I have been on Levothyroxine since 2005, had my thyroid removed due to cancer. I no longer have health insurance. I haven't felt "normal" since then. I was taking 200 mcg a day and my TSH was as low as .012 and the doctors felt this was fine. I have cut the dose to 1/2 pill a day and started to feel better, I was hyper for so long the change was huge. I decided to try not taking any levo and went way hypo, TSH went to 177.300 For some reason the effects of hyperthryoidism are much greater then hypothyroidism, at least for me. One issue I have had all along is the left side of my head feels odd. Pain in my neck, jaw, ear, eye, also a tingling sensation that affects my mouth, tongue, teeth. My mouth feels like it's "burnt" like I ate something very hot. Anyway, when I had a PCP and Endo they could never "find" any problem and would just say I don't know. I am at my wits end and must figure this out myself.
I now know the effects of hyper vs hypo, the odd sensations do change, but do not know what questions to ask a Endo when and if I am able to see one again. The only blood test I had were for TSH and T4 Free, nothing else. The blood test I have paid for are just TSH. I am now taking 1/2 pill a day of levo and will have the TSH checked in 8 weeks, any help would be great.
I have been to the ER for this ( 6 months ago) and they were no help at all, would not check my TSH and just told me I was "depressed" and to go back to my PCP, even though I lost my insurance. So I have been doing my best ever since. I know this may be a odd question, but I am at 177.300 at this time and not really thinking straight.
Sorry you lost health plan. Have you applied for other health coverage? Government assistance? Free clinic? Allowing yourself to go extremely hypo can be harmful.
It's against the law for emergency rooms, not to treat a patient with health complications. Also depending on how many local hospitals you have, you can try a different ER, or return to the ER, when different doctor is on shift. I've done this before, works like a charm :)
200 mcg is pretty high, going to nothing would be a helluva swing. After cancer, they only want your TSH to be in the .1 range, not .01...You were too high. The docs should have backed you down to .150 or so, slowly so as to not cause too many symptoms. Now you are hypo, and pretty hypo at that, you must have brain fog. If you are on 1/2 tablet, then you are taking 100 mcg, yes? This should get you less hypo and feel better. Keep on the dose you are on, it really takes 8 weeks to get you leveled out and see where you are. Hang in there. It has been 3 years since my surgeries and I am still being adjusted...
I had my thyroid removed with RAI and found TSH is not a good indicator of my thyroid levels. Most important test are Free T3 & Free T4. It's sounds like you could benefit from switching to a different thyroid med(tirosent) or adding cytomel or armour thyroid. I have to pay out of pocket to see my holistic md, but worth every penny!
TSH is not a good indicator of thyroid levels, as it varies for many reasons, not all thyroid related. You need the Free T3 and Free T4 tests, to show where your levels actually are.
For about $85 you can order a full thyroid panel from various websites. One that some of us have used and had good luck with is healthcheckusa. You place your order, they e-mail you a lab order and tell you which lab, in your area, to go to. You go have the blood draw and in about 2 days, you will receive an e-mail with your results, followed by a hard copy in the mail.
This will tell you what your actual thyroid hormone levels are and give you a better idea of what dosage you should be on; however, only a doctor can tell you what dosage you should be on.
Stopping and starting thyroid med can cause many other health issues.
Hello and thanks for the reply, Since I am new to this and didn't know why I felt "off" for so long. I just thought I was getting old (52) I will make mistakes and hopefully learn from them. I have found a website for the blood tests and that's how I got my TSH results. I have a disability pension, low income, but not low enough to get any type of help with health insurance. Since I have many pre-exisiting conditions I am turned down everywhere. I have appiled for PCIP and should get in. Until last summer my symptoms were somewhat under control, I was taking anti-depressants and I believe that may have lessen the hyper/hypo effects. I am sure it did at this point. Since stopping Prozac I know the horrible side effects that was causing.Now I am feeling the effects of the Levothyroxine and hyperthyroidism. I may also add that I do not have my large intestine, as it was removed due to ulcerlative colitis in 1991, so I may not absorb medications as most people do. My diet is limited to certain foods and almost all vitamins and hard coated time release pills pass through me intact. I know it's gross, but it's true.
Anyway, I will try to keep taking the 100mcg of levo a day and have blood tests in 4-6 weeks time. I will find a Endo would will work with me and hopefully try different types of thyroid hormones. To be honest I have been so confused and unable to think straight for so long, I didn't know what to do or how to do it. I rarely leave the house or drive anymore, I feel unstable, but with the Levo at 100mcg's a day and enough rest and thought I can make it out of the house.
I have learned more on this website from complete strangers than from any doctor I have spoken to in the last 8 years.
Hello, I have been turned down for every type of health insurance I have applied for, but recently applied for PCIP and should get in. The trip to the ER was typical of my doctor visits in the past. I will add that I have had 14 major operations in the past for various illnesses and injuries and do not have a high regard for doctors. If I complain about anything or have issues, most of the time I get " I don't know" or the" tests are normal" and I have for the most part given up on getting proper care and just live with what I have. The main reason I posted a question here is that I don't know where else to turn and this life I have really *****. I didn't know about T4 or T3 and what that means. I didn't know why I felt so bad, but with the change in my Levo dose I finally felt better, so that gave me some hope and now I know why I feel so horrible. It's could just be the medications and the dose. Thanks again for the reply and helpful advice!!
Hello, Yes, I am taking 1/2 pill of my 200mcg Levo. It's been 2 weeks now on that again and I am now feeling better, although my heart rate is higher and more odd sensations. It seems most of what I have been told by the doctors wasn't completely correct, they wanted me below .1 or hyper and at .012 they didn't change a thing. The last time I was seen by the Endo was in 2006, no follow up care was ordered and I didn't know I had to. I just went along with what they were doing. The onset of hyperthyroidism in my case was slow and I just adjusted to it. This became unbearable after I lost my insurance and I have been trying to figure out why I felt so bad ever since.
I now realize the type and amount of thryoid hormone I take really does make a difference and I'm not just "depressed" Hopefully I can get this figured out soon and start to feel like myself again.
Thanks again for the reply!!
From what I have found online you are correct. It could also be a pituitary gland problem. The ENT was of no help and I have just lived with it. I hope with the correct Endo care and treatment most of this will just go away.
Most of the time, TSH is kept suppressed following thyroid cancer, so that's why your doctors thought that 0.012 was fine. The problem is that they weren't testing the FT3 and FT4.
You don't have to wait a full 8 weeks to retest; the medication reaches full potential in approximately 4-6 weeks.
Since you don't have your large intestine, there are a couple of things you can do........ one is to crush the levo pills and mix in a few drops of water, then drink a full glass; or crush them and take them with a small spoon of applesauce - yes, I know you're not supposed to eat or drink anything but water for 30-60 minutes, but you have do what you can to get the pill dissolved.
Another option is to try a medication, called Tirosint. It's a small gel cap and is dissolved and absorbed much more quickly than pill forms. It's more expensive than levo, but still affordable. Mine costs $67 for a 90 day supply, which comes to just over $22/mo. I haven't "price shopped", so it might be less expensive, other places. I've been on it since it came out in mid 2009 and do very well with it.
You should try to get your vitamins/minerals in capsule or gel cap forms, which will dissolve more quickly and are usually better absorbed. Make sure you separate vitamins/minerals from thyroid medication by at least 4 hours.
Make sure you get your thyroid hormone levels in line, before looking at a pituitary issue or something else; you could save yourself a lot of testing expense, just getting thyroid hormones right.
Hello and thanks again for the reply, I do take chewable vitamins and gel caps. I do crush other types of vitamins, but haven't noticed any difference in how I feel. I never thought much about the Levo and how it may be absorbed, but I do wait a hour before eating anything after taking it. The doctors all knew about my condition, lack of large intestine and never mentioned any problems or issues. Even though I may ask, most doctors have never seen a patient like me and have no idea what happens when you have your large intestine removed and how it may impact your body.
The last Gastro I saw was so excited to see me because he had never seen the type of surgery I had. I have a "Koch" pouch and it's very rare to have that done today.
Now I know what to ask a Endo and to be agressive in the care I receive. But lack of intestine and thyroid is not something they see everyday.
Thanks again for the help!!
Are you making sure to separate your levo and vitamins/minerals by at least 4 hours? Many vitamins/minerals (particularly, calcium) can inhibit the absorption of the levo and since that may be an issue for you anyway, you shouldn't take a chance.
No, I'm sure that lack of intestine and thyroid is something that many doctors have never seen before. I can sympathize with you - my sister recently underwent surgery to remove her bladder due to cancer.
Do make sure you get the FT3 and FT4 tests done soon, so you can see exactly where you're at.
Since posting my questions here I've had so many responses, it's been great. I've made 2 appointments with some very highly rated Endocrinologists in my area and was told which blood tests I could have ready before my visits, TSH, Free T4 and Free T3. One Endo does prescribe natural thyroid hormones and both prescribe T3 meds. The visits are not until late Aug, so I just have to wait. But I am making progress and am very thankful to have found this website and so many helpful people. STTM website is also very helpful and explains a great deal of what I am going through.
To Barb135, I know my situation is unique and not often seen, lucky me. So that just adds to frustration at times. Although I may tell a doctor or list it in the paperwork, they have never brought that up as being of any concern. Most likely reason is they have no clue as to what problems may ensue. I do wait at least 4 hours before taking any vitamins or eating a larger meal.
To my surprise, the cost of seeing a Endo without insurance is much less than I had thought. Paying cash is actually less expensive than having insurance, plus I can have the blood work done on my own and they will accept it.
Hopefully all or most of my symptoms will clear up with the correct medications and dose, plus a doctor would will treat the symptoms and not just my blood tests.
Sorry to hear about your sister, I hope she does well. Cancer is bad enough, but when you add in something as private and personal as how do I go to the bathroom now?? that makes it even more difficult.
For me personally I tried not to let it bother me when I had my operation, They took out the retum, anus and colon and I had to wear a pouch on my abdomen for waste. At least I was alive, I think it bothered those around me more than me. You adapt the best you can and I finally had the "koch" pouch operations 10 years later, it's been over 20 years now since the first operation and live goes on.
I've been on levothyroxine for 4 weeks for hypoT (TSH=7). My fatigue and muscle aches are gone, I have good energy, but I now have a faster heart rate than I did previously. My most aggravating problem is intermittent deep core coldness and a body temperature in the 97's. The doctor's nurse and the pharmacist said it can take 6 weeks or more to regulate my whole body. IS this what others of you have experienced?
Yes, most of us "been there, done that". It takes up to 6 weeks for the levo to reach full potential in the blood, then often, more time for the body to heal.
When you don't have adequate thyroid hormones, the adrenals kick in and try to compensate, so once you begin providing the hormones again, your body has to have time to adjust to the hormones it's been doing without.
Additionally, there's a good chance that your initial dosage will not be the dosage that you finally settle out with.
Thyroid controls your heart rate, so when thyroid levels are down, heart rate slows. When we start going hypo, this can happen gradually and we don't even realize it, but we get accustomed to the lower heart rate, then when we start med, heart rate increases and, for me, felt really odd. It felt like my heart was really racing, but when I'd check it, it would be well within the normal limit. After 4+ years, I still have that feeling once in a while.
You do need to keep tabs on it, though, because if heart rate goes too high, it could indicate that you're over medicated.
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