What are your exact TSH and T4 levels and was that Free T4 or Total T4? They aren't the same.
With a former TSH of 11.25 and all the symptoms you had, I'd pretty much have to disagree that you don't have hypothyroidism. If you the antibodies, that would be grounds for a diagnosis of Hashimoto's Thyroiditis. Hashimoto's can be characterized by periods of normal thyroid function, alternating with both hyper and hypo. An enlarged thyroid indicates inflammation, which would be caused by antibodies attacking the thyroid. Just because your TSH and T4 have "stabilized" doesn't mean you're not hypo.
What about symptoms? Are those all gone?
As an update I went to an endo. My TSH and t4 levels have stabilized and I haven't been on anything for almost 2 months. The endo says I do NOT have hypothyroid. I did have the antibodies though and my thyroid is enlarged. . I had an ultrasound done.
Unfortunately it seems that any doctor that is associated with a large group like the Cleveland Clinic always follows the dictates of the group. So, they have the "Immaculate TSH Belief" and use "Reference Range Endocrinology", and won't even consider treating clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms.
I am sending you a PM with name of member recommended doctor in your area. Just click on your name and that takes you to personal page. Then click on messages.
Rocky river, OH. My pcp is from the Cleveland clinic.
I live in Rocky River, OH. Mostly go to the Cleveland clinic. Would love a recommendation!
If you will tell us your location, perhaps a member can recommend a doctor, based on personal experience.
It may also be that you just haven't found the right type of thyroid med for you. Everyone is a little different and many don't tolerate synthetic thyroid supplements or need a little t3 added in to make it work. It does take some time to figure it all out.
Just an fyi too that beta blockers decrease thyroid absorption too- dr's might tell you otherwise but it's a known side effect and many patients have had personal experience with it. Since being hypo can cause high blood pressure (not necessarily the cause in every case but is A cause), it may be that by fixing your thyroid your blood pressure will also get better. I had low blood pressure my whole life (usually 90's/60 to 110's/70's) and when I was really hypo my blood pressure got into the 130's/80's. Just by getting my thyroid stabilized my blood pressure went back to normal.
And if I do need to go on more Meds I want to make sure they are the right ones.
Thank you so much for responding. I'm feeling very anxious. In the last 6 weeks I've gotten 6 "diagnosis". Since July 19 I've been diagnosed with hypothyroid, vitamin D deficiency (level 8.19 range 31-80), glaucoma, high blood pressure, sleep apnea, and irritable bowel syndrome.
I have a herniated disc in my neck and brachial neuritis (diagnosed 2011). My doc was prescribing corticosteroids and Vicodin several times a year until July when I broke down crying and asked for no more pills and to get to the bottom of all my symptoms. I asked for celiac and thyroid tests. I have gained sooo much weight! I'm tearful but not depressed. I do have some anxiety. Chronically tired. Insomnia. Can't fall asleep at night but VERY HARD to get out of bed in the morning.
I found out 2 weeks ago I have glaucoma which could have been caused by the steroids. I read thyroid problems can be caused by oral steroids as well. In July my doc just started prescribing more Meds for the individual problems but I feel like the Meds are causing problems and I still have no idea why. Then when my thyroid test came back even more elevated on the thyroid Meds she prescribed i panicked. I guess I'm losing faith. The pills I've been popping the last 2 years have caused very serious side effects. So the answer is more pills?????
Here are my symptoms, I'm looking for advice on what kind of doctor to go to and what questions to ask. I pretty much had to beg my doc to run the blood tests I got but didn't know all I should have asked for. I don't want to take more pills unless I have to. Symptoms:
WEIGHT GAIN a lot of weight gain, 100 pounds since 2011 (I was always thin and healthy until I injured my neck and reduced activity and started steroids)
Always feel hot, keep the house at 68 degrees
Right arm muscles twitch and left eye lid twitches
Labored breathing, can't get a full breath (started a couple weeks after starting synthroid)
Crying spells
Very difficult to fall asleep or stay asleep and almost impossible to wake up every morning
Chronic diarrhea mixed with days of constipation, haven't had a regular stool in about a year
Chronic fatigue, feel like a very lazy person
Muscle pain
Headaches daily, occasional migraines
Thank you so much for your input!!!
Your doctor is not adequately testing you. TSH is a pituitary hormone that is affected by so many things that at best it is only an indicator, to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4). Many doctors like to think that TSH accurately reflects levels of the actual thyroid hormones; however, TSH cannot be shown to correlate well with either Free T3 or Free T4, much less correlate well with symptoms, which should be the highest consideration. There are scientific studies that show that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.
So, I would not be concerned about the TSH. You really need to be tested for Free T3 and Free T4. I expect that you will find that your Free T3 is in the low end of its range, which is often accompanied by hypo symptoms such as the ones you mention.
What you need most is a good thyroid doctor that will treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms without being constrained by resultant TSH levels. symptom relief should be all important, not just test results and especially not TSH results. If I were you I would request to be tested for Free T3 and Free T4 every time you go in for tests. If the doctor resists, just insist on it and don't take no for an answer. I also suggest that since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, you should test those as well.
You should also find out if the doctor is going to be willing to treat clinically as described above.. If not, then you will need to find a good thyroid doctor that will do so.
"Am I overreacting or is my doctor underreacting?" Both.
It's not unusual for symptoms to worsen, or for new ones to appear, once one starts on replacement hormones. So that's your overreaction...
Your doctor, on the other hand, should know better... Most likely, what's happening is that you have Hashimoto's and it's changing your own thyroid output quite quickly, which means your thyroid produces less, so you will need more replacement hormones.
It's very important that you get tested for the Free T3 and Free T4, along with the TSH... TSH is a pituitary hormone and studies find that it really doesn't correlate with symptoms or actual thyroid hormone levels, at all. Any doctor who doesn't test FT3 and FT4, will keep their patients ill, for a long time.
I don't understand the jump from 50 mcg of synthroid all the way to 88; she's skipping right over 75, which could be good enough...
I'm happy to hear that you have an appointment with an endo, but do be aware that not all endos are good thyroid doctors, and many of them stick with the TSH, also. You might want to call and ask some questions of the endo prior to your meeting, just to be sure. Questions you want to ask are, whether or not they treat by symptoms, whether or not they test FT3 and FT4 every time they test TSH and whether or not they are willing to prescribe whatever medication is necessary to alleviate your symptoms, whether it be a synthetic T4 only, T4 with added synthetic T3, or desiccated meds.
Along with insisting on FT3, FT4, you should also insist on thyroid antibody tests... you can try to get your pcp to do that prior to your endo appointment, which might save some time. If she refuses to order those tests, kick her to the curb as fast as you can.