General Medicine

» kaicee118 - Muscle Aches

In response to Muscle Aches posted by daisyelaine:

Thanks again for the info, Elaine. I have a little more info for you (am receiving it in dribs and drabs from the doctor's office - I see the doctor on 1/9). I don't have the numbers in front of me, but my T4 is now in normal range and T3, I think, is close to normal. So I'm euthyroid, but not hypo. Still, the body aches persist.
My antibodies are still abnormal - in September TPO was 103 and TSI 116. They are a bit lower than that now, but still not normal. Will it take a while for them to normalize, like the TSH? Am I still considered "euthyroid" if the antibodies are high? Can abnormal antibody counts cause fibromyalgia-like pain?

I should add that I'm only taking 10 mg of Tapazole. The hormone numbers seem to be coming down steadily, if a bit slowly. Any input you can give is greatly appreciated.

-- posted by kaicee118

» Elaine Moore - Muscle Aches

In response to Muscle Aches posted by kaicee118:
Hi Kaicee,
You're considered euthyroid as soon as FT4 falls within the reference range regardless of TSH or thyroid antibody levels.
Thyroid antibody levels do fall slowly. Since they're proteins they remain in the blood circulation until they're broken down into amino acids and excreted. Once in the circulation, they persist for 2-3 months. As long as your immune system is healing and producing smaller amounts of thyroid antibodies your thyroid antibody levels will fall.
Because they fall slowly, they're usually tested every 6 months or so.
You mention T4 and T3. These levels are often falsely elevated in women especially women on oral contraceptives or estrogens. These levels measure inactive hormone, the hormone molecules that are linked to protein. The particular protein that hormones are linked to rise as estrogen levels rise.
It's better to have levels of free active hormone with the FT4 and FT3 tests. These levels are better indicators of your thyroid status. If these levels are within range but even slightly lower than what your optimal levels are, you can have symptoms of fibromyalgia.
The recommended maintenance dose for Tapazole is 2.5-10.0 mg daily, and some people get by with even smaller amounts, for instance 1.25 mg daily.
You want to be on the smallest dose needed to keep FT4 within range, but near the high end.

Muscle aches are listed as a side effect of ATDs but they're most likely to occur when the dose is higher than needed. Hope this helps, Elaine

» marnie1988 - Advice please -Stressing!

In response to Advice please -Stressing! posted by daisyelaine:

I am new to this cite and so glad that i started to research my disease. I was diagnosed 10 years ago, and took the medication that starts with meth... until i got pregant in 2003 and was switched to PTU. I decided to get a second opnion from a leading doctor in this field after being with my not so personable doctor for 7 years. When i went for the 2nd opinion in July, he told me to stop taking my PTU for 8 weeks then come back for bloodwork so he could dtermine if i had the disease or not. So I did. When he tested me it came back normal, he said i did not have Hyperthyroidism, Graves Disease, which was my original diagnosos. I was so pleased. About a month ago i started to feel really irritable but REALLY!! I would go off so easlily on my husband, my poor husband has put up with my craziness. Anyway, my point is, I went tp get more bloodwork done last week, I just got the results the labs came back normal, the actual labs are: TSH-0.7 and Free T4 1.2. Can this be? I thought for sure the doctor made a mistake. CAn I be cured after all these years? I don't know why I feel so sick.

-- posted by marnie1988

» u25000 - Recurr Quest re Graves a/rai now lt4

1.Hair loss: pharm recomm synthroid when asked for levoxyl (generic was causing many symptoms).I read about hair loss, he said same w/all. I'm really losing since started mid Nov,lost much then, now again early Jan. This disease is so depressing. Any advice.
2.Antibody tests: someone at webmd has adamantly stated retesting a/diag not necess. Rep Endo does not plan to do any tests per consult w/him. $300 for me too. Who would test for me? Should I do them espec as I'm TTC. I'm confused w/how and when I should care and benefits.
3.TED: Don't hi AB levels effect TED. Rai 9/03 Eyes changed 3/05 slightly but evident in pics, retracted left lid-some pain; lagging right lid-will this improve. I hear 2 year hot phase; anything to help if no change.
4.Immuno: Is there any chance being Hypo low range,or having Graves ABs inhibits my fighting off colds even a/zpak 7th day still lots of mucus, cough-cold ongoing for past 5 weeks.
5.TTC: Prev I had mentioned I was okayed to conceive w/tsh -.01 ft4 1.37 in 2004 but no preg, do you think I literally could have been too lowrange or more likely other factors. No meds were given. Might clomid have been my best option, I was leary as I was still focused on thyroid problem(tsh). As you state the TRab's are the likely cause for suppression of tsh a/rai; I'm just trying to figure out what likelihood of poor management of thyroid vs antibodies vs other infertility factors may have been cause of no preg, ironically I did conceive as my tsh finally elevated 2005 to 2.58(Jul) w/an ft4 .81(May) to .91(Sep) (my luck it wasnt tested when tsh was) and no meds. So I was convinced that it had to do w/tsh finally elevating and being inrange at conception. But now I'm understanding prob could also be low range ft3,4.
6.TPOab: I'm aware this ab can double risk of m/c, which is why there is concern for women TTC to monitor ABs and treat w/asp or heparin, however I thought my disease being diag p/TSI and at that time TPO was 11 (0-35) that I don't have Hashi and therefore shouldnt be concerned, webmd says same-no need to test for other ABs as I have a diagnosis. My concern to test for others was related to TBII (blocking TRab)effects but I keep hearing of TPOab when discussing "Graves" so please clarify, might this be serious for me to have tested (even by self). I'm currently taking 81mg asp every other day based on concern of this and APS.

thank you.

-- posted by u25000

» Elaine Moore - Advice please -Stressing!

In response to Advice please -Stressing! posted by marnie1988:
Hi Marnie,
Graves' disease is a self-limiting disorder so it's not unusual for your labs to have returned to normal.
The course with Graves' disease varies with each of us, but in general, periods of symptoms alternate with periods of remission. And the predominant symptoms can change over time.

Many of us with Graves' disease notice the worst symptoms when our thyroid hormone levels change abruptly. It could be, depending on the PTU dose that you were on, that you were hypothyroid while on your last regimen of PTU. I suspect this because your FT4 now is on the low side (usual range 0.8-2.0 ng/dl). Whenever people stop meds or lower their dose it's common to have some transient hyperthyroid symptoms even when hyperthyroidism isn't present. This is just the body's way of reacting to the change in levels. Thyroid hormone is very potent.

Several studies show that it's common for patients in remission to have these symptoms early on, and the authors of the studies caution against suspecting a relapse of Graves' disease too quickly. The recommendation was to wait 6 months before considering relapse after stopping meds.

In the meantime, many patients use the herbs bugleweed or lemon balm to reduce these transient symptoms. Most commonly, a tea made of these herbs is used on as needed basis. If you were to have cardiac symptoms, such as an elevated heart rate, you'd want to ask your doctor about using beta blockers.

Most people achieve remission while on meds within several years, and relapses can occur during the postpartum period or in cases of stress, particularly the stress associated with bereavement. If relapse occurs, methimazole or PTU can be used again until remission returns. Your course is pretty typical but you were probably diagnosed earlier than many people. Hope this helps, Elaine

» Elaine Moore - Recurr Quest re Graves a/rai now lt4

In response to Recurr Quest re Graves a/rai now lt4 posted by u25000:
Hi,
You have to remember that some websites base their recommendations on cost-cutting measures that keep insurance companies happy.

The general rule is that thyroid antibodies should be tested at the time of diagnosis to confirm that hyperthyroidism is autoimmune and caused by Graves' disease. More than 90 percent of people with Graves' disease have TSI and the others have thyroid growth immunoglobulins (TGI). In addition, up to 90 percent of patients have TPO antibodies, and 70 percent have thyroglobulin antibodies. These are markers of ongoing thyroid inflammation. Although nearly everyone with Hashimoto's has TPO and thyroglobulin antibodies, they are not specific for Hashimoto's. Many doctors get confused about this.

After RAI, your thyroid antibody titers rise dramatically and they generally stay elevated for many years. RAI itself can cause diminished fertility, but in many cases the subsequent hypothyroidism is what causes infertility.

The antibodies in APS are lupus anticoagulant antibodies. Thyroid antibodies don't cause APS. However, antiphospholipid syndrome (APS) are more common in patients with autoimmune thyroid disease.

TSH levels fall when TSH receptor antibodies are present so it's possible that when your TSH rose in 2005 it was due to a decline in TSH receptor antibodies. However, with your low FT4 of 0.8 you may have just been hypothyroid.

I wouldn't waste time trying to convince your doctor to order thyroid antibody tests now because you already know ways of lowering thyroid antibodies (keeping high normal thyroid hormone levels, helping your immune system heal). You should, though, have cardiolipin and antiphospholipid antibodies to see if you need to be on heparin or aspirin for APS.

Also, when you become pregnant you would definitely want tests for TSI in the first and 3rd trimesters because these antibodies can cross the placental membrane causing transient neonatal hyperthyroidism.

Hair loss is very common in hypothyroidism. At 6 years after RAI, the average dose of replacement hormone is 0.175 mg (175 mcg) of levothyroxine. And by 6 years post RAI, most patients need both T4 and T3 replacement hormone. You want to make sure that your are being tested for FT4 and FT3. This is more important than thyroid antibody tests right now. Make sure FT4 and FT3 are at least at mid-range and ideally closer to the high end of the reference range.

Once you get your thyroid levels where they need to be, ask for estrogen and progesterone levels. These hormones are influenced by your thyroid hormone levels so wait before having them. If these levels are off you may need other replacement hormones. And Clomid is an excellent fertility drug. Best to you, Elaine

» marnie1988 - Advice please -Stressing!

In response to Advice please -Stressing! posted by daisyelaine:

Elaine,
Thank you for that info, but would you suggest that I continue to stay OFF the meds, PTU and continue to get labs every 6-8 weeks to see if my levels go back up (meaning remission), than go back on the meds if they do go up. I will of course consult with my doctor, but as you probably know its also good to do some of your own research, my doctor seems to have a one track mind, "stay on the meds". I don't want to if i don't need them.
Marnie

-- posted by marnie1988

» marnie1988 - A question about the integrationist doctors you mentioned

In response to A question about the integrationist doctors you mentioned posted by Calypso0317:

I don't have any info for you, but i just wanted to say that I agree with you and am also beginning my research for an integrationalist. I may start with calling several acupuncturists, since they are alternative professionals they may be able to give a lead on some docs they know.
Marnie

-- posted by marnie1988

» HCwriter - NO SEX DRIVE freaking me out!

In response to NO SEX DRIVE freaking me out! posted by daisyelaine:

When you say "high" end of the reference range, you mean more towards the "hyper" side of the normal range - correct? Thanks.

-- posted by HCwriter

» Elaine Moore - Advice please -Stressing!

In response to Advice please -Stressing! posted by marnie1988:
Hi Marnie,
A large nutrition study showed that most normal adults have a TSH level between 0.3 and 1.0. The antibodies that cause Graves' disease falsely lower TSH. With your TSH being normal 8 weeks after stopping meds, it's likely that you are no longer producing these antibodies and are indeed in remission.

I'd definitely stay off the meds because you don't want your FT4 to fall any lower than it is. It would be good if you could also have an FT3 level the next time you have labs. About 20 percent of patients with GD spontaneously move into hypothyroidism and you want to make that both FT4 and FT3 are within range. If your next FT4 and TSH are about the same as your last results, you could get by with repeat tests every 6 months or sooner if symptoms change, especially if your heart rate were to increase. Best, Elaine