Everything was going fine with my TSH. It seemed to level off at 0.58 on 200mcg Synthroid. And best of all I felt very good for the first in a long time. I started back exercising, 5 minutes - 3 times a week and soon was up to 12 minutes - 3 times a week. That's when I started having symptoms of more thyroid failure, sweating profusely and then ice cold later on in the day. My muscles cramped very bad so that my entire leg and hip cramped up. That was at the 2.5 week mark. I called my doctor and full tests were done a week later. My TSH on 4/14 was 1.07 nr 0.5 - 5.45, FT3 2.83 nr 2.5 - 3.9, FT4 1.21 nr 0.58 - 1.64. Previously, on 3/20 my TSH was 0.58. My doctor felt a nodule and enlarged thyroid, so ordered an ultrasound. The ultrasound showed a normal thyroid without a nodule. Go figure.
My brief history: I was first diagnosed in 2003 with hypoT. It was treated as subclinical when it was actually severe hypoT. I had clinical signs indicating so. However, the doctor at the time was inexperienced and so was I. This started a routine of being under treated for hypoT. Fast forward to 2007, still being under treated and now experiencing extreme symptoms; fluctuating back and forth from very hot and sweating to ice cold and temperature plummeting to 95.8 with shaking chills, extreme fatigue, insomnia, chest pain, shortness of breath, heart palpitations, exhaustion and more. Endo diagnosed me with Hashi's in mid-July. Fall of 2007, diagnosed with perimyocarditis and very ill with complications - hospitalized three times in CCU. In January 2008, I was proclaimed healed from the perimyocarditis as per my cardiologist and internist.
For a little over 4 months, starting in mid-June, I was stable on 150mcg. Then I required dose increases to 200mcg for the next 5 months never being stable since. However, I would appear to be stable and my thyroid would fail some more.
As you can see by the last two tests, my symptoms started again despite being stable at 0.58 and only 2.5 weeks later! The question is: Is this normal? If not, what could be the problem? I'm getting referred to an endocrinologist because the internist is stumped and because he doesn't want to keep my TSH under 1.07 where I feel good. I feel good around 0.5 to 1.0. As soon as I get over 1.0 I know it.
Sorry for the length of this and thanks for reading.
No problem with the personal questions. I am 54 going on 55 in two months. Postmenopausal by long shot. I actually lost weight when I started my exercise program, 7 pounds. Of course now that I don't feel well again, I'm starting to gain that back through lack of exercise. argh!
The only prescription drug I'm on is Synthroid. I want to get on Cytomel in addition to Synthroid though because I used it before and felt better on it.
For supplements, I take 1200 mg calcium, 600 mg magnesium, 1000 mg Vit B12, high potency multivitamin, and Vit B-50s (every three days). I take all my vitamins more than 4 hours after I take Synthroid. I usually take them 6 hours afterwards. Also I try to eat between 3200 and 4700 mg of potassium rich foods a day.
Luckily, I am one of those people who doesn't like most of the foods which are goitergens.
Only one other thing I can think of is having a problem with a skin reaction to the anti-inflammatory medications I took for the perimyocarditis. I started having the problem in mid October 2007 and it continued on and off for about four months and then subsided. The medications were discontinued in January. And the reaction subsided in February and then I had another skin reaction to the original skin reaction ... a mess. I've always been reactionary when it comes to skin problems especially drug allergies, boils, and allergic eczema. The secondary skin reaction was a rare, autoimmune-type reaction.
I was thinking more peri monopause - more than post. Cytomel will make you feel better b/c of thos T'3 boosted. Why did you go off those?
Great Vit usage. I wish I was so regimen.
It's a long shot - but IF the anti-inflammatory drug was anything like predisone - That WOULD cause alot of issues and will hang around for a while. It is nasty for thyoid med users and wreeks havoc on our auto immune system for a long time. This is where the weight (on/off) issues would be a problem.
It takes almost 6 months to leave our system even if you are treated in small dosages in seperate segments.
I think you need to keep an eye on it for a while . If Cytomel was good for you - try going back - I think that would help too. I never was on a T3 alone - but I am an Armour patient now and all the T's are built in. Medication wise - I feel great and getting better. It took 6 years to feel even human for me after RAI - so I feel better on the lower end of TSH too.
I had to go off Armour, which I was originally on, and later Cytomel, because I got perimyocarditis. Perimyocarditis is inflammation of the pericardial lining of the heart and inflammation of the heart muscle. I got two complications with that, atrial fibrillation [fast, irregular heart rate] and pericardial effusion [fluid between the pericardial lining and the heart]. Atrial fibrillation can cause blood clots to be dislodged from the heart and travel to the brain. The T3 exacerbated the perimyocarditis because T3 acts directly on heart muscle.
I was only on prednisone for 1 day in the CCU in late September 2007. My regimen was high dose Ibuprofen, 1800 mg per day for two months and Colchicine for approximately three months. In addition, I was on two heart medications for 3.5 months, because I couldn't take the normal drug used for atrial fibrillation which is Coumadin.
The autoimmune skin reaction was called Autoeczematization. I always have to get the weird stuff. ;)
Your heart issues say alot about being on Armour - that you are correct. I can see why they took you off.
It really isn't weird stuff - rashes like that are all within a family of rashes - It pretty ease to figure out. It's spelling them sometime hey?? LOL
IF Cytomel didn't interfer with your heart issues - consider going back on a very small dose.
Who Rx's predisone for one day? I was told by my pharmacist - you have to be on it at least 3 to 5 days before it actually starts to do it's job. Those "short" lengths are usually in very high doses too - It's like an army going in you and attacking whatever is hurting you. You must of been on one BIG MEGA dose.
Now - if these aren't issues - I would still consider going for extensive hormone blood work and saliva testing (24 hr ) only for cortisol. Another blood work up you might want to consider is a ACTH test for adrenal fatigue. Andrenals are little devils too - yet we need them to support healthy thyroid function. If they are not doing their job - your thyroid won't be doing it's job and you could still have close to normal labs with the thyroid if these buggers are causing problems.
Just something to consider.. Your a tough one to crack.. I hope what I said helps make sense.
I had extensive hormonal testing while in the CCU in Sept/Oct 2007. My adrenals, Cushing's Syndrome, etc. were completely investigated because they can aggravate the perimyo*. The only thing I had was a slightly low Ferritin level. That's resolved itself since then. My adrenals were also tested back in July by my current endo. My mother has Addison's Disease. I don't.
Traditionally, Prednisone was the drug of choice for perimyo*. It wasn't a huge dose though. However, that treatment has been replaced with NSAIDs. Sometimes a doctor will give the Prednisone initially do reduce the pain of perimyo* as it is a very painful condition - scale of 0 - 10, a 10. And the pain doesn't stop until the inflammation is reduced. It's an inflammatory condition usually caused by a virus, but sometimes bacterial. Mine was a virus. They switched my medication in the hospital to Indomethacin (from the Prednisone) which is a powerful NSAID. I went home on Ibuprofen and Colchicine.
Since I have an ongoing prescription for Cytomel with my current endo, I tried some for the past two days. I didn't notice any heart pain, increased HR, and/or irregular beat from it. It's a 5 mcg dose. I decided to stop it though and wait until after I see the new endo. I do feel loads better on it though. My fatigue and anxiety completely disappear.
I wonder if this could have any bearing on my current condition.
Before I got officially diagnosed with Hashi's, I was very ill and my TSH was 4.16. BUT ... I had hypothyroid symptoms. I had the same symptoms as now: lactose intolerance, aches and pains, muscle cramping, ringing in ears, ice cold with shaking chills and then sweating, exercise intolerance, dry skin, boils and ezcema, gas, bloating, diarrhea, nausea, constipation, vomiting (don't have that right now but would if I continued to eat dairy), itching skin, joint pains, swollen fingers & hands & eyelids & face, fatigue, exhaustion, insomnia, shortness of breath upon exertion, sinus dripping, blurry vision. The doctor back then tried lactaid on me and that made my symptoms worse. Then he treated me for an ulcer and I got 10 times worse. That was back in 1998/1999. They said I tested positive for Lyme's Disease and confirmed a 1st degree heart block (heart rate of 45) and put me on a course of IV antibiotics. All my symptoms subsided for about one year. I felt fairly good. I still had the fatigue though but it wasn't exhaustion.
I believe now, after all that I've read, that I didn't have Lyme's Disease. Most likely it was a false positive due to thyroid antibodies. I was never tested for thyroid antibodies. Some of the tests done in 1998/1999 were TSH 4.16 (nr 0.47 - 6.90), ESR 27 (nr 0 - 20) and ANA AB were positive at 1:640 (nr 1:40). B Burgdorferi IGG 43 (nr <15) - this is the one which I wonder was a false positive and really indicative for thyroid antibodies as it is an antibody test.
Anyway, I just wonder with my TSH being only slightly elevated and being so ill that maybe I need my TSH very low to feel good. Even when I was first diagnosed with hypoT, my TSH was only 6.55. I was very ill with some definite clinical signs and permanent changes in my heart rate. The doctor diagnosed me with "subclinical" hypoT. My current doctor believes it was more like overt hypoT with a TSH of only 6.55.
Shouldn't that affect the bottom line on the TSH now? I don't feel good with a TSH over 0.58.
Just a some thoughts. Maybe there's no correlation.
Almost all patients believe in a "feel good" TSH rather than just a number. Try to get that across 80% of the doctors we are being treated with though.
Definately all our bodies are unique and one size (TSH) will not fit all. Randomly, an average "good" baseline is estimated at 1.0 - but that may not work for all. You KNOW you are around .58 - so you need to use that TSH and try to remain consistant there to see if that truely fits you. If it does - than you need to base that as your Eurthyroid state.
Remaining at one TSH through is not natural - when we get ill with colds and monthly changes - that is why our hormones bounce around so much when we were healthy. But our bodies at that time controlled our hormone and could correct itself. Now that we are medicated our bodies depend on this to balance us out and not correct itself. The medication never changes in dosage so when our hormones are saying naturally "change" the meds do not allow it to do that. I believe then - your bodies "gets angry" with it and says - OK if you won't change - I'll give you something that will tell the brain I wnt to change." Then these symptoms come on. and the more we don't allow the changes the more symptoms come on.
Remember when you felt good before getting sick? Some days you had a ton of energy and others none? Some days issues were mountains and others mole hills? That IS natural. But being medicated doesn't allow this. So it makes sense our bodies constantly are fighting to communicate with the brain to do this and reacts symptomatically. This makes sense to me.
I am starting to learn about fluxuating my TSH with my days and using my meds to help me balance out. My MD has given me the Rx to take my meds in small increments through out the day depending on how I feel. I don't abuse his trust - I just pay more attention to how I feel and know what to do. It has helped me get better - but for so long I felt like he// and really damaged myself internally with digestion issues and other things.
It going to take a while to heal the damage done from the past.
Well I just think I found my answer for positive B. Burgdorferi IGG test back in 1999. This is what I found online issued by FDA Public Health Advisory in 1997:
"assays for anti-Bb frequently yield false-positive results because of cross-reactive antibodies associated with autoimmune diseases"
Ah hem ... there we go, an answer to my question. Although, I was never tested for thyroid antibodies, I guess I could consider this test the same thing. An infectious disease specialist told me I didn't have Lyme Disease. Wow! This is an eye opener.
I was just doing some reading too I do not the heart med you were on or are on.
Here is the paragraph
Lithium, used in the treatment of bipolar manic-depressive disorder, inhibits thyroid hormone release and can also result in a goiter. The heart drug, Amiodarone, also increases your risk of hypothyroidism.
I knew about Lithium and bi polar - This is was just part of the paragraph.
I was on Digoxin to keep my heart rate slow and Flecanide to prevent Atrial Fibrillation. Neither one interferes with Synthroid at the low doses they had me on at the time. If Digoxin is taken for long periods of time at higher doses, an adjustment in the thyroid medication might be needed. I was on the minimal dose.
Thanks for looking into this ... I love researching myself and have done about eight plus hours into this so far.
After reading more of my medical records, I think I'm leaning more and more toward having both Hashimoto's and Hypothyroidism. I think the hypothyroidism may be caused by the pituitary. I had lots of clues back in 2000 and doctors trying to cover up those clues with band-aids rather than to dig deeper and look at all the possibilities. At that time, I was erroneously diagnosed with Fibromyalgia. I don't have it. Both an internist and an endo said I never had it. If I did, I still have the symptoms.
According to my lab tests, I should have gone hyper after my TSH was 0.58 but I had hypo symptoms instead and my dose was increased. I think that's where my internist decided to pass the buck to the endo.
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