Hypo symptoms on Levo with normal labs
Posted , 8 users are following.
I had goiters that were so large j didn't have a choice but to have my thyroid completely removed. I wasn't hypo or hyper and when they biopsied it they didn't find cancer. My TT was on 1/4/16. I've been on 150 mcg of Levo since the surgery. For the first 7-10 after I felt great. But then not so great ever since. Sweating on and off, occasional joint pain, muscle aches, a few times burning muscles, tired no matter how much sleep I get, light headedness, etc. I get bouts of energy but they're short lived and I always pay the price at the end. I had to leave a family function because I could no longer stand. My knees started to buckle. If I don't get 10 hours of sleep I almost can't function that day. I can't make it through the grocery store so I can only do small shopping trips. I haven't been able to go back to work.
I can't find a doctor willing to look into this. One told me to get a sleep apnea test, then he ordered a TSH, free T3, and free T4 test by they were all in the normal range so he said he wouldn't do anything. Then I started gaining weight to the tune of 1 lb a day so he said he'd decrease the dose to 100 mcg which I said no to. Fortunately the weight gain stopped. I went to another doctor who told me TSH I as the only number that counted and it was normal so she said I was fine and just to give it more time. She couldn't believe I wasn't back at work.
I went back to the first doctor to see if he would order addition al tests specifically a Reverse T3 and they don't know what a Reverse T3 test is. My primary care doctor referred me to get another doctor but again he only cares about the TSH. I don't know what to do. Is it the Levo? Should I try something else? How do I find a doctor willing to test further, possibly prescribe Cyromel to see if that alleviates the symptoms. I suspect I'm not converting T3 correctly. I have a history of liver damage although after being on meds my last liver function test showed it was fine. Can anyone help me?!?
3 likes, 90 replies
LAHs Jen111979
Posted
Jen111979 LAHs
Posted
T4, free 1.64 range 0.82-1.77
Tsh 1.220 range 0.450-4.500
T3, free 3.3 range 2.0-4.4
They're normal but I still can't function.
barbara98940 Jen111979
Posted
Jen111979 barbara98940
Posted
barbara98940 Jen111979
Posted
You can get a hypoallergenic Natural Desiccated Thyroid without a prescription. I'm on a bovine NDT called ThyroGold I buy over the internet. However my reservation about switching meds is that it is early days yet, only 6 weeks, and your body still needs to adjust.
Jen111979 barbara98940
Posted
barbara98940 Jen111979
Posted
Read everything on the site before embarking on this. Particularly the questions and answers and the 3 free chapters of his book that explains it all. Good luck! I hope you soon feel better.
LAHs barbara98940
Posted
I'm copying this thread of posts and sticking it on my fridge, you really have the details, thanks.
barbara98940 LAHs
Posted
If I mention his name this post will be (understandably) moderated for advertising, so I'll give hints on how to find it. Let me know if you need me to pm you the link.
Search for ThyroGold, you'll know if you've got the right site because it'll have a picture of the husband and wife team that produce it. Their names are Tammy and John. On the left hand side is a menu and one of the items is called 'questions and answers'. Click on that and at the top of the page are links to 3 free chapters of his book.
barbara98940 LAHs
Posted
LAHs
Posted
barbara98940 LAHs
Posted
barbara98940 LAHs
Posted
LAHs barbara98940
Posted
Jen111979 barbara98940
Posted
Jen111979
Posted
MtViewCatherine Jen111979
Posted
Were you you on a prescription previously? What was the correct dose? That should give you an idea of dosing. However, with the nonpharma, it's going to be a lot bulkier, so err on the side of higher rather than low.
Next, my recollection is that Thyrogold is porcine. Pigs have a much higher T3 than humans. So if you have brain fog (this is likely low T4), and anxiety, (could be low or high T3, but likely high bc of the porcine, unless your dose is WAY too low). With the porcine, I always had either highT3, with good T4, or good T3 and low T4. So this med works best for people who do not convert T4 to T3: people with gut or liver problems.
The symptoms you're talking about sound very similar to my experience when my meds were too low: cholesterol and lipids through the roof, sluggish liver, food sensitivities, severe anxirty, exhaustion. It's often difficult to distinguish low from high symptoms, particularly bc the anxiety is way worse when doses are too low.
If you have been advised medically that you need thyroid medication, a 150 dose is similar to a 25 mcg dose of NDT or levo. So the 150 is a very small amount. Is it possible you could be mistaking low symptoms for high?
Finally, if the problems you're having are due to a difference in the T3 to T4 ratios between pigs and humans, you could try a bovine one. Bovine T3 to T4 ratios are closer to humans.
Hope that helps. There are others on this site who use Thyrogold. Tips anyone? I seem to be doing well on bovine.Â
Good luck!
Â
Jen111979 MtViewCatherine
Posted
We know that a 150mg capsule of Thyro-Gold contains 50mcg of T4 and 12.5mcg of T3. Given that T3 is roughly four times more powerful than T4, the calculation is 50mcg of T4 + (12.5mg of T3 x 4) = 100mcg of T4."
I was on 150 mg of Levo when this all started and that was way too much. My levels were so high my doctor advised me to stop taking meds for several days to get the levels down as fast as possible. At that time I was clinically hyper but experiencing both hypo and hyper symptoms. When I asked the doctor how that is all he could think of was my abnormally high cortisol levels. I also started having issues with severe allergies and asthma which I previously had under control. All likely due to the uptick in cortisol.
He switched me to 100 mg of synthroid and that wasn't really doing much for me either so I switched to Thyro Gold. The creator of Thyro Gold said on their website to start out on 150-300 mg and then every two weeks or so add another 150-300 mg. And keep doing that every 2 weeks. And daily track your basal body temp and basal heart rate to find your right dosage.
I started out on 150 mg for about 4 days and then bumped it up to 300 mg and stayed on that for about 2 weeks. Then I bumped it up to 450 mg and was on that for about 2 weeks. Then bumped it to 600 mg and after only a few days I could tell that was way too much. So I went back down to 450 mg for a few days and then down to 300mg and had been in that for about 10 days when I had blood work done for my doctors appt. My blood work indicated I'm still hyper. So he told me to decrease the dose yet again. So now I'm in 150 mg and have been for about a week. According to the blog that's the equivalent to the dose of Synthroid when I switched. That's why it blows my mind that people can be on such high doses of Thyro gold.
Jen111979 MtViewCatherine
Posted
MtViewCatherine Jen111979
Posted
Switching to a bovine should help with the hyper/hypo. But it takes a while to detox from the Levo, I'm talking months.
The other thing I ran across, is some info about the irregular growth cells, and that they often have higher numbers of insulin receptors on the cell surface. I found this particularly interesting in my case, bc I have a large cyst, and am hyper/hypo, but my TSH has never been elevated proportionally. Since the TSH stimulates thyroxin production, and mine was constantly hyper/hypo, something else had to be stimulating the thyroxin production. The hypo is exhausting, and the hyper is the neck heating up like crazy and swelling up all around the cyst.
Now that I'm on the bovine, which I've found to be about 130 bovine to 25 prescription, it's calmed down a lot. I've also been taking thyroid supplements containing herbs, boron and kelp. These supplements seem to help keep the inflammation on the thyroid down. The inflammation seems to exacerbate the hyper/hypo. In addition, acupuncture has been helpful.
basically, at least for me, the cyst and inflammation are the wild cards in the equation.
barbara98940 Jen111979
Posted
I can confirm ThyroGold is bovine NDT.
Does this help? If there's anything else you think I can help with, do ask.
MtViewCatherine barbara98940
Posted
keep in mind that when you change doses, it can actually spike your blood work temporarily, so use the blood work as a guide with symptoms.
Since none of these meds are perfect, with imperfect delivery to already broken systems, you may need levels on the high side or even slightly above ranges to feel your best.Â
Jen111979 barbara98940
Posted
This is the equation I found online from Paul's Blog: "100mcg of T4, Synthyroid or levothyroxine = 150mg of Thyro-Gold Show calculation
We know that a 150mg capsule of Thyro-Gold contains 50mcg of T4 and 12.5mcg of T3. Given that T3 is roughly four times more powerful than T4, the calculation is 50mcg of T4 + (12.5mg of T3 x 4) = 100mcg of T4.".
And that seems to be the case for me. My blood work on 300 mg was very clearly hyper. I will stay at 150 mg and see what my blood work looks like in 5 weeks. I have read several people are on 150 mg and do quite well. Everyone is different I guess. The wife of the creator has said multiple times that 150 mg contains T4 that is equivalent to 50 mg of Levo. Plus the T3, T2, T1 and calcitonin. And since T3 is super potent you don't need as much T4. So we shall see.
barbara98940 Jen111979
Posted
Jen111979 barbara98940
Posted
barbara98940 Jen111979
Posted
Jen111979 barbara98940
Posted
barbara98940 Jen111979
Posted
barbara98940
Posted
barbara98940
Posted
Jen111979 barbara98940
Posted
barbara98940 Jen111979
Posted
MtViewCatherine Jen111979
Posted
The reason I'm very insistent, is that my blood work always looks normal, yet, Simptomatically, I'm clearly hypothyroid, plus, I have a very large cyst, which by definition is hypothyroidism. Â The only thing that ever came up much out of range was my rT3. High rT3 can often be present with adrenal disease, but my feeling is the adrenals become exhausted because they try to make up for the low thyroid.
It might be worthwhile to check your rT3, because if it's high, it binds up too much T3, and your T3 will show normal in blood tests, but is inactive. There's a ratio range - you can look it up online- of T3: rT3 that is acceptable. The anxiety you're feeling could be either low or high T3. I had anxiety way worse when my T3 was low than when it was high.
In the end, if you aren't feeling well when the numbers look right, you have to either, increase the dose, or look elsewhere for the source of the symptoms. Body temp is considered a very strong thyroid indicator, whereas other symptoms- sluggishness, hunger, dry skin and others- can be caused by diabetes and othe disease.
Strangely, infection has very similar symptoms to low thyroid. Particularly the inability to regulate body temperature, the sluggishness, and even low body temp.
Jen111979 barbara98940
Posted
Jen111979 MtViewCatherine
Posted
barbara98940 Jen111979
Posted
Jen111979 barbara98940
Posted
barbara98940
Posted
The following extract grom the levothyroxine patient information leaflet is why I'm concerned.
2 Before you take Levothyroxine
Do not take this medicine if you:are allergic to levothyroxine or to any of the other ingredients (see section 6).
suffer from an overactive thyroid gland that produces too much thyroid hormone (thyrotoxicosis)
have any condition that affects your adrenal glands (your doctor will be able to advise you if you are not sure)
If any of these apply to you, do not take this medicine and go back to your doctor to discuss your treatment.
I suggest you point this bit out to him.
Jen111979 barbara98940
Posted
MtViewCatherine Jen111979
Posted
Thyroid is low but goes decades without being diagnosed (I recently found out that in addition to my mother having a severe thyroid issue, virtually every female on my dad's side of the family is dealing with thyroid disease. I suspect I had thyroid disease from about the age of 15. Took me until I was in my early 30s when the cyst developed. Was diagnosed in my mid 40s with Hashimotos, and took another 2.5 years to get meds, when I finally found a good Endo who checked the rT3 and knows that a cyst results from hypothyroidism, period.
When the thyroid is low, the pancrease and adrenals work extra to try and make up foot it, but they eventually get exhausted. Meanwhile, the thyroid starts growing irregular cells to try and produce more thyroxin. These irregular cells have more insulin receptors on the surface, so they are triggered to produce thyroxin not by TSH, but every time you eat, by insulin. The body tries to function this way for a while, but it doesn't really work properly, so the other endocrine organs become exhausted and the cyst keeps growing to try and maintain proper thyroxin levels.
By by the time you become symptomatic, your Endo organs are all exhausted and the cyst is making massive amounts of thyroxin, while the healthy thyroid cells are actually suppressed... So all your blood work looks normal bc your system has completely bypassed the thyroid/ pituitary feedback loop.
by the time you get medical treatment for the thyroid, you can't keep up with the all out endocrine system failure that is already in play.
barbara98940 Jen111979
Posted
Jen111979 MtViewCatherine
Posted
MtViewCatherine Jen111979
Posted
Rosiebranston barbara98940
Posted
MtViewCatherine Rosiebranston
Posted
Rosiebranston MtViewCatherine
Posted
barbara98940 Rosiebranston
Posted
Here's my story in the hope it will be of use to you.
In May 2015 when I became intolerant to the fillers in all the synthetic thyroxine meds, I needed an alternative, and quickly. (I even swelled up with liquid thyroxine).
I opted for ThyroGold because I could get it quickly without a prescription.
It was really scary buying it off the internet: would it have in it what it said it did? Would it harm me? Would it work?. Was it a scam?
I've been on ThyroGold since 23rd June 2015 and had monthly blood tests, monitored by my NHS GP. To give you an idea of dosing: I weigh 53kg, I started on 150mg for 4 days then increased it to 300mg (150mg twice a day - upon waking and then 7 hours later) for 2 weeks. Then 450mg (300mg upon waking and then 150mg 7 hours later) for 2 weeks. Then 600mg (300mg upon waking and then 300mg, 7 hours later) for 2 weeks, then 750mg (450mg upon waking and then 300mg 7 hours later).
At 750mg my symptoms subsided - no longer cold, skin and hair not dry, muscle fatigue gone and muscle stamina now good, brain fog diminished (not completely gone but probably due to poor sleeping habits i.e. reading this forum until the early hours - something I'm trying to stop doing!)
I've was on 750mg for 5 months. Then I tried increasing to 900mg blood tests (for T3, T4 and TSH) showed this was too much, so I dropped it to back to 750mg. After a couple of months at 750mg I lowered it to 600mg and the same blood tests showed this is too little. So I've now (as at 28/4/2016) settled on 750mg.
I read everything on the site I bought it from before embarking on this course of action - particularly the questions and answers and the 3 free chapters of Dr lowe's book that explains it all, including how to spot if you are over medicating.
ThyroGold definitely has in it what it says it has, because recently I ended up having 2 thyroid blood tests 5 days apart (the lab didn't do the TSH test because it was only 26 days since the last test was done and the 'test is valid for 27 days'. So my GP requested another blood test. Because from this test we only wanted the TSH I didn't think it would matter that I had already taken 450mg ThyroGold that morning. Well they actually did T4 & T3 as well on the 2nd test and it showed both T4 & T3 higher than on the previous test (which is what one would expect).
My blood test results in February after being on ThyroGold for 5 months were as follows.
3 Feb 2016:
T3=3.7 (2.6-5.7)
T4=14.0 (9-19)
TSH='repeat request - following result is from 8.1.16 and is valid for 27 days'=1.5 (0.4-4.9)
Results from 8 Feb 2016:
T3=6.3 (2.6-5.7)
T4=16.4 (9-19)
TSH=0.02 (0.4-4.9) - remember I took ThyroGold on the morning of this test, so this is what one would expect - I'm getting enough thyroid hormone so the pituitary gland isn't asking for any more thyroid hormones (it does this by producing TSH), hence the TSH reading is low
Note: to take a dose which is not a multiple of 150mg (which is the snallest size ThyroGold comes in) entails pulling a capsule apart and only taking half of it. ThyroGold isn't like thyroxine, because it contains T3, one can't just take 600mg one day and 450mg the next if one needs a dose of 525mg.
I have a theory that the people who have no functioning thyroid do better on NDT because it replaces the T3 their thyroid is no longer making.
Note of caution: if you do decide to switch to NDT it is essential for you start on a low dose and build up slowly. Your body needs to get used to getting T3. (See tpauk for dosing instructions).
I am not medically qualifiedv and therfore I'm not qualified to advise you, I am merely saying what I did and what the results were, so you can use it as one source of information to make your own decision. ThyroGold is classed as a 'nutritional supplement' so that people like me can buy it without a prescription, but don't be misled, like thyroxine, ThyroGold is a very powerful drug which is used instead of thyroxine.
MtViewCatherine Rosiebranston
Posted
MtViewCatherine barbara98940
Posted
barbara98940 MtViewCatherine
Posted
Jen111979 Rosiebranston
Posted
Most people end up taking anywhere from 600 mg-1,200 mg but I was seriously hyperthyroid at those levels (blood work and symptoms to prove it) despite my basal heart rate and temp being normal. There's a symptom list on the site too that the creator's wife sent to me to track the severity of your symptoms and if they increase or decrease based on dosage. Blood work, that list, knowing your body to pick up on symptoms, taking basal body temp, and basal heart rate each morning and tracking them are all things I recommend you do when starting this product to determine the proper dosage.
As I lowered my dose the symptoms have subsided so I'm learning that for me a smaller dose is better. And I do not have a thyroid anymore so I'm heavily dependent on these meds. I may one day try to increase up to 300 mg but it depends on what my next set of blood work shows and if I start to have hypo symptoms. Right now I'm good at 150 mg. but everyone is different.
I have read online Paul Jones Blog found that a 150 mg capsule contains 50 mg of T4 and 12.5 mg of T3 along with T2, T1, and Calcitonin per his discussion with the creator's wife. So one 150 mg of Thyro Gold is the equivalent to 100 mg of Levo or Synthroid. T3 is roughly 4x's the power of T4, so 50 mg of T4 + (12.5 mg x 4 = 50 mg of T3) = 100 mg. which makes sense for me because I was on 100 mg of Synthroid when I switched, but wasn't doing very well without the T3. The switch has been good for me.
The creator is a doctor who specialized in thyroid issues and created this for his wife who has thyroid problems. He died a few years back in a freak accident but his wife still sells it. She responds quickly to any questions you have. It's worth a shot if the synthetic meds aren't working.
barbara98940 Jen111979
Posted
Jen111979 barbara98940
Posted
barbara98940 Jen111979
Posted
Jen111979 barbara98940
Posted
I fully agree that the calculation would mean that you're unwell unless you're on the equivalent of 500 mg of Levo and that that seems highly implausible. But the calculation makes sense to me on how I was hyper at 300+ mg. I reached out to the creator's wife, Tammy, and all she would tell me is that everyone is different. I can't explain it.
And again all I am doing is sharing my experience. I already listed for her all the tools she needed to figure out her own dosage and you've mentioned it twice now how important it is. I also gave her both sides of the spectrum; mentioning most are on higher dosages but that there are those of us who require a lower dose. I said and did absolutely nothing wrong in sharing my personal experience and information I've found on my own post. Because it doesn't fit with your experience doesn't mean I can't share it in peace.
MtViewCatherine Jen111979
Posted
I'm on a different brand, but, 9x130mg= 1170mg per day seems to feel about right to replace the 200mcg levothyroxin.Â
A friend of mine on a different brand of the OTC bovine takes 3x130mg per day to replace her previous dose of 60-75mcg of NDT (prescription porcine).
Jen111979 MtViewCatherine
Posted
I no longer need help from this forum, please stop responding to it and me.
barbara98940 Jen111979
Posted
barbara98940 Jen111979
Posted
Rosiebranston barbara98940
Posted
barbara98940 Rosiebranston
Posted
Rosiebranston barbara98940
Posted
barbara98940 Rosiebranston
Posted
I love being on ThyroGold; I only wish I'd known about it years ago.
Rosiebranston barbara98940
Posted