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25+ year battle with Hashimotos, high TSH, miserable
Hi. I'm a guy in my 40s living in a rural area of the western US and have been battling with Hashimotos for more than 25 years, since I was a teenager. Despite spending a small fortune seeing a multitude of doctors (GPs and endocrinologists), I continue to have major symptoms that severely impact my quality of life. I'm wondering if any of you could lend me some advice as to what to do next!
Long story short, no matter how much medication I take, no matter what type of medication I am prescribed, I seem to have an extremely high TSH (highest I've seen was 138). I'm miserable. I've been miserable for years, and I'm at my wit's end.
I've been on Synthroid, Levothyroxine, Tirosint and even Armour. In fact, I was taking 300mg of Armour at one point and was still seeing TSH levels in the 40-60 range. I have been told by more than one doctor that I'm not taking my medication regularly or correctly. I insist that I'm taking it with water on an empty stomach -- with no other meds. I wait 4 hours before taking my other medications (PPI, for example). A few have had me try taking it at night instead of morning, but the outcome is the same.
I have had nearly crippling fatigue, not to mention horrible brain fog, dry hair, dry mouth, dry eyes, joint stiffness, etc. Bad depression and anxiety. I'm overly hot all the time and sweat excessively. I have struggled with keeping weight off, and sometimes I'm forgetful when it comes to short term memory. I also struggle with digestion as well -- eating almost anything (fatty or not) can be highly sedating. Testing has indicated no correlation between the food issues and blood sugar.
I've seen my TSH levels fluctuate a LOT despite no obvious changes to my daily medication routines, diet, etc. In March, my GP convinced me it was time to have my thyroid removed because she felt like the most variable, unstable part of the picture was the gland itself, and it was making testing and dosing difficult. I had an ENT do the surgery and she told me that my thyroid gland looked "bad" -- it was overly small and said having it removed was the right call (no cancer, though, thankfully).
Since the surgery, however, my TSH won't drop under 100. I'm taking 150 mcg of Levothyroxine at the moment, which I insist isn't enough given that I weight 230-240 lbs, but my GP feels we need to titrate the medication slowly. She has been trying to get me into an endocrinologist but nobody in the state that is on my insurance can get me in any sooner than 6-9 months from now.
My GP also sent me to a gastroenterologist to make sure I don't have an absorption issue. He scoped me, treated me for a fairly bad case of gastritis, but insisted I didn't have an absorption issue.
I should also mention that I'm on testosterone therapy. What else is there to try? It's frustrating because every endo I see has strong opinions on treatments, medications, etc that highly differ from the endo before. Who do you believe?
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@venture I have had those conversations about dosage with the GP -- she says we have to go about the dosing "very slow". She is convinced that upping my dose that fast will cause problems. At this rate it will be another year before I'm at a reasonable dose. She did admit, however, that I need to be seeing an endo and did refer me to one. I couldn't get in, but another endo (arguably a better one) in that same office had an opening and that's the one I'm scheduled to see.
@oscarde1, the ENT I saw suggested I see an endo but didn't recommend any specific one. The one that a number of folks have recommended is the one that told my wife she was too "fat".
I am in a very isolated rural area. The town I live in has less than 2,000 people in it. In fact, I had to travel out of the area to get to the ENT for the thyroid surgery I mentioned earlier, and in fact, had to stay the night at that hospital because if I'd gone home and there had been any complications, I was too far away from the ENT for a timely intervention. A large city is a good hour and a half away over a windy, high mountain pass that can be treacherous in the wintertime, not to mention expensive as far as gas is concerned. Most specialists are closer to 2.5-3.0 hours away.
I love living in rural setting, but we all know everything has its pros and cons. Access to good healthcare can be a hard thing to come by in many rural communities.
@jsb2272 Now that I know your problem getting specialists, ask that Teladoc for some suggestions. They have better insight into the various doctors and facilities in your area. Also, have you checked into any agencies that may assist you with bills pertaining not just to your condition, but things not covered by your insurance, etc. ? The Teladoc may give you some suggestions there as well.
If not, start inquiring, even if you have to do so by phone. Do you have a computer of your own, or are you using someone else's computer? If so, a search for these facilities can help. I may also be also to help you with searches as well. If you don't have a computer of your own, again, Teladoc and phone. Make sure you do let the Teladoc know just how isolated you are. You described your situation correctly to let me know the problems that is causing so make sure you do that with him/her also.
My next suggestions to you would be to make a list of questions that you want to ask that Teladoc so you can get the most benefit from your visit. Also, I would add that you may want to ask for help with your weight problem that you say you and your wife have. I don't mean the expensive weight loss drugs, but the name of a dietician that could help you. Weight stability is a life-long watch, unless you are one of those lucky people who never have to watch your weight. Most of us aren't in that category. However, since you live in such a rural area you probably don't have someone there, although I would check first before you talk with the "Doc" to see if you do. If not, again, a referral to a registered dietician that can help with your nutritional needs--for both of you. They also can be reached via the Teladoc system.
People always hear about weight problems impact blood sugar, blood pressure, kidneys, etc., but they don't realize it also impacts, greatly, on the dosages of medicines, and in your case hormone therapy, especially with no thyroid. All of this makes me think that until you get your weight under control along with careful monitoring of dosages of medicines, etc., you will be doing a seesaw battle. I don't know if you wife is on any medications, but even if she isn't, the two of you do need to watch your diet closely and be supervised so that you can get the most benefits from that also. You are both still young and it will help, not only with your health issues, but also keep any further problems popping up in the future.
One bright note in this is that both of you have a weight issue and can help the other stay on course. You can keep each other on track and empathize with each other. Any more questions, etc., you know where to find me. Good Luck and start on that list of questions.
Sorry your present Dr refuses to look in a book of recommended dosing post thyroid removal. Medicine makers have recommended dosing. I am on a med to help digest food and w/o it I will die. My Dr was clueless , not prescribing enough, I was losing weight. I walked in and gave print outs from the medicine maker. My dosage was corrected immediately.
See if you can find some dosage documentation.
A lot has transpired since my last message. I got into a good endo. She ordered a whole bunch of labs (blood draws) and a dexascan.
The good news is that I do NOT have osteoporosis from having low T, low thyroid, etc. The bad news is that my ACTH and prolactin were sky high. She started me on a prolactin blocker medication that I take once a week (which makes me tired and dizzy). She also ordered a MRI with contrast on the suspicions that there could be a pituitary problem. I got that done earlier this week.
It turns out there are no tumors on the pituitary but there is a 1.6cm "something" adjacent to pituitary that could be pressuring / squeezing the gland into misbehaving. The radiologist interpreting the results seems to think that the likelihood of the "something" being cancer is low, and seemed to think whatever it is must be growing very slowly, but suggested a follow up CT that can be used in conjunction with the MRI results. In his view it could be a bone spur, scar tissue, a tumor... he's just not sure.
The endo also put me on a higher dose of levothyroxine and added liothryonine which I am all for it.
At this point my endo has ordered the CT and referred me to neurology because that "something" isn't actually attached to the pituitary itself. The CT is in the process of getting pre-authorized by insurance. I haven't heard from neuro quite yet. In the mean time I'm receiving some iron transfusions because the endo's initial blood work turned up some anemia. I'm not entirely sure what is causing it -- it wasn't insanely low but low enough to make me feel like crap and slow my metabolism down.
All in all, its a lot to process. The physical and mental fatigue has been pretty extreme. I'm a chronically anxious guy too, so the uncertainty as to what is going on has been eating at me. It's easy to catastrophize and envision worst case scenarios even if they're unlikely. It's hard, especially with all of the wacky hormones, not to let things drag me down (the stress, the unknown), but I'm doing what I can to stay up beat and busy. I just need answers!
Thank you all for all of the support!
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1 Reaction@jsb2272 Glad to hear you are finally getting some results and action. Keep us informed. The best to you and your family.
FYI- I believe prolactin is a key female hormone. Too much , not good. The med for it may be making you anemic… just a guess. Anemia if extreme can = fatigue. Ask questions and research the med. Progress , yeah…. Wish well going forward
@jsb2272
It must be a relief to finally getting more testing done.
As I was reading your posts I wondered if anyone looked at your pituitary and now you are being tested. Did the endocrinologist mention what your cortisol level was since the ACTH was so high?
Elevated cortisol could contribute to weight gain.
I hope you get more answers after your CT scan. It sounds as if your pituitary is involved with your problems.