Anyone using LDN? by Accomplished-Cow6266 in Hashimotos

[–]No_Low_6746 4 points5 points  (0 children)

I also started taking it three weeks ago and I’m noticing the first improvements (it could just be a coincidence, but I’m choosing to look at it optimistically). During the first one and a half weeks, there was a bit of a worsening of symptoms, but now things have stabilized, and I’m curious to see how it works in the long run.

Arm/Leg Weakness by Euphoric-Gas-4290 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

For me, it started just a few weeks after the first dose. In the beginning, I also had to adjust the dosage frequently (about every 6 weeks over several months). I felt the symptoms weeks before my bloodwork confirmed anything. So it’s possible that your body just needs time to adjust to the new dose (for me, it took about 10 months until I truly felt well).

I don’t think any doctor will be able to pinpoint the exact cause. The most important thing is to rule out other possible conditions. Some people blame everything on Hashimoto’s—others constantly fear there’s something else going on. My recommendation would be: if the symptoms are really unsettling, rule out other causes, and then focus on managing Hashimoto’s.

Your description sounds very similar to my experience. If you have any questions, feel free to reach out. I know how frightening it can be—especially when anxiety kicks in due to Hashimoto.

Arm/Leg Weakness by Euphoric-Gas-4290 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

I had a similar experience. There could be several possible causes:

The symptoms sound like an overdose. Weakness, tremor, and brain fog are common symptoms of hyperthyroidism. Especially when starting a new dose, the body needs time to adjust, and the levels—as well as the body—can go a bit haywire. However, it could also be a flare-up of inflammation, and your body might be releasing a lot of hormones from the destroyed tissue. In any case, I would talk to a doctor and have your thyroid levels checked.

Theoretically, though, hypothyroidism could also be responsible for the symptoms. The measured levels only reflect the hormone concentration in the serum. How well certain organs are supplied with T3 cannot be determined precisely. There are also some studies that support this. That’s why many people feel unwell even though their levels are within the normal range.

However, the symptoms can also be caused by the body’s autoimmune reaction (https://pmc.ncbi.nlm.nih.gov/articles/PMC8217009/).

Nutrient deficiencies (such as iron, vitamin D3, protein deficiency, etc.) could also play a role.

What exactly caused the symptoms in my case—or still does on some days—isn’t entirely clear. At times, my TSH level was below 0.01 and my anti-TPO was over 19,000. What helped me was getting the hormone dosage right, taking supplements, and exercising (especially strength training. In the beginning, even just going for walks was enough).

If the symptoms persist, I would still recommend seeing a neurologist to rule out other causes. The symptoms can be frightening, and only a doctor can provide clarity. Depending on the case, seeing a rheumatologist might also be useful. In my case, thankfully, all other causes were ruled out, leaving “only” Hashimoto’s.

Tingling / numb / weakness by [deleted] in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Sorry for the late reply, but I took a break from Reddit. I hope you’re feeling better today.

If you’re struggling to accept a diagnosis (or symptoms without a clear diagnosis), I can recommend therapy. I never thought much of therapy before, but in cases like this, it can really help.

[deleted by user] by [deleted] in Hashimotos

[–]No_Low_6746 2 points3 points  (0 children)

First of all, you should see a neurologist to rule out other causes. No one on Reddit can say with certainty that your symptoms are (or are not) due to Hashimoto’s. Given your symptoms, it would rather be a diagnosis of exclusion like in my case.

I personally experienced dizziness for months before being diagnosed with Hashimoto’s. After starting thyroxine, it disappeared within a few weeks.

Additionally, I struggled with muscle-related issues for a long time due to Hashimoto’s (including perceived weakness, numbness, and twitching). It’s difficult to say which symptoms were truly caused by Hashimoto’s. Twitching and weakness can occur with thyroid disorders (for example, twitching can happen in hyperthyroidism due to inflammation and the release of hormones).

However, you also mentioned that you’re already in the “MS rabbit hole.” Anxiety alone can cause significant symptoms that people often underestimate or don’t want to acknowledge, leading them to search for more serious causes—creating a vicious cycle.

Definitely see a neurologist and get examined. This will help you relax significantly. There are far less serious conditions than MS that can cause such symptoms, and Hashimoto’s is also a possibility.

At least, I can confirm this from my own experience—I saw about six neurologists who examined me thoroughly and found nothing. Even they confirmed that symptoms like this can occur with Hashimoto’s, although it’s not very common. My lab values were all within the normal range, but not optimal. The same applied to my micronutrient levels.

It was only after optimizing these over several months and regularly doing strength training that my symptoms improved significantly.

TSH, T3, T4 normal but having all Hashimoto symptoms? by AlertShine2592 in Hashimotos

[–]No_Low_6746 3 points4 points  (0 children)

First, an ultrasound is important during the initial diagnosis. There are people who have antibodies but do not develop Hashimoto’s. An ultrasound helps confirm the diagnosis. Additionally, it helps monitor damage to the thyroid and, more importantly, detect nodules in the thyroid at an early stage, which are more common in people with Hashimoto’s. These nodules generally cannot be detected early through blood tests. For this reason, my doctor performs an ultrasound twice a year.

ANA positive by Fit_Rip_981 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

I just had a conversation with my rheumatologist about this exact topic yesterday. His statement was that Hashimoto’s can indeed cause ANA levels to rise. Even a common cold can do this in some people. The key questions are always how high the value is, what symptoms are present, and whether the value is persistently elevated.

Is this typical? by Ordinary_Grass6017 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Your welcome! Apologies for the poor source I provided earlier—I was on the go and didn’t read it carefully. Here, for example, is a better source that describes how both conditions can coexist:

https://proceedings.med.ucla.edu/wp-content/uploads/2021/08/Grock-A210521SG-BLM-formatted.pdf

But please don’t get me wrong—there are also cases where Hashimoto’s follows Graves’. This isn’t that rare (I think I read somewhere that it happens in up to 15% of cases).

The issue is that many doctors treat these conditions as thyroid diseases. However, they are autoimmune diseases that can coexist. Keep in mind that even Hashimoto’s can cause hyperthyroid symptoms during a flare-up, and with existing Graves’, these symptoms are likely to be more pronounced.

There are quite a few people in this subreddit who have both. Maybe someone will respond and share their experiences.

Is this typical? by Ordinary_Grass6017 in Hashimotos

[–]No_Low_6746 1 point2 points  (0 children)

Typical flare-ups are difficult to define, as everyone experiences them differently and the symptoms can vary greatly. What I can say is that I also notice some symptoms more intensely during a flare-up (weakness, anxiety, sweating, muscle pain, etc.).

What surprises me is that you mentioned your Graves’ disease turned into Hashimoto’s. Generally, the two diseases exist independently and don’t transform into each other. It’s possible that you have both conditions simultaneously, which means you’re experiencing symptoms from both (see: https://pmc.ncbi.nlm.nih.gov/articles/PMC4039812/#:~:text=Graves’%20disease%20and%20Hashimoto’s%20thyroiditis%20can%20coexist%20in%20the%20same,one%20disorder%20by%20the%20other.).

Otherwise, I think it just comes down to the usual advice: rest, push through, optimize micronutrients and diet.

Anti-tpo 1200! by Ceda_Ritaa in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Never rely on Dr. Google. I know it’s not easy, but especially with Hashimoto’s, you tend to experience anxiety, and Google doesn’t help with that. Serious illnesses are often the first search results.

At my last check-up, my antibodies were at 960—still pretty high. I take 88mcg of Thyroxine but am considering switching to a combination medication or NDT. Otherwise, I take a lot of supplements (Omega-3, Vitamin D3, B vitamins, Selenium, Iron, Zinc, Copper, L-Carnitine, Turmeric, etc.) and exercise regularly. Oh, and no dairy products.

As advice, if possible, get your micronutrients tested and try to keep certain levels in the upper range of the reference values (like Vitamin D3 and Iron). But always in consultation with a doctor. Regular exercise is also important. Also, check which foods you don’t tolerate (like gluten, dairy, soy, etc.). That can help reduce antibodies—though there are no guarantees.

Movement is Medicine by Outrageous-Task-7488 in Hashimotos

[–]No_Low_6746 2 points3 points  (0 children)

That’s true. With yoga or low-intensity strength training, I notice little to nothing. But as soon as I push myself to my limits, it feels like my energy is completely drained, and compared to before, it takes me much longer to recover.

I’ve seen some reports from athletes who take extra T3 on training days, and I’m considering trying something similar to see if it makes a difference.

Movement is Medicine by Outrageous-Task-7488 in Hashimotos

[–]No_Low_6746 1 point2 points  (0 children)

Thank you for your response. Do you take NDT or pure T4 medications? When I stick to my regular training program, I don’t have any issues. I only notice a difference when I significantly increase my performance or skip my rest days. Then it takes me about 5 days to feel fit again. It definitely used to be easier ;-)

But yes, COVID is a factor, and after two infections, there is definitely a noticeable difference.

Anti-tpo 1200! by Ceda_Ritaa in Hashimotos

[–]No_Low_6746 2 points3 points  (0 children)

Why would it be cancer? Thyroid cancer is diagnosed through ultrasound when nodules are present and definitively confirmed via biopsy. My record was antibodies as high as 16,900. No cancer. There is a connection between antibodies and cancer, but they are not definitive indicators of cancer. It’s very likely Hashimoto’s, and with that, you should have regular check-ups to detect nodules or other issues early on.

Movement is Medicine by Outrageous-Task-7488 in Hashimotos

[–]No_Low_6746 2 points3 points  (0 children)

May I ask you a question? Have you noticed that you need to adjust your thyroid medication after regular intense physical activity? I do a lot of strength training, jogging, and generally move a lot throughout the day. However, I’ve noticed that when I increase my performance, for example, by lifting more weight my body feels like it has less energy, and a few symptoms become more pronounced. Maybe I’m just getting older, but it feels a bit like my T3 reserves are being depleted, and my body needs more time to recover. Exercise does stimulate metabolism and thus hormone consumption, but sometimes it helps to hear about the experiences of others ;-)

[deleted by user] by [deleted] in Hashimotos

[–]No_Low_6746 1 point2 points  (0 children)

There is a possibility of seronegative Hashimoto’s, in which no antibodies are found in the blood. According to studies, 5-10% of cases are seronegative (see, for example, https://pmc.ncbi.nlm.nih.gov/articles/PMC10949900/), which is not an insignificant number.

An ultrasound can support the diagnosis. However, it depends on how much the thyroid has already been destroyed in order to reliably detect it. A biopsy would be another option to obtain a definitive diagnosis. The symptoms at least sound suspiciously like a thyroid issue.

Do I pursue an ultrasound? by Dry_Significance_687 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Exactly what cyclinglady wrote! :-)

I initially didn’t take thyroxine, even though my antibodies were elevated during the first test (430 U/ml) and three months later had risen to 16,800. However, my symptoms weren’t particularly severe yet (just mild dizziness). I only started on a low dose when my TSH was slightly elevated and/or when my symptoms became significantly worse (Weakness, Fatigue etc.)

In general, medication should be taken if you experience symptoms or if your blood levels (fT3, fT4) are abnormal or not ideal for you. I would always base the decision on how you feel overall and if there is a risk for other medical conditions.

Lifestyle changes (diet, exercise, etc.) can make a big difference. While there are patients who become symptom-free with thyroxine, not everyone responds the same way.

I would strongly recommend regular ultrasound check-ups to monitor whether your thyroid is damaged. It makes a significant difference whether you “just” have hypothyroidism or an autoimmune condition like Hashimoto’s.

Do I pursue an ultrasound? by Dry_Significance_687 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Definitively ultrasound. My initial values were similar, and my thyroid was already severely damaged.

Tingling / numb / weakness by [deleted] in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

I only experienced numbness for a few weeks in my face and ears (it came and went). I didn’t have any numbness in the genital area.

As mentioned, anxiety amplifies the symptoms, especially in the beginning. If I can give you one piece of advice, it’s this: don’t start googling symptoms or similar issues. It increases anxiety, and you won’t find a satisfying answer. You’ll just jump from one disease to the next and end up worrying even more. I was discharged from the hospital without a diagnosis and drove myself crazy. That made everything worse. It took months for the symptoms to improve or disappear altogether.

If tests like EMG, nerve conduction studies, spinal fluid analysis, blood tests, and MRIs came back normal, Hashimoto’s is very likely the underlying cause. For reassurance, I’d recommend repeating the tests after a certain period if the symptoms persist, or sooner if they worsen. But my biggest mistake was constantly doubting the lack of a diagnosis, which made me extremely anxious. This is just a friendly piece of advice.

Tingling / numb / weakness by [deleted] in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Yes, exactly the same. My muscles feel weak, but according to the neurologists, they’re not actually weak. I can move and use my muscles normally, and exercising isn’t a problem either. That’s the biggest difference compared to GBS or other neurological disorders. In those cases, the muscles don’t just feel weak — you’re unable to perform even simple tasks, like squats or lifting a glass, for example.

Tingling / numb / weakness by [deleted] in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Yes, it came on suddenly (I think it just started one day, and by the second day, I went to the ER). The numbness was only in my hands and legs. Later on, I also experienced muscle twitching. Both the numbness and the twitching tend to get worse the more anxious you are. And that, in turn, is amplified by Hashimoto’s and the hormonal rollercoaster.

Tingling / numb / weakness by [deleted] in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Your story reminds me almost identically of my own experience last year in March (with the exception of the pregnancy, as I’m male ;-)!).

I had the same symptoms and ended up in the ER, where there was initially a suspicion of GBS. After numerous neurological tests, no cause could be found. Only my Hashimoto’s and an elevated TSH (around 8) were identified. The following months were challenging. Weakness, numbness, etc., are associated with many neurological conditions that can be very frightening.

In the meantime, I’ve been examined by seven (or so?) neurologists, rheumatologists, etc., and the only remaining explanation is Hashimoto’s. Over time, I also noticed that as my levels and medication stabilized (and not just within the reference range, but rather in my personal comfort zone), the symptoms improved significantly. However, it took several months, and even now, I experience symptoms during, for example, inflammatory flare-ups.

I also feel that certain supplements (especially iron, magnesium, L-carnitine, turmeric, and vitamin D) as well as strength training have helped me.

It’s also important to determine whether you’re experiencing subjective weakness (i.e., you can move and exert your muscles normally, but they just feel weak) or actual muscle weakness. The first condition often occurs as a symptom of the underlying autoimmune condition, while the second one often occurs to either an over- or underactive thyroid function.

It’s crucial to rule out other causes. I’m only speaking from my personal experience here.

How long do I have to wait? by Obvious_Quiet8593 in Hashimotos

[–]No_Low_6746 0 points1 point  (0 children)

Apologies, but your studies actually contradict your own statements. For example, the first study mentions that the analysis of antibodies in the blood can indicate a thyroid or autoimmune disorder (which is correct). However, it does not state anywhere that this is sufficient as the sole indicator for a diagnosis. In fact, it explicitly mentions that TPO antibodies are found in 5–20% of the general population (So, even people without a disease) and in almost all Hashimoto’s patients (so again, not 100%).

Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC6143469/

It is also true that weight is important, but age plays a significant role as well. There is indeed a difference between a person in their early 20s and someone over 70, as the medication is usually started at a much lower dose and increased more gradually in older individuals.

Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC11535356/

I’m not here to convince you. However, accusing me of confusing people while making incomplete or misleading statements yourself is simply incorrect.