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Post by Stacey on Nov 10, 2014 9:44:20 GMT -6
Hello Janet,
Great picture by the way : ) I'm rarely on my tablet one of these days I'll get on there and post my pic, hopefully with my chocolate puppy & Mr Kitty : )) I'm dreaming of living in a Rose Colored World when my Puppy gets here. Lol!!
Anyway, I too, had that internal Shakiness often with the new Levoxyl (never could figure it out. As my labs always showed me as Hypo and though it felt like a blood sugar thing my IGa, or insulin levels showed almost perfect each test I had.
For me I dealt with a Lactic acid burn in my thighs it's hard to explain other than our muscles produce this sonehow but if your not getting rid of toxins (and I wasn't) I ended up with a large build up of Lactic Acid in my body. I had to use one of this large foam rollers that they use in PT or at the gym and constantly roll out my thighs from having too much lactic acid. I know that was just me on the New Levoxl & part of the trouble I had with it. Again this was just my experience and once I was off that Levoxyl my body started to rid of toxins on its on again : ))
I also dealt with insomnia on the new Levoxyl, never did with the old. And again MY labs always showed Hypo but once I switched to WP Thyroid and Stayed with my Cytomel I've been doing so better. No more shakiness or lactic acid burning in my muscles and I've been sleeping perfectly I fall asleep fast and I only get up once to use the potty lol then right back asleep. This new puppy is going to probably make me grouchy, I'm the same way if I don't get my sleep. Hopefully She'll adjust quickly. Again I have my Rose Color Glasses on : )) but one can only hope!
Anyway, it's really hard to say for sure, but that was my experience with both those issues. ( I see Dr this week) probably go in for labs on Monday. I'll be excited to see where I'm sitting in all of Thyroid levels as well as my iron, Vit D, Vit B12 and cortisol. Right now my Dr is only testing adernals with blood test. But if we think my adernals are suffering fatigue I'll do a 24 hour salvia test to see what my levels are doing if needed.
Hopefully you'll get a copy of your labs once you see your Dr and go over everything. ( I think you're going to the Dr soon Right?) I know Terry is, can't remember if you are too, I'm sorry : )) I have a lot going on and it's only going to getting busier here in a few weeks. : ))
Take Care, and I hope everyone has a great week!!
Stacey : )
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Post by Deleted on Nov 11, 2014 3:31:54 GMT -6
Hi Stacey, Thanks so much. I am going to check on that. I don't like feeling shaky like that!! I'll be googleing Lactic acid when I wake up for real, this is just puppy duty LOL Please post a photo of the new puppy. I can't wait to see it  Thanks again - so much Janet |
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Post by Deleted on Nov 11, 2014 3:34:28 GMT -6
Hi Bonnie,
I sure hope you feel better. I am so sorry you have a cold.
HUGS
Janet
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Post by Deleted on Nov 12, 2014 3:45:03 GMT -6
Bonnie, how are you doing??? I hope your cold is ok.
Janet
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Post by Deleted on Nov 13, 2014 20:03:39 GMT -6
Hello...
Terry, levoxyl causing you to hold water? It did cause me water retention therefore BP will rise. For me my fix was to take half of my regular dose of levoxyl and half of levothyroxine (has great diuretic).
Happy to read many are doing well these days!!
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Post by kat on Nov 13, 2014 23:06:57 GMT -6
Hi Everyone...I had a short political meeting. We had our first snow fall today and it was so cold. It was in the 70's on Tuesday and now it is like the Tundra winter we had last year. I feel bad that some of you are still struggling. Last week I had the same cold Bonnie got and terrible aching in my right shoulder. I exercise and use weights but this has been going on for longer than it should. So now I have to start Physical Therapy. I am going to bathe in Epsom Salts. I wish I could just unscrew my arm and realign it myself. I told Bonnie that I dreamt they came out with a NEW thyroid pill that worked on all of us like the good old days. We will all make it ...maybe it takes more time. However, when I look at where I am today as compared to that terrible journey on Sandoz I am so grateful to have the levoxyl. Take care dear friends. When you have time Stacey send a picture of the new "baby". Get some rest Janet. I hope your cold
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Post by kat on Nov 13, 2014 23:09:57 GMT -6
I do not know what happened but I wanted to tell Bonnie I hope she gets her rest and her cold feels better. I am going to Chapel on Saturday and am going to light all the candles that are available for the bravest, strongest group of women that always keep going no matter what...Love...Kat
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Post by Deleted on Nov 14, 2014 2:19:46 GMT -6
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Post by Deleted on Nov 14, 2014 23:02:16 GMT -6
I haven't been on here in quite a while. I am still not doing great on the new Levoxyl. I went to have bloodwork done the other day and as part of the process (this thing my husband's company does) they also checked my blood pressure. It was so high they gave me a paper saying how dangerously high it was. My mom has a blood pressure monitoring machine, so I've been checking it at home for the past few days. It's been up and down. It was normal the last time I checked it this morning. I am in the middle of reading the book "Thyroid Power" by Richard and Karilee Shames. So far I'm learning a lot from it. I absolutely don't think my endo is doing all of the blood tests she should be. She checks my TSH, T4 Free, and Thyroid Peroxidase AB (this is antibodies which is always high out of range). She never checks anything involving T3. I think I may not be converting the T4 to T3 like I should be. My last TSH was fine, but from what I am reading it can be, but you can still have problems. I don't have the results from this latest test yet. I have found a new endo who I am hoping will know better what to do, but being a new patient I couldn't get an appointment with her until January. So I will go to my current endo in a few weeks and see if I can convince her that she needs to be testing for other things. I've been taking Zyrtec for my allergies and have read that that may be causing the high blood pressure, but I still think my thyroid isn't working like it should be. I refuse to have to start taking blood pressure meds when I think we just need to get my thyroid straightened out. And the pounds keep packing on too. I am running out of pants that I can fit into and I don't want to buy new clothes when I plan to get this weight back off once things get fixed. Hope everyone is doing well. Terry, I am having some BP problems also with Levoxyl (in addition to the loose stools). Probiotics seemed to help with the loose stools until today. I have been taking my BP on machines in Walmart or the grocery. It is not nearly as high as at the endos. She and her nurse really hurt my arm as they pumped pretty hard. I went in to my internist for an annual check up this Wed. My BP was good there 124/83. I will keep an eye on it. I feel that I am retaining water which is likely driving the BP up, and adding pounds. My weight was up another pound. I'll have to go shopping for a new size, too! I think KG has something in dividing her dose between the two meds. Maybe when I go back to see the PA at the endo's next month she will let me try adding the generic by Mylan! "Thyroid Power" is a good book to read. I checked it out of the library a few times when I first got my diagnosis. There is a website for them also. I think it is www.thyroidpower.com Mary Shomon sometimes does a question and answer session with Dr. Shames. The only medication I can take for my sinus problems is Benadryl. I take astralgus roots in the liquid form as it is good for respiratory problems. Have a good weekend everyone! |
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Post by Deleted on Nov 17, 2014 0:26:52 GMT -6
Hi, Sue, Terry I have been trying to eat a lot of foods that are natural diuretics. Lemon, oats, brussel sprouts, beets, ginger, cranberry juice, water, celery and there are a lot more I am going to start adding in to my diet. Caffeine is one, but I drink enough coffee already. Maybe that will help with the bloating and higher BP. Mines a little high too on "New" Levoxyl. This should not be this hard!!  |
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Post by Deleted on Nov 18, 2014 17:08:02 GMT -6
Bonnie, Your grandchildren are absolutely adorable You will have a great time with them!! I look forward to the email photos. I hope your eye Dr appointment goes well and you get the floaters straightened out. Hope you & hubby had a great lunch date Kat, I am so very sorry to hear about your shoulder!! I hope soaking helps. Please don't unscrew your arm LOL. Seriously, I hope it gets better fast!! AND .. I really liked your dream, maybe it's a sign ... |
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Post by Deleted on Nov 18, 2014 17:10:00 GMT -6
Weather ... it is 14 degrees here and so windy! It snowed but not a lot. I cannot believe how fast it got cold.
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Post by Deleted on Nov 18, 2014 17:11:45 GMT -6
Sue,
I am going to get that book ASAP. Thanks so much!!
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Post by Deleted on Nov 25, 2014 12:21:09 GMT -6
Hi ladies. This is going to be a very long message. Hope everyone is doing well these days and has a great Thanksgiving.
I went to my current endo this morning. It didn’t go as well as I had hoped, not that I am all that surprised. When I asked her about testing T3 she said she doesn’t. Of course my TSH is fine so therefore my thyroid must be ok. I told her I’m not fine. I’ve gained a ton of weight, my blood pressure is up, I have heart palpitations and sometimes chest pains, I’m tired, forgetful. Sounds hypo to me, but the almighty TSH is 1.18. That’s up from .63 in May. My T4 went from 1.5 to 1.4. My antibodies dropped from 131 to 63. They have never been that low and I still don’t even understand what that means and didn’t get a good explanation from her when I tried to ask. I don’t understand how she can say I have Hasimoto’s when the reason I need synthetic thyroid supplementation is because I had half my thyroid removed due to a goiter many years ago. She said the fact that I have antibodies is what makes it Hasimoto’s. She said that there’s lots of stuff on the internet, but it’s not all correct. I told her that I had read two books written by MDs and went to hand her the paper where I had written down the names of the books and the authors and she said she wouldn’t read them. Her feeling is she went to school for this and she knows what she’s doing. UGH! I could understand it more is she was an older doctor who wasn’t used to being questioned by patients, but she’s not old.
She did agree to put me on some Cytomel 5mcg, but I asked shouldn’t we test my blood for T3 first. She said no that wasn’t necessary. She considered lowering my Levoxyl dose in addition to adding the Cytomel, but decided not to. So she told me to take the Cytomel around noon every day and then I could eat lunch a half hour later. My concern is that from what I have read, in those books she won’t read and on the dreaded internet, that since Cytomel is direct not slow release T3 versus T4 which is slow release, that your T3 can spike and then drop. In the book The Thyroid Solution the doctor recommends taking it two or even three times a day in smaller dosages. I think some of you ladies may be doing that. While I definitely want to try the Cytomel, I’m concerned about bad side effects. I have an appointment with her in February to see how things are going. She said she’d write down on the bloodwork form to test T3 if I wanted. I mentioned that from what I understood that both Free T3 and Reverse T3 should be tested. Her response was no you just test Total T3, which I thought was definitely not the right thing to do.
I am convinced that if my thyroid gets straightened out all my other issues will go away. She was surprised I had so many complaints since the last time I was there in May I said things were better. But it’s all relative. Yes I felt better than I did when I was on the Synthroid, but I don’t feel like I did before Levoxyl went away. To which she replied that Levoxyl was back. I told her I’ve been back on the Levoxyl. (Didn’t she know that from my chart?) Plus I’m the one who told her it was back when I found out about it on the old forum and asked her to put me back on it in February. She doesn’t think my thyroid issues have anything to do with my elevated blood pressure. I beg to differ. If my metabolism isn’t working correctly and I’m gaining weight that can definitely impact my BP. I am not going to start taking BP meds until I am convinced we have done everything possible to straighten out my thyroid. When I was sitting in the waiting room I was looking at the posters hanging on the wall, diabetes, osteoporosis, nothing about thyroid. There was a Synthroid brochure that said to get your TSH tested and if it was within range you were fine!
So I am anxiously waiting for January when I have the appointment with the new endo to see what she says. My biggest concern is that I have no idea if I may be waiting all this time to end up going to yet another doctor who won’t listen. I sure hope the new one is good, or I’ll still not be feeling my best and doctor hopping. I hardly have any pants that fit me anymore and I don’t want to have to go out and buy new clothes that I have no intention of needing once this gets figured out. I’m scared about the heart issues and nervous about taking the Cytomel without being monitored by someone that I trust knows what they are doing.
Thanks for listening and again Happy Thanksgiving everyone.
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Post by Deleted on Nov 25, 2014 18:51:26 GMT -6
Hi, Terry; I am so very very sorry. Your Doctor is EXACTLY like mine. TSH only and treats me like a pain in his A@@. I am looking for a new Dr now. Stacey has much knowledge about T3 and she takes Cytomel. Maybe write her a private message and ask her, she has helped me so much!! And she can even give you a list with Dr's all over the country. Please let us know what the new Dr says and I hope it is a much better experience. I know exactly how you feel b/c my doc is the same way. He actually looked at me and said "Just take that Synthroid my wife does and she's fine" Grrrrrrrrrrrrrr Happy Thanksgiving and good luck with new Doc Janet |
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Post by Deleted on Nov 25, 2014 18:56:29 GMT -6
Hi everybody; I hope you are all doing well. I just got home from the Dentist But I feel thyroid ok ... not great but Ok and much better!! Looking forward to finding a new Dr and being 100% OK. I hope you all have a really great Thanksgiving Janet Bonnie - I hope you have fun with those adorable girls *HUGS* |
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Post by Deleted on Nov 25, 2014 22:46:22 GMT -6
Janet, I'm sorry to hear that your doctor is the same way. Good luck with finding a new one. I think that's a big part of this whole issue is that it's hard to find a doctor who knows what they are doing and will work with you as a team.
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Post by Deleted on Nov 26, 2014 1:07:56 GMT -6
Terry; It sure is hard when you have a Dr that will not listen. Mine is a very nice man but TSH only and Synthroid only. Please remember to ask Stacey, she takes Cytomel and can tell you how it works until you get to your new Doctor Have a great Thanksgiving Janet |
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Post by karenandcollie on Nov 28, 2014 6:20:27 GMT -6
TERRY:
After reading your post dated Nov 25, I can greatly empathize with your feelings about your endo. Any doctor who relies on TSH alone to evaluate your thyroid condition is inadequate. I would highly recommend getting another doctor. Good you will be seeing another after Christmas. To compound things, that she would not even look into the information you gave her off the Internet is NOT acceptable. She should be open to answering all your questions much more completely. I would have been furious. Sure, there are some unreliable sources of thyroid information on the Internet, but the Thyroid Solution by Dr.Ridha Arem is not one of them. Highly respected MD. Other good sources are Mayo Clinic, Stop the Thyroid Madness, The Thyroid Mom, The Nat'l Endocrine and Medabolic Info Site, and Mary Shomon.
I went through what you are going through now last year and I had no hesitation or guilt in going from one doctor to another until I found one that could treat my condition properly. Unfortunately, after going through several DRS, THAT never happened. However, I did find great MDs at Pomerado Hospital ER in Poway CA which I had to go to several times last year for treatment for A Fibrillation, which was caused by the severe hypothyroid. The heart DRS there were exceptional and started me on the right track. After 2 overnight stays there, I connected with a hospital DR that prescribed the 75 mcg Synthroid which finally worked. In March one endo had started me on 25 mcg Synthroid (to replace Erfa - the desiccated T3 had caused an enlargement of the left atrium)and I told her this would NOT work and I would have a set back again. Sure enough, within 3 weeks my TSH was back up to 60+. I had just earlier gotten it down to less than 10 on Erfa which was off the market for 2 months.
My dose of 75 mcg Synthroid was slowly upped until I reached the 112 mcg which I am now on. As you may remember from the Old Forum, I was severely hypothyroid for more than a year due to the thyroid hormones I was trying NOT working or symptoms of inactive ingredients, multiple inadequate DRS, the Levoxyl and Erfa going off the market, and just very poor medical care overall. I tried every replacement out there.
You are right on top of things in your assessment of that DR. I would be VERY leary of taking Cytomel unless lab testing shows you definitely need it. The T -3 is 4 times as potent as T4, and is released immediately into your blood stream. This applies to the T-3 in dessicated as well. It peaks at 2 hours and by 4 hours is pretty much diminished in potency. It can really cause extreme pressure on the heart to beat faster . If you do not need it you should definitely NOT take it. You could check into what VIT and minerals may be needed to convert T4 to T3 and try them before you take the T 3.
Another issue is the Levoxyl. It definitely was reformulated during its recall. It is not at all the same as the older one. It now has added two inactive ingredients , calcium sulfate dihydrate, and sodium bicarbonate. I know many people who cannot tolerate the new Levoxyl, including myself. I tried it in Feb and again recently and after 4 days my TSH went up to 26.5! It does not work in me. The half life of T4 is 6-8 days so it was too soon to test for that, but the half life of T 3 is 1-2.5 DAYS! Since your TSH is normal at 1.18 does NOT mean your thyroid is OK. Symptoms are very important. And other things should be checked. You could be reacting to the new inactives. You may need the T 3 supplement. But please please do not take the Cytomel unless your Free T3 is tested and proven below normal. Taking T4, the T-3 is slowly converted from it- takes at least overnight - and this is not a time release type result, this is a chemical reaction.
One of the main reasons for taking Cytomel is if you are not converting the synthetic T4 to T3. There can be Vit and mineral deficiences that can be causing that, but T3(and Reverse T3) must be tested to determine this. You mentioned you have chest pains - can you get your primary DR to order you a heart EVAL with a cardiologist? A simple echocardiogram would be a great start. Always better safe than sorry.
I don't understand that endo diagnosing you immediately with Hashimotos since you had half your thyroid removed. Both Graves and Hashimots disease are autoimmune diseases. Your antibodies are only low? (I am not sure what the normal antibodies levels are). Having low antibodies does not mean you have one of the autoimmune diseases. but it does mean they should be checked more often. Your remaining thyroid could be getting weaker. At any rate, we know you need supplementation. I believe half a thyroid is not capable of supporting your thyroid hormone needs. That could vary from person to person.
I will be closely monitoring this forum to check for your response. Whatever the situation, know that the people here are very loving and caring and will always be listening.
Sincerely,
Karen from the Old Forum
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Post by karenandcollie on Nov 28, 2014 6:47:33 GMT -6
TERRY:
I forgot to add. You can reduce your BP by diet in the meantime. Are you getting enough VIT D? I use a 2000 IU capsule of VIT D-3 and within 4 hours can drop my BP from 140 to 110 over 65 just by squeezing some of the liquid inside the capsule on my arm. I now eat herring every day and salmon 3 times a week, and that keeps my BP under 110/65. No new shoes for me, but health is more important. Gosh salmon and herring are expensive! Just 2 little squares a day of herring gives you more than 1000 mg Omega 3 and a LOT of VIT D. You can also alternate with sardines. I am not crazy about the taste of either, but they both work well in me. Also I eat 4 celery stalks a day and make sure I get at least 4000 mg potassium in my daily routine. THAT IS HARD. I also make sure I get at least 2 liters of water a day, and NOT Tap water or water that is water softened. I learned that drinking softened water raised my BP. I also had an increase in BP on new levoxyl. I found that reduce sodium/increase potassium works very well to reduce BP without the mainstream med! I am sure this is not new to you, you sound like you are very on top of all things in your messages, but I add these as a reminder.
Karen
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