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Comment by _fq4v | Hacker News Reader

This supports my lived experience. Found to be incredibly low in vitamin D, and diagnosed with autoimmune thyroiditis. Doctor said to supplement with 2000 IU being the max per day.

After seeing no improvement whatsoever in vitamin D levels, and after talking with others with the same issue, I self medicated to 10000 IU / day.

Lo and behold my vitamin D levels went back up and my auto-antibodies went back down.

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Interesting to hear of a connection between this, type 1 diabetes and autoimmune thyroid disease (Hashimoto's?). I have celiac, also an autoimmune disease, and one of the symptoms is tingly and numb extremities, peripheral neuropathy. I think that's related to the ataxia side of celiac and nerve degeneration from nerves losing their sheathing.

Prior to diagnosis, I learned that the numbness is also a symptom of Vitamin D deficiency and found that taking supplements helped.

Have you ever taken a fluoroquinolone antibiotic at any point in your life?

Look into r-lipoic acid, low dose 100mg (take one per day, with food), from the Doctor's Best brand (available on Amazon). You might consider that for the peripheral neuropathy, it does wonders for some people.

Well, shoot. I just took ciprofloxacin for a week following a minor surgery, and noticed that I've lost some of the sensation in my upper right leg. I assumed it was caused by the surgery, but in six weeks, it hasn't improved. Not exactly life-altering, but it does feel pretty weird when scratching an itch and I'll get odd tingling there sometimes while trying to sleep that feels more warm than painful.

> Nearly all quinolone antibiotics in modern use are fluoroquinolones ... One example is ciprofloxacin (Cipro), one of the most widely used antibiotics worldwide.

Cipro and fluoros in general can be extremely dangerous (and Cipro is the light-weight among the class, the others are truly terrifying). It's now carrying two black-box warning labels from the FDA, which they slapped on it after dragging their feet for over a decade about several well-known and horrific side effects, including causing nerve damage.

If you've taken it in the last year or two, I'd suggest taking high absorbtion magnesium (citrate etc). Some of the particularly bad effects from Cipro seem to be caused - if not entirely, at least in part - by low magnesium levels. It strips magnesium out of various tissue and leaves it necrotic, which is how it destroys tendons for example (one of the FDA labels is for spontaneous tendon rupture). If you had low magnesium levels before taking it, the concern is that much greater. The earlier you take the magnesium after completing Cipro, the better.

The other compounding action on fluoros, including Cipro, is NSAIDs and steroids, they dramatically increase the damage from the antibiotic (the instructions you get with Cipro properly warn against taking NSAIDs with it, but how many people don't realize how dangerous taking Advil around the same time might be?).

Cipro is being implicated in all sorts of interesting things:

https://well.blogs.nytimes.com/2012/09/10/popular-antibiotic...

https://www.forbes.com/sites/melaniehaiken/2012/09/30/antibi...

If you spend even a few minutes digging, you'll find a large array of high quality sources now discussing it. 20 years ago it was mostly fringe sources discussing it. The FDA though, was warned as far back as the early 1990s, for example by a paper out of UCLA med circa 1994 that perfectly laid out how dangerous it was. The FDA's behavior was either malicious (protecting pharma revenue), or they were scared to pull such a valuable broad spectrum antibiotic.

Cipro was force fed to soldiers during the first Iraq Gulf War (on a non-proven claim that it could protect against anthrax). The last few years, since the FDA slapped a warning on it for peripheral neuropathy (and seeing as it's being implicated in two dozen other major health problems), veterans groups have been looking into it as a possible source of gulf war syndrome. [1]

There are increasing links suggesting the huge increase in women being diagnosed with Fibromyalgia, may in fact be effects due to how common Cipro has been prescribed for things like urinary tract infections. If you get injured by Cipro, doctors will often immediately jump to diagnosing you with one of three things (typically ignoring the blatant Cipro tie): lactic acidosis, rheumatoid arthritis, or fibromyalgia.

It's merely my opinion, but I think Bayer is probably due a trillion dollar lawsuit. Anyone that has ever taken Cipro has likely suffered serious damage from it, which may not show up for many years (the FDA says the damage from Cipro may continue for several years). At least in the US, millions of people are prescribed it every year.

[1] https://www.militarytimes.com/2013/11/01/new-fda-warnings-on...

Sounds awful. I had a girlfriend who took Cipro repeatedly for urinary tract infections. Another, fibromyalgia - I wonder whether she had taken those drugs. Most likely.

Fucking tendon ruptures. My girlfriend is a runner and she had a tendon rupture in her knee that was caused by cipro. Fucking nasty and immoral what the regulators and drug companies have done with this antibiotic.

Thanks, I'll check out that supplement.

I looked up the list of those drugs (-floxacins?) and I don't recall having taken one of those. I was actually prescribed Ciprofloxacin earlier this year, merely as a prophylactic after a very minor surgery, and after looking into it I decided to not fill the prescription.

Yes, Hashimoto's. All auto-immune diseases are linked. If you have one, you have a higher chance of having another. This doesn't mean you will have the other, just that the number of people with T1D among hashimoto's patients is higher than the number of people with T1D among the general public, and vice versa.

This is similar to my lived experience. I was diagnosed with Hashimoto's 3 years ago. I was lucky to find a great doctor that specialized in it. He put me on 15000 IU / day for 3 months because I was so severely low in addition to having high antibodies. Within 3 months my levels were so much better. I still take 10000 IU / day along with selenium, iron, fish oil and good diet/exercise and all my levels have been in check for 2 years :)

Did you experience any other benefits from that regimen of supplements?

Yes it completely changed my entire well being. Muscle twitching stopped, major back aches and leg cramps went away, headaches went away, brain fog went away, concentration went up, sleep improved, skin improved. To be fair, I made other lifestyle changes too in addition to the regimen of supplements.

Selenium has done wonders for me too. It's sad that so many patients have to find this information on their own. Glad to hear your doc is on top of it.

Could you write a bit about the role of selenium in your treatment? Thanks.

Sorry just now saw this. The article here goes into things pretty well for my situation at least http://www.lifeextension.com/protocols/metabolic-health/thyr...

I don't want to give any kind of medical advice especially without knowing the situation of others. If you are concerned though, it doesn't hurt to get blood work done. Following are the common things to test for if you think you may have Hashimoto's or thyroid issues.

Vit D, Ferritin, Thyroid peroxidase antibody (TPO), Thyroglobulin antibody (TGAb), Thyroid-stimulating hormone (TSH), Free T4 Test

I've got a nice doctor. I was also incredibly low (getting muscle twitches) and he put me on 15000 IU a day. Did wonders. :)

Can you explain muscle twitches vs Vitamin D?

Could it also cause cramps?

> incredibly low in vitamin D

How much low, in ng/ml or nmol/L?

Not GP, but my level was 8 nmol/L in the middle of summer. No medical explanation could be found for why I was so deficient, and I get at least 1hr sunlight every day during my daily cycle commute (UK). Symptoms were depression, tiredness and disturbed thinking.

I was prescribed vitamin D3 10,000 IU/day.

This is extremely low. And what about now, after the 10,000 IU/day supplementation?

I was around 15 nmol/L (I think). 20 was the minimum. I checked a few months after starting my new regime, and it had gone up to about 50. I then tried backing down to 4000 IU a day and it fell back to around 40, so I went back to 10000, and I haven't checked since then, but I do know my antibody counts are down.

I'm under close supervision for vitamin D levels. Previously, I was taking 100,000IU D3 (50k 2x daily). I'm not taking any right now but my next panel is in a few weeks so we'll see if I get back to taking it.

If you're taking little green footballs of oil-based D2, I suggest dry D3. I had much better response.

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