Pain in large muscles

A naturpath is the kind of doctor who prescribes descicated pig thyroid replacement if your traditional dr. will not.  

Hi good morning Maria82873,

sorry to to hear about your poor health.  GP's are allowed to prescribe the natural stuff but. And i'll stop there about GP's cause heaven's above, if I mention anymore my post will get deleted by Big Brother.  Fingers crossed this post makes it all the way to the forum.

have you tried cutting out gluten?  I was about 4 years in with hashimoto's when I got very painful joints and muscles.  Interestingly, I became aware of the pain as soon as I stepped out of my hospital bed after having a c-section.  I put up with it for nearly 4 years, visited GP, got referred to physio and podiatry etc but was told nothing could be done, as pain was probably down to arthritis.  Was 38 at the time.  I gave up a good job.  Then I came across patient thyroid advocacy 2 years later, it's a forum for people who have various thyroid problems, the members are not medically qualified but nonetheless they are qualified in real life experience of managing their conditions.  They suggested I cut out gluten and within a week my pain had all but gone.  I'm not totally gluten free, but if I do have it, about 12-16 hours later I noticed the pain returning in some areas but I know it's only temporary.  I also tried supplementing with Synthetic t3 and my goodness my life has changed beyond recognition.  I am a very active parent and I'm looking for work.  The people at the Thyroid Patient Advocacy have helped me to transform my life.  I can't put the link in here but just google TPA and start living your life again. Kerry

Forgot to say, folk on the TPA forum will have plenty of suggestions re conversions

Maria,so sorry to hear of your predicament if that is what one can call it. Try not to let your GP's remarks get to you after all what do they know? Not much it seems as even the experts struggle they think Levothyroxine is the anser to everything but how can it be when so many patients complain they feel unwell, there is missing information they need to research. They get away with it because of protection of the powers that be the established doctors organisations  who have taken over the control of how thiese conditions are traeted, as long as your blood looks fit does not matter how you actually feel or what symtoms you have. Pointed out symtoms recently to a specialist the remark came back they could all be caused by something else, wish he could find out what these something 'eles's' are then he is supposed to be the endocrinologist. Why have they not been diagnosed by my doctors?  Waste of time asking if they have made up their minds even before you get through their door let alone before you speak to them. The lastest theory is that some people can not covert T4 to T3 but the established ones are not taking this onboard and researching it. Mentioned that to him as well.  I had asked for a trial of T3 but was shocked to find the orignal full thyroid bloods they took did not even included  include my T3 level. Waste of time just hitting your head against a brick or rather an iron wall. Only realise the majority of patients with problems with this medication are being trated in exactly the same way the message from this is that they don't want to know how ill you feel if you blood is 'fit' they are saying so you should be. Did not know they could put such remarks in your notes, wondering how you fiound out about  having non compliant patient put on your notes, that is bad feel my notes must be covered in this remark. What do they know they are GP's not specialists but then even some of them don'nt seem to know much or at least they do not want to listern to your argument as to why your thing Levothyrod is not helping you. Seen one just recently did not even bother to check out my T3 levels when I had asked to be given a trial of T3. I had thought these levels where checked out at the start but got record of tests from PALS and found they had not bothered. This being a top London Hospital so what hope is there for most patients in this country. Was told they only treat with Levothyroid said I thought I would be better off without it and he said you might be worse off, can't see how that can be, well my thyroid has shruck over the years that I have been on this medication found this out from the ultrasound I had taken at this hospital for cysts that had been found on a private scan I had done. Was told by hospital doctor who did this scan  that the medication had taken over from my thyroid did not get the chance to ask if this was because of Levothyroxine. Wondering if Levothyroid caused this. The help you need is out there on the internet as already suggested TPA is an excellent website created by the first lady to write about her thyroid problems and to campaign for better treatment search also for Thyroid UK a similar website who are campaigning, lots of help out there for you about dosage etc.   You will find you are not alone, good luck and hope you find the solution for your symtoms of course that goes for eyeryone.

Hello Maria-It depends on your dosage and what type of natural you're taking. Are you taking the prescription/pharmaceutical NDT(natural dessicated thyroid) or the OTC (over the counter, non-prescription) organic natural?

 I have taken both the levothyroxin and the natural dessicated prescription thyroid. I have not tried the completely natural, non-processed thyroid that is sold over the counter.  I have tried naturethroid and Armour, and am now on a compounded because the brand names have some additives that are allergenic. The dosing on all three of the NDT is the same and when I did research, I found postings by pharmaceutical companies to show comparative doses.The pharmaceutical companies did not recommend a 1-1 dose between the NDT and the levo. I found their recommendations to be incorrect. For the prescription NDT, the dosage is all the same, so you can switch between them without changing the dose. I found that when switching between the NDT and the levothyroxin, that staying on the same dose worked best for me, with a possible slight increase nfor the NDT. But the levo never worked right for me anyway. In the end, the same dose of levo and prescription NDT resulted in very similar blood levels. (keep in mind that the levo is T4 only and the NDT is a combo of T4 and T3, so you'll see lower levels of T3 and higher T4 with the levo, this is normal).

If you are using the completely natural thyroid that is sold over the counter, you are getting a product that has not been tested for consistency. However, the levo and the NDT are allowed a 10% variation from the labeled dose, so you can get as much as 20% difference in dose between batches  even with the pharmaceuticals- which is totally infuriating to me since I'm trying to balance a very delicate system. So my feeling is that the prescription stuff isn't very reliable anyway, so the variation in the OTC natural isn't a concern since you can't do better with the prescription anyway.

I did look into taking the OTC natural, but decided against it because I'm on a failry high dose, my insurance covers the prescription NDT and I seem to be improving on the prescription. I was concerned that with the high dose, I would have to take too much of the OTC natural or would have to take it at intervals throughout the day because it isn't as concentrated. If you are using the completely natural, it has not been refined and has all the thyroid factors. This is supposed to be better for you. Unfortunately the pig thryoid, though as close to human as we can get, is still very different because the ratios of T3-T4 are different than in humans,. Much higher T3 in pigs than humans. This actually works to the advantage for people who do not convert T4 to T3. I called one of the organic OTC thyroid companies and spoke to them extensively. It sounds like they recommend starting with a low dose and working your way up. My feeling is that if you're already in thryoid meds, you should at least start the natural OTC with the same dose you're on now since it's way less concentrated. The companies can't guaranty concentration so they don't publish it, though you may be able to ask them if there's a "normal range for pigs" or you could do an internet search for the levels found naturally in pigs. You can see why I've stayed with the pharmaceatical NDT. If I were to try the naturakl OTC I would probably start out trying a 1.5 dose since I know for sure it's less concentrated, but not how much.

So for me, I'm taking 150 of the prescription NDT, so I would try 225  of the OTC natural to start and see how I feel. If I feel really tired and depressed, then i would raise it. For me, it's way more traumatic and debilitating to be taking a too low dose, so I find that rather than the doctor's who are terrified of it being too high, I try to take a conservative approach, without risking too low of a dose.

Hope that helps. Good luck!

Catherine

 

Hi Maria-  You're on 100of the Levo? Do you want to try the over the counter or thre prescription (pharmaceutical) natural dessicated thyropid?

I have not tried the over the counter dessicated thyroid. but I have tried the prescription NDT. I have used Armour, Naturthroid and am now on a compounded. I switched from the naturethroid and the Armour to the compounded because the brand names have additives that are allergenic.

First, all (the brands and the compounded) pharmaceutical/prescription NDT all have the same concentration, so you can switch between and keep the same dose. My blood results for 150 of the compounded NDT were pretty close tot he 150 levothyroxin results. One major difference between the natural and the synthetic levothyroxin is that the NDT has a combo of T4 and T3, where the levo only has T4. So the blood results show higher T4 and lower T3 with the levo. So for me, it worked best to switch one to one.

The pig gland with the high T3 turns out to be a blessing, particularly for  those who do not convert T4 to T3 very well.

For the OTC, you get an unprocessed pig gland, so it contains all of the T factors, which is supposed to be better. Also, you can get organic, which I'm sure is better. I did a lot of research into the natural and there could be concerns about the regularity of the dosage but when compared to the fact that the pharmaceuticals allow a 10% variation from the labeled dose, (so you could have as much as 20% difference in dose between prescriptions), I felt this wasn't a concern. I don't know the T4 and T3 concentrations found naturally in pig thyroid. I did not try the natural because I didn't want to switch again and I'm on a very high dose and was concerned that I would have to take a very large amount of the natural to get the same amount of T4 and T3 in the pharma stuff. If I were to try the OTC natural, which I hope to be able to do at some point, I would start with a 1.5 dose. If I felt depressed or tired immediately, I would raise it. I feel like it's super unhealthy to let the dosage get low, so I try to err conservatively on the side of excess rather than too little.

Hope that helps!

Catherine

One more thing, Maria. I noticed the part of your post where you talked about the doctors lowering your dose just as you're starting to feel OK. I have been through this as well. It was a constant roller coaster. Finally I got to a really competant doctor who looked at the rest of my body and not just the blood tests.  I find I do best when my nubers are around or just above the top of normal range.

When you're first starting to take the meds, the docs seem to like to check to see if you're on track. The problem with this is that the meds will initially spike your bloodwork. So if you're a little high, that's normal. Also, for the meds to work, my TSH is always zeroed out. But my TSH wasn't super high to begin with, so it's a bad indicator for me. Unfortunately, a lot of doctors still use the TSH as the primary indicator even with meds. It takes a full three months for the blood to level out, so if you test prior to that, you are really only using it as a guide and you risk the roller coaster prescription method if you chenge the dose before the three months. On the other hand, if you still feel really horrible, and you know the dose is too low, you're better off increasing it sooner, to try and avoid the decreasing quality of life factor that we all deal with as we watch our lives go down the drain, build them up and then watch spiral down again, all while trying to get the meds right.

The other issue is that there are just as many risks associated with low thyroid as high, so neither is good. It isn't a perfect system There's a lot about thyroid disease that isn't understood. Do what you need to do to feel better and get or keep your life an track.

Best of luck!

Catherine

I have had many days that I feel that my body is made of cement on synthroid only.   I now take a combination of T3 & T4, it has made a world of difference.   That is also an alternate option.   My GP did attempt to prescribe natural desicated a few years ago but she did not know how to dose it properly. She tried to dose equal amounts of synthtroid & dessicated...didnt work!  I was severely hypo.

Natural dessivcated is measured in grains . One grain is 60 - 65 mg (depending on brand) and contains .038 mg (or 38 mcg) of T4 and 9 mcg of T3, plus unmeasured amounts of T2, T1 and calcitonin.   You are now taking as I understand 100 mcg of T4 only.  You may need 1.5 - 2 grains.  Always go by how your body feels.  Good luck! 

Hi Maria, so sorry for your problems with Levothyroxine.  I went through seven months of such horrible symptoms, I thought I was dying.  I've done a great deal of research on possible interactions with Levotheroxine and other drugs, medicines or foods, and here are a list that causes negative reactions:

Caffeine in coffee, tea, sodas, and chocolate; soy products, fiber such as used for constipation (it causes constipation if using Levothyroxine), gluten found in wheat products such as breads and cereals; anacids and calcium should be taken at least 4 hours after taking Levothyroxine.  Also, if you are taking Alpha Lipoic Acid (an antioxidant), stop immedately. It nearly killed me before I discovered it was the reason for all  my problems.  

By the way, I had the brain fog, too, as long as my thyroid gland was out of whack by my taking Alpha Lipoic Acid. Coffee was nearly as bad.  I tried increasing my dosage of Levo, it didn't help. I tried reducing it. It didn't help.  Not until I left off the aforemetioned foods, beverages, and Alpha did my thyroid start leveling off and I went back to my normal dosage of 50mcg.

Monitor your diet and if you have symptoms an hour or two after taking your med, try to trace the problem back to a specific food or drink--or perhaps another med you are taking.