[NurseThomas]

#1059603

Hello Everyone,
I was disparately hoping that I would feel more like myself by now but I don’t…sigh. I have been on Levothyroxine (88-100mcg) from September to December and recently started synthroid 88mcg. I still feel awful. I have switched to a high protein diet due to my history of hypoglycemia which has helped, but my anxiety is off the charts at times. And the worse is after I start my menses. I feel extremely sluggish and heavy for 2 days. I am so bummed that I am not in a place of tolerance. I am struggling to find a good Endocrinologist. Most Endos in my area are diabetes experts…sigh. My endo only checks my T4 and TSH, no one has ever check other thyroid function tests. The sad part is I am a nurse practitioner (specialized in urology) and I feel helpless. However it is a relief to be able to log in here and see people just like me.

[Kimberly]

#1176084

Hello and welcome! Sorry to hear that you are struggling…it can definitely take some time to find the “sweet spot” of replacement hormone that will get you to feeling well again.

If you check out the “Looking for a Doctor?” thread in the announcements section at the beginning of the forum, there are some good resources for finding docs who have expertise in Graves’ and thyroid issues.

Also, keep in mind that the “normal” ranges for TSH, T3 and T4 are fairly wide. Some patients feel their best at a particular spot in the range. A very specific symptom log can also be helpful. Some doctors assume that anything in the “normal” range is fine – when the real goal should be to find the levels that are OPTIMAL for you.

Take care — and please keep us posted!

[NurseThomas]

#1176085

Thanks Kimberly. Your reply was helpful and encouraging. Unfortunately I spoke with my Endocrinologist today after I posted and she says my symptoms (anxiety and anxious) are not common and I should keep my appt with my Psychologist. I told her that I also made an appt with a nutritionist and her reply was “well see if that works”. Then I started to cry when I was speaking with her. I wanted her to know how terribly I was struggling, but she just continued to say your levels are normal and GD patients don’t really have too many problems after their levels are normal.

But after today’s conversation with my Endo, I will be calling Dr. David Cooper at John Hopkins tomorrow for an appt. I want someone who clearly speaks GD, lol. I am a mother, a wife, and career gal and I need my life back, lol. I am not asking for 100% but 80% will do just fine.

As a nurse practitioner with GD I have realized how important it is to listen to the patient. Not to steer the conversation to what I believe, but to listen and listen well. This experience has open my eyes and ears. If I hear something from a patient that doesn’t go along with the usual, I will let my patient know that I will look into it (read research articles) as well as ask other providers (more than one) about the symptoms.

[vanillasky]

#1176086

Hi Bernadette and welcome!

Please know we are all in the same boat here. Some have yet to get RAI or surgery (like myself, just diagnosed October, 2012) and some have had the long journey but nevertheless, a great group of people.

Just for the record, I am in upstate NY and only have 5 endos here. After being misdiagnosed with Hashimotos Thyroiditis for 15 years, I went desparetly to Cleveland Clinic Foundation where 2 endos found Graves’ Disease in just one visit! Most endos DO specialize in diabetes and feel that thyroid patients take a pill for hypo or ablate or operate for Graves’ and cancer, and away we go. NOT! We have a long road ahead of us and personally, I believe there are things they just don’t take the time to tell us about Graves’ and thyroids in general.

I find such a wide range as to what is “normal” in TSH. Cleveland has a range of .40-4.50 as normal, while, here where I live, normal is considered .35-5.50. What a difference! I don’t care where the TSH is in the range, if you don’t feel good, you don’t. Hard to find a doctor that understands us and just doesn’t go by the paperwork.

[Ninajanet]

#1176087

Rai is not the solution it doesn’t make us feel better just worse. Should have gave meds a chance or stayed in them! You can stay on meds for many years and don’t have a problem. Rai is not the answer just makes us feel worse and the thyroid is soooo important and well a pill I think can’t really do anything .. And you may not like what I have to say but endos are stupid. They give advice but why if they have no idea what they are doing.

[AzGravesGuy]

#1176088

Hi Bernadette!
Welcome to the club!

Print out this study: http://www.drrichardhall.com/Articles/anxiety.pdf

Take it to your endo and fire her. The good stuff starts on page 15.

“Not common” is an ignorant cop out contrary to published studies. If she is eager to push you to other specialists without running the full thyroid panels, then her incompetence is breath taking and she doesnt deserve any more of your money and you need to find an endo that will not waste your time.

Good luck on your visit with Dr Cooper, I hope he gives the care that you deserve.

Ninjajanet, I have to disagree with your statement about RAI. It has turned my life around, the exact opposite of your statement. Am I the exception to the rule?

Everyone is entitled to their own opinion and treatment options, but blanket, misleading statements are something else.

However, I will agree that most of the endos I have met in the last 7 years were vapid, agenda driven pseudo-professionals that cared more about their twitter accounts than their medical practices.

[beach45]

#1176089

Hello,

I had RAI May 2012 and it has been one miserable ride for me.

I had to come off Synthroid as I was feeling like death 4 months. Generic didn’t help much better.

I also have my FT3 levels checked which were very low for me recently as I charted where my levels were (TSH, FT4 and FT3) for 2-1/2 years on an excel spreadsheet with symptoms recorded too…both pre and post RAI. I was on Methimazole 24 months also with an up and down rollercoaster. I am going into menopause so it is being found too the mix up of female hormones is not helping this situation either!

I had one endo here who believed in trying different thryoid hormones and she left my state before I had RAI; very open minded.

The three other endos I have had thus far as only for Synthroid/T4 medicines alone.

I am on something else now which I will not discuss yet in recent days I have changed around significantly. I am working with a very good doctor now, a DO who listens and has a great background working with getting thyroid balanced for the individual; it is not a one size fits all. My husband has a cousin a doctor in NY who had RAI 20 years ago, a low dose of I-131 and she went hypo a year later and no problems on Synthroid all these years. Mine was totally destroyed as I had a higher dose. I think in time more is going to come out that some people may need a little extra T3. Yet people have to work with their doctor on this of course!

I already spoke to a woman at Walter Reed Medical in Bethesday MD, where there is a clinical trial going on with T4 (Levothyroxine) vs. Armour. The results are very interesting that are already coming out and results will be revealed more in 2013. I wanted to be part of this study yet I have to be living in the area which I do not.

I think what people will find that after RAI you have to find your own niche and what works for one for people here or anywhere, may not work for you. It is working with the right doctor whether that be an endocrinologist or some doctor who is well informed with working with getting thyroid balanced. Some people do very well on Synthroid alone post RAI or TT for years; some do not and some just suffer in silence and take a bunch of other medications. I am someone who will keep searching for what I need until I find it.

For myself, I very much regret taking RAI yet I had no choice because my Graves was out of control and I suffered too with that with a very rapid heart rate that I could have stormed. Doctors were very worried even with small changes in antithyroid, Methimazole … they could not control my levels as I either went too hypo or too hyper.

Just from what I research and hear I believe in time change is going to come down. There is no reason for anyone to suffer just because they have their thryoid destroyed or removed.

It also sounds like you are on the Synthroid a short amount of time and you may not have found the perfect spot for you. Remember as I am finding out the hard way, my doctor is supposed to partner with me on this; he is working for you not the other way around. Sometimes too though getting to where we want to feel better also takes time. I truly believe having your own thyroid or some who may have some thyroid left if it was not totally destroyed is better than having none and I think it may become more challenging yet people do get there in time. Some even on Synthroid alone can take months to a couple of years for some unfortunately to get to the right spot. Hang in there as with getting the right care you will get there as I believe I also will too in time! Best of luck!….beach

[Kimberly]

#1176090

@ninajanet – All we can do here is share our own experiences; it’s really *not* helpful to second-guess someone else’s treatment decision after the fact.

We have two facilitators here (Ski and Bobbi) who are success stories with RAI…but we also have other posters here who do wish they had made a different treatment decision. ALL three treatment options have risks and benefits. As beach45 said – treatment for Graves’ is definitely not a one-size-fits-all type of situation.

@beach45 – Wishing you success with this DO. We do need to make sure that any new treatment protocols have been fully researched before we discuss on the forum here. If you have questions on whether or not to post once you have some additional experience with this option, please feel free to PM or to send an e-mail to info@gdatf.org. Thanks for the info on Walter Reed’s study – I will definitely check that out, as I know that T3/T4 combination therapy is a subject of major controversy in the medical community right now!

Take care!

[beach45]

#1176091

Kimberly, thank you. I take this one step at a time and hope for the best!

Yes I would email or PM you first if I have something in question that I may want to post. The Walter Reed study is small yet it is a start as I know that for changes to occur, studies have to be done and results documented and released. I know things are different in parts of Europe in regards to the T3/T4 issue and maybe in time things will change here also.

For myself I wish things had been a bit smoother like it has been for some. Yet it just hasn’t worked out that way thus far yet hopefully slowly with effort.

That is true all three treatment options have risks and benefits and there is not a guarantee that things will be perfect. For me the main thing was to get the Graves under control so I would not storm. Antithyroid didn’t work for me and I had to do something and accept how things turned out thus far.

It can get better though!

beach

[adenure]

#1176092

Hi Bernadette,

I just wanted to chime in and give you some support. First, you are not crazy. Just because you had RAI and are on Synthroid doesn’t equate to a magic act “poof” all better type of scenario- which, sadly, some doctors would have us believe. I had really bad anxiety when I was hyper. I was on methimazole briefly (7 weeks), but I had to stop bc of adverse effects on my liver (elevated enzymes 8 times normal). I had a thyroidectomy 6 months ago. I STILL had bouts of anxiety (although not as bad) after surgery until the Synthroid was dosed correctly AND I had spent 2 months on that dose. I was fortunate that I only needed one tweak. I started at 100 mcg and was upped to 112 mcg. 6 weeks later. Two weeks after my dose increase, my numbers were fine, however, I did not feel fine. It was really nerve wracking. I still had some anxiety (mostly a “constricted breathing” feeling), light headedness, kind of off feeling, headaches- almost daily, and insomnia. However… about 2 months after being on 112, pretty much all of the above symptoms have subsided. It’s not perfect, no. Not pre- Graves “me”, but I am well enough to care for my family, homeschool my 4 boys, exercise, and enjoy my life again.

I would try to give the Synthroid a little more time. Get your thyroid hormone balanced and then give it at least a few months there and see how you feel. My TSH is around .68 I think and my free T4 is in the upper normal range. I don’t know my free T3 as Kaiser doesn’t offer that test.

Also, have you looked into some alternative treatments too? I tried acupuncture while I was going through the recuperation and having issues with the symptoms I mentioned above. Acupuncture really just helped me relax a whole lot. I never felt so relaxed and calm in my life. When I went into my appointment, I sat there and cried explaining everything I was dealing with. An hour later, I was so calm and profoundly peaceful- it was pretty amazing. If you can do it, it might be something to look into. Try to treat yourself to something to put a little fun in the day- a funny movie, frozen yogurt- little things can help too. But, hang in there and find the doctor who will help you. I’m kind of in the same boat. We’re switching out of Kaiser to Blue Cross after the new year. So, I have to find a new endo.! I’m in San Diego and am hoping to find someone great. The one I had at Kaiser was pretty good, but there are more choices with doctor and providers with Blue Cross. So, the adventure begins…

[NurseThomas]

#1176093

Hello Everyone. Thank you for your honest support. I feel like I am amongst some brave individuals who have given me hope.

@adenure your story is nearly my story as far as symptoms. However I have not been on any dose of Synthroid longer than 6wks, (Levothyroxine 88mcg 6wks Levothyroxine 100mcg 6wks, then Synthroid 88mcg 4wks, now Synthroid 100mg 2 days). Your words are encouraging. I do have an appt with my therapist on the 16th of January and I will ask for acupuncture recommendations or other relaxation therapies.

@beach45 I can completely understand the hormone issue, I have never had so much cramping and extreme tiredness with my menses…sigh. I am hoping that it is my body trying to balance itself out on my new artificial metabolism. I wish you the best with your treatment. I can completely empathized with you.

@AZGravesguy you are right! I plan to fire her in March after I see Dr. Cooper at Hopkins. My husband says I shouldn’t since I am apart of the heath care provider community. He said she may bad mouth me, lol. And I was thinking not as bad as I do in my head. Thank you for the article. I was going to mail her some articles anonymously, but my husband says that may tick her off, but I still might, lol. Thank you for the article

@ninjajanet I have to agree with you on my experience thus far with my endocrinologist. I feel like she treats my GD like its not a big deal or worth the efforts of keeping up with the latest science on therapy. I will continue to fight for my health without her very soon. As for RAI I had no issues with that, the issues came once I started on thyroid hormone replacement…sigh. Still hopeful though

@vanillasky My heart goes out to you as you await RAI. I absolutely hated how I felt when I was hyperthyroid. It was the most intolerable and overwhelming experience, so my sincerest empathy. I hope and pray soon you will have the treatment you need and I will continue to send those prayers up. I will have to say that hypothyroid has not been fun either, but I remember just feeling tired after RAI for a few months while taking Methimazole. I was able to get around fine after a few weeks. But since starting Levothyroxine the anxiety and anxiousness came back…sigh, and sometimes I am irritated to the 5th degree and my husband is probably looking for a new wife, lol.

You all have been very helpful. I don’t know what I would have done without this site. I thought I was for sure loosing my marbles, lol. Now I have a sense of hope that I did not have before. I am truly grateful and honored to be in your company.

[beach45]

#1176094

NurseThomas,

Thank you; it’s been one heck of a journey for me yet I believe in time I will get there. So much of this is finding the right balance for the individual and it is not always about just being “in range!” In time things will balance out for you working with the right medical practitioners and giving this whole thing time as I am finding out too and hormones are so very sensitive and one slight change in levels the wrong way can make us feel horrible (at least this is my experience first on Methimazole and now on thyroid hormone post RAI.) Glad you reached out here and we can all help one another….beach

[Stymie]

#1176095

I too have been anxious and just generally not feeling well since I started taking levothyroxine.

When I was hyper I felt pretty good. No anxiety, I was training for my first 5k. My symptoms were heat intolerance, rapid heart rate, shaking. But other than that I felt pretty good especially since my TSH was off the charts. Had the RAI done and still felt pretty good until I went very badly hypo. (48 TSH). Since the first week of starting levo, ( the first week I felt pretty good, brain fog felt improved), I started just feeling weird. Nausea, crying fits. Now I must tell you that my father was seriously ill in the hospital at the time, and my not feeling well, was chalked up to stress in my mind. Never associated it with the levo.

After being on levo for around a month to 6 weeks got my blood work done and dr upped dosage too 100mcg. Before even taking the first dose that next morning, I woke up in a severe state of panic, dry heaving when I tried to brush my teeth. Waited a day and called my endo to switch my meds and he convinced me to stay on. He said give it a week and see if it normalizes.
I began taking a natural anxiety med and that is the only thing that keeps me sane these days. And yes right before my menses starts it is so much worse.

I don’t believe we have to live like this. I had my pcp prescribe brand synthroid for me but I can’t fill it until the 11th due to my insurance. Ugh. I wish my dr would have explained to me what a long hard process this is and it’s SO not something that is simple like I thought.

Have you tried a different brand med?

Diane

[Kimberly]

#1176096

Hi Diane – If insurance/finances are an issue, you might consider doing an Internet search for the brand name and “coupons”. (For example, “Synthroid Coupons”). Some manufacturers offer coupons on their web sites that make the meds even *cheaper* than going through insurance. Just a thought.

Also, I would be sure your endo knows about the anxiety med you are taking…it’s good to have a second set of eyes check out the ingredients to make sure there’s nothing that might interfere with any other meds or conditions you are dealing with.

Take care!

[Author]

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