New Hashimoto's Dx

Type 1 and LADA
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Hey all, it has been a while, to say the least.

I am popping on here because I was recently diagnosed with Hashimoto’s disease by my PCP. I will explain:

I have been feeling very off with tons of symptoms that have lasted over 6 months. I thought it was stress because my husband and I were living with my in-laws until our home was built. However, 6 months here in our home and my symptoms kept getting worse; muscle and joint pain, extreme fatigue to the point of not being able to get out of bed, extreme brain fog (can’t form sentences properly), no sex drive, weight gain, very dry skin, I could go on. So I asked my primary doc (she is the only one I see) for some thyroid tests. She only tested my TSH, which came back normal.

I refused to stand by and take my TSH as a tell-all, and asked her to run a full panel which she did (although I had to ask the lab to run an additional test for my T3 as she didn’t have that on the order).

She ran 2 antibody tests, and checked my Free t4 and I asked for the free t3. My T4 came back normal, but my T3 slightly low, my antibodies very high. I got a call from the nurse who said I have Hashimoto’s; that’s it. I know what it is because my mother has it (another reason I wanted to get further testing), but she said no treatment because my numbers aren’t bad enough.

I personally thought that my T3 being low at all was a concern, but they don’t seem to think so. However, I definitely have Hashimoto’s and I knew I needed some type of treatment or change in lifestyle because I couldn’t go on feeling how I was. I know that the autoimmune attacks which cause high antibodies are probably what are making me feel horrendous. Unless, I have hypothyroid as well? I want to trust my doc but I know that a lot of docs don’t know a lot about thryoid conditions. My PCP is great with trusting me with my diabetes care, which is why I don’t see an endo; I don’t feel the need to. My last A1C was 5.6 (just got it a month ago) and every one before that has been around 6 for the past 2 years, everything since Dx has been below 7. I feel like i have a good grip on my diabetes management, and since there aren’t very good (or very many) endos in my rural area, I haven’t bothered.

However, I’m starting to think that I might need to see one. I am willing to travel to find a good one as long as our insurance allows. The time has come that my husband and I have started to think about starting a family, and I know that not only does my diabetes have to be in check, but thyroid plays an important role as well. Should I see an endo to get further testing or info about my thryoid? From my understanding from what the nurse said, is that I basically have to wait until my thyroid dies in order to go on meds.

I researched a ton about Hashi’s after getting the call and decided to cut out gluten from my diet just to see if it would help my pain and chronic fatigue at all, and I feel like it has actually made a difference! I really wanted a way to lower my antibodies, and I didn’t want to take my docs word for it that nothing could be done right now. The change in diet has me feeling closer to normal, although I still am tired just not as tired. Some days I have more energy than others, and I find that stress is definitely a trigger.

But knowing that I might want a child within the next year or couple of years, I want to make sure I’m doing everything I can possible to make sure my body is in good standing. So what are your thoughts? Should I get in to see an endo for Hashi’s? I know it won’t hurt to see one, but finding one is the issue. I’ve started my search but also with COVID, I’m reluctant to jump into seeing several right now to find the right one.

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Go to the endo and switch doctors. Maybe even switch to an internist as your pcp, they are a little more aware with diabetes and thyroid issues at least. This reminds me of when I first started having symptoms of type 1.

I had asked if I could be type 1 and was told no with no testing done, but I knew I also had symptoms of a sluggish thyroid so I asked for thyroid testing which she did and told me I was fine. But I got copies of the test and looked it up and while I was in my medical groups normal range I was not in the AMA recommended guidelines.(BTW a lot of the different medical groups have different ranges that they consider okay)
I started a natural supplement and she did keep doing the test every 6 months so I could tell how it was working. I did manage to get into the AMA recommended ranges working at what was the right supplements for me.

BTW When I was sent to the first endo who turned out to be a real jerk. I was told by him I wasn’t a type 1 and he didn’t bother testing me either and he said my thyroid was fine too and didn’t even want to tell me my test results even with repeated questioning. I did refuse to go back to him and I ended up switching doctors to an internist who sent me to a new endo who immediately did the testing and properly diagnosed me as type 1.

Not only did that endo properly diagnosed me for type 1 she ran a bunch of the thyroid tests automatically. She said my thyroid wasn’t okay but functioning okay, if I got tired she would put me on thyroid meds. They would ask me that at my visits and run the blood test to keep track of it.

Eventually I slacked off my natural supplements, I could tell my thyroid was acting up again because I am more likely to wake up sweating in the wee hours of the morning. So of course the next endo visit, I’ve just been seeing her a couple of years as I have moved, I get asked how am I feeling my thyroid is functioning okay but not okay. I might need medication.

I told her I this has happened before and I was able to improve it with certain supplements so I will try that again, so she is going to retest me in 3 months.

But go to an endo, and hopefully it is a good one as there are jerks out there. I remember my moms thyroid testing as okay, but she had all the symptoms of low thyroid (they probably just did the one test) so finally they put her on thyroid and she ended up feeling so much better. I also think this is critical because the thyroid helps balance your other hormones and if you want to try to have a kid this could play a part in it. It wasn’t until I got my thyroid under control that I got my menopause symptoms under control. The thyroid plays such a critical role in hormone control.

For me switching doctors originally turned out to be the best thing!

This is a nice simple explanation that someone had written once, sorry I don’t remember who!!!

Whilst the FT4 is, generally, a more useful test than the most usual TSH, for a better picture, you need to know your T3 score too.

In essence, TSH is a signalling hormone,signalling the thyroid to push out T4. Our body then converts T4 to T3, which is the active hormone.

The TSH score tells us our brain can ask for action. The FT4 informs a rough gauge for the amount of T4 the thyroid is secreting. The T3 is the action hormone, and without that at a decent level, symptoms can be dire for some.

Not everyone’s thyroid can react to the call to action (TSH). Not everyone can generate enough T4, for generation, and not everyone can convert T4 into the active T3.

Without testing TSH, FT4, T3 along with Thyroid peroxidase (TPO) and Thyroglobulin (Tg) antibodies nobody has the full picture. In many cases, even if they test for antibodies, they usually only test for TPO.

A bit like diabetes, our thyroids are very complex glands, but it is central to our whole metabolic systems, and therefore, energy levels.

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Thank you thank you!! I’m sorry you had to deal with jerk docs, I know I’ve only ever had one good endo (when I was first dx and he moved away). Ever since then I’ve been on my own. All the ones around in my area have bad reviews, so I’m looking into traveling 4 hrs within my state to see one. I really don’t want something important to be missed, and with my T3 low, it makes me concerned that my body isn’t turning my T4 into T3 properly. Thanks for the info and your story! Makes me feel not so alone, and I’m glad to hear you’re doing better as well!

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I’m thriving! Thank you!!! @daisy707!!!

I am wondering if you can set up a teleheath visit? I don’t see any reason they actually have to see you in person. It would be so much easier.

You can use the excuse of seeing them that you’ve heard so much good about them!

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That’s great to hear! :slight_smile: And yes! I’ve thought about this too! I plan on hunting this week, calling a few offices and seeing what I can do! If nothing else, have all of my lab results faxed to another doc to look at!

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At 21 I went to the doctor because I was losing weight and had a upper respiratory infection for a month. Also thirsty and all that. I was 145 lbs at 6’3. I had never been sick before that. Nothing requiring much more than a bandaid.
The endo I met told me I was type 2. My fasting glucose was 660. He told me to go on a low carb diet and come back in a week. The next two days I got sicker and my vision was blurry. I went to the hospital and was immediately diagnosed as type 1 in DKA and I spent a week in the hospital.
I think we expect doctors to be perfect or at least good enough to catch every thing important. But sometimes they miss things or they make wrong diagnosis.
We need to be vigilant as patients.
When I was 21 I had no idea what was happening or what to think. I went to the hospital because it was late at night and doctors offices were closed.
Now I’m older and I question everything and I get second opinions. Looking back, a super thin kid at 21 with a 660 fasting. It seems obvious to me I was type 1.

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My endo diagnosed by Hashimoto’s with blood work and ultrasound. He said my thyroid was shriveled up. Nancy50

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I have hashis too. Treating it with both t3 and t4 helped me the most and helped with bg management.

You can not control autoimmune hypothyroid with diet. Your body will continue to destroy your thyroid. The diet is good to follow, whatever you can, but you need to be on meds. Tsh should be at 1 or lower to feel ok for many. The most important is how you feel. I will not say I am thriving but it helped a lot to go on meds with my bg which is horrific otherwise and still pretty bad.

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My doctor said that I have Hashimoto’s because of the high antibodies, but everything besides my T3 is normal. I’m assuming she’s not putting me on meds yet, because the full attack hasn’t happened and my thyroid is still functioning. I’ve read a lot and some people don’t end up in hypothryoid till later on down the line you can have Hashi’s, but not hypothyroid apparently), but I still plan to get a second opinion. Either way, the diet was only to hopefully get my antibodies down, as there are triggers to causing the immune response. I wanted to at least try since my doc wasn’t going to do anything to help me yet, and I can’t get in to see an endo until I find one. I definitely couldn’t go on feeling as low as I was. My BG is doing fine, I haven’t found any changes in my control. I think my Hashi’s was caught really early; not happy about it but doing what I can during these crazy virus times. :confused:

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That is good the bg is ok at least. As I told you what your doc considers to be normal numbers are actually probably not normal for hashis. You need tsh at 1 or below. Diet will have 0 effect on getting antibodies down.

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First I have never been diagnosed with Hashimotos, I just have thyroid issues. Both my last endo and current one have been taking a watch and see how you are doing and if you feel tired we will give you thyroid meds approach.

But past experience…
I was going through menopause and having a heck of a time and then I started losing hair and feeling like my tongue was swollen. So I started on Atomidine iodine. I had tried other iodine supplements before and they hadn’t done that much for me but a customer had recommended this one and said it made all the difference and within 2 weeks of me taking it, no more hair loss and my tongue felt better. So about a month later on my regular doctors visit I asked her to check my thyroid. She said it was fine. I was at 3.5. That is when I read what the AMA’s recommendations which was under 2.00 and knew I was way off.

So 6 months later I was even better 2.8, so I added Natural Factors Thyroid Health Formula and my numbers ended up AMA right in range at 1.75 so I stopped the iodine and the next visit my numbers had crept up again to 2.2. So I decided both were better for me. My menopause symptoms drastically improved too.

But I get slack about it, but the first sign for me is always waking up with sweating at about 5 am and my DP acts up a lot. I start on my iodine and I get better, but this time my numbers were high so I started back on both and I get tested again in about a month.

I used to recommend the Thyroid Health Formula to a bunch of customers constantly and several came in with better blood tests. I used it on one of my dogs with good success too. Iodine in a few rare cases can be a problem. these things won’t stop Hashimoto’s, but it can help the thyroid work better.

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I have Hashimoto’s, celiac disease, and insulin resistance. Your doctor gave you okay advice. When I got my Hashimoto’s diagnosis in 1997, my forward-thinking doctor gave me a tiny dose of Armour Thyroid even though my TSH was in range. The hope at the time, was that a small dose might slow down the destruction of my thyroid. At the time I had no obvious thyroid symptoms except for an enlarged thyroid and some nodules. As years passed my thyroid dosage increased. I could tell I needed an increase in dosage because I because I felt the need for an afternoon nap and felt cold.

When I went through menopause, everything went wacky. I experienced thyroid swings (hyper and hypo). I also because severely anemic (well, had moderate anemia all my life). That is when I
My GI found celiac disease. I went in for a routine colonoscopy screening because I hit 50.

One year after my celiac disease diagnosis and adhering to the gluten free diet, my thyroid was no longer enlarged. No more nodules. Unfortunately, my thyroid was permanently damaged. I must take thyroid replacement for the rest of my life. The good news is my small intestine has completely healed.

How long have you been gluten free? I strongly advise getting tested for celiac disease which is linked to Hashimoto’s and TD1. Know that it can develop at anytime and is genetic. While you might never develop celiac disease, your children are at risk. All TD1s should be screened.

All celiac disease testing requires you to be on a full gluten diet for 6 to 12 weeks. If you have only been off for a week or two, consider testing. A formal diagnosis helps you to adhere to the diet. In any case, please research.

Many think that a gluten free diet can help with autoimmune thyroiditis. Maybe it can, but perhaps people just have undiagnosed celiac disease. Researchers do know that only 20% of the population had been diagnosed. That leaves 80% undiagnosed.

I hope this helps.

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True. As a celiac and Hashi’s, my antibodies are still elevated, even my celiac disease antibodies are still elevated. However, my thyroid enlargement and nodules are gone and a repeat endoscopy/biopsies show complete healing. Antibodies testing helps diagnose, but is not meant to gauge healing.

I feel best when TSH is just under 1. My doctor knows this and doses accordingly.

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I’m a firm believer in that we know our bodies best! I’m glad you took a stance to get further advice and help! I know that with autoimmune thyroid issues, it will be inevitable that mine will eventually crap itself, but in the meantime I’d like to do whatever I can to feel my best. I’ve also looked into a natural doctor (can’t think of his title right now) that has helped many people with thyroid conditions and supplementation. I know that if you are low in thyroid hormones you of course need them, but I’ve read a lot about antibodies (autoimmune) and being able to slow down progression of Hashi’s into hypothyroid. I think with any chronic illness, it’s definitely a day at a time sort of thing, and to do your own research and definitely listen to your body!

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I’ve been gluten free for about 4 weeks now. I see my normal doctor in December, and have thought about celiac testing. I figured I would give it some time to see how I as feeling on it as well. I don’t want to say I feel better without gluten, without also saying that in no way did I lower carbs. I know some people who cut gluten feel great but that’s because they cut out all breads and pasta, etc. but I found alternatives right away (I love my bread lol). But it has alleviated a lot of the symptoms I was having, especially my joint pain. I feel that everyone is different, so I’m definitely paying attention to my body and whether going gluten free helps my thyroid antibodies or not, I have definitely noticed a big difference in how I feel. I accidentally ate something with gluten a few days ago and have been feeling the tiredness and joint pain again. It’s slowly subsiding, but nothing else would have caused those symptoms so I’m really wondering if it does affect my body negatively. Thanks for sharing with me, I will definitely get into celiac testing with my doctor!

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Could you send me any scientific studies on needing the TSH to be below 1? I am at 1.63 right now, and I’d love to read more and also take anything I can into my doctor. Since it’s so hard for me to find and endo, and my doc does seem to listen to me, I’m wanting to share with her any info I find helpful!

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Oddly my father who also has Hashimoto’s when he takes the thyroid medication his antibodies go down. Well mine are still going up apparently well they seem to be holding steady at their current level but they’re certainly not going down. And I do the diet too LOL

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@daisy707, Please keep us caught up on your quest. Hashi is a crazy problem to treat. The anatomy & physiology, along with negative feedback loops have most folks pulling their hair. Your analysis and findings will help a great deal. Please share what you find.

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Will do! I just found an endo, I will see him August 10th. If I find out anything from there I’ll be sure to post!

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Yea! My supplements still worked for me! And in just a couple of months. I have never been diagnosed with Hashimoto’s. I just have a thyroid that likes to not work properly and my numbers go up. The last 3 tests each have been progressively worse, I just ignored it until it was mentioned again that I might need a thyroid prescription. I really just need to stay on it, but I get lazy.

May 23rd Free T4 test was 1.1 (Normal range per my lab/Doctor 0.6 - 1.7 ng/dL)
TSH 7.65 (Normal range per my lab/Doctor 0.34 - 5.60 uIU/mL)

July 20th Free T4 test was 1.1 (Normal range per my lab/Doctor 0.6 - 1.7 ng/dL)
TSH 3.65 (Normal range per my lab/Doctor 0.34 - 5.60 uIU/mL)

The two products that have worked best on me are
Heritage Store Atomidine, (originally by Edgar Cayce)
Natural Factors Thyroid Health Formula (originally by Dr Murray)

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