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!