Hashimoto's in the USA

So I am not from that side of the pond as most of you are. I happened upon this site by happenstance & have found it very, very informative. So thank all of you up front for sharing your stories, experiences, ups & downs. It has made me feel normal in a very not normal world.

I have been considered hypothyroid since 1999. I have been put on & taken off levo several times throughout the years. Tests come back normal & they will down my dosage - come back what they consider normal again & they take me off. I go back in 4-5 months because I am worse than ever & they put me back on. Right now I am only taking 125 mcg of levo 1x daily & 50,000 units of D3 1x per week.

I have been to several doctors & most of them do not want to listen. I have been told that I am overreacting, this is normal & just part of how some people with hypo react to the meds & I have been told that I am flat out crazy & need to see a psychiatrist to get a hold of myself. Needless to say I have not been back to one of those doctors.

I went in July & was finally diagnosed with Hashimoto's by my new GP. She actually listened & ran tests that I didn't think she would run. One of those was to check my RA factor & my vitamin D levels. Vitamin D is extremely low & my RA factor came back high. So she referred me to a rheumatologist & an endocrinologist. The endo I went & saw is the one that told me I am crazy. I didn't go back to him. My rheumatologist requested further testing & that is the main reason that I am writing.

Tests were conducted on November 18, 2016:

Vitamin D - 17.5 (Abn: L) - this is after being on 50,000 units since July 2016 - normal is 30-100

Sed Rate - result 9 - normal is 0-30

Creatintine Kinase - result 54 - normal is 30-223

CCP Antibody - result 0.8 - normal 0-5.0

ANA (Antinuclear antibody) - result detected (Abn: A) 1:320 or greater (Abn: A) & Nucleolar (Abn: A)

Rheumatoid factor - result less than 10 - normal less than 14

ANA profile (dsDNA, Sm RNP)

DsDNA Antibody, IGG - result less than .1 - negative

Sm/RNP Antibody, IGG - result 2.5 - less than 16 negative

Scleroderma (Scl-70) AB - result 3.4 - less than 16 negative

JO-1 Antibody, IGG - result 2.3 - less than 16 normal

SSB (La) Antibody, IGG - result 1.1 - less than 16 negative

SSA (Ro) Antibody, IGG - result 1.7 - less than 16 negative

He also took xrays of my ankles & hands & they show no erosions, no significant osteoarthritis.

So I go back to see him in April 2017 to conducted these tests & xrays again because I had a positive ANA test.

I am scheduled with a new endocrinologist on March 3, 2017. He is highly rated by several of my friends & it took me 2 months to get the appointment scheduled & then I had to wait 3 months for the actually appointment.

My question is what do I ask him? I have 3 typewritten pages of issues that I have going on. From pain in my joints, to fatigue, memory issues & on & on. My rheumatologist thinks that it is all thyroid related, but he is hesitant to explore any further testing into my thyroid because that is not his area of expertise.

What tests should I ask for when I see this new endo? How in depth do I go at our first appointment? Should I just give up & keep living with the pain, the mood swings, the fatigue & the hopelessness? I don't want to be like this anymore & no one in my family understands. They try to, but then they get angry because I don't feel like doing anything & struggle just to go to work. It is causing so much stress at work & at home it is ridiculous.

Some guidance would be greatly appreciated. Thank you for taking the time to read this.

7 Replies

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  • Hello gzc😊

    I'm having trouble with fatigue and depression on levothyroxine.075mcg. My TSH is 2.9 and my dr won't do any further testing .

    Last year I went to a naturopathic dr and he put me on natural dedicated thyroid ( NDT). 120mg and I lost weight and I could stop dieting like I have to do now just to keep from gaining weight. It was great but when my family dr found out my TSH Was .01 he freaked and put me back on levothyroxine and now I'm right back where I started I gained 10 lbs right away . The people on this site are more informed than I am about TSH levels and symptoms. I just wanted to respond to your post because I can relate to your frustration. All the best of luck. Julia

  • The most important is to get your FT4 and FT3 tested, because it sounds like you don't convert very well. And, it's low T3 that causes symptoms. Nothing to do with the TSH and the T4.

    You know you have Hashi's, so you don't need your antibodies tested again. You know your vit D is low, and that will be causing a lot of aches and pains. You just have to keep on supplementing that - but I really don't think you're taking enough.

    It would be a very good idea to get your ferritin, vit B12 and folate tested. As your vit d is low, they could be, too. And, if they are low, they will be causing bad symptoms, too. But not all endos are interested in nutrients. They don't understand them.

    So, seems to me, your priority is to find out how well you're converting. :)

  • gzc721

    Hi there. I am also in the US and was diagnosed with Hashimoto after the birth of my daughter 10 years ago. I have been prescribed both synthroid and cytomel (generic) but that wasn't enough as a still suffered from weight issues, chronic cough, low Vit D, low energy etc. I used to give myself B12 shots as well. I just felt that my organs and body were just not happy.

    Needless to say, I finally researched / changed my diet and am now taking some specific vitamins and this has made such a dramatic change in my overall health. I have lost weight and no longer have cough, aches / pains and have energy again.

    If you're interested and need more info email me at xxxxxxxxx and I will tell you what helped me in more detail. Hope this helps!!

  • Maybe you could try naturethroid, it's seems to be very successful reading the posts. Sadly we can't get it here easily.

    Also once your Vitamin D levels are up you should hopefully have less aches and pains, I'm in the same boat.

    One thing that helps me with pain in joints is to avoid the nightshade group. Potato, tomato, eggplant...

    Are you gluten free? With Hashimotos there's a huge link with leaky gut so being gluten free is very important.

    There's some amazing experts in the US

    Dr Datis Khazzarian books and website

    Kris Kresser

    Susan Blum

    Paleomom

    Also sooo many functional Drs, that's where I'd go if I were you. Only a handful here in the Uk sadly and none near me. You'll get understanding there and lots of help to heal.

  • Thank you!!

  • I have Hashi's and I totally agree, gluten is FUEL for auto immune inflammation :-(

  • Thank you everyone! I have been researching heavily for the past 6-8 months & I am slowly but surely removing gluten. It has been difficult to convert the family & the cost has sometimes been an issue. But we are definitely getting there!

    I will check on those other tests & see what happens. I will keep you posted. Again thank you, you guys are encouraging & help me see the positive!!!!

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