I feel tired, frustrated and hopeless

Question

First time seeing an Endocrinologist today & it was very interesting to say the least. He doesn’t believe in special diets (going gluten free, AIP, etc), doesn’t believe in supplements, wouldn’t prescribe LDN when I inquired about it since my thyroglobulin antibodies are over 2,000 (I’m miserable with joint and muscle pain). He simply said the optimal range for THS is around 1 and mine is too high. He’s going to get it down and keep it optimal and see if my symptoms subside. If they don’t I may need to see a Rheumatologist instead to check for other autoimmune diseases. I feel tired, frustrated, & hopeless.

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Amanda 3 years 37 Answers 750 views 0

Answers ( 37 )

  1. Oh hon, I had the same with mine. Are u U.K. or USA?

  2. How does he plan to get you in optimal range?

  3. That is just how they work. One slow step at a time. I can tell you I didn't feel any better after my antibodies came down. The symptoms could be from tsh. Not saying definitely. But he could be right. I would ask to be referred to a rheumatologist now and if you don't like this endo ask to see a different one. Its important to feel like they are listening to you. I've been on this rollercoaster for years its exhausting. Good luck getting your tsh in range should help some at lest.

  4. I know what you are going through. I have seen 6 Drs and none of them will listen. I have been trying to get into Cleveland Clinic for 2 years and it's time I call and see what's going on and try to get an appt.

  5. Does he know that hashimotos is not a thyroid disorder ? It gets treated like other autoimmune diseases . Need to bring down the inflammation and get rid of toxins , and treat infection if any available .

  6. I am with the endocrinologist. I don't think special diets or supplements will help you either. However, the only difference is as far as the supplementation goes you might need some vitamins. For example, I tested low and b12 and D so I had to start supplementing both of those and I also have to take magnesium. If I do not take magnesium and I tried to take my other vitamins I get massive migraines. I mean debilitating migraines. This tells me that I am low in magnesium. You would be surprised at how much those couple little vitamins can matter if you are deficient and them. I feel much better now that I have those things taken care of. The reason a good at 90% of doctors and endocrinologist and such will tell you that a gluten free diet or AIP or what-have-you is not necessary, is because today there is no independent scientific research that proves it be in any way affect evolve or beneficial when it comes to treating the thyroid. Of course eating healthier makes you feel better and when you cut back on junk you will obviously lose weight. Other than that though, as far as leaky gut, or affecting your brain, or affecting your thyroid there's no science to prove that as of yet. All of that being said I hope that they can get you on a proper medication at the right dose to get your TSH into an optimal range and get you feeling better. Like I said if they have not already done so I would highly suggest getting your vitamin levels tested. And yes it is worth looking into other autoimmune conditions if you still feel unwell after your levels get to where they need to be because autoimmune conditions tend to be comorbid, meaning that it is not uncommon for you to have multiples of them. The same genetic variance that cause Hashimoto's can cause other issues with your immune system

  7. Go to a functional medicine Dr. I fired my Endo after 5 years of synthroid and never feeling better. It was the best thing I ever did for myself!

  8. What kind of supplements?

    My endo is pro any diet that I think it's helping or making me feel better which is nice. Also put me on cytomel and selenium for the first year I was seeing him.

    Can you get a second opinion ?

  9. Similar experience. I was diagnosed 3 years ago. My TPO was 47 I got it down to 22 when I was strict on diet for a few months but then only went Gluten free and they went up and keeping them around 35. So it's low and I do t know if that's normal for three years in but if not then I feel diet is helping. The doctor I saw felt same way as yours but think about what's better. To allow to disease progress and treat symptoms or try to slow it down.

  10. Antibodies are just a disease marker and do not correlate to symptoms.

  11. Sounds like the endo I went to. Never went back!

  12. Hashi s is my 3rd autoimmune diseases. My T1 at 7, RA at 24, and now this. He's right about the possibility of you needing to see rheumatology, all my joint pain is my RA which is currently untreated (we're going down the list so far). My muscle pain is my vitamin D being low. I go back tomorrow and we'll see what gets added etc then.

  13. I m through with Endos. I love my Functional MD.

  14. I see an endocrinologist and naturopath. My endocrinologist admitted to not knowing enough about special diets or natural approaches but he didn't say to not do them. He also said he respects what naturopaths do and the education they have. I appreciated his honesty and believe most endocrinologists do not understand natural medicine or healing. I take medication and follow a special diet. I believe the medication helps TSH, t3, t4 levels but the diet helps manage the antibody levels. I have both Graves and Hashimotos. I have mild thyroid eye disease from Graves. The eye disease is actually caused by increased thyroid antibodies (not TSH, t4, t3). I've cut out gluten and dairy for a year and when I cheat and eat these things, my eyelids swell the next day and water like crazy. That has to mean something. I would do your own research on natural approaches or see a naturopath if you believe in it, as endocrinologists are typically not trained in these areas to give an educated opinion.

  15. FIRE HIM. Find someone else. So frustrating when an MD is so narrow minded. We aren't ALL the same.

  16. My endocrinologist told me to read The Immune System Recovery Plan by Susan Blum BEFORE she even talked about Synthroid. Just bc he does not believe in it does not mean you cannot try it. From my experience and other posts you can see it does seem to help a lot of people. Don't be discouraged. Take control of your health

  17. Sounds like every doc I have seen!

  18. Sure he doesn't want you to try diet/lifestyle changes or other holistic approaches… He'd lose business! RUN from endocrinologists! I have put my Hash's into remission for the past 4 years through AIP and lifestyle changes!

  19. Any reccomendations for someone in NYC?

  20. I'd get a second opinion.

  21. Then he's not the right endo because you are asking all the right questions and thinking about all the right things I haven't swung totally in the functional medicine camp because it's more for insurance reasons, but have found D.O to be a wonderful bridge, covered and knowledgeable if that helps!

  22. I saw a rheumatologist for joint pain and she did a bunch of test. she said there's no other autoimmune immune issues and that bc the thyroid effects every cell in the body that it includes the fluid between our joints and can make the joints feel arthritic. she said it can make the fluid more jelly like causing the joint pain/discomfort. Sorry, I didn't get a solution but it somewhat provides another possibility of what's causing the pain if you don't show signs of RA or other diseases.

  23. Endos…they all say that. Just silly and uneducated.

  24. Of course he doesn't… bc he will make less money if we all feel better.

  25. I do agree with him (in my case can't say others) that mine needs to be 1'or lower. I tried many things but that + clean eating and exercising almost everyday, has changed my life! Plus vitamin D and the sun (I moved to spain )

    But we are all very different!

  26. The only good thing I see is that he knows TSH should be at 1. Otherwise you need another doctor. I have a team of doctors, and they are all in the traditional medicine field, who all believe in gluten free and anti-inflammatory. I feel blessed and I am not on any thyroid medications at this time. I was when I changed my diet. No longer.
    FYI Hashimoto's is an immune disorder, getting your TSH back to a normal range is not normally the “fix”.

  27. Gluten free is a necessity for me for the bloating, swelling and body pains ..

  28. They don't study nutrition or natural medicine nor can they recommend it or they can loose their license. It really is a shame and people remain suffering for years until they seek a functional doctor or naturopathic doctor.

  29. Oh
    Just like my first 5 doctors. These guys are lazy and not caring enough. Diets and supplements matter a lot, I learned it the hard way. If a doc is not helping you, start reading about herbal supplements and try to go gluten-free

  30. By the way I had lots of Rheuma-like pain in 2017. the Rheumatologist found nothing. My pain and physical condition got worse, they said it must be neurological. At that point i started searching resources and books about the connection between hashi and neurological problems. Bam: gluten! Since then I am gluten free. 80% of my symptoms disappeared after the first week of gfree diet.

  31. My integrative medical dr til me about a book I just ordered it on amazon… by Isabella Wentz I'm very excited to receive it.

  32. That's why you don't waste your time going to them

  33. I find it interesting that "he's gonna get it down". Girl do some research on your own…start with the book Hashimotos Protocol by Izabella Wentz…I was just diagnosed yesterday. Let's help each other out!! I am seeing an integrative medical practitioner I will share anything I learn with you.

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