I had a hugh hashi flare in December (TSH .28), and endo has been lowering my dose to .375. It has been 10 weeks on the new dose, and my TSH is .64. Endo says that's still a little low. I have terrible migraines and when I take the meds in the morning, I get shaky and spacey. Lots of thigh pain and feels worse when climbing stairs. I'd like to lower my dose some more, but am a little scared. Please offer any comments. Thanks.
Is your endo monitoring FT3 and FT4 and basing your meds adjustments on those or just on TSH? It might be a good idea to call and get copies of all results for your records if you don't already have them. TSH is a pituitary hormone and doesn't indicate thyroid function anywhere nearly as well as FT3 and FT4, the actual thyroid hormones. HAve you called your doctor and discussed your current symptoms with him? What does he say?
You do sound overmedicated...not a good feeling, I know...I'll be a little hypo any day if I have the choice.
I believe that FT4 range should be 0.7-1.8? You're quite high in the range...almost to the top third. If you're converting well, that would probably put you well up into the FT3 range, but that's just a guess since your doctor doesn't check FT3.
Is he of any help at all? Have you told him about your symptoms and asked for a decrease? Do you monitor BP and HR? Often, these are elevated when overmedicated, and they're real doctor attention-getters...just a thought.
Your responses are so appreciated. Yes, my BP is elevated, sometimes quite high. I also have neurally-mediated hypotension, even without thyroid disease. When I stand up, my BP goes down and then shoots up. It's worse now. What is HR?
Unfortunately, my endo doesn't think my migraine are related. Since I've been on .75 for 14 years and .625 for 4 years, I have some concerns about how my body is adapting to this new lower level. Isn't .375 a low dose? Is it possible I don't need the hormone?
When were you diagnosed with Hashi's? Was it 18 years ago? You tested positive for antibodies?
.375 is a low dose, but if you have Hashi's, it would be very unlikely that you don't need the hormone. Do you have periodic ultrasounds? Nodules? Flareups are usually associated with early phases of the disease...they usually become less frequent as the thyorid is furher destroyed.
Heart rate has diminished from high 80s to 70s and low 80s at times. Palpitations are always present.
My new internist recently diagnosed Hashi's (about 1 year ago). My flare 20 years ago went undiagnosed, and I thought I was just a little nuts. In retrospect, I had problems after each of my children 38 and 35 years ago. (I'm 66). No ultrasounds yet and no nodules upon physical exam.
My endo did say that occasionlly the gland doesn't burn out. I guess there isn't any solution except waiting this out.
Well, if you just had antibody testing a year ago, it's possible that you've been hypo for years (just low functioning thyroid), but the Hashi's developed later. It might be worth it to request an ultrasound to see about nodules as they can sometimes cause the swings (usually for very short periods of time, however, and yours has been going on for a while).
Considering the length of time your meds have been being adjusted down, you might want to delve into the cause further. We usually see Hashi's swings over short periods of time...days or even intraday,
Backing up a bit...the very first thing I'd want to request is FT3 testing. FT3 correlates best with symptoms.
Also, you might want to have TSI tested. TSI is the definitive test for Grave's. While it's very rare for someone to have both Hashi's and Grave's, it does happen.
I think this has been going on for too long, and you ought to get an explanation for what's happening
I agree. Thank you for your comments. I will be seeing an endo at a medical school next week. I was beginning to wonder if I had fibromyalgia. It's frustrating to have "unusual" and "outside the normal test parameters" symptoms.
It's not an either or thing about having Fibro and Thyroid. They can, and quite often do, go hand in hand. I've never heard of BP or HR issues being part of Fibro although I will admit I'm no expert on it!
I agree with Galsal. I'm not convinced that fibro is even a separate disese...it may be hypo gone wild...however, that's just my theory on it. I get especially suspicious when the drug giants have developed a drug for fibro that is much more expensive than thyroid meds. Makes me wonder...
I agree. I believe that some of the fibro docs use thyroid meds to help their patients (even without positive labs). I have read it seems to help.
In my case, my numbers do not suggest hypo at this point, but I still have "Mack truckitis". The pain did not present until I was almost done lowering my dose from .0625 to .0375. I remember having nights when I could not sleep while still on .0625, and about 2 AM, I would start have body pain. But, after falling asleep, I was pain free on waking. I am wondering if the synthroid "suppressed" the pain syndrome. Pure speculation, I know, but strange that there should be so much pain when labs are negative.
There is certainly so much that is unknown and unexplanable about how the body responds to disease. I had thought, when super hyper, that simply coming to a lower dose would be a simple and easy solution to "righting the boat". Apparently not so. I visited my internist today and, while there, came to realize that this is something I must be extremely patient about--and I will. He said that the brain reads the TSH as .69, but at the cellular level, the body thinks I'm still at the higher dose. He says it can take months to reconcile the brain and the cellular levels. That certainly would explain the bouncing around I think I'll been experiencing.
It is encouraging and comforting to be able to chat about these things. The worst thing about a health problem can be isolation and lack of information. Thank you both.
"...some of the fibro docs use thyroid meds to help their patients (even without positive labs). " There are a couple of problems with the "normal" ranges for thyroid tests. Several years ago, the AACE recommended chaning TSH range from 0.5-5.0 to 0.3-3.0. This was because there were many undiagnosed hypos in the population that originally made up the "normal" sample. However, FT3 and FT4 ranges have never been updated to adjust for the same factors. If they were, the bottom end of the range would certainly drop off, and many people now in range would suddenly become hypo.
The other problem is that everyone is not comfortable everywhere in the range. Some of us have to be high in the ranges, others low, etc. We have to find our own personal range and stay within that.
FT3 levels might go a long way in explaining your symptoms. I hope your new endo is receptive to running it. Best of luck with your appointment next week.
I agree with "why wait?". But part of me also wants to get my doctors to do what "I" want. If I request a test, then they should comply. I don't care if they want to see it or not..."I" do. I always "edit" the tests my endo orders...he's good, and I have the ultimate say. I've met other doctors who aren't nearly as compliant. I agree though...Oprah and my husband (a cabinetmaker) diagnosed my hypo...an internet TSH confirmed it (68)...doctor was only necessary to prescribe. Any way you can get it done...the end does sometimes justify the means.
I saw my new endo yesterday, and he ordered antibody tests and an ultrasound. Had the ultrasound today, and the radiologist said the gland was normal and symetrical, but had increased vascularity consistent with Hashimoto's. The endo was questioning the diagnosis--"perhaps you don't have primary thyroid disease". But, the question now concerns the antibodies. Yikes--the waiting is difficult.
Endo said those earlier tests I entered here were questionable because many times antibody tests will be slightly positive at menopause. So...that's where it's at now. If the antibody tests are negative? Oh well, a step at a time. Thanks again for your comments.
What if I don't have primary thyroid disease and have to get off synthroid? After 18 years, is this possible? What would the side effects be before my body adjusts
(if it will)? The endo seems to think that while I had some abnormal tests back then, they were mild and did not require treatment. Geez, I'm a little worried. I'm thinking it will be quite a shock to the body to get off after all this time (I am at .0375--and feeling bad). I think it would atmminimum cause a pretty intense emotional response (depression???).
If you do stop taking Synthroid, you will be weaned off of it, giving your thyroid a chance to "ramp up" again. If you are indeed not hypo, it should take over once again and replace the hormone that you have been getting from your Synthroid. As with increasing meds, you should do it slowly and have frequent bloodwork (4-6 weeks) while this is going on. Don't forget that if you are not hypo, your thyroid should make up for the discontinuation of Synthroid by keeping your body at the appropriate FT3 and FT4 levels. You've already been slowly moving down, so you are on your way...the transition from 37.5 to zero shouldn't be any more difficult than the transition from 100 (I think I remember that right) to 37.5. In fact, it should be easier now that you know what's going on and can anticipate further decreases. Just make sure your doctor doesn't whip the Synthroid out from under you too fast...after 18 years, you do need time to adjust to each lower level.
Hope you've heard from your endo, and it's good news...let us know.
Thank you for your response. At 8 AM this morning, my professor endo called (CA time). He confirmed a diagnosis of hashimoto's--positive U/S and positive antibodies. He's keeping me on the current dose and will see me in 3 months time. I asked about the body pain occuring only after lowering dose, and he said that fibromyalgia (yes, he used that word) and other pain syndromes can occur with thyroid disease. I was amazed that he would acknowledge fibromyalgia as a legitimate disease entity. I feel I'm in safe hands.
I wonder if you'd respond to yet more questions. I'm finding the hip and shoulder pains are getting more severe and I'm getting a little puffy in the face. Surely this is not fibromyalgia. I'm beginning to think I'm getting far too low on this .0375 dose. It's been 6 weeks since I finished my lowering of the .0625 dose. The question is: how intense/severe can the pain be with hypo vs. fibromyalgia? I'm starting to think I should be on a higher dose. Also, second question: do I run a change of becoming hyperthyroid again if the dose is increaed with "normal" test levels. Thank you again.
Never having had fibro, I can't comment on the pain from it versus the pain from hypo. However, when I was hypo, I could barely walk from the bed to the coffee pot in the morning...had to stop en route because I didn't think my back was going to hold me up. It was pretty bad. Puffy face is also a hypo symptom.
How long has it been since you've had labs?
Yes, you can become hyper anytime meds are increased. We all have to find our own personal range in which we are comfortable and stay within that. For many of us, that's around midrange for FT4 and upper half to upper third for FT3. However, that's now all of us. I happen to be very comfortable in the lower ends of the ranges and actually went hyper at levels that would make many feel very hypo. We're all different, and relief of symptoms (both hypo and hyper) is what we're looking for. You have to experiment...unfortunately, going a little hypo and a little hyper is often part of that experimentation...unavoidable. But staying hypo to avoid becoming hyper is not an option, either.
If you haven't had labwork since the last decrease in meds, I think you should request labs now...whenever you are changing dose (increasing or decreasing) labs should be done 4-5 weeks after each change.
Now that you know for sure that you have Hashi's, you at least know that getting off meds completely is not an option.
Thank you, thank you. Yes, I know I won't be getting off the meds. I was hoping, but now would just like to be able to function again. I'm finding it almost impossible to leave the prone position for very long, and I'm usually very active. I'm afraid I'm bouncing around enough that my labs won't support hypo symptoms. And, I'm pretty sure I've been bouncing around for about 3 years--pretty stable before then. All I know is that I did not have body pain on the .0625 dose. I appreciate your help.
You don't have to be below range on FT3 and FT4 to be hypo (or above range to be hyper). We all have our own "range" in the population range where we are well...get out of that, and it doesn't matter how "normal" our labs look, we don't feel good. You can look back at your labs from when you were stable (3+ years ago) and see where your FT4 and FT3 (if you ave any of these) was when you felt good. THAT's where you want to be. Comparing you to you is much more important than comparing you to a "normal" population.
I think it's important for you to retest now, and make sure your doctor adds FT3 to the FT4 and TSH. I don't care if your labs are all in range....they will let you know what is too low FOR YOU since you are now hypo. When are you scheduled to have labs again? I suspect your doctor pays attention to TSH mostly, has been adjusting your meds based on that, and that's why you've been unstable for a few years. You don't have to keep putting up with that...if you can't get out of bed, something is not right.
I have had just two dose adjustments in the last 18 years--the last one about 5 years ago. I was adjusted down from .075 to .0625 then. Yes, my doctors have used TSH exclusively. I had a lab done yesterday--FT3, FT4 and TSH. I can't sleep (at best 5 1/2 hours a night), and I think a lot of my tiredness has to do with that. I hope this is all thyroid and not fibro, too. I'm starting to get carpal tunnel, my feet feel like ice in the AM, am somewhat dizzy and I have to pay careful attention when doing bookwork. Other pains in hip and shoulder with some leg pain on right side. Weird!!
It all sounds like thyroid to me. I had carpal tunnel when hypo...gone now even though I spend most of my life on this keyboard (my work involves computers, too) and do a lot of needlework when I'm not doing this. Cold feet, dizziness, brain fog, joint and muscle pain...it's probably all thyroid.
I'm really glad to hear you've had bloodwork. If you'd like, post results with reference ranges (these are lab specific and have to come from your own lab report), and we'll try to help you interpret them.
Yes, I will post the labs. I am so grateful for your comments and this website. I, too, spend a lot of time on the computer. I use to do needlepoint and knit and would love to get back to both. Thanks for the comments on thyroid only. Question on the antiperoxidase antibodies: the range for the test was normal below 60. My results were 286--is this high? Also, how to the antibodies relate to actual symptoms in each person. Does 286 suggest fewer symptoms than, say, 2300?
Antibodies are basically either positive or negative...raw numbers don't mean a lot. My TPOab on diagnosis was 900+, and I'm also TGab positive, and that ws 3000+ (just to give you an idea of scale - numbers in the thousands are not unusual). Antibodies can also vary wildly, even intraday.
Symptoms come from the destruction of the thyroid by the antibodies. Symptoms do not come from the antibodies themselves directly. The complete destruction of the thyroid can take decades or months, depending on the individual. So, symptoms don't depend on the antibody count, but on the degree to which your thyroid function has been destroyed to date...and, of course, more and more is destroyed every day. So, the symptoms are the same no matter what your count is.
I really thought I would never knit again...I'd spend the evenings with ice on my wrists, coundn't even think of actually knitting. I must have made close to ten pair of socks this winter...hang in ther...it'll come back.
Your FT4 is at 60% of range, but your FT3 is at 46%. This is a little "upside-down". It's usually best to have FT3 somewhat higher in its range than FT4 is in its range. I think your TSH is really not changing to any significant extent...in all the numbers you reported in the two posts immediately above, the low is 0.028, and the high is 0.069. That's only a difference of a little more than 0.04. That's nothing and could be explained by daily variation.
I'd suggest that you add 5 mcg of Cytomel to the T4 you are taking now. If that proves to be too much with the T4 you are currently taking (37.5 mcg?), then you can lower the T4 a smidge to compensate. I think that would help you get a better balance of FT3 to FT4. Do you think your doctor would be agreeable to trying some Cytomel?
I don't know. Both my internist and new endo are pretty middle of the road. I may have to go to another endo. Could these numbers suggest the symptoms I'm having? I'm starting to worry that I have fibro or cfs. Yikes. Not good. Thanks for your time.
I can't say that adding Cytomel will DEFINITELY help you. It's just that I see an aberration in your current labs, and I think it might be worthwhile to correct that and see if it relieves your symptoms. T3 is the active form of the thyroid hormones, and if you are not converting T4 to T3 adequately, you will not feel well. T3 is also very fast-acting, unlike T4. It doesn't have to build in your system. So, you should see improvement sooner, also. However, your body will still take time to heal once it is getting adequate T3, so your aches and pains will not go away over night. If I were you, I'd try it before exploring fibro and CFS any further.
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