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HASHIMOTOS..WITH GRAVES SYMPTOMS
by Sheila669, Nov 10, 2009 12:21AM
I have hashis, no Graves antibodies but Graves symptoms all of a sudden after being hypo since 1993 and ths past spring diagnosed with Hashis...did well on meds till a lil over a couple months ago. My question is mY DOC does not know why I m hypo/hyper said my labs do not make sense. On low iodine diet now to prep for an uptake scan. So to prep for this was taken off my T4 ( Levothyroxine ) and only on a low does of T3 ( cytomel ) for soem reason on T4 I go into hyper and they have no clue why when TSH is high...as of the last few days of being on my T3 I have started having the heart palps and high BP again.I have been on the T3 alone for 2 weeks now and do not understand why I once again am having slight storming symptoms. I have met so many people on here that are so wonderful, but I do wonder if anyone has ever gone through this as well.I feel so scarec and alone cause I am not getting answers. I hav eyet to meet someone with Hashis that has not been diagnosed with Graves antibodies as well with these symptoms...how could this be happening with no Graves antibodies...Any info or help would be so much appreciated!! THANK YOU
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People with Hashi's will have some of the Graves symptoms (at least the symptoms of being hyper) because as the immune system kills the thyroid, the thyroid fights back by spitting out more hormones, thus making you go back & forth from hypo to hyper. I've read that is pretty "normal" for Hashi's, to end up with levels which are out of whack from one day to the next, which completely stinks!!
I'm a Hashi. I thought I had Graves last spring. I went hyper for two straight weeks. Pure hell. As the thyroid and antibodies duke it out, we get these nodule bursts that leak hormone, causing us to swing back to hyper. I have been steadily increasing my Synthroid and adding Cytomel as well. With enough thyroid medication, the nodules should shrink. Mine shrunk to pencil points. The largest was one cm.
Your hyper phase should pass, but if the nodules are big, then it may take a while.
I don't think you should be switching up and down with the thyroid drugs, but I certainly understand why you'd cut back. Hyper mode stinks!
Another thing I've noticed, as well as several other Hashis I've spoken to. We seem to have more hyper symptoms during our periods. I spoke to a woman who had a full hysterectomy, and she still goes hyper during her normal cycle time, even though she doesn't have a cycle. My endo suggested I cut back on meds during those times, but go back to my stronger dose after my period.
:) Tamra
There's not much you can do at the moment since you're preparing for the scan. T3 meds and levels of FT3 that are too high for you individually contribute to palps, HBP, etc. How much T3 are you taking, and do you split the dose?
When your scan is complete, be sure your doctor is testing FT3 and FT4. Always get the results of these (along with their reference ranges) to keep in your records. A history is invaluable when future adjustments are made.
Pituitary resistance is untreatable...you simply ignore TSH. In a way, it's kind of a positive thing...doctors have to treat based on FT3 and FT4 in my case, and that's what they should be doing anyway. High TSH, if not accompanied by low FT3 and FT4, is not a problem. High TSH is only a problem when it is truly indicative of hypothyroidism.
However, take my numbers as an example of when high TSH is NOT indicative of hypo. My TSH stays around 20 (which looks hypo as hypo can be). However, my FT3 and FT4 are both in reference range, and what's more important, I have no hypo symptoms. So, TSH testing is pretty much useless for me, because it does not indicate hypo. High TSH, per se, does not do any damage. It's only when it reflects low FT3 and FT4 that it damages the body.
Brain fog is another symptom of hypo and why you're not able to concentrate.
If my memory serves me, bradycardia (low HR) is defined as a sustained resting HR less than sixty. Both your HR and BP look really good at the moment.
One of the big problems with diagnosing thyroid problems is that many symptoms are common to both hypo and hyper. They seem to be symptoms of "thyroid not right" no matter which direction that may take.
RAI and/or surgery is seldom recommended for Hashi's, except when the circumstances are "dire", i.e. swallowing and/or breathing is being impacted. Try to relax and cross that bridge if or when you come to it. No, if he does recommend either of those two options, I'd first research as much as possible (I know it's hard when you don't feel well) and get opinions from others who have been there. We have lots of members on the forum that have had RAI or surgery. When you've had your scan and talked to your doctor, you can ask other questions, and they will help you to understand.
My scenario was a little bit different from yours. My PCP popped me right onto a very high (for me) dose of levo and just about killed me. However, the good news was that my symptoms disappeared very quickly. So, I had to do a lot of research, but at least I wasn't feeling hypo at the time. I have a congenital heart defect that makes me prone to tachycardia, and the levo made that much, much worse. So, I was miserable because of the tachy, but not hypo. She kept increasing my dose of levo, telling me the levo had "absolutely nothing" to do with the tachy. I finally said "enough!", found this forum, and with the help of many great people, found myself a great endo and finally got things on an even keel.
Sometimes the antibodies take years or even decades to destroy thyroid function. My endo recently said that it's quite possible I've had Hashi's for 20 years. Other times, it can happen like gangbusters. There are also phases where the destruction can speed up and slow down. I'm actually hoping my thyroid has finally "died"...I've been on the same dose of meds since the first of the year, so it's looking like the destruction may be complete (knocking on wood here). In some respects that makes things a lot more stable since I am now on 100% replacement, and my thyroid is probably contributing little to nothing.
However, while the thyroid is still functioning somewhat, the hypo should still be able to be controlled with meds. Your doctor has to test FT3 and FT4 (and TSH) every time you have bloodwork done, and he has to use FT3 and FT4 to adjust the meds so that your symptoms are relieved. If he can't or is unwilling to do that, you might have to find a new doctor. I'm continually amazed at how ignorant most of the medical community is about thyroid issues. Finding proper meds levels for thyroid patients is a real art, and you have to find the right doctor to do it.
What would I do? Well, I'd have the scan. Then, I'd talk to my doctor to get his interpretation on the scan. Then, I'd ask questions here and do research on what you find out from that. Assuming for the moment that the scan confirms Hashi's with no other complicating factors (like a separate diagnosis of Grave's), I'd then make sure my doctor was testing and prescribing based on FT3 and FT4 and NOT just TSH. Hashi's CAN be controlled with meds in almost all cases...you just have to find the doctor who knows enough about thyroid to do it. In larger metro areas, you might actually find a "thyroid specialist". In smaller areas, you want to at least find a "generalist" (someone who's not just interested in diabetes).
It all takes time, and we all have to experiment to find out where we feel best. But, there's no way around that and no way to rush it. Having the right doctor to work with and educating yourself as much as possible helps tremendously.