it is possible. If my immune system got such a boost that it changed how I utilize the thyroid hormones, why wouldn't it make sense that my dosage became too much? Too bad it all isn't black and white.........
It is similar to my GI's comments that LDN has absolutely no effect on MC. I called his office to ask about the concurrent use of Entocort and LDN. They said it was fine. To me, it seemed counterproductive to be taking both an immune suppressant and and drug that boosts it. The nurse I spoke to initially got a little testy when I told her how often I was taking it. She referred to it as "on an as needed basis" and that is not how it's supposed to be used. I couldn't argue with that but was also told earlier in the fall by another RN that it was perfectly fine for me take take it as I have been for the past forever-many years. It just goes to show how much is not known or accepted yet. I am now 25 days entocort free and very hopeful I can eliminate it all together. I've made it past my 23 day mark- the longest I was able to avoid it before going into a flare. I have more gurgling but that is just making me more in tune with all of the maybe/maybe not foods in my diet. Having noticed a big improvement in my MC has made it 100% easier to kick out any food that was on my maybe list. It has been one long struggle since 2011 when I started with the GF, SF, DF, and egg free diet. I'm not there yet but am going to enjoy it while it lasts and hopefully that will be on-going.
The LDN has made a huge difference in my sleep. For the first time in over four years, I wake up feeling happy. For such a long time, I woke up every morning more tired than when I went to bed. I can remember thinking how awful it was to wake up exhausted at 5 AM with the first thought of the day being, "I can't wait until the day is over so I can go back to bed." I'm finding myself having little obsessive thoughts that this will all end and I will go back to the way it was, and it terrifies me. I've taken the stance that it is conditioning. I have felt so bad for so long, it is just a habit to worry about when I am going to be exhausted for the day. I have had such short windows of time each day in which I feel productive that I have become accustomed to migrating to the couch. I have to continue to remind myself throughout the day that I am good and can keep going. It took a long time to hit the bottom and flounder around down there but the LDN has shown me that I am capable of feeling good. I also believe that had I not adopted the diet I am on now, the LDN would not be helping as much as it is.
So far, Armour has not been an option. My new endo told me at my consultation/second opinion in July that she would not write a script for me but she did have one patient in her practice that she uses it for, more-or-less, to keep her satisfied. I chuckled at that because I thought it sounded like many of us here who are actively involved with our care. Maybe at some point she will change her mind. I can remain hopeful.
Zizzle and Gabes, thanks for the suggestion of iodine. It isn't something I've investigated and will have to look into it.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb wrote:The LDN has made a huge difference in my sleep. For the first time in over four years, I wake up feeling happy.
That's definitely a big step in the right direction.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
