its back and worse than before

[alikat]

After fighting to regulate my hypothyroidism for over a year now I have had increase after increase on dosages. I was placed on Leyoxl w/ dosage increase to 125 mcg in March after having pain with Levoythyroxin increases. And for a month and a half I finally felt normal. No pain with increase, no fatigue, no dizziness, and my depression was less. But, this past couple of weeks, the muscle pain, fatigue, and joint stiffness has returned with a vengence. I am back to fighting dizzines (motion sickness feeling) on a daily basis again.


Anyhow, I am feeling horrible, and this is the only place I know of where others truly understand what I am going through. Its noticeable that I am ill and in discomfort, yet most don't understand the effects of thyroidism....so they tease me about getting old. I'm only 30. But, sometimes, I fear how it will be in 10, 20 years if I already feel this awful now.

not fun.

[hillaryedrn]

I completely understand!! I'm 32 and there were times where I felt like I was 80 something!!

When do you go back to the doctor? When were your last labs done? Has anything else changed with you? New diet? New exercise routine? Anyone sick around you?

I'm so sorry you are feeling so bad!!

[CA-Lynn]

You mentioned joint stiffness. Two things come to mind:

1. Vitamin D ~ osteomalacia [if pain is REALLY severe]. Get a Vitamin D blood test to rule out.

2. Autoimmune arthritis or muscle disease. See a rheumatologist.

[Andros]

After fighting to regulate my hypothyroidism for over a year now I have had increase after increase on dosages. I was placed on Leyoxl w/ dosage increase to 125 mcg in March after having pain with Levoythyroxin increases. And for a month and a half I finally felt normal. No pain with increase, no fatigue, no dizziness, and my depression was less. But, this past couple of weeks, the muscle pain, fatigue, and joint stiffness has returned with a vengence. I am back to fighting dizzines (motion sickness feeling) on a daily basis again.


Anyhow, I am feeling horrible, and this is the only place I know of where others truly understand what I am going through. Its noticeable that I am ill and in discomfort, yet most don't understand the effects of thyroidism....so they tease me about getting old. I'm only 30. But, sometimes, I fear how it will be in 10, 20 years if I already feel this awful now.

not fun.

Are you sure the pharmacy did not substitute a generic for the real deal here??? Sounds suspicious to me.

I am sorry you feel so bad. One thing that helped me a lot was foregoing artificial sweeteners and other chemicals like MSG. These items can cause the inflammatory process in some folks.

[stacy80]

I am so sorry your symptoms are back! I had to live with them (and still do to a certain extent) due to my thyroid cancer and not being able to go on meds after my surgery and RAI were complete until this past Friday. I'm not at the correct dose either but seeing as I had nothing before anything was better than what I was having to deal with then. It really stinks being hypo. I am also 30 years old and it is not fun feeling like you are so old. I have no more advice than what you have already been given but I wanted you to know you are in my thoughts and prayers. Hoping something can be found out and that you get to feeling better quickly!

[daisydaisy]

I was getting better for 4 weeks on new meds and seems the last 2 i have been slowly going downhill. My aches are bad now....I wonder if its more than hashi's...like arthritis throughout my whole body/ the inflammation. I get my tests back soon and we'll see for my TSH. I know Oil of Oregano drops help with the pain as I use it instead of tylenol in tea or juice a couple times a day. It kills the pain and inflammation. Your suppose to go 10 days on it then quit for a week or 2 then back on it, OR whenever it flares up in between. No real guideline on it though as it is natural. When I find out what my endo says on my end I'll let you know as well.

[Andros]

I was getting better for 4 weeks on new meds and seems the last 2 i have been slowly going downhill. My aches are bad now....I wonder if its more than hashi's...like arthritis throughout my whole body/ the inflammation. I get my tests back soon and we'll see for my TSH. I know Oil of Oregano drops help with the pain as I use it instead of tylenol in tea or juice a couple times a day. It kills the pain and inflammation. Your suppose to go 10 days on it then quit for a week or 2 then back on it, OR whenever it flares up in between. No real guideline on it though as it is natural. When I find out what my endo says on my end I'll let you know as well.

What new med are you on and how much? When are you do for labs? Did you know that Oil of Oregano depletes the bodies' ability to absorb iron?

If you have low ferritin, that would make you very very tired, possible pain in the legs and it also would interfere with the efficacy of your thyroxine replacement. Not the oil but the low iron/ferritin.

[peaches]

Andros,

What do we take to increase the ferritin in our bodys? I feel really achy alot. I know that I have McArdle's disease, but I definitely know the difference between those muscle pains and the achy breaky thyroid pains. You know, the ones that make me feel like my great, great, great grandmother.

[alikat]

I am still on the Levoxyl, have been since March. I have another set of labs coming up soon. And, I do avoid the artificial sweetners and plastics as I've heard some people suggest. The pain I have is my muscles and joints, I get so stiff if I sit still that I have to limp around a bit to loosen up. THe pain stays but the stiffness works itself out. I haven't had any real changes in my life, other than the way I feel. I am going to call the doc this week and see if I can rush my labs as well. This is not a good thing to deal with daily, and my kids miss me being more active with them. It all stinks highly.

[Andros]

Andros,

What do we take to increase the ferritin in our bodys? I feel really achy alot. I know that I have McArdle's disease, but I definitely know the difference between those muscle pains and the achy breaky thyroid pains. You know, the ones that make me feel like my great, great, great grandmother.

First and foremost; of course you should have a ferritin test. As you know, too much iron could be damaging. That said, I personally recommend Floradix Liquid Iron. It absorbs fast and from I am told, comes in flavors. LOL!!

We use cast iron cooking utensils in our home. Not all the time but often. There is nothing like a cast iron skillet that is well cared for. Fried chicken, corn bread in the oven, etc..

Also, even though you did not ask, I find that most of us with autoimmune are deficient in the electrolytes which are also minerals. It is recommended to take all the electrolytes; not just one. The reason is if you say for example take only potassium, it throws the others out of balance. Electrolyte deficiency can cause a lot of muscle pain and of course, so can iron deficiency.

I take Electrolyte Essentials which is a capsule and is "complete."

Hope I have been helpful to you. And I am sorry you are in so much pain. You can blame the thyroid but alas, treating the thryoid does not treat the deficiency.

Sending gentle hugs,

[peaches]

I am going to the endo this Thursday(5/20). I will ask her to do a ferritin test. I also want her to check my vitamin D level. I feel like I may be low. I am starting to lose so much hair that I think I will be bald in about 4 months if it keeps up so I am going to ask her about putting me on armour instead of the liothyronine(generic cytomel) and the synthroid. I have heard others say that the synthroid can cause hair loss as well. I really am grasping at straws though. I went from feeling much better after starting the liothyronine but now I am starting on a downward spiral. Is this how it is while trying to get titrated correctly?

[Andros]

I am going to the endo this Thursday(5/20). I will ask her to do a ferritin test. I also want her to check my vitamin D level. I feel like I may be low. I am starting to lose so much hair that I think I will be bald in about 4 months if it keeps up so I am going to ask her about putting me on armour instead of the liothyronine(generic cytomel) and the synthroid. I have heard others say that the synthroid can cause hair loss as well. I really am grasping at straws though. I went from feeling much better after starting the liothyronine but now I am starting on a downward spiral. Is this how it is while trying to get titrated correctly?

The insert for Synthroid says it can cause hair loss in some patients.

[CA-Lynn]

I have several autoimmune diseases and I swear they ALL seem to cause hair loss to some extent.....and if that doesn't getcha' the drugs will!

I'm glad you're getting the vitamin D checked. We should open a special topic on that.

FYI: Most labs use 30-100 as normal range for Vitamin D. Most endocrinologists are saying 50-80 should be normal. Mine tanked down to about 9 and really screwed up my thyroid in the process. Once the test was run and I got an Rx for Vitamin D I started feeling HUGELY better in short order. It takes a long time for the level to come up though.....at least in my case.

My endocrinologist does NOT recommend OTC Vitamin D. Also, do not take Vitamin D supplements unless prescribed by your doctor. Why? Because too much Vitamin D [which is a hormone, actually] boosts the calcium and toxicity can occur.

I hope your problem is Vitamin D because the "cure" is so easy and comfortable.

[peaches]

It would be great if it were. What is the difference between over the counter Vitamin D and others? I just did the survey that was on another thread about magnesium deficiency and think that might be a problem as well.

[alikat]

Update: ugh the pain. I am so out of whack its not funny. I finally got my bloodwork done and once again an increase is in order. I do not have the results, so I don't know the levels at the moment. I will be changed to 137mcg to see how that does me. I now have body pain all over all the time like never before, and my dizzy feeling has returned. But, this time I also have a sore spot in my neck on the right side. It hurts to touch, and makes my neck feel sore. I have a follow up visit on Monday, so I'll be informign him of this, and askign for an update US. I had a nodule they thought was of no concern due to small size, but due to my history of cancer, they want to keep an eye on it. I say now is just as good a time as any. I have my annual PET/CT scan tomorrow for my remission checkups as well, so I shoudl be well aware of my position in health by next week.

-alikat

-alikat

[Debbie from Milwaukee]

Alikat:
Oh my goodness--your experience sounds awful! I really hope you get some answers or at least some lab/scan tests ordered to get closer to some answers and relief for you.

You might want to review and print out some of the comments/advice from the members prior to going to your appt. (and maybe do a little research on low ferritin and low vitamin D3).

I THOUGHT I understood my daughter's thyroid disorder 3 years ago (diagnosed with Grave's disease and then given RAI), but the more I find out from forums like this and really good docs who understand this stuff, the more I have respect for how complex all of these body systems interact.

Here are a few more thoughts:
1) Please ask your doc for printouts of updated thyroid labs that included TSH and most importantly your free T3 and free T4 (or ask him to run them if they were not looked at). One of the things that I have been made aware of through my daughter's doctors and a few people on these forums is that sometimes a person's body is NOT able to convert the standard T4 supplement (Synthroid or generic meds) into usable T3 for the body. If this is happening to you, it can throw the thyroid way out of wack, as well as possibly involve the adrenal glands. Some people end up having to go on a different form of thyroid or else a T3 med added along with standard Synthroid. I'm not sure if something about the thyroid autoimmune response causes this or another problem like if your digestive system becomes unable to absorb necessary nutrients (such as with gluten intolerance), thus the suspicion of low ferritin and low D3.

2) Also ask for an RBC magnesium blood test to see if this is low, since this can also affect thyroid function. We found out that my daughter's magneseum was at 2.7 (4.0-4.5 average range), which was the lowest that the doc had ever seen in a LIVE person and put my daughter at risk for a seizure! This is the specific magneseum test that can detect this mineral.

3) If you get all of these things checked out in the next few weeks and nothing significant turns up or you still have your significant pain and dizziness, consider asking your doc about autoimmune arthritis. My daughter does not have experience with this that I know of, but I see a lot of mention of it from people on these forums. Apparently, people seem to notice that autoimmune conditions run in "3s".

Hope you also find out what is going on with the sore spot in your neck. I can tell you are really concerned about that! Thoughts and prayers go out to you...

[Andros]

Update: ugh the pain. I am so out of whack its not funny. I finally got my bloodwork done and once again an increase is in order. I do not have the results, so I don't know the levels at the moment. I will be changed to 137mcg to see how that does me. I now have body pain all over all the time like never before, and my dizzy feeling has returned. But, this time I also have a sore spot in my neck on the right side. It hurts to touch, and makes my neck feel sore. I have a follow up visit on Monday, so I'll be informign him of this, and askign for an update US. I had a nodule they thought was of no concern due to small size, but due to my history of cancer, they want to keep an eye on it. I say now is just as good a time as any. I have my annual PET/CT scan tomorrow for my remission checkups as well, so I shoudl be well aware of my position in health by next week.

-alikat

-alikat

Did your doc run Free T3 and Free T4? It would be good to know if you are converting or not. If you are not converting (low Free T3) then your doc should add some T3 to the mix instead of continuing to raise your T4 med.

Glad you are having an uptake scan. That is good news.

{{{{alikat}}}}

[alikat]

Well, I don't believe he checked my T3 level. We just checked my Vitamin D and that is normal. My PET scan and Ultrasound both were normal. So def no cancer causing this. But, the pain is still present and horrible. Its worse at night and in the mornings. But it moves from limb to limb with no rhyme or reason. I am going to go to my primary physician and request a Free T3/T4 check hopefully by next week. I cannot keep living in pain, so they are going to be pushed and pushed until they figure out what is causing this.

The ultrasound showed pronounced glandular nodules on the right lobe, but they said that was nothing to worry about. These weren't mentioned in my last scan, so I suppose they are somewhat new.
I don't know.

another sigh....ugh.