[Guardia]

#1060139

I know people here aren’t doctors, but I’m hoping your experience could help me.

I’m a 20 year old female that’s been dealing with these problems for about 3 years now. It started out as nausea, which got worse and worse until I finally had to quit school, my job and horseback riding. I’m now confined to my home, and I used to leave only for doctor’s appointments, but now I find myself unable to do even that.

To summarize the symptoms:
-Nausea*
-Digestive issues*
-Bloated and gas*
-Headaches everyday*
-Occasional severe migraines (would last around 5 hours)*
-Burning gut (would wake me up at night)*
-Joint pain
-Weight loss (75 lbs – most of which occurred in a 5 month period or so – went from 215 to now holding at 140ish)
-Loss of focus and mental fog (forgetting things easily, which is not like me at all)
-Dizziness and lightheadedness upon standing up (black vision)
-Heat intolerance (always been intolerant to heat – I wear t shirts and shorts in winter and the summer always made me grumpy and I sweat easily)
-Muscle weakness and tiredness (I’ve lost alot of muscle; I can barely hold my arms up to wash my hair without my upper arms burning)
-Hand tremors (started recently – very slight, barely noticeable although occasionally it gets worse when holding something, and individual fingers will shake badly)
-Anxiety (which makes all these symptoms much worse; my anxiety only flares up when alot of people are over or I have to leave the house – probably my worst symptom)

Those with an * beside them resolved either completely or significantly after starting a gluten free diet (because I thought I had Celiac). Although the nausea persists and my diet now only consists of potatoes and diet gingerale. Occasionally some pecans. I have not really experienced any heart issues. My resting rate was in the high 80s, but since losing weight it appears to be down to 75ish. My symptoms did get worse with exercise (I’d started to feel really sick if I pushed myself), which again got worse to the point where I couldn’t even walk around on a horse without feeling like I was going to vomit. I occasionally get pangs of chest pain (lasts like a second), but very rarely.

I have seen many doctors and many have ordered blood tests (which include TSH testing). These have been the results:

November 15, 2011:
TSH: .21 (.35 – 5.00)
Free T4: 17 (12 – 22)

June 13, 2012:
TSH: .28 (.35 – 5.00)
Free T4: 17 (12 – 22)

January 8, 2013:
TSH: .42 (.35 – 5.00)
Free T4: 19 (12 – 22)

May 2013:
TSH: .37 (.35 – 5.00)
No T4 was taken

For other testing, I had an ultrasound (revealed gallstones, had it removed – everything else was fine), CAT scan of my head, endoscopy and I’ve had prescriptions for 2 types of anxiety meds (neither worked), PPIs and high strength antacid.

My family history does include thyroid issues (which includes my aunt having Graves Disease) which makes me think this may be what’s wrong. My family doc did mention my thyroid levels being low at one point (the first test I believe), but said he thought it was just an abnormality. He ordered the second test and then never mentioned it again. I know my levels aren’t extraordinarily low, but does any of this sound familiar to anyone?

I’ve been bounced from doctor to doctor, who all say the same thing (don’t know what’s wrong, refers me to someone else). I’ve seen a surgeon (had my gallbladder removed), an allergist, an immunologist and finally a GI. However my anxiety got the best of me the day of my appointment, and I couldn’t bring myself to leave (I broke down crying, shaking, felt like I was going to puke) so my dad went instead. I also learned my paperwork wasn’t being forwarded to everyone so I decided to get all my files from all my doctors (which led me to discover these TSH results). Now I have to go back to my family doctor in order to get a referral to an endo. This has gone on so long, I’m started to feel completely hopeless. And I don’t know how I can bring myself to go to another appointment.

Anyone have any suggestions, or have any insight? If I do see my family doc, I will be asking him to do more testing (another TSH test with Free T4, Free T3 and TSI included) because I know seeing an endo will take some time. Any advice or words would be much appreciated! Just feeling super down at the moment and I don’t know what to do.

(My apologies for the horrendously long post. Just needed to get it out.)

[Kimberly]

#1180698

Guardia wrote:

Anyone have any suggestions, or have any insight? If I do see my family doc, I will be asking him to do more testing (another TSH test with Free T4, Free T3 and TSI included) because I know seeing an endo will take some time. Any advice or words would be much appreciated! Just feeling super down at the moment and I don’t know what to do.

Hello and welcome! This is exactly where I would start if I was in your situation…asking the family doc to order TSH, Free T4, T3, and antibody tests (TSI or TRAb).

Having below normal TSH but normal T3/T4 is referred to as “subclinical hyperthyroidism”. The treatment is usually “watch and wait” *unless* the patient is having hypER symptoms (rapid heart rate, tremors, insomnia, etc.) or is at high risk of heart issues or osteoporosis.

Of course, many of the symptoms you listed can potentially have other causes as well, so hopefully, this next visit with your primary will help you get started back on the road to good health. You’ve done a great job of documenting your symptoms, so I would definitely print this out and bring it with you to the appointment. Hope you can get some answers soon!

[Raspberry]

#1180699

Definitely follow Kimberly’s great advice and you will know for sure whether Graves’ is causing your trouble. It seems to me that there’s more to this picture even if you do have Graves’. A diet of only potatoes and diet gingerale with the occasional pecan would make me feel completely sick if I ate it for only one day. There is no way that you aren’t developing serious nutritional deficiencies eating this way which can then cause symptoms of their own. I know with suspected Celiac it’s probably hard for you to find foods you tolerate well, but there’s a lot of gluten-free products out there in the stores now. Your weight loss and even tremors – which are key Graves’ symptoms – could be attributable to what’s happening nutritionally. I wonder if you could find a doctor (in addition to an endo) who could look at the whole picture, naturopath maybe?

[Guardia]

#1180700

Thanks for the replies.

I should clarify that I’ve had these symptoms long before my diet change (I’ve only had these eating habits for about 3-4 months, with the weight loss occuring mostly late last year) and my docs have ruled out any food related or dietary allergies or problems as the causes. And that despite this, they found no real nutritional deficiencies or issues in recent tests (which surprised even me). The only thing I found relating to my diet was my digestive issues cleared up completely or for the most part after eliminating gluten from my diet (so I might have a gluten intolerance in addition to things, which also runs in the family).

I’m mostly concerned with dealing with the anxiety and nausea, which has severely affected my life as I mentioned. Once I get those dealt with, I’m sure the dietary issue will clear up.

[Raspberry]

#1180701

Once the docs do the antibody tests TSI (thyroid stimulating immunoglobin) or TRab (thyroid receptor antibody) they will be able to definitively say whether you have Graves’ so it’s sure worth doing because your TSH does appear to be behaving suspiciously.

Still are you only eating potatoes and diet gingerale with a few pecans? Even if you don’t have nutritional deficiencies now you will – it’s inevitable. Potatoes just aren’t a complete food and some people believe artificial sweeteners can aggravate Graves. I would ask you to please reconsider what you are doing there…but I promise I won’t keep harping on it after this

As for anxiety you might want to look up Sueandherzoo’s threads because she’s dealt with this issue combined with Graves’ a lot. It is possible to get medication to help while you are sorting the rest out. Good luck to you!

[Guardia]

#1180702

I will look up those threads, thanks. I’m hoping to get something to deal with the symptoms in the meantime, so I can at least leave the house or not feel like complete garbage everyday.

And trust me, the diet isn’t entirely voluntary. I would love to be eating just about anything else, but I find if I try eating other things, it usually aggravates the nausea and my digestive issues return, although I suspect this is a result of my anxiety (I worry constantly about my nausea, and if what I’m eating may make it worse). And again, this has only been the past few months (I ate just fine beforehand, if not a little unhealthily). As I said, I imagine this will resolve itself once the anxiety and nausea is dealt with, although I appreciate the concern.

As for the TSH, is it normal to fluctuate like that? I imagine some fluctuation to be normal, but it just seems like a lot if I’m not being treated for it. Or do some things cause it to fluctuate?

[Kimberly]

#1180703

Hello – The way the body’s system is designed to work is that when T3/T4 are too high (hypER) the pituitary shuts down production of TSH so that the thyroid won’t produce any *extra* hormone. When T3/T4 are too low (hypO) the pituitary cranks out TSH to get the thyroid to produce MORE thyroid hormone. TSH can sometimes act as an “early warning system” and can fall out of range, even if T3/T4 are normal. This is why subclinical hyperthyroidism and subclinical hypothyroidism are followed very closely to see if the situation progresses to “overt” hyper/hypo, with T3 and T4 outside the “normal” range. However, TSH can also fluctuate depending on the time of day that labs were drawn (morning vs. late afternoon). We also hear from a patient every now and then who is having large TSH swings with totally stable T3/T4, but this isn’t the more common scenario.

The anxiety issues can sometimes come from having thyroid levels out of balance (including sometimes in subclinical hyperthyroidism). However, it’s also good to check to see if there is an underlying cause that requires separate treatment. Your primary care doc should be able to refer to you a specialist that can help you sort through this issue. As Raspberry noted, SueAndHerZoo has been great about documenting her experiences with anxiety.

[SueAndHerZoo]

#1180704

Hi there…. it’s me …. the Queen of Anxiety.

I have dealt with bad anxiety for the past 40 years and have tried several different things to help or alleviate it. Medication has been a God-send but what I have recently discovered is that most (if not all) is being caused by my thyroid. I had it removed on July 16th and I can’t believe how differently I feel, mentally and emotionally. I hate to be TOO optimistic but I am eventually going to try getting off my anxiety meds once we get my thyroid replacement meds stable.

In answer to your question, yes, the thyroid being out of whack, even a little bit, can cause anxiety, especially if you’re already pre-disposed to it. It was always the first symptom and most severe symptom when my thyroid was acting up, even if the blood work showed I was only mildly out of range. My endo wasn’t so sure that such severe anxiety could be caused by my thyroid but I saw it happen consistently every time my levels fluctuated.

It’s a horrible thing to try to live with and I know how badly it can take over your life. I now wonder if the fact that I’ve had an enlarged thyroid for 30 years (even though blood levels were normal) is why I’ve had anxiety for 30 years. Medical science can only prove so much…… knowing our own bodies is sometimes a better science.

Sue

[Guardia]

#1180705

@Kimberly: We’ve ruled out quite a few things, and now we’re kind of running out of ideas. And I’m kind of discouraged by my family doctor to ask any questions or ask for referrals. When this started, he did little testing (only a couple generic blood tests), and started just writing me prescriptions (2 types of anxiety meds, the PPIs and antacids) and continually refused to give me any referrals even though I asked repeatedly (at this point, we were asking for a GI referral) while trying to force me to see a shrink. He’s very flippant and disregards some of my symptoms and suggestions. I’m worried about returning to him, and him refusing to refer me to an endo or to order the blood tests. The first couple times, even though my TSH was low (as you saw) he did nothing about it. He didn’t even really mention it or ask me any related questions.

@Sue: The thing about the anxiety is it just kind of started up out of nowhere. I never was a worrier or cared about anything. Nothing bothered me. Never had any sort of problems associated with any sort of anxiety, so to have this for a symptom is really out of character. It’s been a challenge coming to terms with acknowledging that I do now have anxiety and to see it completely taking over my life is downright scary. I was hoping to get something to deal with it, even just temporarily until the cause is found, because all of this is just really ridiculous to be honest. But reading through your past threads and your post are very helpful, and I certainly appreciate it!

[Raspberry]

#1180706

Sue, it sounds like you now rule the anxiety so you are the Queen!

Guardia, any option to get a different family doctor who will take your concerns seriously and do the referrals? And btw PPI’s can cause nausea as a side effect. For a home remedy check out apple cider vinegar (standard disclaimer: not a replacement for your doctor’s advice, etc.) it helped me a lot when I had a digestive problems when PPI’s, Pepcid, Tums didn’t help or made it worse.

[Guardia]

#1180707

I was going to switch doctors after this mess was over. Trying to do so now might be difficult, as it’s hard to find doctors accepting new patients, and then to get an appointment and referral immediately. If after this round of talking to him and he’s still uncooperative, then I’ll have no choice but to try to find someone else to take me and have an appointment quickly.

I found the side effects of the meds to be my other issue, as all of them had nausea/ vomiting as possible side effects, so it was quite possible they were helping, but still causing me nausea (facepalm). I had brought this up with my doctor, but he didn’t seem to concerned over it, so I’m not sure. But I will look into that, thanks!

[Author]

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