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Post by iamkristinl16 on Oct 30, 2020 16:59:46 GMT
The other day I posted about my stepdad's neuropathy. So far, there have been no answers as to what has caused it, although I suspect that his blood sugar is high and he was also told that he had Hashimoto's several years ago. His PCP told him that, but said he didn't need any meds or treatment at the time. I have always told my mom that I didn't think this was correct and that he should see a specialist but so far he hasn't. I asked her about this again yesterday and she said that the last time he had his thyroid checked it was off, and that if it was out of range again when he has it tested again (sounded like soon) that he would probably start meds.
Anyway, what are peoples experiences with Hashimoto's? Symptoms, treatment, lifestyle changes that have helped or made things worse? Any recommendations for what to say to the doctor or what type of doctor to seek? Am I right that it isn't normal for the doctor to not give any information when giving the diagnosis? No follow up other than standard thyroid testing? Or is that typical?
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Post by PolarGreen12 on Oct 30, 2020 17:08:45 GMT
I don’t know how he wouldn’t need treatment with Hashimoto’s. He should be in the care of an endocrinologist. He would need to be on Synthroid to raise his TSh number into the normal range. Without meds he would have a several symptoms, dry skin, depession, lethargic, cold, low heart rate weight gain, hair loss and some others. In women is also causes reproductive issues. Lifestyle change wouldn’t be much. Blood work regularly. In the beginning till they get his dose correct he would possibly do blood work every 6 weeks. With med adjustments depending on blood work numbers. Once it remains steady it would be every 6 months to a year.
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Post by bianca42 on Oct 30, 2020 17:11:51 GMT
The "normal" range for thyroid isn't a perfect science. My optimal is within that range. When my grandpa was within the normal range, he felt horrible. His optimal numbers where he felt good/symptom free are outside the normal.
My doctor doesn't doesn't go by just the number. He goes by how I'm feeling as well.
I did see a endocrinologist when I was first diagnosed but haven't seen anyone but my GP in years. In his case, I would push for an endocrinologist.
My treatment is thyroid meds every day and yearly blood tests to make sure I'm stable. I have had goiters on my thyroid postpartum when my hormones were all crazy, but they resolved themselves.
My symptoms have been weight gain, tiredness, hair loss, brain fog. However, the possible symptom list is huge.
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Post by iamkristinl16 on Oct 30, 2020 18:26:31 GMT
That is basically what I have told them....that the range is not always correct and that if he had enough symptoms to warrant testing for Hashimoto's, he should have been referred to someone who is knowledgeable about it.
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Post by elaine on Oct 30, 2020 19:02:47 GMT
That is basically what I have told them....that the range is not always correct and that if he had enough symptoms to warrant testing for Hashimoto's, he should have been referred to someone who is knowledgeable about it. If his blood sugar is high, he also should be seen by an endocrinologist because they treat diabetes in addition to thyroid disorders. Two of his problems could be addressed by the same physician.
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Post by bianca42 on Oct 30, 2020 20:26:17 GMT
That is basically what I have told them....that the range is not always correct and that if he had enough symptoms to warrant testing for Hashimoto's, he should have been referred to someone who is knowledgeable about it. If his blood sugar is high, he also should be seen by an endocrinologist because they treat diabetes in addition to thyroid disorders. Two of his problems could be addressed by the same physician. The biggest problem in my area is not enough endocrinologists. My last one up and closed the practice. Since things are under control, I haven't gone looking for a new one. I wouldn't be surprised if there is a wait to get into one.
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Post by Deleted on Oct 30, 2020 20:47:44 GMT
The other day I posted about my stepdad's neuropathy. So far, there have been no answers as to what has caused it, although I suspect that his blood sugar is high and he was also told that he had Hashimoto's several years ago. His PCP told him that, but said he didn't need any meds or treatment at the time. I have always told my mom that I didn't think this was correct and that he should see a specialist but so far he hasn't. I asked her about this again yesterday and she said that the last time he had his thyroid checked it was off, and that if it was out of range again when he has it tested again (sounded like soon) that he would probably start meds. Anyway, what are peoples experiences with Hashimoto's? Symptoms, treatment, lifestyle changes that have helped or made things worse? Any recommendations for what to say to the doctor or what type of doctor to seek? Am I right that it isn't normal for the doctor to not give any information when giving the diagnosis? No follow up other than standard thyroid testing? Or is that typical? I have Hashimoto's, as does my mom and 3 of my sisters. They ALL routinely see a good Endocrinologist and are on meds. My PCP has said for years that I don't "need" a specialist. I'm on thyroid meds (Levothyroxine, 75 mg), and they check my bloodwork every 6 months.
I've never heard of getting neuropathy from thyroid disease, but the Peas would certainly know!!! I'll be interested to read about it. Are you sure that he isn't pre-diabetic?? DH has diabetic neuropathy, and when he's eating healthy and moving around, his neuropathy happens to be much better. He is on Gabopentin for it. He takes 1 pill before bedtime so that he doesn't get "the jitters" with his feet/calves. He was up to 3 pills per day. HTH.
As far as the Hashimoto's, so many things could be symptoms of it (feeling cold, hot, tired, not hungry, gaining weight, losing weight......... depression...). It would be great if he could see an endocrinologist to see what's going on.
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Post by birukitty on Oct 30, 2020 20:54:11 GMT
I don't have any experience with Hashimoto's but I do have experience with hypothyroid. I have hypothyroid. I got it from my father (it's hereditary) and my grandmother. My sister also has it. Yes, I do agree that instead of just ignoring it your stepdad should have gotten treatment, and maybe meds at the time depending on his condition.
As far as hypothyroid I must take a thyroid medication every single day. My doctor prefers to treat hypothyroid with a natural form of dissected thyroid like Armour Thyroid or Naturethroid (sp?) rather than using a synthetic version like Synthroid. I agree with this. I was first put on Synthroid and felt no relief but after being treated with Armour Thyroid I felt better. Problem is most insurance companies will only pay for the synthetic versions so I pay out of pocket for Armour Thyroid ($40.00 a month) but to me it is worth it. Without it I feel cold, tired, my hair falls out, I gain weight and I have more brain fog than usual, just like bianca42 although just like she said the symptom range is huge. A great place to learn more about this is stopthethyroidmadness.com This is a wonderful site with lots of medical and practical information.
I've seen my share of endocrinologists and I must say that for some reason it is difficult, at least here, to find a good one. So many of them have vast egos and act like it's there way or the highway. They don't listen to their patients. I had one say to me when I complained that my hands are always cold, "Well are they blue? No? Then you are fine." What kind of medical answer is that? I never went back to her as you can imagine.
What ended up helping me the most is finding an Integrative doctor (this is a doctor who specializes in traditional medicine and also practices alternative approaches). My doctor is a board certified Internist, who happened in the past to study with the writer of the book "Stop The Thyroid Madness" so I lucked out. An Integrative Medicine doctor looks at the body as a whole instead of just looking at the symptom and writing a prescription for that symptom. Mine starts with extensive blood work and then working together (he really listens to his patients) we have a long consultation on how to improve what is bothering me medically. He will use traditional medicine and also prescribe vitamins and herbs in the form of supplements. I've had the best medical care in my life since I found this doctor. For me it works. I went through 10 years of what was diagnosed as "treatment resistant depression" and when finally all of the medication they tried ended up not working my psychiatrist ended up using ECT (electric shock therapy) on me 20 times. It didn't work-nothing worked. My Integrative Medicine doctor did a simple blood test on me and found out I had a genetic disorder called MTHFR that makes it difficult for my body to absorb B12 either from natural sources or from regular vitamins, even shots. If you go on long enough like this your body revolts and eventually you wind up just like I did. Once I started on the correct supplement my "treatment resistant depression" completely disappeared and has never come back. I thank God for this doctor. He literally changed my life.
I hope your stepfather can find a wonderful doctor to help him too. Good medical help is never cheap in this country. My Integrative Medicine doctor is so in demand he doesn't need to take insurance so he doesn't. I pay out of pocket to see him once a year and it's not easy to fit it into the budget but for me it's worth it. What can be more important than our own health? Good luck to your family and I wish you better health for your stepfather.
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peabay
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Post by peabay on Oct 30, 2020 21:17:21 GMT
I have Hashimoto's - they just check my levels regularly and as long as my Synthroid is doing the trick, I'm good. I feel fine on Synthroid. It's so different for everyone.
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Post by peasapie on Oct 30, 2020 22:02:44 GMT
When I was first diagnosed with Hashimotos, my thyroid would swing from high to low on a regular basis. For years. Very often my TSH (thyroid levels) looked quite normal, even though I was exhausted. This is because your thyroid is pumping out a stimulating hormone to increase thyroid function and, for a while, that works. Eventually the whole gland settles into a low function (high TSH). So he should be tested every six months or so to see how his numbers are.
With that said, I never had neuropathy with the hasimotos - not sure if those two things are related.
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Post by elaine on Oct 30, 2020 22:07:56 GMT
I don’t think that the neuropathy is related to Hashimoto’s either. Maybe diabetes related, but it’s not typically a thyroid symptom.
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paigepea
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Post by paigepea on Oct 30, 2020 22:23:51 GMT
Mine is monitored by my GP. She sent me to an endocrin dr once when I wanted to be over medicated for my thyroid, which the specialist was more comfortable with. Everyone’s symptoms vary. My dad also has thyroid problems. I heard that if your dad has it then all offspring 100% inherit it but I don’t know if that’s true. In our case, my dad, myself and my only sibling all have it.
My symptoms mostly revolve around fatigue, anxiety, headache type Pain and sore joints. The last 2 symptoms are why I ended up at the specialist. I couldn’t get rid of the pressure in my head or my join pain. When overmedicated (according to someone’s normal) my pain went away.
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Post by heckofagal on Oct 31, 2020 2:19:22 GMT
Yes, he should be seeing someone about his numbers being out of range. My Endo was a tool, I see a naturopath now who treats my thyroid issues. Yes, you need to find what range is optimal for him, as being in range but not optimal can leave some people still sick.
Also, MANY people who are hypothroid also have low B12. I did have neuropathy from being hypo but starting a mega dose of a sublingual B12 made that go away. Also I told my mother in law that after she was diagnosed hypo and she said it really helped her neuropathy, which she thought was a side effect of her Raynauds and didn’t think would ever improve. I’d suggest trying B12 as it cannot hurt, your body naturally passes any excess you do not need.
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Post by heckofagal on Oct 31, 2020 2:20:14 GMT
Yes, he should be seeing someone about his numbers being out of range. My Endo was a tool, I see a naturopath now who treats my thyroid issues. Yes, you need to find what range is optimal for him, as being in range but not optimal can leave some people still sick.
Also, MANY people who are hypothroid also have low B12. I did have neuropathy from being hypo but starting a mega dose of a sublingual B12 made that go away. Also I told my mother in law that after she was diagnosed hypo and she said it really helped her neuropathy, which she thought was a side effect of her Raynauds and didn’t think would ever improve. I’d suggest trying B12 as it cannot hurt, your body naturally passes any excess you do not need.
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Post by nlwilkins on Oct 31, 2020 10:01:03 GMT
I have been diagnosed with Hashimotos. Just about all my adult life I have been on Synthyroid. Two years ago, lumps was found on my thyroid glands and the endocrinologist sees me now every six months with blood work done. I also get a yearly scan of my thyroid to keep an eye on the lumps. One thing I found out was it is important to take your thyroid meds every day at the same time at least an hour before you eat.
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Post by honeyb on Nov 1, 2020 3:05:11 GMT
I was diagnosed with Hashimoto's due to a goiter. I saw an endocrinologist yearly and never received any treatment as my ranges were normal. I never felt I needed any treatment.
5 years later I was diagnosed with Stage 1 thyroid cancer (caught early because of my frequent endocrinolgist visits and ultrasounds). I had a total thyroidectomy and now take synthyroid daily.
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Post by questioning on Nov 1, 2020 3:23:20 GMT
I have Hashimoto's - they just check my levels regularly and as long as my Synthroid is doing the trick, I'm good. I feel fine on Synthroid. It's so different for everyone. Oh yes! Somehow Synthroid has become the big bad wolf of the hypothyroid world - but it works for me. Super annoyed my insurance has decided it isn't covered and I should go generic. Do they not calculate the increased number of blood tests and doc visits? Also - I wasn't aware Hashimoto’s was something you had for a time and got over. I thought it was here for life and the goal is to manage it.
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Post by karinec on Nov 1, 2020 3:38:38 GMT
I see an endo every 6 mos and take generic Synthroid. My gp was very laissez-faire about my thyroid issues, but my endo is an awesome dr. For many years I had a variety of issues that I feel were misdiagnosed. At 55 I feel much better than I did in my late 40s.
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Post by elaine on Nov 1, 2020 3:45:03 GMT
I have Hashimoto's - they just check my levels regularly and as long as my Synthroid is doing the trick, I'm good. I feel fine on Synthroid. It's so different for everyone. Oh yes! Somehow Synthroid has become the big bad wolf of the hypothyroid world - but it works for me. Super annoyed my insurance has decided it isn't covered and I should go generic. Do they not calculate the increased number of blood tests and doc visits? Also - I wasn't aware Hashimoto’s was something you had for a time and got over. I thought it was here for life and the goal is to manage it. Even the military, which is notorious for only covering generic, will only dispense Synthroid. I have Graves and my thyroid was irradiated out of existence and I’ve been on Synthroid for the past decade. I think that like any other auto immune disease Hashimoto’s wanes for some people over the years. My Graves finally stopped attacking my eye tissue this year after 6 years.
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Post by questioning on Nov 1, 2020 3:50:29 GMT
Oh yes! Somehow Synthroid has become the big bad wolf of the hypothyroid world - but it works for me. Super annoyed my insurance has decided it isn't covered and I should go generic. Do they not calculate the increased number of blood tests and doc visits? Also - I wasn't aware Hashimoto’s was something you had for a time and got over. I thought it was here for life and the goal is to manage it. Even the military, which is notorious for only covering generic, will only dispense Synthroid. I have Graves and my thyroid was irradiated out of existence and I’ve been on Synthroid for the past decade. I think that like any other auto immune disease Hashimoto’s wanes for some people over the years. My Graves finally stopped attacking my eye tissue this year after 6 years. I learned about Graves disease from your posts! United Healthcare gave us less than six weeks notice they would no longer cover Synthroid. I managed to get a refill before the change, amd will learn what's next this week with my endo appointment. I am so annoyed!
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Post by PolarGreen12 on Nov 1, 2020 4:09:16 GMT
Even the military, which is notorious for only covering generic, will only dispense Synthroid. I have Graves and my thyroid was irradiated out of existence and I’ve been on Synthroid for the past decade. I think that like any other auto immune disease Hashimoto’s wanes for some people over the years. My Graves finally stopped attacking my eye tissue this year after 6 years. I learned about Graves disease from your posts! United Healthcare gave us less than six weeks notice they would no longer cover Synthroid. I managed to get a refill before the change, amd will learn what's next this week with my endo appointment. I am so annoyed! They’ve got to be covering the generic version, Levothyroxine right?
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Post by elaine on Nov 1, 2020 4:20:56 GMT
I learned about Graves disease from your posts! United Healthcare gave us less than six weeks notice they would no longer cover Synthroid. I managed to get a refill before the change, amd will learn what's next this week with my endo appointment. I am so annoyed! They’ve got to be covering the generic version, Levothyroxine right? The generic of Synthroid- levothyroxine - has been shown, through research, to NOT be the equivalent of Synthroid and not as effective. It has to be pretty conclusive and indisputable for the military to not prescribe the generic.
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Post by PolarGreen12 on Nov 1, 2020 4:26:52 GMT
They’ve got to be covering the generic version, Levothyroxine right? The generic of Synthroid- levothyroxine - has been shown, through research, to NOT be the equivalent of Synthroid and not as effective. It has to be pretty conclusive and indisputable for the military to not prescribe the generic. I know. I take Synthroid because I wasn’t absorbing enough from Levothyroxine. Some people don’t have that problem though. Especially if they still have their thyroid and only need a supplement.
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Post by honeyb on Nov 1, 2020 4:29:02 GMT
They’ve got to be covering the generic version, Levothyroxine right? The generic of Synthroid- levothyroxine - has been shown, through research, to NOT be the equivalent of Synthroid and not as effective. It has to be pretty conclusive and indisputable for the military to not prescribe the generic. I tried to take levothroxine, but after 6 months and 2 dosage changes, I could not get consistent numbers. I was switched back to synthroid and mg numbers are perfect. I tried to change to save a few bucks (I pay 10% of prescription costs until we meet deductible). It was not worth the savings.
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Post by elaine on Nov 1, 2020 4:29:14 GMT
The generic of Synthroid- levothyroxine - has been shown, through research, to NOT be the equivalent of Synthroid and not as effective. It has to be pretty conclusive and indisputable for the military to not prescribe the generic. I know. I take Synthroid because I wasn’t absorbing enough from Levothyroxine. Some people don’t have that problem though. Especially if they still have their thyroid and only need a supplement. 👍🏻
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Post by PolarGreen12 on Nov 1, 2020 4:35:54 GMT
Even the military, which is notorious for only covering generic, will only dispense Synthroid. I have Graves and my thyroid was irradiated out of existence and I’ve been on Synthroid for the past decade. I think that like any other auto immune disease Hashimoto’s wanes for some people over the years. My Graves finally stopped attacking my eye tissue this year after 6 years. I learned about Graves disease from your posts! United Healthcare gave us less than six weeks notice they would no longer cover Synthroid. I managed to get a refill before the change, amd will learn what's next this week with my endo appointment. I am so annoyed! Synthroid has a discount card that promises your prescription don’t be any more that $25 out of pocket. My endo gave it to me last year when they moved me off generic. Ask yours about it for next time.
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peabay
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Post by peabay on Nov 1, 2020 13:29:10 GMT
I learned about Graves disease from your posts! United Healthcare gave us less than six weeks notice they would no longer cover Synthroid. I managed to get a refill before the change, amd will learn what's next this week with my endo appointment. I am so annoyed! Synthroid has a discount card that promises your prescription don’t be any more that $25 out of pocket. My endo gave it to me last year when they moved me off generic. Ask yours about it for next time. Holy crap - I need to get that. I'm paying about 80 bucks a month!
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Post by elaine on Nov 1, 2020 13:31:51 GMT
Synthroid has a discount card that promises your prescription don’t be any more that $25 out of pocket. My endo gave it to me last year when they moved me off generic. Ask yours about it for next time. Holy crap - I need to get that. I'm paying about 80 bucks a month! Ouch! That discount card would save you over $600 per year. 👍🏻
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Post by Deleted on Nov 1, 2020 14:12:11 GMT
I have graves disease and had radioactive ablation. Been relatively stable on generic levothyroxine for years although I need a slightly lower dose now... My teen daughter has just been diagnosed with hashimotos this year and she is cold all the time. Her first tsh was 3.5 and her second was 2.1 and her free t4 levels have been low end of normal. So we are just to get it rechecked in 3 months...but she has depression, anxiety, fatigue...we are seeing an endocrinologist but he seemed dismissive. "Nothing to do if tsh normal" We are going to request a female endo for next time. I just feel frustrated if low dose replacement could help her feel better. But I wonder would it make her worse? I was so anxious when I had too much thyroid hormone. No neuropathy in my family from thyroid and I have my mom, 2 sisters and numerous aunts and cousins with hashimotos.
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Post by questioning on Nov 1, 2020 20:02:35 GMT
I learned about Graves disease from your posts! United Healthcare gave us less than six weeks notice they would no longer cover Synthroid. I managed to get a refill before the change, amd will learn what's next this week with my endo appointment. I am so annoyed! They’ve got to be covering the generic version, Levothyroxine right? I hope so, but is it as stable? I was under the impression the generics were not. Thank you for advice about discount card!
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