Joint Pain with NDT: So just curious what others... - Thyroid UK

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Joint Pain with NDT

Crogers37
Crogers37

So just curious what others say about this issue, I’ve been on NDT for 8 years. First on Armour but couldn’t get dose right, either didn’t feel like enough or was way too much. Then tried Naturethroid and had horrible headaches. Finally switched to WP thyroid which seemed to be the best out of the bunch but never felt good, always had horrible joint pain and still alot of low grade headaches, occasionally migraines. I have a lot of food allergies so I honestly thought maybe it was just from eating something wrong all the time.. then I ran out of medicine and couldn’t get anymore. Within 2 days my joint pain was gone and I felt much better. That’s when I realized it was the medicine. So I switched to a compounded thyroid, compounded with sea salt and have been doing great.. actually had to reduce dosage but now I can’t get that either!! They say “nation wide shortage”. Which with all the issues with WP thyroid and nature throid and now compounded thyroid as well.. it just seems something very strange is going on. I personally think FDA is blocking production of NDT but I could be wrong. Anyway I find this strange that I had terrible joint pain on WP thyroid which was supposed to have a lot less fillers .. but fine on compounded. That tells me it’s not NDT that’s the problem, seems it’s whatever Specific NDT RCL labs was using that was the problem. Maybe how it was manufactured, the pigs it was coming from etc. I am now forced to try NP thyroid and if that doesn’t go well I’m honestly considering trying to wean off all the meds and see what happens. Any insight?

9 Replies

I found no problems with NPthyroid, smells much more pig like than Armour. You just have to try it to see if it suits you. Maybe we should ask Smithfield’s what is happening to all their pigs thyroids ?

Hi Crogers37. Some people with Hashimoto’s have similar response (increased autoimmune activity) that you’re having to NDT and cannot take it. Do you have Hashimoto’s? Way back in the beginning after I was diagnosed, NDT was the first med I tried. It was as you describe, horrible. I immediately switched to generic T3 and T4 and had no problems at all. I’ve been on that combo for years.

If you have a lot of food allergies, continuing to expose yourself to those foods means you’re keeping your immune system constantly on high alert and in a consistently inflammatory state. If you don’t already have an autoimmune disorder, being in constant inflammation and immune system set on highly reactive, under the right conditions you could acquire one.

Going off your meds would be a very bad and uncomfortable idea. Your body is not able to produce enough thyroid hormones on its own, so you need supplementation. Take away your meds and you will become very hypo. If you have Hashimoto’s, which requires daily meds for the rest of your life, without meds your antibodies will increase. Increased attack on your thyroid means more damage to it.

Throughout your reactions with meds, and changes with meds, are you monitoring your thyroid by getting full labs done every 6 weeks? Are your numbers remaining in the same spot or are they funcuating a lot?

Hi! I have been tested for Hashimotos and was negative for antibodies on three different occasions.. So they are co doesn’t I don’t have that. I also was negative for just about every autoimmune disease (lupus, rheumatoid arthritis, Lyme disease) but my inflammatory markets in blood panel are always high. I am actually very careful with my diet - gluten free, dairy free, corn free, and soy free. I also avoid some nightshades. So through your the years with all the inflammation. I chalked it up to my food allergies being so extensive there must be something I’m overlooking- never thinking it was the medicine. But within 2 days of running out the inflammation was gone. So the weird thing is if it was NDT wouldn’t the compounded one bother me as well? They made it with pure porcine powder.. I am certain my inflammation was from the WP thyroid and also naturethroid, but I don’t think it could have been the fillers bc the WP thyroid had minimal fillers. What type of generic are you taking? Is it something you have compounded?

With the compounded my t3 and t4 looked much better and I actually became hyper and had to lower dose from 97.5 to 60. I have been spacing the last little bit of compounded I had trying to get it to last as long as possible and only taking every 3 days now, so about 30 mg per day. I’ve been doing that for a month and still feel pretty good. But now I’m out. Got prescription for NP thyroid at 60mg so I’m super curious what will happen when I start that. I get blooodeork on Monday so I will be able to see what happened with my t3 and t4 being in only 30mg of the compounded. If my numbers are better than they were on 97.5 of WP thyroid, wouldn’t that be something!

Hi Crogers37. Where both antibodies tested, or just one? (TPO/ab and TG/ab). It's important to keep testing antibodies if you have the symptoms, even if you've been negative 3x. This can suddenly change. Were you ever at the top of the range? That is interesting that your inflammatory markers have been high, plus your symptoms. Which markers did they test?

For autoimmune markers, did you have your compliment proteins tested, particularly c3 and c4? Depending on your results, this can indicate an autoimmune disease or other diseases. It is not specific to any one disease, but is specific to a group of diseases or types of diseases.

That is great that your diet is free of all those foods. I follow a similar diet. :-)

All thyroid medications are compounded with various fillers that are specific to the individual formula. The source of the porcine could also come into play. The compounding pharmacy and mfg of WP and other NDT probably get their porcine thyroid from separate resources. You could always call the mfg's and compounding company and ask, then compare. Some people have reactions to whatever wheat, soy, gluten products or whatever the pig ate. It can be very difficult to pin point what you are reacting to. I take generic T3 and T4 from Walgreen's. I have had absolutely no problem with generic. I keep my levels at optimal (for me), so I have no hypo symptoms. I have Hashimoto's and very high antibodies. For T3, some people find it's best to take some am and pm if you're having afternoon crashes. My ND has recommended getting compounded slow release T3, but if it's not broke, I see no reason to try to fix it. I am very happy with my meds. If I need to I take a pm T3. I can get you the brands I take if you'd like.

Oh. So you can't take your meds just 3 days a week. That will mess up your levels like a yo-yo and to increase your symptoms. Your symptoms will also yo-yo. ;-) Thyroid medication is to be taken at the same time every day.

Well, unfortunately, that's not how the thyroid and thyroid lab results work. Reduce the amount of thyroid hormones you're taking, and you'll reduce your FT3 and FT4, and increase your TSH.

Also, you also cannot just suddenly run out of thyroid meds. Your thyroid and body needs the help with extra thyroid hormones every day. You have to plan for your prescriptions so that there is no lapse in medication. Depending upon how long you've been off meds, you might need to start back at the starter dosage, or possibly re-start at a reduced dose.

How are you taking your thyroid meds? Same or different time each day? With food and a beverage?

If your script is for 60 mg daily, but you're down to taking it only 3 days per week, or as you say you've been averaging only 30 mg per day (cutting pill in half?), this presents extra stress on your thyroid and your body with the inconsistent thyroid hormones. I don't want to be the bearer of bad news, but be prepared that your next lab results might be not so good. If I reduced my T4 by just 12.5 mcg, my levels would drop a lot and I'd have symptoms again. I hope that is not the case for you.

Hi! Sorry haven’t gotten back, get my results of blood work back today from last week.. Np thyroid was not good for me, immediate headache and body aches with 2 days if starting it, stopped and they went away. I do ok with the compounded but I can’t get it so if my numbers are really bad may have no choice but to try synthetic, could I have the brand names of your meds so if my numbers are bad I can ask my doctor? Do you know if they are gluten free? I know Cytomel is not and I’ve tried that before and did aweful.

Hi Drogers37. Your reaction to NDT sounds very unpleasant. How is your latest blood work? Your reaction to NDT still sounds like immune response. Did your doctor test both antibodies, TPOab and TGab? Even though your antibodies have been negative so far, it is still possible to have Hashimoto's with negative antibodies. The antibodies also change over time. Mine were negative at one point, kept increasing, but no doctor ever tested them until it was too late. Do you have your antibody test results and the ranges? If your numbers were in range but have been increasing towards the top of range, you could be over range by now or have antibody negative Hashimoto's.

I'd be happy to share the brand names with you. Yes, they are gluten free. I am completely gluten free myself. I have been taking these particular brands for more than four years and through several increases of T4 mcg's. I have never had any type of reaction to them, compared to when I tried NDT and had horrible immune reactions to that product. I'll get you the name brands and will get back to you in a bit.

Thank you! I will send you my results when I get home, weren’t horrible but not great either.. honestly only slightly lower t3 than when I was in meds..but I’m super tired so I think my body is feeling the decrease

danym
danym in reply to Crogers37

what are you taking now? did you find something that worked?

Crogers37
Crogers37 in reply to danym

I’m actually not taking anything now and the surprising thing is my numbers are identical to when I was taking the meds. T4 in normal range and T3 low. But because my body won’t convert T4 to T3 due to underlying chronic inflammation (cause still unknown but Typtase came back elevated twice now) I still feel awful. I tried synthetic T3 only (generic of cytomel) and couldn’t tolerate it even at very low dose, caused headaches. So then when WP came back in market I tried it again and still within 2 days I had terrible joint pain. So not sure if it’s the medicine or the fillers but I can not take NDT I don’t think. My doctor is getting ready to have me try a compounded T4/T3 combo (synthetic) free if fillers to see how I do on that. I will let you know!

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