[merchildofgod January 21, 2015 at 1:09 pm Post count: 2]

#1060564

I’ve been a member of this site for a while now and have only posted once before, but honestly just want some advice because I feel like I’m going crazy. I was diagnosed with Graves in mid-2011, went on a couple different ATD until found that methimazole with effective. I was slowly weaned off the meds at some point and went into remission, so I made the decision to do the RAI in December of 2012. I thought all of my hyper symptoms were terrible–heart palpitations, anxiety, tremors, insomnia, etc. I think maybe around April or May of 2013, my thyroid levels finally went hypo. I followed up with my endo several times after RAI and the last time I saw him, all he was doing was basically drawing my blood every so often to regulate synthroid dose, which after the last time I saw him, he said I could come back and see him anytime PRN, but that my family dr could regulate my medication now. I was on the same dose of synthroid for quite a while doing fairly well and then started feeling tired all the time, sleeping more, etc; so I had my family dr check labs again. While they were all within the normal ranges, I did take note of the fact that my TSH was on the high end of normal, but just continued the same dose like he said. So again, when it was time to get my levels checked again, no surprise that my TSH had gone waaay up from the last time, and my medication was increased. I felt so horrible then, that it felt like literally within a couple weeks I was feeling so much better–more energy, etc (I think that was maybe around July 2014). So then, I started exercising and dieting again, lost some of the weight that I had gained and was feeling good until I noticed I started getting a little more tired after workouts and napping right after I was finished, but had my numbers checked again, they were still fine. So here I am again, drained, exhausted, gaining weight, sleeping literally all the time I can when I’m not working. I had my levels checked right around new years and surprise, my TSH was way high again and I’m now up to 150mcg of synthroid. Problem is, maybe I’m not giving it enough time to work (it’s only been a little over a week), but I’m still not feeling much better. I’m so drained, physically and emotionally, and I’m not sure if the depression is a part of the symptoms or not (granted, my mom has stage 4 cancer and I’m dealing with that right now too). Would anyone recommend going back to an endo? (I would have to find another one because the one that saw me for RAI and after no longer accepts my insurance.) I just thought (and maybe I’m wrong), that once people got regulated on a synthroid dose, they tended to be stable on it for years. I’m just tired of this and need advice. I’ve literally experienced all of the hyper symptoms that happen with Graves and all of the hypo symptoms. Thanks in advance for the advice! Feeling very frustrated…

[KimberlyOnline Facilitator January 21, 2015 at 1:26 pm Post count: 4288]

#1183357

Hello – Hopefully, others who have had RAI will jump in with their experiences.

Most patients do find that “sweet spot” dose and end up being fairly stable on replacement hormone, with perhaps a few tweaks here and there.

If you don’t think that your primary care doc is able to get you the help you need with stabilizing your levels, an endocrinologist would be a good bet. You can find one in the “Looking for a Doctor?” in the announcements section of the forum.

One issue to consider is whether your daily routine has changed at all with the added exercise – when you are taking your meds, what supplements you are taking (and when), etc.. Another consideration would be possible GI issues that are affecting absorption of the replacement hormone. The American Thyroid Association just published a review of a study that touched on this issue:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window)

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-8-issue-1/vol-8-issue-1-p-5-6/

Take care – hope that you can find some answers…and get some relief!

[teresaaranieri January 21, 2015 at 10:08 pm Post count: 5]

#1183358

I know how you feel. I had RAI last May and I am being checked once a month or so because I feel so exhausted all the time. They keep telling me I am in the normal range but it is NOT normal feeling to me! I was hyper so long I don’t know how I am supposed to feel but I feel really old because I am so tired all the time! They keep telling me I must have a virus or something because I am still in the “normal range”…I guess I am not normal! Drives me crazy! Dry skin and dry eyes too. Feel bloated because of slower digestion too…this is not in my head! I just got a blood draw today so hopefully I will find out Friday if I am “normal” or just crazy!

[carrdon February 2, 2015 at 10:25 pm Post count: 2]

#1183359

My wife had RAI treatment in 2008 for Graves. After her numbers had shown “in the normal range” for about a year while taking only Synthroid, she was still complaining that she just didn’t feel like she did before – mostly a lack of energy. Her doc added a very small dosage of Cytomel (I think like 5 micro grams). After a few weeks she said she had a noticeable improvement and has been taking both now for about 5 years. Her take on the combo is that while it did not make her feel as good as she did before Graves, it was a definite improvement. The generic of Cytomel is Liothronine. You might research and ask your doctor about it.

[barbra February 4, 2015 at 8:03 am Post count: 160]

#1183360

Hi,

My endo prescribed Cytomel twice before my levels normalized, although both times only for a month’s period.
But, yes, I have to agree it did help make me feel much better.
Some doctors don’t like to prescribe it at all, Im not sure why.

My levels have been in the normal range now since March of last year and I like to think that switching from Levothyroxin to Synthroid and the Cytomel bringing up my T3 levels had something to do with it.

Hugs.
Barbra.

[Lnapoli512 March 16, 2015 at 10:36 pm Post count: 1]

#1183361

Hi.
I am new to this forum as I am trying to find some answers myself. I read your post and wanted to let you know that you are NOT crazy and you are not alone.
I had a complete thyroid ablation – RAI – a year and a half ago. Same as you, I had terrible graves symptoms that became life threatening. At the time, my crazy Graves Brain was only concerned with what the HYPO symptoms would be and how I would function. All my doctors told me that I “wouldn’t even notice that I was HYPO”.
Right. I feel like a walking zombie. A year and a half later. For me, the brain fog is the worst.
I can tell you that I started on Synthroid.
Felt terrible.
Changed Docs and started Armour thyroid – natural thyroid hormone from a pig’s gland – giving you both T3 and T4. We kept increasing the dose over an 8 month period. No change.
My current doc has me back on synthroid. 175mcg. Also telling me to start Cytomel if I’m still feeling terrible this week.
I am currently doing nutri system to lose the 10 lbs that I gained in the process. (not really helping)
Getting to the gym is tough, because all I want to do is sleep ALL. THE. TIME.
The depression I had initially after RAI has improved GREATLY.
The depression you have most likely is not you, it’s this crazy disease!
Trying to get these levels to your body’s “Normal range” is frustrating. My docs say my bloods come back “Normal” every time, yet I never feel better.
I keep telling myself that this too, is only temporary. I have talked to people who have also suffered from this and feel 100% back to normal.
It takes a lot of time and a lot of open dialog with your doctor. Many times I pushed them to raise the synthroid despite the “Normal” results.
Maybe talk to the doc about Armour. Some docs like it some docs don’t. It’s what people used to take before pharmaceuticals made synthetic thyroid hormone. The Cytomel may also help – as mentioned in previous posts. I don’t think doctors like the Cytomel because it’s harder get an accurate read on your labs.
Hang in there. You’re not crazy. You will get better and be restored to perfect health. (It just may take longer than expected)
Best!

[creightonae March 23, 2015 at 10:42 pm Post count: 2]

#1183362

Hello All!
This is my first time on here and I just want to say I am slightly relieved. I thought I was the only one feeling this way. I got my thyroid taken out May of 2014 and I was feeling better for awhile, but for the past couple months I just don’t feel like me. I am only 21 and I feel like I should be in a retirement home! I am tired and sluggish all the time and taking naps when I can. I don’t feel motivated to do anything, not even my school work, which is so not like me. I am also having trouble with my memory. I told my family doctor and like some of you, my results came back as “normal”. I have been trying to get in to see my endocrinologist, but they are so booked it is almost impossible to get an appointment any time soon. I will do some research on Cytomel though. It sounds like something I need to bring up next appointment. Thanks for that!

-A.C.

[KimberlyOnline Facilitator March 24, 2015 at 9:24 am Post count: 4288]

#1183363

@creightonae – Hello and welcome…when you say results are “normal”, is your doc only checking TSH? This is fine for patients who are stable and feeling well, but if you are symptomatic, they should be willing to do some further testing for you, including Free T4 and T3. It might also be worth having your primary check for other issues that could be contributing to your fatigue.

If you are having a hard time getting an appointment with an endo, it can sometimes help to have your primary call on your behalf. Or if your schedule is flexible, you can call the endo’s office directly and ask if they will put you on a cancellation list, so that they will call you if someone else cancels.

We hear mixed reviews from patients on combination therapy with Cytomel or Armour. Some patients do believe it had a positive impact, while others found it brought back their old hypER symptoms.

Definitely be persistent until someone will help you find some answers – you deserve to get your quality of life back.

[creightonae March 24, 2015 at 9:35 am Post count: 2]

#1183364

Thank you so much for the advice! I will definitely follow up with my primary for the specifics on the tests.
Any advice on helping bring my eyes from buggy down to normal?

-A.C.

[KimberlyOnline Facilitator March 24, 2015 at 1:27 pm Post count: 4288]

#1183365

Hello – Thyroid eye disease is a separate issue that tends to run its own course. Hopefully, you are seeing an experienced ophthalmologist who can keep tabs on your eyes. Once TED reaches the “inactive” phase (where symptoms are no longer getting either better or worse), there is a surgery called orbital decompression that can restore appearance. If you need an eye doc, you can check out the “Looking for a Doctor?” thread in the announcements section of the forum.

[AmyM March 24, 2015 at 3:13 pm Post count: 11]

#1183366

Hello! I just saw your post and sure hope you come back. Your story was EERILY similar to mine….the dates and everything! I was in your exact same boat a few months ago, when a friend of mine convinced me to see an Integrative medicine doctor.

Along w/various doses of a T3/T4 compound I was also on a bioidentical progesterone and estrogen cream. When my endo who had been treating me for 3 years said I needed to also add testosterone and another drug of some sort to my already very expensive regimine, that was the last straw. I headed to the other doctor.

She ordered stool samples, a comprehensive blood draw and saliva test. My hormone levels came back so high they were off the charts! I tested positive to casein (milk allergy) and was sensitive to gluten. I was low in B9…and a few other things. I immediately stopped the compound and started Armour. I was educated on “leaky gut” syndrome. VERY enlightening. Google it as it relates to thyroids! All along, I had felt as if I were putting a bandaid on my problem, and wanted to figure out why and how it started and treat it at the source. Learning about leaky gut, I felt like I had finally been set on the right path. It was recommended I get off dairy, corn, soy, wheat, sugar and gluten.

I have been doing the Paleo diet since January and have lost about 8 lbs., which isn’t much, but, for me…it’s HUGE. I had gained about 25 lbs. during the course of my thyroid madness and NOTHING I was doing was helping.

This doctor recommended interval workouts. Read Mark’s Daily Apple blog–this guy’s got it goin on!

Anyway, I feel SO much better. My hair is getting thicker, my skin has cleared up, and my belly bloat is down. I’m just hoping all this will last! With this stupid thyroid, you never know….

Just wanted to give you something to think about. I hope some of this info helps. Good luck to you–and to ALL of us sufferers!!

–AmyM

[slem3 April 7, 2015 at 4:38 pm Post count: 3]

#1183367

I’m new here… today! I have a long story but I just wanted to ask, do any of you regret having the RAI? My doctor says I’m at that point and I really have no other choice now. It seems a lot of people aren’t happy with what’s happened to their bodies after!

My appt is scheduled for May 18-20. Terrified!!!

[carrdon September 6, 2019 at 12:37 pm Post count: 2]

#1183368

Sorry, haven’t logged on in a few years. Just in case this may help someone in the tough decisions associated with Graves…

My wife had RAI in 2008. After a few years, she developed GO (Graves’ Ophthalmopathy). After several years of dealing with GO symptoms, she elected to go through with OD (Orbital Decompression). Not fun, but in the end, she was glad she had the OD, primarily because it relieved the constant pain.

In hindsight (always 20/10), we sorta wished the Dr. would have had us consider a thyroidectomy instead of RAI. I believe there is data now showing a higher occurrence rate of GO for RAI. Not sure if they had that data back in 2008, but sure wished we’d known then.

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