BellaOnline Forums Health and Fitness Thyroid Health New to forum, recent incident with dosage change

Hi, I was glad to find this forum as I know how important it is to have even one person to talk to and bounce ideas off of with medical issues. I've been taking Synthroid for 30 years for Hashimotos and am 45 years old and have never had any problems, have gradually decreased my dosages over time. Then recently I ended up at a place where my T4 was too high at .112 (1.9) but my TSH was too high at .100 (6.1). So my doctor suggested trying alternating dosages each day. I was hesitant, but thought it wouldn't be a big deal -- boy, what a mess! After one week I started feeling like I had a stomach flu and by the time I realized it was my thyroid going crazy (rounds of cold sweats, trembling, heart racing, huge anger, muscles all hurting, not sleeping) I had to go to the ER. So my doctor said to go to the lower dosage, which seems logical. I was out of work for 1 1/2 weeks because of not being able to walk from the muscle pains in my legs and muscle weakness. Gradually it improved enough for me to get to work, but it's a rollercoaster. The problem has been that it's been 3 weeks now and I'm continuing to have a lot of muscle problems, especially with any exertion, and it's gotten to the point where I can't walk at all from the pain in my legs if I walk too much, stand too much or walk uphill. That goes away once I lie down and take it easy for a day, but it's scary and awful to not be able to walk. I've also had a couple of bouts of depression that were sudden. They were gone by the next day, then later I'd be very happy and relieved. Everything is all over the place. I contacted my doctor to ask if there's anything else I should be doing, should I be seeing an endo, etc. and he said I should consider Prozac (!!) -- completely ignored my muscle issues and questions. It was terrible to get that message. Today I noticed my thyroid looks distended slightly in the front. That scared me and I'm trying not to be anxious. I have now looked up the endocrinologists with Kaiser and am going to ask my doctor which one he would recommend, although my guess is that he will fight it. I do realize I need to wait 8 weeks for levels to stabilize, but it's all disconcerting -- I feel in the dark. I've seen others with similar muscle issues and I know from some studies I've seen on pubmed that muscle problems are common and can reverse when the levels are corrected, but I'm worried about whether there is a red flag I'm not addressing. If my thyroid appears to be slightly swelled, would that make sense with what feels like a fluctuating between hypo and hyper? The thought of dealing with doctors that are trying to medicate me with Prozac is awful. I'd rather avoid them, but today was the first day I noticed the swelling. It's possible it's been there all along (the 3 weeks) since I've been avoiding looking at it or touching it just to not freak out. Anyway, thoughts are appreciated. Thanks, Vic2009

Well, things got much worse last night with my heart pounding and my muscles going crazy -- I was up the entire night except for one hour, sweating and my mouth completely dry. My doctor now has agreed to refer me to an endocrinologist (after many requests now over the past month) and I went in and saw a different doctor (not an endo but a nice woman physician, because of all my symptoms) today who tested my TSH and FT4 levels. She said the thyroid was not swollen, as far as she could tell, but my husband and I both think it might be. I'm worried I'm going to have another disaster night. Last time, a month ago, it took several days to be able to sleep through the night again after this happened. Here are my level in the past several months since Nov of last year, the same time when I was diagnosed with a B-12 deficiency, so that was a mess from Oct - Dec. Sorry it's hard to read . . . TSH -- (Range 0.10-5.50 uIU/mL) FT4 -- (Range 0.8-1.7 ng/dL) date........TSH....FT4........dosage 11/17/05....2.3..............? 06/17/06....2.2.............112 10/06/08....0.8....1.7......112 10/19/08....3.6.............100 11/26/08....5.4.............100 12/03/08....6.1....1.6......100 02/17/09....1.08....1.9.....112 So I'll find out my new levels soon. Thanks, Vic

Hi Vic2009,

Both your elevated T4 and low TSH indicated over-treatment and need to decrease your dose of hormone replacement. Your doctor was wise in doing so because medication induced thyrotoxicity (too much thyroid hormone) can cause a lot of problems over time such as heart arrhythmias and bone loss. A lot of thyroid patients especially those with Hashimoto's-caused hypothyroidism, need dose adjustments over time. Usually dose increases but decreases being needed is not nearly as common. Your doctor should watch this closely because some patients transition over to Graves' Disease (autoimmune hyperthyroidism) over time but is not common.
It sounds to me at first glance that you're experiencing adjustment symptoms to the dose change. This is a common phenomenon and one I've personally experienced myself. My adjustment symptoms can include anxiety as yours have.
This is my lay-opinion but I personally feel people undergoing dose changes, experience more adjustment symptoms with the alternating dose type regimens than they do with a simple decrease in an everyday dose (taken each day rather than every-other).
I feel with time and with getting a leveled-out dose that places your thyroid hormone at a better level, you'll see those adjustment symptoms resolve. It also could be that the alternating dose method was a little too quick of a decrease and needed done more gradually in your case.
Your doctor will be blood retesting your levels as you go through the dose adjustment which will also monitor for the possibility of you heading toward hyperthyroidism, which would mean needing to eliminate thyroid replacement completely.
You might need some as-needed anxiety medication during the adjustment which can also help with the heart palpitations.
Keep us updated as you go along if you can and best wishes with it!

I have been on synthoid for about 10years. its not been a stable experience but its manageable. but now im learning that gluten intolerance could contribute to thyroid problems. Gluten is mostly found in wheat, rye, barley, and sometimes oat products. Anyway...could you have any connection to food allergys? or have you ever heard of this?

Thanks for responding. Yes, I've tried going off gluten to help with a stomach issue I had, and it did help slightly, but it did not make a meaningful difference for me in general. Years later, when I got pneumonia, I was given a strong antibiotic and that cleared up my stomach problem almost completely. That problem had started with an antibiotic, and ended with one after over 5 years of digestive misery, so I concluded it was intestinal overgrowth. I'll write more about my visit to the endo I saw later today, but one potential cause now arising is malabsorption, given that I also became deficient in B-12 last year and that is the best possible reason. He said that malabsorption with thyroid will cause problems because although you can absorb it initially, it then doesn't stick around.

Thanks Jim, for your response. My thyroid results, 3 weeks after starting on .100 came back normal, which was a relief -- T4 FREE 1.6 (0.8-1.7 ng/dL) TSH 3.06 (0.10-5.50 uIU/mL) I was able to get in to see the endocrinologist today. What was interesting was that he felt that most of my symptoms -- muscle weakness, cramps, awake at night, hyper, sweating at night, cold/hot -- were not indicative of a thyroid cause! He said that muscle weakness was not typical of thyroid, yet I see that complaint all over the internet. Nonetheless, he is highly intelligent and we discussed other possiblities for quite awhile. He wanted to test me for Addisons with a test that would involve injecting something to see how much my adrenals could put out. I told him I would need to put that one on hold because of all the stuff I've been through lately. He ordered a test for magnesium and something else, and he also suggested the possiblity that malabsorption may be the cause, given that I have a B-12 deficiency. He said that if I had malabsorption, that would basically not allow thyroid to be reabsorbed. He also noted that the 6.1 TSH finding seemed wrong to him. Interestingly, that was when I was eating cereal with my dosages because I had just started B-12 and it was giving me so much anxiety and racing heart that I felt like I would have a heart attack taking the synthroid in the morning on top of that, and would escalate it all. I realize now that I shouldn't have done that, but at the time, was only concerned about surviving the mornings. By afternoon things would calm down. So we're working through tests. My most recent "new" symptom is breathlessness with walking and then on and off all evening after that. I noticed this yesterday -- after walking 5 blocks I ran out of air. I can take full breaths, but not enough air somehow. I'm also have tons of palpitations but have an EKG and event monitor scheduled for Friday. Looking over things online I was reminded that I had been diagnosed with Mitral Valve Prolapse for most of my childhood up through my late 20s but then was told I no longer had it. Apparently MVP can escalate the incidence of palpitations. Jim, you're really doing a great service here, providing this support. I've been on several other forums (for B-12 and political ones) and your tone, consistency and commitment are very rare. I really appreciated your ideas on not allowing a forum to become competitive, in a way, and protecting people from what can so often happen on health forums. I also appreciated your comment about over-treatment, which is helpful for me to hear on this current dosage. I was able to sleep for 7 hours last night, only woke up twice, but once drenched in sweat, so I'm hopeful tonight will be uneventful also. One last thing I wanted to mention was that despite all this negative stuff with the dosage change, as soon as I lowered the dosage I realized I wanted to READ again, and that previously, I just had been too amped to really long for reading books. Instead I would always want to be online. But on the day I started the lower dose, I immediately ordered some books, something I hadn't done in forever. Thanks for your support, Vic

5 years ago I was told I had hypothyroidism & I hven't felt well since. I have been having problems with my legs & I am unable to walk far. My calves tingle, ache & tighten up depending on the time of day. From what I have researched many have this proble & dr seem to ignore it. I fee it is due to the medication. Last dr said I had high blood pressure & this was creating a problem with the arteries therefore the leg problems. I didn't have high blood pressure until I started taking the synthroid (on generic)& this is a side effect of the med-can't seem to find any help last endo visit was told all is ok he couldn't help-I asked about different meds that I read research on he said each time there is research there it another to contradict it Hope someone can understand this & give me some advise-Thanks

Thanks Jim, you seem to have some insight that is on target. The latest test results -- VITAMIN D, 25-HYDROXY 25 (30-100 ng/mL) PHOSPHORUS 6.0 (2.7-4.5 mg/dL) MAGNESIUM 2.3 (1.7-2.3 mg/dL) With Kaiser Medical you get test results directly on the website and then the follow up is with the doctor after. So far I have not heard back from either doctor although I emailed my doctor this morning. I know that there is an interaction of all these but it seems pretty complex so I'm hoping the endocrinologist will be able to sort out what's what. I sat out in the sun for hours yesterday in the late afternoon as soon as I saw the D result. I do take a Cal/Mag, although only just recently, and stopped for awhile. But then with the Magnesium that high, maybe I shouldn't include that and just take calcium and D. Today, the EKG, scheduled already from earlier. I'm still having a lot of palpitations and now, when lying down, chest pains. That could all be nothing, or not unusual given everything else, but combined with the breathlessness and weakness all over, I want to get my heart checked out. I agree with your points about advocacy. It's hard when I get doctors so negligent over and over at Kaiser and I keep feeling like I will be considered nuts to keep changing doctors, but at a certain point, when a patient complains of breathlessness, with a history of a B-12 deficiency and a doctor says, "I'm aware," and does nothing, it's really just wrong. Thanks Jim.

Listening,

When there's malabsorption of the intestine, it can cause several types of malnutrition including anemia from lack of B12 being absorbed. The B12 is hindered due to lack of a protein called "intrinsic factor" that antibodies attack just like they attack proteins in the thyroid gland causing problems in it.
I have offered the input to fellow patients for years, telling them that when their thyroid medication isn't working well or they have a bad reaction to it, they need a thorough blood work-up (like I told MWE). This is because a weakness in the blood due to anemia or malnutrition, can make thyroid hormone medication less effective until this type problem is fixed. I also believe this is true of severe adrenal fatigue/exhaustion. Lack of adrenal hormone "cortisol" can hinder effectiveness of a thyroid dose because T4 hormone depends on cortisol for effective metabolism of it into the also needed T3.
These are the type things many doctors don't bother to test for when a patient is having difficulty adjusting to a thyroid dose but should be protocol in my opinion.
Lack of absorption in the small intestine can affect a lot of things, including absportion of medications as well, so blood retesting and monitoring symptoms are important. Some patients who have serious problems with it are given their meds in liquid form or intravenously but is not common. Usually it's just a matter of giving them high enough doses.
Hair loss is a symptom of anemia, especially large amounts coming out. It sounds to me like your doctor recognized your problems and is monitoring them. If you do feel he is not ordering a test you might need or a retest needed sooner than scheduled discuss that with him and I'll bet he'll work with you on it.
Here's an article I wrote on this subject a couple of years ago>Things that can Hinder Hypothyroid Treatment