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Old 10-23-2004, 01:33 PM   #1
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Question New Labs, adding T3 - your opinion please

Hi Everyone,

It has been quite awhile since I have been here. I have had other concerns that had to take precedence and lots of researching – still at it. Since my ‘newest’ concern has many of the same symptoms as hypothyroidism and fibromyalgia/chronic fatigue syndrome, it complicates knowing what is causing what. Trying to get to the bottom of it all.

I was bitten by a deer tick this past spring (’04), right around the same time as I started thyroid treatment for Hashimoto’s (112 mcg synthroid). I felt awful/worse when going on the synthroid, but did not really connect it to the tick bite (at that time!), but didn’t think the thyroid treatment would be responsible for all the new symptoms and exacerbation of the fatigue, etc. Then the beginning of July I developed migratory joint pains with constant joint pains/arthritis in my hands/fingers and began to suspect Lyme disease from the tick bite. I am STILL researching that possibility (seeing different docs, doing different testing, waiting on results, etc).

Okay, with that being said – I was hoping I could get your input on my thyroid situation at this point in time. I just had an appt with my endocrinologist (he is one on the ‘top doc’ list). I explained to him that I am feeling better than when I saw him the time before, in July, but still have not seen enough improvement in the fatigue. I also told him that this Lyme disease possibility has entered the picture, which he said he knew little about. I told him it can cause many of the same symptoms as low thyroid, so not sure if that is coming into play and confusing the issues of treatment. In July, he decided to keep me on the same dose of synthroid: 112 mcg, my TSH had dropped from 6.27 before treatment to .03 after 4 months on the 112 mcg. At that time, since I was seeing little improvement, other than in hair growth and skin improvement and hyper symptoms were not too much of an issue, we decided to keep the dose where it was at until I saw him again in Oct.

A month later, mid August, there was some confusion about test results sent from my PCP from my lab here to the endo. Endo had ordered a.m. cortisol test and glucose and testosterone (investigating the possibility of PCOS as well as pre-diabetes). My lab goofed and never faxed him this additional testing – so when I discovered this a month after my endo appt., my PCP REsent the July thyroid results again WITH the new tests. I believe it confused the endo, thinking that these were new thyroid tests he ordered too from when I saw him in July and he sent me a postcard with an Rx to reduce the synthroid to 100 mcg, due to my low TSH. I contacted his nurse and tried to explain that he had told me at my appt, that despite the .03 TSH, I was to remain on the same snythroid dose until seeing him in Oct and he said we would reevaluate then. WELL, as it would turn out, I kept getting increasing heart palpitations and not knowing if it was tick bite related or overmedicated on thyroid med, I cut back the synthroid to 100 mcg and within 1-2 days, the palpitations stopped, with just a few episodes here and there since then – so at this point, I think the synthroid did need to be lowered.

My July Labs, after 112 mcg of Synthroid for 4 months (first started treatment 4/15/04):

TSH dropped from 6.27 to: 0.03
FT4 rose from .44 to: 1.04 (.58- 1.64)

My labs in Oct, lowered synthroid dose from 112 mcg to 100 mcg for 2 months:

TSH: raised to 0.19
FT4: dropped to 0.85 (range .58-1.64)
Total T3: 1.19 (range .87-1.78)

I told the endo that the fatigue was my main complaint at this point. I asked him if he felt my FT4 and Total T3 were too low. He said no. From all I have read on this forum and elsewhere, they look to me like they are too low (using the formula of adding the two numbers of the range and dividing by 2 as being the lowest advised). When I saw the endo in July, he brought up that we may need to add some T3 the next time he saw me, depending on the labs, so he would order a total T3 done before seeing him in Oct. I do not know why this endo prefers to measure total T3 instead of Free T3, but I know this is his normal procedure, from talking to another thyroid patient of his. I did have my Free T3 tested in March of ’04 before seeing this endo and before starting on thyroid treatment for the first time. At that time my FT3 was: 4.49 (range 2.39-6.79) During my July appt., I asked about Armour (that was when he brought up possibly adding cytomel at my next appt) and he said that while he does prescribe it, he only has about 6 patients of his taking it AND he has MANY patients - is not even taking new patients any more and has added another doc to his practice now. He explained that he likes to start with the synthetic drugs first and if they don’t help enough, then he is open to trying Armour. He is of the opinion of dose regulation being a concern (I am aware of the controversy over this and synthetics having the concern). I have read about how many people prefer Armour, but I am willing to try the synthetics first. Mainly, due to cardiac issues (fast heart rate, high BP, palpitations), I am a bit tentative about T3, synthetic or in Armour and wanted to see if T4 alone would help me enough first.

However, after 6 months on synthroid alone, I felt the current labs might indicate the need to add T3, so when he said we would leave my dose at 100 mcg synthroid, I reminded him that he had mentioned possibly adding T3 (cytomel) at my last appt and he then said we could try that. So he has prescribed 25 mcg Cytomel and lowered the Synthroid to 88 mcg.

My questions:

1) What do you feel about the Free T4 and Total T3 levels? (I know the response will be to have Free T3 tested instead, but as I explained above, he does not routinely test FT3) Do you feel these levels are too low?

2) If you feel the FT4 is too low, will this become less significant with adding the T3?
Raising the T4 (synthroid) does not appear to be the answer or possible in light of the fact that a higher dose of synthroid was too much for me, causing very noticeable palpitations. I also had very increased sweating (have always had a problem with this – but it was exacerbated when going on synthroid – again – this could be related to the tick bite and I was also bitten by a stray cat, which could be another cause – It is my year – I don’t remember saying ‘bite me!’ – although I have felt like it at times ). I also was feeling overly anxious at times – so did seem to be showing hyper symptoms, which have all improved.

3) Will the addition of T3 possibly make the difference in terms of the fatigue?

4) I know that T3 may cause cardiac issues. Is 25 mcg a low enough starting dose in light of my history of fast heart rate, high blood pressure, and palpitations?
(My high BP is being treated with a low dose BP med, enalapril, which does not lower the heart rate. Also, my systolic has improved since being on synthroid)

5) Is Cytomel one of the thyroid drugs that I have read mentioned might be better to take in divided doses over the day? (twice instead of all in one dose)

I will be starting the cytomel and lowered synthroid dose in 3 days, once my Rx of 100 mcg dose is used up. If I have problems with this new regimen, do you feel it might be time to try Armour? Endo does not have me retesting blood for 6 months, when he wants to see me again. He said since we have to travel to see him, he did not want to inconvenience us over winter/difficult roads. We told him this was not a problem, however (I have another doc I have to see in the same area anyways and get them scheduled during the same trip). I asked if he wanted to at least test blood before then with adding the cytomel and he said no. He said he would prefer that I call and discuss any symptom problems if they develop, etc. I imagine he will test accordingly if the need arises.

Thanks so much for any input you can offer!

 
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Old 10-24-2004, 06:59 PM   #2
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Re: New Labs, adding T3 - your opinion please

Bumping this up for you.

 
Old 10-24-2004, 10:51 PM   #3
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Re: New Labs, adding T3 - your opinion please

Hello again, Peeps!
I'm so sorry you continue to have problems. I can't begin to address all your questions, because I know nothing about tick-borne disease, nor its implications with thyroid function.

But I can tell you that your FT4 and TT3 are too low. They're both below the mid-range, and that's the likely cause of a lot of your residual symptoms.

As for trying Armour, I'm of the opinion that Synthroid isn't doing you much good. Cytomel might help, but Armour might work far better... or it might not be good for you. But you won't know till you try. If what you're doing isn't working, it's time to try something different.

 
Old 10-25-2004, 07:55 PM   #4
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Thank you, Midwest and ConcernedMale

Quote:
Originally Posted by midwest1
Hello again, Peeps!
I'm so sorry you continue to have problems. I can't begin to address all your questions, because I know nothing about tick-borne disease, nor its implications with thyroid function.

But I can tell you that your FT4 and TT3 are too low. They're both below the mid-range, and that's the likely cause of a lot of your residual symptoms.

As for trying Armour, I'm of the opinion that Synthroid isn't doing you much good. Cytomel might help, but Armour might work far better... or it might not be good for you. But you won't know till you try. If what you're doing isn't working, it's time to try something different.
ConcernedMale, thank you for bumping this up for me. I appreciate it.

Midwest, thank you for your reply.

It was surely bad timing (no good timing however, LOL) for me to have to add the possibility of Lyme right at the same time I started thyroid treatment, throwing that into the mix. Unfortunately with Lyme, there is no really reliable test for diagnosing the disease, like there is with thyroid problems. Makes it very hard to know if one does have it or not. The diagnosis has to be made on clinical findings, using the test results only as 'supportive' to the diagnosis, but tests cannot be used to rule it out. Adding to the problem is that SO few docs are knowledgeable about diagnosing and treating. The longer it goes untreated the worse the outcome for treating it successfully, the sicker one can get, so that adds an urgency which has already flown out the window, in my case - not unlike many.

Also, hormones come into play with lyme - thyroid included. It really is a topic that belongs on a thyroid board too, as Lyme can be misdiagnosed as thyroid problems 'alone,' missing the lyme diagnosis. Lyme can mimic SO many diseases, as it can invade any body system - MISERABLE disease all around! I have thought of the many people in the thyroid community that could have Lyme coexisting with their thyroid problems. If one lives in an endemic area, it is good to be aware of the possibility. Most people that have Lyme don't even have a recollection of being bitten by one of these teensy deer ticks - so small that they can easily be missed and they also inject a substance that keeps their bite from being felt - what a combo for going undetected! The one (nymph stage) on my leg was the size of a poppy seed.

With your nickname of Midwest, it sounds like your location may warrant you being on the lookout, should you be exposed to deer ticks. I live in the country and we have deer in our yard all the time (deer are a host of the tick - amongst others), have a cat that hangs out in the tall moist grassy areas where the ticks are. I removed one that was attached to my leg this spring and found another that had either fallen off of me or my cat, that was fully engorged and had then dropped off. My cat has brought home several more that I have found walking on him, before they attached - but who knows if there were others this year or over the years that I have been bitten by. One also has to wonder when my FMS diagnosis goes back 13 years and the symptoms of lyme are the same, plus more, depending on the severity of the case and which systems are under attack. I also got very enlarged lymph glands on one side of my neck and face and a distended upper abdomen, which appears to have been my liver, as I also then had 2-3 times elevated liver enzymes - both of these occuring within weeks after the tick bite. I got a very large spreading atypical rash on the same leg as the tick bite, but not at the bite site, that may or may not have been a lyme rash. Felt very ill, terrible fatigue, etc. All this occurred when starting the synthroid. Also got that cat bite, which can transmit a bacteria called bartonello, as can the deer tick (deer ticks can often transmit more than just the bacteria that causes lyme). Then 3 months after the tick bite, I awoke with sudden on-set arthritis, could not bend 3 fingers on both hands more than half-way when I woke up and this has continued every morning since. Had other 'migratory' in nature, joint pains, as well. My hands are stiff all the time, but the worst period of time is upon waking (like rheumatoid arthritis, but rheumatologist does not feel it is RA).

SO as you can see - at this point, it is hard to know if it is thyroid or other conditions causing the continued symptoms that 'can' be associated with all of these different health problems. I still suspect at least a portion of it to be thyroid related, due to my T4 and T3 test results, though.

How are YOU? I hope you are finding good results with your thyroid treatment at this time?! Update me if you have the time. I would like to hear how you are doing. As I said, I have not been around the boards here, with all the other problems to deal with, so have missed hearing how you and others are doing. I still run a site for one of my other health problems, so I just can't keep up with all the health issues and research on them anymore

Take care!!

 
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