Synthoid side effects

[Wyomingite]

I was diagnosed with Hashimoto's two weeks ago and started 25mcg of Synthroid - I took it for one week and stopped because I felt like I was going out of my mind - really spaced out, hyper, insomnia, agitated, and hostile - all within just a few days.  It was horrible.  I called my doctor and was told to just cut in half but I stopped until I can get into an endo (have to wait 3 months).  My TSH was 2.34 and T4 around 1 - I felt fine until I got on that drug but my doctor said because my TSH had been up to 5 and was back down meant I was in early stages of Hashi's.
I have no idea what to do and though I have only been off the Synthroid for 4 days, the side effects have not abated.  Anybody have any thing to say to help me understand what is going on?  I'm so upset and exhausted from lack of sleep....I was feeling FINE before Synthroid!!!

[Wyomingite]

Thanks for that info - this is a whole new world for me and I appreciate the help I'm getting here.  When I was diagnosed last month with Hashi's, I cut out gluten and dairy because I read it both can cause inflammation.  I was experiencing joing pain also in my shoulders and fingers and have early symptoms of rheumatoid arthritis in my little fingers.  Sigh...my doctor said Hashi's and rheumatoid often co-occur because both are autoimmune diseases.  Based on my immediate adverse side effects from the Synthroid, I'm afraid I won't be able to tolerate the synthetic thyroid either.  But maybe I was just started on too high a dose because my thyroid gland is still producing and 25 mcg was obviously more than I need at this time.  It's been a week since I stopped the Synthroid after being on it one week and I still feel like my mind and body are disconnected - like everything is surreal and having terrible insomnia and hot flashes - don't know if these are from menopause or the thyroid problem or Synthroid - it's impossible to know cause/effect it seems with this thyroid problem.  I'll be seeing both the endo and a rheumatologist on same day in December, but "gimel" found an internist for me in Wyoming about three hours from my home that I will see to get another opinion.  I read at Mayo Clinic that this disease had "simple and effective treatment" - yeah, right.....thanks again.  Keep me posted on how your rheumatoid tests come out - seems we both have similar issues with this disease.

[ShelleyN720]

You wrote: What does having nodules mean in terms of treatment?  I know nodules develop from the antibodies attacking the thyroid but how does it affect treatment?
I have read so much about this that there is not one answer. I am not sure what causes the nodules to develop. I suspect it is based on hormonal abnormalities that cause the tissues to react and growths or cysts to form. My largest is not *too* big (1.4cm) but I suspect they often tend to grow. With Hashis I have read that the antibodies will eventually destroy the function of the gland (hypothyroid) So the only solution is to provide hormone - either synthetic of natural dessicated. Nodules that are 1cm or larger usually will be biopsied with ultrasound guided fine needles. The results will usually determine what steps a doctor will take next.
Some hashis patients that are not suffering with symptoms of hypo will not be given meds if their labs are within range. I'd not want to take meds unless I was suffering from symptoms. But since I am, I take Armour thyroid which helps me since I cannot tolearte the synthetic but I am not feeling as well as I would like. I went to a rheumatologist a couple weeks ago and am waiting for a bunch of immune blood work to come back...I think I have bursitis in my hips. I also notice that when I reduce my intake of foods with gluten I feel better. I have never been diagnosed as having a problem with gluten but know from experimentation that spaghetti & pizza will enhamce my normal bodily aches & pains. VERY unhappy about this discovery. I LOVE breads & pasta!!

[gimel]

Check your email.  Sent PM for you.

[Wyomingite]

I'm in Worland and the best endocrinologist I can find is located in Billings, MT, three hours away at Billings Clinic.  I'm also interested in seeing an N.D. there but kind of reluctant since I've read Hashi's has to be treated with thyroid hormone prescribed by an M.D.  Other than the early stage of Hashi's and severe hot flashes from menopause, I'm in good health - at a perfect weight and no other problems.  So I'm hoping I can find a good doctor who can help me before I deteriorate.  I have no idea what to expect from Hashi's since I'm in the earliest phase and very scared of Synthroid now since I experienced such horrible side effects.  Seems that is what all doctors prescribe and the only solution.....

[gimel]

Where are you located?  Maybe we can get a good thyroid doctor that is closer.

[Wyomingite]

Cheyenne is about 6 hours from where I live but yes, if you know of a good doctor there, I'd try it because I'm having to wait so long to see the endo in Billings and a little concerned about what may happen between now and Dec.  

[gimel]

Would you possibly be interested in a doctor in Cheyenne?

[Wyomingite]

Thanks, Shelley - I am so grateful for this site and you and others who are helping each of us learn more about this disease and what goes along with it.  I had the same symptoms you described but thought they were due to menopause - when I told my ob/gyn and primary care doc, they did the same thing - offered me a script for Prozac.  Not one time did they ever say let's check your thyroid functioning and antibodies!

What does having nodules mean in terms of treatment?  I know nodules develop from the antibodies attacking the thyroid but how does it affect treatment?

[ShelleyN720]

When you see the endocrinologist in Dec (wow so far away) he will probably want a thyroid ultrasound to check for nodules - they are often found in Hashis patients. I am 55 yrs old. I believe I have lived undiagnosed for a handful of years. I went to the doctors many times complaining of aches & pains, fatigue, anxiety, dry skin, heart palpitations, and was told I needed to go on anti-depressants. I had also begun having issues with ear wax & ear infections - that was new & bizarre! But it was due to the reduced body temperature. It just amazes me all of the hypo symptoms I had and how many years it took for the doctors to decide to do some blood work that showed the elevated TSH. Then I had a thyroid anti-TPO to check for the auto-immune antibodies and there they were. My body was attacking my thyroid.
I understand the "dark hole" and trying to remain optimistic. I struggle with it every day.
The good news is that the people on this site are caring and helpful and offer a great deal of advice that is based on real patients experience. I know doctors pooh-pooh this type of internet advice, but I believe the doctors & endocrinologists would learn a lot if they paid attention to what their patients are saying!

[Wyomingite]

I forgot to mention in my previous post that I was tested for antibodies and both ANA and the other antibodies test he conducted indicated early stage of Hashi's.  I'm thinking that although 25mcg is a low dose of Synthroid, it was too high a dose for me to start on because my TSH wasn't that high and my thyroid gland is still producing a sufficient amount of hormone to keep me going.

So is it possible to start treatment with Synthroid too soon?  And what do I do if I can't tolerate synthetic thyroid hormones?  Based on the side effects I experience in one week of taking it, I'm worried.  I feel like I'm falling into a dark hole but trying to stay optimistic....I just need a road map for the Hashimoto highway so I don't take any wrong turns.  But so far, I am not getting off to a good start with the treatment plan and very scared and frustrated.

[Wyomingite]

Thank you so very much for your insight as I'm so confused about this disease and what to do or not do.

Barb - No tests are pending - my (new) doctor (an internist) said he didn't see a need to test for T3 nor do ultrasound. My T4 was free T4 1.0.  When I see the endo in December, should I ask him for additional tests and if so, what tests specifically should I ask for?

Shelley, Within 48 hours of starting Synthroid, I felt the same pins/needles feeling as you describe - told me husband the same thing you said - that it felt like wasp stings!  Interesting we used the exact same analogy, and I also feel that pressure in my head, like it's going to explode along with weird wave like sensations in my head and a feeling like I'm not associated with my body - everything seems surreal and I am overwhelmed by these side effects, just hoping it passes soon and my mind will be "normal" and I can think clearly again.  

Although I'm educated with a M.A. in Health Communication, I'm at a loss here and stuck in the middle of rural Wyoming without access to specialists, thus the long wait to see an endo in Montana, three hours away.  Thank you both so much for sharing your knowledge and experience - very very comforting to know there is hope for resolution with this new struggle in my life.  I thought being 52 and in the middle of menopause was bad enough and now this.....

[ShelleyN720]

Drink lots of water to flush out your system. I too had a bad time with the synthetic T4 only med. In my case it was .75mcg of Levoxyl. Some folks do fine on synthetic, but I sure didn't.  I didn't get aggitated as you mentioned, but within a few days I had terrible neuropathy & pins & needles sensations all over my bosy - like wasp stings. I also has pressure behind my eardrums like my brain was swelling and trying to fins a way out. Sounds weird, I know. I changed to dessicated thyroid (Armour) and within 3 days the pins & needles & pressure in my head went away. I am not symptom free, but Hashimotos is different than under-active thyroid, especially if you have a nodules.It isn't easy to manage the thyroid meds because your own thyroid is still sputtering out hormones too.

[Med2Corie]

I had a tough time on BOTH desiccated pig thyroid AND Synthroid.  On the natural brand my blood sugar soared, my blood pressure went through the ceiling and I had heart palpitations.  They switched me to Synthroid in December (2016) and I produced a rash on my face/neck, and my blood pressure went through the ceiling.  I am working with my Doc to wean off Synthroid....down from 100 mcg to 75 mcg and blood pressure, which I take myself three times a day now..is going down every day.  I chart when I take the Synthroid and within 3-4 hours you can see my blood pressure go up/peak and then settle back down as the day proceeds and I get further away from taking it.  I think I need to get off it altogether and migrate to Kelp iodine and possible L-Tyrosine (an amino acid that aids in the production of T3) ...

[Barb135]

It's common for TSH to swing  up and down, in the beginning stages of Hashi's but if your doctor has not tested you for antibodies, he has no way of knowing whether or not you are in any stage of it .........  

Is the T4, a "free" or "total"?  That will make a difference........  In addition, you need to have Free T3 tested........

It takes several weeks for synthroid to reach full effect in your body, so I can't say that taking it for only one week would make you feel like that.  For many of us starting out on thyroid med or increasing our dosage, we get really weird feelings for a while.  We are all different and meds affect us differently.

Did you talk to your doctor before (or since) stopping the med?  Is there more testing pending?  What about a thyroid ultra sound to test for nodules, etc.