# 4 years and still swinging unmanagably, advise?



## qqq (May 16, 2015)

I was diagnosed 3.5 years ago and probably have had hashi's for 4/4.5 years. My synthroid dosage has vacillated up and down. I will be myself and feel okay for weeks or even months, then slowly I get depressed and sluggish till I am suicidal, then I adjust my dosage and slowly become myself again.

Life has been hard to manage, holding a job, personal relationships or social life have been horribly complicated by the fact that I have weeks where I am so depressed that I can barely function or, less frequently but just as problematically, I am hyper and feel irritable and angry all the time. I'm sure many of you understand how hard it is to guess doage when it takes so long to settle into a new dosage and sometimes my needs can change faster than it takes to figure out where I am at. It's chasing a moving target.

I never had suicidal thoughts before hashi's, I was always a really chill guy and when my thyroid level is even I am still that chill guy again but when it gets very low, I have had moments when I felt truly hopeless and suicidal. I understand that it is chemical and I am not asking anyone to worry about me, I have an incredibly understanding girlfriend who also has hashi's who supports me and I get through it. But my point is that the fact that I am still swinging up and down is making my life borderline unmanageable.

I was told that slowly my thyroid would just die and then my dosage would level out. My endo initially told me 1-3 years, so going into year 4 and still dealing with this, I am concerned.

I've talked to one of those rare, really decent endo's about Armour, which I read on the internet to be a wonder drug for some people. He said that because I have T1 diabetes as well, he recommended against it in my case. That was a year ago though and I am looking for some way to try to take control of my situation as I feel that I simply have to do something as the way I am doing it is just not working. I am toying with trying it but, in addition to his rather trusted advise, it is of course scary to change to something new as that a new adjust period might be a thing.

I've also heard good things about functional medicine, but as a T1 diabetic, the idea of further eating restrictions sounds complex and less than optimal unless it is my only option. I also have my suspicions that the fact that I not only have hashimots, T1 diabetes but also severe allergies to lots of stuff, asthma and a sensitivity and a propensity to side-effects from most drugs that my bio-chemistry is probably too complex in all it's internal interactions to really benefit from a lot of stuff like functional medicine, although I could be wrong.

It's possible or likely that all the immune-system conditions I have are all interacting to make my hoshi's go all over the place like it has been and worry that there might simply be no solution for me given the tools medicine has in 2015.

Questions:

Will my thyroid eventually die and my dosage stabilize and if so, how long can this continue to take? Has anyone gone into a 10th year still having swings?

Any serious advice for ways I can take control of my situation and spend more time as myself and less time as this other guy, who is a depressed, depressing shadow of me who just appears and hangs around and ruins my life?

Sorry so long, I haven't talked to anyone about this and I really am at the end of my rope. thanks a lot,


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## Andros (Aug 26, 2009)

Hi and welcome! I am sorry you have so many challenges here.

First question; have you had an ultra-sound of your thyroid? I am wondering what criteria was used to diagnose Hashimoto's!

Others will be along to comment. I am sure we can offer you some very helpful information and support.


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## Lovlkn (Dec 20, 2009)

It can take a lifetime for a thyroid to completely die off.

Do you have any recent labs with ranges you could post?

An ultrasound is necessary to see if there are nodules which can cause swift swings in thyroid hormones.

Are you under the care of a mental health doctor for the suicidal thoughts?


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## qqq (May 16, 2015)

When i was diagnosed they did the blood test and found the antibodies that were present indicating it.

Suicidal thought are a side effect of low thyroid. By addressing the thyroid I am addressing the problem. I do not think I am in real danger of that, but when the thoughts cross my mind, I realize it is a red flag to up my dosage and that fixes it slowly.

Would an ultrasound be something I would talk to an endo about and I am surprised none of my many endos have never brought up the ultrasound before.

When you say it can take a lifetime to die, can you elaborate on that some more for me. Is it common for it to be still causing this roller coaster for me after 4 years? Is it appropriate to discuss some sort of treatment to kill my thyroid and would this conversation also be with an endo?

Test results from about 3 or 4 weeks ago. 75mg synthroid had been a great dosage for a few months and then I slowly got depressed, upped my dosage to 88mgs synthroid, waited 6 weeks for it to get in my system then got blood tests to confirm that I had guessed right and it turned out that this time I seem to have. However in the past few days I have been experiencing what I have come to recognize as low-thyroid symptoms, irritability, laziness, and the beginnings of mild constipation and bad skin. I am weighing the value in adjusting my dosage based on symptom again or waiting a few more days and seeing if it gets worse. It's a familiar guessing-game scenario that I have to face and it is disappointing that it seems like only last week did I get back to being myself I usually hope for longer windows in between swings.

TSH

TSH 1.610 uIU/mL 0.450-4.500 01

Thyroxine (T4) Free, Direct, S

T4,Free(Direct) 1.59 ng/dL 0.82-1.77 01

Triiodothyronine,Free,Serum

Triiodothyronine,Free,Serum 3.1 pg/mL 2.0-4.4 01


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## Lovlkn (Dec 20, 2009)

> Suicidal thought are a side effect of low thyroid. By addressing the thyroid I am addressing the problem.


Not really - suicidal thoughts are not a normal side effect of low thyroid. Depression yes - but suicidal not and if you are suicidal you need to be speaking with somebody. If thyroid med's get you out of it - Great! But you still need a professional monitoring you if you are having suicidal thoughts.

http://www.mayoclinic.org/diseases-conditions/hypothyroidism/basics/symptoms/con-20021179


Fatigue
Increased sensitivity to cold
Constipation
Dry skin
Unexplained weight gain
Puffy face
Hoarseness
Muscle weakness
Elevated blood cholesterol level
Muscle aches, tenderness and stiffness
Pain, stiffness or swelling in your joints
Heavier than normal or irregular menstrual periods
Thinning hair
Slowed heart rate
Depression
Impaired memory



> When you say it can take a lifetime to die, can you elaborate on that some more for me. Is it common for it to be still causing this roller coaster for me after 4 years? Is it appropriate to discuss some sort of treatment to kill my thyroid and would this conversation also be with an endo?


Alot depends on the antibodies you have and those antibodies eventually will destroy your thyroid. This can take a long time and like you have experienced cause swings in required medication dosages.

Nodules are most likely involved.

Surgery or RAI would be the two choices to permanently destroy your thyroid. With RAI it is not instant like surgical removal and you will continue to possibly have the swings and many times a 2nd and even 3rd dose is required before your thyroid is completely killed off.

Have the ultrasound and post the results here.

Please find a counselor to help you with your suicidal thoughts. That is out of the norm for thyroid disease and if you are having those thoughts - you need to be under the care of a professional.


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## joplin1975 (Jul 21, 2011)

The short answer? Remove it.


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## qqq (May 16, 2015)

I retract my comment referencing 'suicidal thoughts' and would like to amend it to simply be 'depression'. I appreciate the sentiment but assure you I have it under control and really appreciate keeping this thread to strictly thyroid treatment advise.

Would you recommend the surgery over the pill?


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## Octavia (Aug 1, 2011)

qqq, we have people on this forum who rode the rollercoaster for 10 to 20 years (or more) and FINALLY opted for surgical removal. They wish they would have done it at the beginning. You've been extremely patient as you and your doctor have tried to get this under control and managed well, but really, after four years, I think you've given it a more than reasonable effort, and it's time to think seriously about surgical removal.

I can't speak to the RAI ablation (I had surgery), but based on what I've seen/heard from others here, it seems that the surgery is the preferred option over RAI. Andros, one of our more prolific posters here, had to have RAI three or four times in order to completely kill off her thyroid. With surgery, it's one and done, and you can get on with life.

Have you discussed surgery with your doctor?

I think joplin sums it up beautifully above with "The short answer? Remove it."


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## joplin1975 (Jul 21, 2011)

Agree with Octavia's answer completely.


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## aliciahere (Apr 16, 2015)

There is a lot of good advice here! I would also recommend looking into celiac disease. It's another auto-immune disease, and they tend to run in packs. Especially since you mention the food sensitivities. I was quite depressed when I was on my celiac challenge, with mood swings, and that has levelled out since going gluten free.


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## qqq (May 16, 2015)

My girlfriend says that after the surgery there can be an adjust-period where things are difficult. She has a friend who had the surgery and had such wild mood swings immediately after he had to be institutionalize for 6 months.

If I opt for that route, is this something I might have to deal with?

It seems the reading I do a lot of people say "complications are rare and for them it was an amazing, quick fix" but I see a notable number of "this had side-effects and issues." The "1.2 percent of cased result in permanent nerve damage is a scary number, that's not insignificant, among other concerns.


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## joplin1975 (Jul 21, 2011)

Oh sure. It can take time to find the right medication & right dose (check out my signature!). But don't be afraid of that. Honestly? Those post-surgical fluctuations are minimal compared to what you are going through. Those few months of discomfort were WELL worth the long term benefits.


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## Lovlkn (Dec 20, 2009)

> Would you recommend the surgery over the pill?


Absolutely Surgery over the Pill.

Find an experienced surgeon - one that does 4-5 thyroid removals weekly.


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## qqq (May 16, 2015)

There are that many thyroids being removed that some guy is taking out 30 per month?

My girlfriend is getting cross with me about this. She says I should investigate other options before I consider surgery. I agree with her that surgery is always a drastic step with real possible complications and I am all too aware of the seriousness involved.

But I am not aware of other options and it seems you guys, who understand my situation first hand, seem to be overwhelmingly encouraging me to get the surgery and my instinct says it is kind of my only option.

It honestly doesn't seem like there are options to explore, beyond waiting for what could be the rest of my life and in the mean time riding the hell rollercoaster up and downand going bald.

I'm obviously making an appointment on monday but are there any other options to weigh here or things I should know? This issue is all I can think about and I the idea that this surgery might be some sort of major improvement verses the story of my girlfriends buddy who was institutionalize for 6 months after having it removed, it's alot.

To complicate the issue, I don't trust endos. I know some are good but without giving you my whole history, I had a very bad series when I was first diagnosed and the medical board is still involved with one situation. Going from one ignorant doctor to a negligent one to one who was incompetent....It's an been an unbelievable series of events. Honestly, people I have told the whole story to have trouble believing some of the situations I have had to deal with but I had bad health insurance. I digress though.

Anyway, thank you for your advise on this.


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## Octavia (Aug 1, 2011)

qqq said:


> My girlfriend says that after the surgery there can be an adjust-period where things are difficult. She has a friend who had the surgery and had such wild mood swings immediately after he had to be institutionalize for 6 months.


I have NEVER heard of anything like this. I'm not saying it didn't happen, but it must be extremely rare, and/or there were some underlying issues that caused much more difficult than normal complications.

Sure, some of us spent several months "dialing in" on the right dosage of replacement meds (or finding the right replacement meds, such as Synthroid versus Armour), and during that time, there will likely be some fatigue, but to be institutionalized? Really? Like I said, that has to be extremely rare. Are you talking about a mental institution? I just can't imagine how things would get THAT bad...

Also, to put things in perspective: yes, you and your girlfriend are going to read some nightmare stories on the internet. But those are not the norm. The people who have done well after surgery far outweigh the horror stories; but those people who have done well aren't writing about it on the web. They're out there living their back-to-normal lives!

My personal situation? I had my thyroid removed due to cancer (as opposed to the ups and downs of Hashi's or Graves), and I had a very easy time getting to the right dosages and the right replacement meds. It's not rocket science, and I have a feeling it will be far, far easier than what you've already dealt with over the past 4+ years.


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## qqq (May 16, 2015)

I'm not reading horror stories on the internet, this was a close friend of my girlfriend. I have a very close personal friend who had hoshimoto's and it interacted with her birth control and she went from the most stable, likable person I have ever known to institutionalized as well. Her horror stories are nightmare fuel.

I understand that these are exceptions and that most people have no issues. My girlfriend has Hashi's and she went on synthroid and it was no big deal at all for her, as well as plenty of people I know.

I myself am not most people, unfortunately, and have been prone to side effects, sensitivies, allergies. Hoshimoto's isn't the only immune disorder and in almost all the treatments for all my other issues, the straightfoward 'this works for most people' treatments have yet to pan out as any sort of simple or straightforward affairs.

I understand that most people don't have complications but experience has taught me to brace for the worst and if this is the first medical thing that plays out with no complication I suppose I will be surprised and greatful, but I am honestly very scared that it might be very possible that when I do this, I will end up one of those people writing horror stories on the internet that you are dismissing.

Don't get me wrong, I am glad to hear you say that you have never heard stories like this. But a 1.3 percent chance of permanent nerve damage is a pretty high chance, for example. And that isn't even what I am worried about. Dialing it in isn't rocket science for you, whom I assume has no autoimmune issues, but for the past 4 years I haven't been able to dial it in on my weird body and with other hormonal issues complicating things (T1 diabetes, for example and it's fluxuating blood sugar level). I worry that the combination of all my other hormonal imbalances and conditions will be a perfect storm of hell.

On the other hand, I don't feel like I have a choice as I simply can not go on with it fluxuating like this.

Forgive me if this sounds somewhat emotional or difficult of me. This is a very difficult decision and the fact that I am sort of going against what doctors usually recommend for Hoshimotos and that I feel it is a more dangerous procedure for me than it is for most people but also that I have to make it because I can't deal with this as it is anymore, it's a lot.


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## joplin1975 (Jul 21, 2011)

Yeah, what Octavia said.

Look, I was severely under-medicated after my surgery. Check out my signature. TSH of 121 at about nine weeks after surgery. Undetectable free t4 and t3 levels. 27 pounds gained. Sore joints. Muscle cramps. On and on I could go.

BUT...I never missed a day of work. I never missed a day of barn chores. I traveled fairly regularly. I lived a pretty normal but fatigued life. I may have been frustrated, but I was not near institutionalizations. Not near that. I don't know what happened to your friend, but to blame it on thyroid completely is a little...odd.


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## qqq (May 16, 2015)

27 pounds?!


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## joplin1975 (Jul 21, 2011)

Yes.

I have since lost it, by the way, since my meds got dialed in.


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## Octavia (Aug 1, 2011)

qqq, are you trying to decide between continuing to find your ideal treatment without ablation/removal...versus you've already decided that you want ablation/removal, and you're trying to choose between RAI and surgery?

If you have such serious concerns about surgery, maybe it's realistically not the best choice for you. And that's okay. That's why options exist...you know?


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## qqq (May 16, 2015)

I think the consensus has been that surgery is the way to go, unless you happen to disagree.

I have serious concerns about the surgery but I also have a serious problem with going on with these swings. I feel like both options could lead to different potencial problems and I am just having a tough time deciding between 2 bad choices.

I am kind of trying to talk myself into surgery, I guess. But I am mostly just weighing what you guys think. Am I worrying too much about the surgery or is there some other treatment or option? I really want to figure out some plan that confronts this that I can feel sort of good about.


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## joplin1975 (Jul 21, 2011)

I think we are all respectful of differences of opinion. If you aren't into surgery, then you aren't.

What you are hearing from us is that, while none of us WANTED* the surgery, many of us did (for various reasons) and the vast majority had a positive experience in which we feel like we've regained control of our lives. When you go from lots of years of suffering to relative normality and feeling like yourself again, it's hard not to be enthusiastic about endorsing surgery.

That and, many of us have been posting on these boards for some time and while some people have had relief of various degrees from different options, it seems like a long term, non-ablation option is just not out there.

*I was crazy opposed to surgery, but didn't have much choice (cancer). Going into surgery, I had non-stop panic attacks and was obssesed with the idea that I'd never feel normal again. Hysterically crying in the way to the hospital, blood pressure through the roof. You name it, that was me. That was coming up on four years ago. With time comes perspective. I don't want you to think that I (and probably most of the other posters) haven't been in your shoes and haven't felt what you are feeling.


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## Octavia (Aug 1, 2011)

I wonder if talking with a couple of experienced surgeons might provide information that could help you with your decision. Have you ever been seen by an ENT? There are a few different types of surgeons who perform thyroidectomies, and ENTs are one type. Some General Surgeons do thyroidectomies, too. But the VERY important thing is to go to a surgeon who performs MANY thyroidectomies with very few negative outcomes, instances of nerve damage, etc. And you need to feel perfectly comfortable "interviewing" any potential surgeon with as many questions as you need to ask to feel comfortable (or to decide he/she is not the surgeon for you).


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## qqq (May 16, 2015)

Yeah, the next step is checking in with my endo (really a formality) and then interviewing surgeons when it is time to commit.

@koplin I appreciate that post a lot. I've been thinking about this a lot for the last few days and I hear what you are saying, thank you.

Honestly, today is one of those days where I feel like myself again. On days like this, I feel like it is all behind me and it will never be a problem again. Which is wrong of course, but it FEELS that way, ya know? Every time I stabilize I kind of don't want to think about it and live my normal life again. Realistically, I know that this nice time will likely pass and when I go high or low again, I am sure I will make the choice then to get the surgery.

It's easier to look at this as less dramatic on days when my head is clear like this.


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## Lovlkn (Dec 20, 2009)

> Am I worrying too much about the surgery or is there some other treatment or option?


It took me 4.5 years to become comfortable with my decision to have surgery.

Looking back, I wish I would have had surgery sooner.

It was much easier dealing with dialing in replacement medications than it was dialing in anti thyroid medications for me. I was diagnosed as Graves disease , but had antibodies high for Hashimoto's.

My surgeon diagnosed me with Hashitoxicosis, both Graves and hashimotos happening at the same time. A recipe for a lifetime of thyroid imbalance.

Post Thyroidectomy and a few years - I FEEL FANTASTIC. It isn't about my thyroid any longer.

Good luck with your decision and if the anxiety is too high when you decide surgery, ask your doctor for some lorazapam to help you take the edge off - until your surgery date. Thyroid disease causes anxiety and it sounds like you have received your fair share.

((hugs))


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## gr8bliss (May 20, 2015)

I totally understand where you are coming from qqq. I have been doing the rollercoaster for 10+ years and I am also as you say 'not most people'.If its a common side effect/allergy/sensitivity then I probably have it. If its a rare side effect/allergy/sensitivity then it seems like I am all the MORE likely to have it. I had a dangerous reaction to MRI contrast the other day( which they say is very rare) and then I had a reaction to one of the meds they gave me to stop the reaction, lol. I also have other autoimmune issues other than Hashi's but I think they were all initially caused by the Hashi's and I hate it. My husband has been asking me lately can't I just have it removed. I had honestly never considered it before and like you it sounds both attractive and scary. Attractive to not have to deal with the constant fluctuations and scary because if something can go wrong history suggests it probably will :-/


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## gr8bliss (May 20, 2015)

I was reading many testimonies elsewhere ( can't get link to post) that Thyroidectomy doesn't relieve Hashi's symptoms most of the time.


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