Thyroid and NAflD: Hello, well I gave up arguing... - Thyroid UK

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Thyroid and NAflD

rjerome812 profile image
155 Replies

Hello, well I gave up arguing with doctors about my thyroid. My TSH numbers have been all over 2.38, 3.88 , 2.67, 3.25 and now 4.18. Of course this is all in normal range. But my cholesterol is high, vitamin D 24 and sugar reading higher then normal and just recently I was diagnosed with fatty liver. The funny thing is I even went vegan for 6 months and my health got worse unfortunately. The doctors keep telling me to exercise and eat right. I do mostly. Is all these issues im having any relation to hypothyroidism. This does run in my family, my mom,grandma and uncles. But doctors keep looking for something else.

Update: 4/4/18

I went to new doctor and basically he tried to give me an anti-depressant and told me i was fine. That was upsetting. He said my levels weren't that bad and He would just watch them every 6 months. Very discouraging.

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155 Replies
waveylines profile image
waveylines

You have all my sympathy.....your right they should be taking account of your family history!! And your TSH maybe in range but overall is going steadily up! It would be helpful if they did your thyroid hormone levels too for a more complete picture but sadly that seems to be increasingly more difficult to get on the nhs....lol.

Yo havent put the ranges on ....always useful as labs vary area to area.

If your vit D level is only 24 & based on my lab ranges in my area this is woefully low. Your GP should be giving you a loading course of treatment. Low vitamin D can make you feel terrible, tired and achey.

ShootingStars profile image
ShootingStars in reply to waveylines

Yes, D at 24 is very low. That will also slow the body down and make you feel ill.

Marz profile image
Marz in reply to ShootingStars

Poster is in the US so the VitD result is equal to 60 nmol/L - still LOW !

ShootingStars profile image
ShootingStars in reply to Marz

Yes. Depending on which lab she uses here, that might be below the bottom of the lab range. A long time ago I was below range at 23. Just depends on the lab.

Blossom79 profile image
Blossom79 in reply to waveylines

My hair was falling out in clumps with levels as low as 27 (Vitamin D) I'm taking 4000 mpul to get some back into my stores- everyone in the UK will be deficient in winter as we just don't get enough sun- please ask your GP about supplements- its the LEAST they should be doing!!

(other symptoms include, fatigue, muscle aches bone aches dry skin etc so could be put down to thyroid)

I also have Hypothyroid- its the reason I'm taking such large doses of VitD3 because I don't absorb anything very well through my stomach/intestines.

Id get a vitamin D3 spray that gets absorbed through your gums and mouth if you have the same problem I do xxx

Marz profile image
Marz in reply to waveylines

The poster is in the US so measurement in ng/L - so still LOW :-)

waveylines profile image
waveylines in reply to Marz

Thanx Martz 😊

Marz profile image
Marz in reply to waveylines

😴😴

ShootingStars profile image
ShootingStars

Hi. Your TSH is too high. It should be under 2.0. When it gets up to where your's is, this means it's slowing down. TSH is not a thyroid hormone, but comes from the pituitary gland and communicates with your thyroid. Your thyroid hormones are called T3 and T4 and are measured by tests called Free T3 and Free T4. These are the tests that you need to fully determine how your thyroid is functioning.

Your thyroid regulates your metabolism. This includes digestion and ability to digest fats. Before I was diagnosed, I had several "liver attacks" surround my consumption of too much coconut fat. My liver hurt and my side was swollen. I felt very sick. After I got started on thyroid meds, I never again had that problem. Granted, I cut out consumption of large amounts of coconut oil, but I still consume a decent amount of avocado oil, avocado, and olive oil, and I don't have that problem.

Are you eating a lot of coconut oil or other fats?

rjerome812 profile image
rjerome812 in reply to ShootingStars

No, I was trying to eat more fruits and veggies, i was vegan for about 6-7 months. But then my sugar spiked and liver hurt. Thats why they did the ultrasound and said i had fatty liver. Now im eating eggs and fish, still staying away from dairy and red meat.

ShootingStars profile image
ShootingStars in reply to rjerome812

Hi! I’m in the US, too. What is are the lab ranges for all your labs? Depending on the range your lab uses, your D might be below bottom range at 24. If this is the case, or it’s near bottom range, you might be severely D deficient.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

Fats tend to cause gall bladder problems, not fatty liver, if you can't digest them well. You can get lipase capsules.

ShootingStars profile image
ShootingStars in reply to Angel_of_the_North

Yes, or liver problems. In the liver, if fat cannot be metabolized fast enough (slow metabolism, like from Hashimoto’s), the excess fat is stored in liver cells. If there is prolonged excess fat in the diet, the fat will accumulate and cause fatty liver disease. Consuming a high fat diet does not always create a fatty liver, but it can be a contributory factor. Alcoholism is a leading fatty liver cause, as well as diabetes (high glucose levels), obesity, high fat levels concentrated in the blood, and other causes.

In my case, all gall bladder diagnostics showed a healthy gall bladder. I had several gall bladder ultrasounds, and a hepatobiliary iminodiacetic acid (HIDA) scan. All of these were normal. My liver was temporarily swollen, sore, and abdomen distended. Once my metabolism was increased by treating my hypothyroidism with medication, I never had that problem again.

I did, however, removed excess coconut oil because it is difficult to digest (82% saturated fat, no wonder). I never fell for that fad that it was a healthy fat anyway because excess saturated fat is unhealthy and always has been.

True fatty liver disease is very treatable, if it hasn't gone on too long. Remove the cause that is damaging the liver (alcohol, too much fat in diet, too much sugar in diet driving up glucose and creating a diabetic atmosphere, treat the hypothyroidism to increase metabolism and ability to process fats) and the fatty liver improves.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

I don't think saturated fat was unhealthy before Ancel Keys decided it should be.

ShootingStars profile image
ShootingStars in reply to Angel_of_the_North

Excessive saturated fat has always been unhealthy, even before @Ancel shared this information. "The American Heart Association recommends limiting saturated fats – which are found in butter, cheese, red meat and other animal-based foods. Decades of sound science has proven >>>>>>>it can raise your “bad” cholesterol<<<<<>>>>>>>and put you at higher risk for heart disease<<<<<<<<<<<."

Everything in moderation. It is easy to consume excessive amounts of saturated fat. The "coconut oil is healthy" craze has always been insane. Coconut oil contains 82% saturated fat, as compared to

"What's my daily limit for foods with saturated fats?

AHA Recommendation

The American Heart Association recommends aiming for a dietary pattern that achieves 5% to 6% of calories from saturated fat.

For example, if you need about 2,000 calories a day, no more than 120 of them should come from saturated fat.

That’s about 13 grams of saturated fat per day."

healthyforgood.heart.org/Ea...

heart.org/HEARTORG/HealthyL...

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

Saturated fat used to be pretty much the only sort of fat people ate - you cooked with lard or butter and ate meat and eggs. If you were very posh you might eat olive oil on salad (but probably just salad cream). Yet instances of heart disease (and diabetes) were much lower. Also, saturated fat is made up mostly of short and medium chain fatty acids which put less strain on the liver than long chain PUFAs and certainly MCTS (like coconut oil) have been shown to stop progression of Nafld sciencedaily.com/releases/2... "Dr. Martin Ronis and colleagues using an animal model of NAFLD have shown that substitution of saturated fat in the form of medium chain triglycerides (MCT) for polyunsaturated fats can prevent the progression of NAFLD-associated liver injury." It's the polyunsaturated veg oils that are harmful and inflammatory (and we were healthier when we rarely ate them). And what did the president of the American Heart Association just have at a relatively young age ... ?

ShootingStars profile image
ShootingStars in reply to Angel_of_the_North

Times and diets have greatly changed since used to be times. Back then, people were more active, too. Children played outside, people worked on farms including children. People didn't sit around watching TV, playing video games, or playing on the internet. ;-) They were active. This change in lifestyle is evident in the all the countries with obesity epidemics. Diets have changed. Processed convenience foods are ingested by mass populations.

Here are 10 examples of common foods containing high levels of saturated fats. They are all pretty obvious no-brainers, to be eaten in moderation. Within each category in receding order: #1) Hydrogenated palm oil, soy and coconut oil, #2) Coconut desiccated, #3) Butter, #4) Animal Fats (suet, lard, duck fat, goose fat, tallow, shortening), #5) Chocolate (baking chocolate), #6) Fish oil (sardine, followed by Menhaden, Cod, Herring, Salmon, #7) Cheese (Hard Goat, Cheddar, Soft Goat, Colby, Cheshire, Cream Cheese, etc.), #8) Cream (Heavy, Whipping....all kinds of cream) #9) Nuts (Brazil, Pilinuts, Macadamian, Cashew, Mixed Nuts, Pine, Pumpkin, Sunflower, etc.), and #10) Processed Meat (Pepperoni, Bacon, Pork Sausage, Blood Sausage, etc.).

myfooddata.com/articles/foo...

Then there is the inflammation factor involved in saturated fat: "Several studies have shown that saturated fats trigger adipose (fat tissue) inflammation, which is not only an indicator for heart disease but it also worsens arthritis inflammation. Pizza and cheese are the biggest sources of saturated fats in the average American diet, according to the National Cancer Institute. Other culprits include meat products (especially red meat), full-fat dairy products, pasta dishes and grain-based desserts."

arthritis.org/living-with-a...

What's exactly your point about Dr. John Warner, president of The American Heart Association having a heart attack?? Are you mocking him? Dr. Warner had a minor heart attack due to a clogged artery. He has a genetic pre-disposition to heart disease. It runs rapid in his family. Both his father and his father's father had bypass surgery when they were in their 60's. It is also on the maternal side of his bloodlines. He lost his maternal grandfather and maternal great-grandfather to heart disease. Hopefully this all makes sense and illustrates a great example of genetics at their finest (worst).

Let us not forget that heart disease, as well as other health issues can have a genetic component and are not always caused by food, fat in the diet, drink, stress, bacteria, fungi, parasites, environmental toxins, metals, etc.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

If the American heart Association recommendations can't even keep their own president's heart healthy, then they aren't very trustworthy. Doesn't matter what genes you are born with, it's how you express them - which is down to lifestyle mostly.

Less activity = less need for carbs and quick burn fuel. We are never going to agree and pretty well all studies are biased one way or the other, so one can cite several studies to prove any point.

dogtired profile image
dogtired

On the bright side be thankful they are still looking & not handing you a scrip for anti ds! My lot have have said "We wouldn't treat you until your TSH was over 10 (note the We!) I was told my liver was fatty....not since I followed advice of the liver doctor, dr sandra cabot & I don't take statins, omeprazole or anything else only her livatone plus formula.......I read her book and have not looked back. Hope things look better for you in the future.

TSH110 profile image
TSH110

Given your family history and high TSH your doctors should be more proactive in treating your condition. You should request thyroid antibody tests most hypo is autoimmune and positive antibody tests proves you have the disorder so they cannot claim it is other things. They rarely test for free T4 and the most important one free T3 but go on TSH alone, and totally ignore symptoms blaming them on anything else they can. If you can afford it get private blood tests and ask admin for a list of recommended doctors that may be more helpful. Otherwise I’d agree with reallyfedup123 to look into self medicating with NDT rather than suffer unnecessarily due to the very poor standard of thyroid care on the NHS.

rjerome812 profile image
rjerome812 in reply to TSH110

Funny thing they tested antibodies 2 years ago and Iwas positive, but since TSHand T3 and T4 were normal they said i was fine.

Marz profile image
Marz in reply to rjerome812

Absolutely not - you need treatment to support the thyroid whilst it is under attack from the anti-bodies. Read through your post/thread and make a shopping list of tests needed :-)

rjerome812 profile image
rjerome812 in reply to Marz

Thank you

ShootingStars profile image
ShootingStars in reply to rjerome812

Hi. You don’t have to order your own labs, just tell me our PCP that you need to test your TSH, FT3, FT4, and thyroid antibodies TPOab and TGab. This is covered by your healthcare insurance. Your antibodies were previously high, so this means you have Hashimoto’s and you need supplemental thyroid medication.

You have Hashi’s so NDT might not be right for you, or you might ok. The more common option is synthetic T4 and T3 (if you need it). Some people with Hashi’s have an autoimmune response to NDT. Possibly because pig thyroid is a foreign substance or possibly due to reacting to something the pig ate. I have Hashi’s and I had autoimmune reaction against NDT. I take synthetic T3 and T4.

That’s how Hashi’s works. Your body deside to react violently against antigens such as bacteria, fungus, trauma, stress, as well as certain things in your diet. Normal people don’t have such strong reactions. This makes thyroid antibodies increase. The AIP diet is recommended for the same reasons, to keep reactions down. It’s gluten free, soy and dairy free. All of those inflammatory foods can increase your antibodies.

rjerome812 profile image
rjerome812 in reply to ShootingStars

I cut out dairy mostly , except for veggie pizza twice a month. Thats kind of a family get together night. But I can give that up. I still eat bread at least 3 times a week. So I will try cutting that out. With Hashis does your tsh numbers go everywhere? They did not test my t3 or t4 this time but TSH was 4.18. It has been all over as you can see in my original post. 4.18 is the highest its ever been and my sugar was up 109 and fatty liver just diagnosed. Just funny that this is all happening now and TSH higher than before.

TSH110 profile image
TSH110 in reply to rjerome812

Fatty liver is directly related to higher TSH numbers. If it is got under control (TSH UNDER 1, ideally between 0.2 and 0.5) your fatty liver should recover. I found gluten free helpful. By the time I was diagnosed my TSH was massive but I had short bouts of hyperthyroidism and longer ones of hypo so my numbers must have been turning somersaults! No one bothered to test them. As the thyroid is attacked by antibodies bits of it die and dump their store of thyroxine causing spikes until the final mother of all dumps where you go berserk and then you are plunged into eternal hypo. Luckily most people get treatment before that but I did not - it was truly awful I only just got out alive and the sooner you are treated the better to help control the worst excesses of this disorder.

in reply to ShootingStars

I recently decided after checking out different opinions to follow Dr Izabella Wentz's version of the AIP. It's strict and narrower than some others But my thinking is start with minimal food choices and also use it as a kind of anti-allergy, food intolerance test. It's restrictive but I feel so bad it's easy to commit. It's only been about two weeks. Any feedback? Or helpful hints on other informative sources? Thanks.

ShootingStars profile image
ShootingStars in reply to

Take what ever Izabella Wentz says with a grain of salt. She is just a pharmacist, not a medical doctor. The school she went to does not even offer one class in endocrinology in it's Pharm D curriculum. She has no published studies that anyone can find substantiating her claims. She worked for a few years with two thyroid related groups, but to an unknown capacity. She appears to have just used herself as her subject because there are no published controlled studies that can be found. She has not cured her own Hashimoto's. She still takes thyroid medication. Her Hashi's is in remission. That does not mean that it is cured by any means. The above info is available if you carefully read her website, book, reviews, linkedin profile and investigate the groups she worked with, and read the curriculum at the school she went to. Why can't people just be honest instead of making things up and preying on innocent people?

Just go follow an AIP diet. Go completely gluten, soy, and dairy free. Avoid nightshades, avoid uncooked goitrogenic foods, and limit those that are cooked. Take probiotics. If you feel better, then you'll know you're on to something.

in reply to ShootingStars

Thanks, ss. Good advice, makes sense. That's kind of my plan. her website was fairly easy to navigate and she had specific food lists which were helpful. Will stay aware of other info also and combine to come up with my pwn plan.

TSH110 profile image
TSH110 in reply to rjerome812

I totally agree with Marz

ShootingStars profile image
ShootingStars in reply to rjerome812

Ah! The cookie cutter response! Sounds familiar! ;-) They dish this out when they don’t understand the difference between low in the range and it’s affiliated symptoms, and optimal range where the least symptoms live.

That exact mentality and non medication is what took my antibodies from 1000 (0-60), to over 6500 in just five months of no medication. TSH was 1+, became almost 8. Both frees were initially very low. They dropped to bare bones 1st or 2nd numbers of the range. All in five months! Yes, my body pretty much abruptly ceased to operate during that time.

in reply to TSH110

Thyroid care in many instances isn't much better across the pond . IMO, Levo is queen and tsh is king!

ShootingStars profile image
ShootingStars in reply to

I think it's because no one (doctors, those who set health standards) is taking the time to apply critical thinking to thoroughly understand thyroid function. Levo seems like it could be an easy band-aid for every one with a thyroid problem at first glance. TSH seems like a quick and simple diagnostic, too, because it indicates how slow or fast the thyroid is functioning. But not so fast! Unfortunately, TSH doesn't provide critical details about thyroid function itself. Levo and TSH are the easy way out to "pacify" the typical thyroid disease patient. Who cares if they feel great or not, and if they are functioning optimally, or not? If they are half-functioning, then that must be enough, right?

TSH110 profile image
TSH110 in reply to

Deffo not my favourite dynasty!

If you can why not order your thyroid blood tests from Blue Horizon the best one would probably by thyroid 11. It would give you all of the correct thyroid tests plus vitamins, minerals and Vitamin D.

Post the results on here but include the ranges for answers.

Take the blood test on an empty stomach.

rjerome812 profile image
rjerome812 in reply to

Thank you i will look into that.

in reply to rjerome812

Hi rjerome812. I'm also in the states and as we know some docs refuse to order the tests we need because they don't think they are necessary-or maybe they don't like patient input. Several posts down I mention True Health Labs in Marietta, GA- just north of Atlanta. I will PM their phone number to you. I've been having problems with getting my PCP to order tests for the past year. Out of everything recommmended on this site re tests needed to accurately assess our thyroid function the only 2 I could get her to order were ferritin and tsh. And I have no problem being assertive about what I think I need. But that is another story. Have a very hopeful appt with a new endo Fri Apr 13th. But if I don't get what I need I will go the private lab route. Will PM you now. Good luck. irina

Marz profile image
Marz in reply to

rjerome is in the US :-) Perhaps they have Blue Horizon there too !

ShootingStars profile image
ShootingStars in reply to Marz

We don’t have to order our own tests. We can ask our PCP, primary care physician, or doctor of choice to order them. Tests are covered by our health insurance. We usually have to pay something for them, but depending upon the insurance plan, not much. Most insurance companies cover thyroid labs being ran every 6 weeks. More frequent than that, and they might not cover it.

Marz profile image
Marz in reply to ShootingStars

Thanks - yes I was aware as we are seeing more and more people here from the States. I have also read that people are having difficulty getting the tests they need in order to understand their condition in more detail ....

in reply to Marz

Sorry I wasn't aware that she was in the states!

Marz profile image
Marz in reply to

I often have a quick look at previous posts and sometimes it mentions where folk are from :-) So then I don't chat on about things that have been said before :-)

in reply to Marz

Sometimes I do it too, not often enough though, thanks.

in reply to Marz

True! True! True!

in reply to ShootingStars

My problem has been getting my PCP to order the appropriate tests. She is a good doctor but doesn't really believe in nutritional deficiencies.I had to really push just to get a ferritin level done several months ago. It came back @ 42 which is at the low normal end (20-200). So I was 'fine'! (there's that word again!). I tried to explain to her that rls pts do better with higher levels-at least 100 to no avail. My EP is helping me get on iron supplements as soon as I'm off all anticoags. I also asked her for a Rx to be able to give myself B12 injections. Again, didn't think any of it (test or Rx) was necessary. She means well but I have taken my thyroid issues out of her hands and to a new endo next week.

in reply to

I just googled True Health Labs and guess what? they are in Atlanta- about two miles from where I live! This will be so easy!!!. Thanks again LAHs. irina

ShootingStars profile image
ShootingStars in reply to

Hi. That is a downright shame your doctor doesn’t understand the importance of nutrition. Nutrition is the backbone of our health and existence. Toxicities and deficiencies are very real. Can you go to another doctor in your health plan or you can get the righhttests? An ND?

Yes, your ferritin is low, but without your entire iron panel, you cannot tell your exact iron status. Ferritin alone is incomplete information and can be very misleading. What are your other iron compenonts?

That is curious. Where does the idea that ferritin needs to be at 100 come from? Why the number 100? You could end up with iron toxicity if you forced it to be 100 without having complete iron status data. Ferritin is just one incomplete diagnostic, just like TSH is. Why anyone would medicate just off ferritin alone is the same boat where people think thyroid meds are based on TSH levels.

in reply to ShootingStars

They don't. I was tested for other components like TIBC-just didn't post. I actually learned about rls patients doing better with ferritin above 100 (bearing in mind-more is not better) from the restless leg syndrome forum on this website (HU).. I can find another PCP and may eventually do that. Part of being slow to change is me. Almost all my docs have their offices in professional bldgs located on the hospital campus that I use. Their offices are all very physically close to each other and I often bump into other docs when I have an appt to see one. Also, I try to schedule more than one appt on the same day just to get as much done in one hospital run as possible. And in between I treat myself to lunch in the hospital cafeteria (a very nice one.) Then can go home, and not have to cook dinner (I box up food from the cafeteria). Anyway at lunch I run into lots of people I know incl my PCP. Don't want to feel awkward. (Poor reason to hang onto a doc.) But also,in many ways, she is a good caregiver for me so will try to figure out ways to 'take the good and change the bad'. So I guess the answer is ferritin levels can, for many of us, have a bearing on our rls pain.(I belong to 3 forums here-atrial fibrillation, restless leg syndrome, and thyroiduk).

ShootingStars profile image
ShootingStars in reply to

That's good! I've seen some people making blanket statements on here about ferritin needing to be 100 or at least half of the range for thyroid function. There is no evidence that that is the case. And they are only testing ferritin, not the full panel. People have to be really careful about their iron levels (complete levels, not just ferritin), due to toxicity in serum (not ferritin) and other blood iron component levels. Personally, I absorbed my T3 and T4 just fine with a ferrin of 23 (lowest of range was 10), and then I had iron toxicity levels in my blood when ferritin was 54. Thankfully, that has since resolved. Complete iron panel testing will keep a lot of people from getting sick or permanently damaging their organs.

I totally understand wanting to hold on to doctors, even if they aren't totally being helpful or giving good guidance. There's the social aspect of it, plus so much time is spent with them, patients look up to them or look forward to seeing them. Can you just ask (or tell) your doctor that you want to test XYZ, just to make sure, or that you'd just like to try B12 shots to see if it will help? There is no harm in her trying some of your requests.

It sounds like you have lots of fun with your friends when you go on your medical outings! If you need to change PCP's, I promise I won't tell anyone! :-)

in reply to ShootingStars

LOL. I do. I have several nurse friends I usually bump into and I really do enjoy this PCP. She's fairly young and I think as time goes by and she has more "life" under her belt her views will broaden. And she's sharp about many things. I think taking my thyroid situation to the new endo I'll see next week and removing it from my PCP's umbrella will be helpful. I have 3 significant consults next week all with new specialists. I think afterward I will have a better sense about things. You're right about the iron. We have to be careful as it's not a harmless component. Even re rls patients my understanding is the best thing is help it raise slowly and if symptoms aren't lessening then maybe time to move in another direction. Actually a potential solution cropped up within the past hour. (The Universe provides!) My friend (Jacob) also sees the same PCP/GP. There are 3 other docs in the office-one is new. Jake called and said he needed a new Rx and our PCP had no openings in time for him to get needed refills. He asked if I knew anything about the new doc. I didn't but said take the appt; he'll give you your refill. So we'll be able to get a feeling about him and I can always find a way to see him for a visit by choosing an appt day when my PCP isn't there. Kind of devious but there it is. Not sure about this but always good to have a 'plan B'. P.S. Thanks for keeping my secrets!LOL

in reply to ShootingStars

Hi. The rub is getting some doctors to order the tests. Don't know why they are so stubborn. Most labs want to go the "doctor ordering the tests route because of the way money is dispersed among everyone involved. IMO, BIG flaw in our system!!! This is my current prob with my PCP. But I have a plan inplace starting with a new endo appt next Fri.

LAHs profile image
LAHs in reply to Marz

The US equivalent for Blue Horizon is True Health Labs. Google them Rjerome, they are very good. Not too expensive but not cheap. They have kept me knowledgeable and healthy for about four years - since I stopped listening to my doctors who were making me very ill. Sign up for their "complete thyroid panel".

in reply to LAHs

Thanks. I've been looking for a fairly reasonable lab that will draw tests without a Dr's order. If I can't get them drawn by my new endo next week, I will go thru them.

rjerome812 profile image
rjerome812 in reply to LAHs

Do you have to pay quest or whomever draws the lab. I just got the Basic thyroid Panel to start. That will test t3 and t4. then i will get antibodies done after that.

Angel_of_the_North profile image
Angel_of_the_North in reply to Marz

They have Genova and many others AFAIK

Astridnova profile image
Astridnova

Vegan diets totally lack B12 which you cannot live without. Your liver stores it from the supply you had at birth, but it runs out eventually, causing demylination of the nerves, dementia, loss of ability to walk etc. B12 deficiency often accompanies thyroid problems, even on a good diet, so don't increase your risks. You can supplement B12 either via injections or via high dose sublingual lozenges and nasal sprays if you cannot bring yourself to eat meat, fish, cheese, eggs, or if you have an absorption problem. There is strong theory that many vegetables, especially soy beans, contain large bacteria DNA introduced for genetic modification and the big particles cause inflammation to various organs, including frequently the thyroid and the gut. And we are told to avoid gluten.

I agree that you need to have your T3 measured.

SeasideSusie profile image
SeasideSusieRemembering

You're Hashi's aren't you? Your results will vary due to antibody activity.

Are you always having your thyroid tests under the same conditions every time so you can compare results accurately? Always advised here is earliest appointment of the morning for blood draw, and fast overnight, you can have water. It's over range TSH/below range FT4 that will give you a diagnosis of hypothyroidism. Are you also having FT4 tested?

As you are in the US, is your Vit D unit of measurement NG/ML? If so then the Vit D Council recommends a level of 40-60 so you need to supplement with D3.

High cholesterol is one of the signs/symptoms of hypothyroidism thyroiduk.org.uk/tuk/about_...

rjerome812 profile image
rjerome812 in reply to SeasideSusie

I always do blood work at 6 am. Yes im in the US. I live in Las Vegas , you would think with all the sunshine my D levels would be good.

rjerome812 profile image
rjerome812 in reply to rjerome812

Sorry I didnt see the t4 question, no they will not test my T4 until my TSH is over 4.50. That is why I'mgoing to a new doctor.

TSH110 profile image
TSH110 in reply to rjerome812

I was working outside in the hottest sunniest uk summer we get but I was still severely VitD deficient so you could be despite your lovely climate. At that point I was being treated with Levothyroxine but I felt terrible. Once I got vitD3 things started to improve. It is worth checking out hypothyroidism seems to affect VitD levels

LAHs profile image
LAHs in reply to TSH110

Yes, absolutely. I worked outside in the Californian sun from Spring 'till September, every day in shorts, tee shirt, and no hat (yes, I know, stupid). I just happened to have a random Vit. D test in September and it was below the bottom of the range! The sun may not work for you, take a supplement as silly as it might feel in a hot, sunny climate, you can still be Vit. D defficient. I have to add that this was a period when I was hypothyridic but not aware of it.

rjerome812 profile image
rjerome812

Whats NDT?

Marz profile image
Marz in reply to rjerome812

Natural Dessicated Thyroid - from the thyroids of pigs and containing T4 - T3 - T3 and T1.

JOLLYDOLLY profile image
JOLLYDOLLY

Hi rjerome812,

Did they test the T4 and T3? You definitely need medication if they are going by the TSH levels.

I am on 200 mcg of T4 and 20 mcg of T3, just had my TSH levels back and it was 4.87, which would indicate I am under medicated. I am to have a second lot of bloods done in a few weeks. My T4 levels are in range but on the lower side.

I am in complete shock that with your family history too that they are not going forward with this. I would definitely go to a different GP, even if you have to change practices and also asked to be referred to a reputable thyroid Consultant, you have rights to do this.

Have they checked for B12 deficiency and Anaemia as well? These deficiencies run in families too. We have the lot in ours including myself and vitamin D deficiency. They also have similar symptoms as thyroid issues.

It baffles me when they say exercise and diet, how are you supposed to do that if you have no bloody energy etc. The weight gain is because you thyroid is struggling and this will have a massive effect on your pituitary gland and metabolism.

I get so angry at these professionals, they are as much use as a chocolate fireguard for the amount of experience and expertise they do not have.

Our thyroid function is so fundamental to our well being and so easy to put right, if the so called professionals took the time to understand it and treat everyone as an individual.

I hope you can get the help you need my lovely and go get another opinion. Let us know how you get on.

Take care :)

rjerome812 profile image
rjerome812

Hello Jollydolly, They have not tested my T3 or T4 yet. I go wednesday to a new doctor so im hoping he will help me. My vitamin D and B12 are both low. But i have been taking supplements. It has been a battle. I have just been dealing with it the last year because the 2 other doctors i went to will not do anything until im over 4.50 (TSH). Maybe its the HMO insurance. But im willing to pay the money to get the help i need or buy the medicine. I just dont know if i can but thytoid medicine on line without a doctor.

Marz profile image
Marz in reply to rjerome812

Once you have been supplementing B12 the results will be skewed. Keep on supplementing :-)

ShootingStars profile image
ShootingStars in reply to rjerome812

Hi. You won’t need to. The right doctor will understand Hashimoto’s, order you labs, and prescribe the right medication.

rjerome812 profile image
rjerome812 in reply to ShootingStars

Did you find the right doctor? Where can I find them lol

ShootingStars profile image
ShootingStars in reply to rjerome812

Hi. Yes, it took me 12 years from the very onset of symptoms and 10's of multiples of doctors to finally get diagnosed. No kidding. But hey, then it only took 6 to get one that understood that I desperately needed thyroid medication. ;-)

ShootingStars profile image
ShootingStars in reply to rjerome812

That is the very tricky part. Probably the most effective and efficient way to find a good doctor is to go on facebook and either join a Hashimoto's or thyroid disease group and post a request for a doctor in your area, or if they are a public group, read all the comments. There might be local or state groups in your area, too. Other options: search the web on your city and Hashimoto's, go to Whole Foods or some other well known health food store that has a huge vitamin section, and ask there, or go to your pharmacy and ask which doctors prescribe T3. The doctors who prescribe T3 are the ones who likely understand the thyroid better and how thyroid hormones work within our bodies. One more idea: while getting your blood drawn, ask the lab tech if they can think of any doctors who routinely order FT3 tests and thyroid antibodies test. Write down the names, go online and research that doctor. If they pass your scrutiny, give them a call. I did just that and found a specialist this way.

in reply to ShootingStars

Great suggestions.Some I never thought of. We used to have a saying when I was still working in the OR. "If you want to know who the best surgeons are, ask an OR nurse.

in reply to rjerome812

Check the yellow pages under 'right doctor'. Joke! Joke! LOL. If only it were that easy!

ShootingStars profile image
ShootingStars in reply to

Hahahahaha! Or someone can publish the World Directory of Competent Thyroid Practioners!! :-) :-) :-) I actually still have some phone book company who leaves a yellow pages at my mail box every year. They left one last week. Please stop killing trees and using printing chemicals to invade our already over taxed environment! That thing goes straight into the recycling box. I've requested they stop sending me their book, and they won't stop.

in reply to ShootingStars

I know. Junk mail, advertisements, and the like provide fodder for one of my many soapboxes. Another biggie with me are marketing phone calls. I usually don't answer a call with no caller ID. But I've noticed some companies I do business with seem to have a thousand phone numbers. My CPAP supply company comes to mind. I hate to miss a call if it's about supplies. So I answer because there's not enough room in my phone for all the tel #s they seem to have. I think you should get right on that World Directory and maybe adding a 1-5 star rating would be helpful!!!!!

in reply to

If I miss the CPAP call and try to return it with them I often get put on 'eternal hold' with ads no less and what free prize I can get if I do this or that. Drives me nuts. Another daily stressor and challenge for the adrenals.

ShootingStars profile image
ShootingStars in reply to

I know! Telemarketers or scam callers are the worst. Do you have the "do not call" phone number list where you are that you can subscribe to? Caller ID?

I love it! I think that would be a stupendous idea! How about 0-5 star rating instead of just 1-5? We all can probably think of those zero star practitioners to add to the list. I'll start gathering data now for the World Directory, WDCTP!

in reply to ShootingStars

I'm not sure I have the right number. You seem to have an effective one so I'll take it please. I've called one that always comes with my credit card statement but I still get pre-approved offers for cards. This makes me (and my adrenals) nervous because in my senior bldg there are some residents who, IMO, opinion are ready for another level of care, but have caregivers and continue to live here. They don't mean to ignore mail for someone else that inadvertently got put in their box but they aren't capable of remembering to bring it to the office. Sometimes their caregivers will get their mail for them and as they are vetted and employed by outside healthcare companies I don't know anything about them. So I worry one of these unsolicited preapproved offers will end up in the wrong hands. Plus I get catalogs that offer instant pretty high credit limits. Tried to stop those too. Very frustrating. I try to be so careful. About 6 years ago I had someone overseas try to change my direct deposit Social Security check to an offshore bank. I caught it and wasn't out any money but it was a nightmare. I have one card/ck acct that I only use for ordering online and only transfer money as needed to order something. I use my main card/checks rarely and only for very secure things-like rent checks. Today's world is nervewracking in so many ways. Thanks for listening.

ShootingStars profile image
ShootingStars in reply to

You have to go online to the "do not call list" and fill out a form on a gov site. You can submit land line numbers, as well as cell phone numbers. Being on the list will greatly reduce those calls. I still have some calls that sneak thru. I just don't answer them unless I'm expecting a call.

in reply to ShootingStars

Thanks. Will do.

ShootingStars profile image
ShootingStars in reply to

I know what you mean about concern for those pre-approved offers. I never put those into my recycling bin unless I have put them into the shredder or at least chopped up with scissors first. Debit cards come with a huge risk. Credit cards are much safer and you can easily dispute scam charges and have them reversed. It is much more difficult and your funds are tied up longer with a debit card. I stopped using debit cards years ago. Instead, I use my credit card for everything, accrue points, and then pay my bill regularly all month long. Essentially using in the same fashion as a debit card. Make a charge, make an online payment to that credit card. I pay it weekly or so. Using a debit card is far too risky. All of your money can be sucked from your account and it can take a long time to get it back.

in reply to ShootingStars

I never thought of that. I think I will do it. I've always liked the idea of purchasing online with a different card used just for that. Maybe the thing for me to do is get a second CC so I can be doubly protected. (I do believe in overkill sometimes.) I pay my CC bill by transferring money from my main account so that 1st account number is connected to my CC. Maybe possible to hack . Do you think I should get a 2nd CC? or am I being overly cautious? And a little OCD!

in reply to ShootingStars

Zero is better. Let's go with that!

ShootingStars profile image
ShootingStars in reply to

We're on!

rjerome812 profile image
rjerome812

Can you get this medicine without a doctors rx.?

Marz profile image
Marz in reply to rjerome812

I believe you buy on-line ....

ShootingStars profile image
ShootingStars in reply to rjerome812

You won’t have to. It’s covered by insurance. It’s tricky and risky order online in the US, and many drugs are illegal to order and get caught in customs. Besides, don’t always know you can trust the source and if what they send you is what they say it is.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

I have friends in the US who order lots of meds online esp from Canada and Mexico without problems, so it might be big pharma scaremongering. Worth investigating and finding people who have done it successfully. Can't see why it would be different from Europe as long as it is legal. NDT and T3 are both legal in the US AFAIK.

TSH110 profile image
TSH110 in reply to rjerome812

I found it much superior to Levothyroxine

ShootingStars profile image
ShootingStars in reply to TSH110

NDT contains T4 and T3. Levo is just T4. Your body was probably lacking T3, and NDT helped fill that gap.

TSH110 profile image
TSH110 in reply to ShootingStars

Yes I have the DIO2 mutation meaning I am a poor converter and it would explain why I feel so much better on NDT. I am not sure much is known about T1 and T2 I think T2 is a little bit more than a hitchhiker but I have forgotten what it said in the paper posted on here might have had something to do with insulin

google.co.uk/amp/s/www.holt...

Marz profile image
Marz

rjerome812 is in the US so possibly not affected by the NHS :-) - but hey things don't look good across the pond these days !

in reply to Marz

They sure don't. I believe much of the disinterest in effective thyroid tx over here is because we already have the drugs to correct thyroid problems (they just aren't being utilized correctly much of the time.) Hypothyroidism is not a money-maker on several levels-starting with Big Pharma. I think the term "the almighty dollar" has usurped good healthcare in so many ways! It's sad. It is up to us to find good healthcare for ourselves-not always easirina1975 Atlanta, GA USA

ShootingStars profile image
ShootingStars in reply to

I agree! We must be our own advocates! The meds are readily available, those competent to treat thyroid and autoimmune problems are few and far between. The main problem is that most doctors don’t fully understand thyroid function and potential symptoms because studying thyroid was briefly covered in their general medical education. I believe the same applies to endos. Most are diabetes specialists, and have minimal training in thyroid. For their specialty, thyroid briefly skimmed over.

The autoimmune part of it is so complex, I’ve found that very few doctors want to touch it. The baseline principles of autoimmunity are the same in all autoimmune disorders: the body is attacking itself. Unfortunately we are limited at this time in ways and medications to turn off or reduce that attack. I would not want to take immunosuppressants for Hashimoto’s. That causes so many other issues. In other autoimmune diseases that is what is used to reduce autoimmune attack. So little options.

in reply to ShootingStars

I agree and I also feel the adrenals are neglected and ignored big time. How can anyone who lives in today's world not have their adrenals affected by daily stress? Our bodies, IMO, are not built to handle all the stress and anxiety we are bombarded with and in such large doses. I try to evaluate where stress comes from for me. It doesn't come in any great amounts, lets say, from occasional stressful events so much as the daily onslaught of dealing with high numbers of people and esp constant noise. One of the best parts about finally living alone at 74 is I don't have to have my tv on 24/7 or be exposed to much of the inane content that I used to have to hear as background noise when others were watching or just didn't turn it off. Several years ago my sister came to stay for a while from Florida. She had been sick and I was taking care of her. We shared the same bedroom during that time and she couldn't go to sleep without the tv being on. I thought I would lose my mind. I don't have a TV in my bedroom anymore. There is a famous dr here (US) who has written many books on health, nutrition,etc-Andrew Weil MD. He was and is a pioneer in good nutrition, healthy lifestyles. He said one of the worst things we can do is watch the late night news just before going to bed. So I stopped. I watch very little news now-esp local as it is always about shootings, missing children, animal cruelty and such. I read my phone news quickly when I get up and figure if a story is important enough I will hear about it or can look it up on my computer for more details. Well, this is a rant! Will stop now.

rjerome812 profile image
rjerome812 in reply to ShootingStars

Your right , my visit yesterday with new doctor, did not go as expected. He tried to give me antidepressants. He thinks i have anxiety, I'm happier then i have ever been. The only reason i have anxiety is noone takes what im saying seriously. He said my levels weren't that high and he would do blood work every 6 months. I went online and purchases t3 and t4 tests. Since they wont test, I will try. He didn't see anything he said that needed to be treatment , Cholesterol 226, Vitamin D24, Tsh 4.18, being obese over weight 25 lbs,despite, diet and exercise, but i'm good. I don't agree. This is why i stopped going to doctors for about a year, now i only go 2 times a year(for bloodwork), because they see nothing. But why are there ranges in blood work but i'm okay to be over them. So now I will look for a doctor who specializes in thyroid and just pay him, no insurance, but first I'm going to take the thyroid tests I ordered through the internet. Thank you for all the site information. everyone. I guess I'm going to have to be my own doctor.

He didn't say I may have metabolic syndrome, but that's where i stand. With maybes. No plan or treatment or even diet suggestions.

ShootingStars profile image
ShootingStars in reply to rjerome812

Hi! OMG! The ol' antidepressant band aid! I am so sorry your appointment went so poorly. Wow! He sounds like a real winner! Another doctor who can diagnosis even if it's staring him in the face. Can you go to a Naturopath? Personally, I've had the most luck with them. Granted, I had to through 4-5 bad ones before I found a really great one. You also still might be able to find someone within your insurance network. This will take some leg work to uncover. You should be able to go to you insurance company's website, put in which type of health plan you have, select types of doctor, narrow down the radius of your search, and create a list. It won't list if they specialize in Hashimoto's. You'll have to search each doctor's website and probably call all their office to ask if they see patients with autoimmune diseases and Hashi's. Or, search facebook for a thyroid group in your area, and post a request there. Make sure you search on each doctors name and "reviews", too!

I can't believe he labelled you with a potential diagnosis, yet provided absolutely no treatment. Wait. No, I'm not all surprised. :-( It is so incredibly negligent to ignore your telltale diagnostics and symptoms! That sort of nonsense happened to me over the 12 years I tried to find a diagnosis. I got the diagnosis, but like you, was told I was fine and didn't need treatment. A few tired to give me anti-D's. I said no! The "you're thyroid's fine" mentality continued through 5 more doctors until I met my PCP. She knows basic thyroid, and like most MD's is only educated about T4. She prescribed my T4. I knew by my levels I needed T3. I found a wonderful ND, she agreed and she prescribed T3. She eventually retired. My PCP has seen how well I've done on T3, so she prescribes it for me now. I still need a Hashi's and autoimmune ND, so I'm looking for a new one. So far, I've met a few quacks. Next! I've found endos to very worthless and filled with misinformation. They either don't understand T3, don't understand Hashimoto's, or don't understand TSH. Fail all around.

ShootingStars profile image
ShootingStars in reply to ShootingStars

Hey! I have a new and brilliant idea for you help you and anyone else having trouble finding a good doctor to find a really great doctor! I actually did this today myself because I wanted to find a new doctor who treats complicated Hashi's and high antibody cases correctly. I love my PCP, she prescribes my meds. She just doesn't know about Hashimoto's or autoimmune conditions.

I decided to call our top local compounding pharmacy. I told the the pharmacy tech about my struggles with Hashimoto's, my major autoimmune problems, as well as the difficulty I've encountered in finding a good doctor who understands and treats both. The pharmacy tech I spoke with said she'd talk with the pharmacy owner and have the her call me. The owner called me today! We had a lovely long conversation. She gave me three recommendations. I chose one, called her, and I am scheduled for April 20!

I see that Vegas has quite a few compounding pharmacies listed and reviewed on Yelp. Lots of reviews to read. You could choose the top 3-4, call them, ask to speak to a tech, tell them you might be interested in LDN (who knows, maybe you are ;-)), what is the cost with your insurance? Then tell them you have Hashimoto's, high antibodies, and cannot find a good doctor to treat you and give you medication, and ask if they could possibly recommend some doctors? Ask the tech if you can speak with the owner of the pharmacy. The owner will know exactly which doctors are good ones and should have several to recommend! Here you go:

yelp.com/search?find_desc=C...

rjerome812 profile image
rjerome812 in reply to ShootingStars

Thank you

in reply to ShootingStars

Yelp.com is a good site for getting honest info as anyone who receives comments-good or bad- cannot go into the site to change or delete them. Not all evaluation sites here are like that. I use yelp a lot.

ShootingStars profile image
ShootingStars in reply to

Yeah, not like the reviews that people leave on Amazon. There are fake reviews, or the seller removes bad reviews. Izabella Wentz is known for doing this. When her book first came out, there were lots of negative comments, which have since been deleted.

helvella profile image
helvellaAdministratorThyroid UK in reply to

I think Synthroid has made an absolute fortune - and still continues to contribute a lot of income to AbbVie.

in reply to helvella

I agree. Synthroid/levo is such a common drug over here. I live in a senior living bldg and with 200 apts, it's big enough to have enough people to gather unofficial info on their medical histories as many of us share doctors, med probs, etc. And small enough to know everyone else's business. LOL But tho people don't go on and on about nothing it's interesting to hear about what meds and treatments are prescribed. There are quite a few residents who are in their 80's and even 90's who are healthy, and appear to be in good physical shape esp for their age. I am amazed how many of us are on meds 'for prevention' or 'subclinical' 'problems with good lab values. Many are not even told why they need specific meds or treatments. When they tell me their story, even as a nurse, I can't always figure out why they are receiving specific care. This is not scientific research but it reinforces how many meds, procedures, etc might not be as necessary as people think. Insurance approves things so easily if doctors document the need correctly (acc. to insurance guidelines) and they know exactly what to say to get insurance /medicare to pay. Healthcare here is good in many ways-esp emergency care but IMO a lot of 'chronic' problems are real money-makers. I believe a lot of healthcare money is mishandled, wasted, and ends up in the pockets of a few. Re Synthroid, I am surprised re how many residents are on small doses that might not be necessary. I hear a lot of info re my neighbors' health info because they know I was a nurse and ask me questions. But we still sometimes have to fight for the care we need (thyroid/fibromyalgia, etc) if the problem has little moneymaking potential. Wordy! but thanks for listening.

ShootingStars profile image
ShootingStars in reply to

So, why don't these people just ask their doctor why they are prescribed particular meds or treatments? Just because they don't understand why they are taking certain medications or are receiving certain treatments doesn't mean that they don't necessarily need them. It's up to the patient to be their own advocate and to ask questions.

That's just plain ridiculous if they are taking medication and have no idea why. People should never be such huge pushovers or so easily manipulated that they follow what some doctor says, without fully understanding why. You own your body, not some doctor. Unfortunately, many patients just don't have the capacity to understand their own medical conditions and medications, or they are meek and insecure about their doctor/patient relationship and don't want to ask questions.

This is not only an elderly population problem, but it is more common with the elderly. I see this with my own parents. The lack of knowledge and understanding is unbelievable. People have been able to rationally reason and critically think and make decisions, and navigate through the rest of their lives, yet when it comes to their own health and healthcare, they throw their hands up, "I don't know".

How do you know that your friends on Levo might not need it? Are they telling you their "TSH" is normal? If that's the case, they don't get it because medication isn't prescribed on just TSH, "normal" is a huge range, and does not mean "optimal".

in reply to ShootingStars

You make good points. I haven't seen their records so it's all scuttlebutt. Sometimes people look 'healthy' or 'sick'or just tell you their symptoms so it's very unscientific. I wonder the same thing; how people who would not accept such sloppy work in relation to their car maintenance can be so lax about their health care. I think one big factor might be that the ages of seniors put us in the category of people who were raised not to question doctors as they had 'special knowledge' not available to the rest of us. And it's hard for them to question their docs even though so much information is now available. Also, in my bldg more than half of the residents don't know how to use a computer even though their children have bought and set up equipment for them. So they can't access info.Some people have even asked me to make a phone call for them as they are overwhelmed by the technology on their phones and become frustrated. There are about six or seven nurses living here and because of our background we are able to keep up and stay knowledgeable about our care. But we are the exception. I don't like to generalize about anyone but I am even developing a dislike for going to older doctors because often they are still living with the idea that they know best and we should just listen and follow orders. I am an anomaly with some doctors and try to pick up on their philosophy about patients participating in their care ASAP to save time, money, and my sanity! So, as I said, I don't know. Just have theories and opinions based on info that comes my way. The longer I live here (my second year) the less I try to be involved or hear about other residents' probs. Several months ago a neighbor here asked me to help her put on and take off a boot she had to wear for several weeks due to a foot injury. So I would go to her apt and help here. She mentioned this to her doc and told me he said to tell me."Shame on you (ME) for practicing medicine without a license". Yes, true story. This was very hurtful to me because a large part of my self-esteem comes from my career and helping people. So my new rule is help anyone that has an emergency or real immediate need but just refer others to their doctor. The story and remark are anecdotal; he may have said something different and this was her take. Also, she probably didn't need to pass his remark onto me. Bur (as you can tell from the length of this post) it really made me feel bad for a long time! Thanks for listening. irina

Ruthi profile image
Ruthi

I'm amazed that others have commented so little on your diet.

NAFLD is not caused by fat consumption. It is caused by fructose consumption. And you get fructose from fruit, honey and sugar. Whereas glucose is driven into the cells by insulin and converted to fat, fructose is converted to fat by the liver, where it is stored. It is almost identical in chemical structure to alcohol, which is why the liver handles it in the same way.

You NEED fat, cholesterol is the precursor to many hormones including the thyroid hormone. Its so important that the body will make it if needed but a diet low in fat will almost certainly impact on your ability to make hormones. And it needs to be good quality fat - from animal sources or to a lesser extent olive or coconut oil.

You also need animal protein and all the associated nutrients. Veganism is a moral choice, but it is not conducive to optimal health. Not a single stone age culture we know of lived on a vegan diet. It might theoretically work, but it is not what we evolved to eat, or anything near it.

Regardless of your thyroid status you need to address your diet. Cut out fruit, legumes and grains, all sugar and its relatives. Introduce animal protein and fat. That will reduce inflammation, slow the progress of Hashis. Look at Ketogenic, low carb high fat and Paleo diets. They all have everything you need. I personally eat clean Keto, but not Paleo since I do eat some dairy.

gabkad profile image
gabkad in reply to Ruthi

And Ruthi, fatty liver causes fatigue. It also screws up conversion of T4 to T3 because that's where most of it happens and a fatty liver isn't getting the job done right.

Checking for fatty liver is easy: ultrasound.

Initially, liver enzymes are still in normal range.

I think vegans can avoid fatty liver if they primarily consume pulses, potatoes, other tubers, whole grains, non grains like quinoa, and vegetables. It's the vegans who are getting into smoothies (full of fructose if they use fruit) and eating sugary 'reward foods'. Juice bars are the devil. Just plain silliness as far as I'm concerned. People need to chew their food, she says, having a sip of Pinot Grigio. ;)

rjerome812 profile image
rjerome812 in reply to Ruthi

I was drinking fruit smoothies for breakfast. I stopped. It had bananas, strawberries and blueberries. No milk or yogurt, just water. But it still caused issues for me. But i ate a very good vegan diet I thought , but i just didnt work for me other than my cholesterol dropped 30 points. But sugar was off and alot of other blood work. So now im have added eggs and fish back into my diet the last month but thyroid numbers still higher then usuall. So apparently I cant fix everything with diet.

ShootingStars profile image
ShootingStars in reply to rjerome812

I would love it if we could! Proper nutrition in itself is food as medicine. It just can't fix autoimmune thyroid disease and/or hypothyroidism, unfortunately.

ShootingStars profile image
ShootingStars in reply to ShootingStars

Actually, I should edit that. Food can't fix autoimmune response, but it can lessen the attack and can help reduce antibodies. That is why eliminating 100% gluten is recommended for Hashimoto's and some other autoimmune diseases, as well as eliminating dairy and soy. Even just a bite of gluten here and there can increase autoimmune activity. It's recommended to try a completely gluten free diet for at least 3 months to see if your inflammation and other symptoms improve.

in reply to Ruthi

I've just started down this AIP (autoimmune paleo as laid out by Izabella Wentz). I lost a lot of weight in the last three years by eating mostly vegan. Was able to get off all insulin, BP meds, and lower lab values. My motivation came one day when I looked at all the meds I was on-15 total and thought how ridiculous that was. Saw a Dr Fuhrman on public television, bought his book and followed it. It helped me with the above changes but now think I might have missed out on necessary nutrients. Maybe it's my age, or just time taking it's toll. But I think it has taken a toll in other ways by Vitamin and mineral depletion so have added grass-fed/finished meat-not a lot, more pasteured eggs and eliminated the usual gluten, soy, sugar, etc. I only recently started to be very 100% with this plan so too early to notice major changes. BTW about 4 years ago an ER doctor mentioned trying eliminating dairy. He was right. I did. Got off several asthma meds, (which probably never did my thyroid and adrenals any good) and haven't had asthma attacks since. I recently took some antibiotics so bought some goat's milk kefir. But after about a week stopped-just didn't feel right.

Angel_of_the_North profile image
Angel_of_the_North in reply to

Some people with allergies (and autoimmune problems) are oversensitive to histamine and fermented foods like kefir and sauerkraut are high in histamine (it's a DAO gene problem possibly ;-) ).

in reply to Angel_of_the_North

Interesting. I've been using exactly those 2 foods a lot lately. Will rethink everything. BTW is there a way to find out if I have that gene? I have a hx of asthma and allergies and maybe this increases chances of histamine problems. I don't know. Anyone?? Thanks.

Angel_of_the_North profile image
Angel_of_the_North in reply to

It's not just if you were born with an "unhappy" DAO (there are several different SNPs that can have an effect) but whether it is expressed or not. Generally, you start by seeing if you answer Yes to 2 or more of these:

1) I tend to suffer from these symptoms after eating leftover, citrus or fish: irritability, sweating. nosebleeds, runny nose, headache

2) I'm sensitive to red wine or alcohol

3) I'm sensitive to many foods or suffer from leaky gut

4) I generally feel better 2 or 3 hours after a meal as compared to 20 mins after

5) I felt better when pregnant and could eat more varied foods

Sometimes allergy testing works if you are just sensitive to a few foods, or an elimination diet, but not for everyone. It's actually a good thing in some ways as it warns you early about things that aren't good for you.

DAO is supposed to get rid of histamine outside cells (eg in the gut). Much of that is produced by bacteria like lactobacillus and certain gut bacteria produce a lot. Some histamine is produced by the immune system in response to stress. An unhappy DAO overreacts to histamine (food allergies, runny nose, migraine, asthma, car/sea sickness, SIBO, itchy eyes etc).

A lot of the things that are "good for us" are high histamine: yoghurt, kefir, sauerkraut, kimchi, fruit juice, vinegar, lemon juice, bone broth. You need histamine to make stomach acid and keep the gut moving, but not so much histamine that DAO gets hysterical.

What upsets it? too many histamine containing foods, microbiome imbalance, candida, SIBO, metformin and MAO inhibitors, high-protein diet, acidic diet, stress.

How to balance microbiome without eating histamine containing foods? Foods with high calcium and copper (even if they are goitrogens): sheep or goat dairy (not cow), okra, cabbage, kale, broccoli, watercress, sprouted grains, almonds, sprouted grains; liver, sunflower seeds, lentils, molasses, asparagus, turnip greens, plus most foods on an alkaline foods list. no probiotics containing lactobacillus casei or bulgaricus. High oestrogen doesn't help either, so beets, carrots, artichoke, dandelion and cabbage-family help to get rid of excess oestrogen. Make sure you have enough stomach acid, digestive enzymes and bile (beets again for bile). Balance protein with lots of veg. Optimize sleep.

you might just need to cut back a little on high histamine foods, or balance them with foods from the alkaline list.

Anti-histamines don't actually get rid of the excess histamine or balance it out; they just damp the reaction. Even if you have a bad gene, changing lifestyle can stop it being expressed.

in reply to Angel_of_the_North

Wow! A load of good, for me NEW info. Thanks for taking the time to write it all. Especially the test (I answered yes to 4 out of 5). Also, vinegar caught my eye. I have been drinking organic apple cider vinegar daily for a long time thinking it was a healthy thing to do. Maybe this is wrong and I should stop. And thanks for specific food info. Saving the list.

Angel_of_the_North profile image
Angel_of_the_North in reply to

Don't go crazy, apparently apple cider vinegar is one that many DON'T react to - so if you've been OK on it for years, no reason to stop, But if the things you've changed recently have made you feel worse, they might just have made too much histamine. There's another whole just of symptoms, but I have to look it up as it one of the ones that doesn't seem to affect me even though I was asthmatic from early childhood and got hayfever at about age 12.

in reply to Angel_of_the_North

Thank you. Will keep my ACV for now. Grew up on it. Also asthmatic but no attack for 4+ years since giving up cow's dairy. And was able to give up the associated (God-awful and expensive) asthma medications and inhalers.

jgelliss profile image
jgelliss

Ruthi

Thank you ! So well explained .

Fatty liver is often caused by high carbs (which convert to triglycerides in the body) so going vegan can make it worse. GPs always blame the patient when they don't know what to do.

rjerome812 profile image
rjerome812 in reply to Angel_of_the_North

Yes, my triglycerides were 205 when i was vegan. But since i added eggs and fish its back to 121. But cholesterol went up fast from 11/22 to now 186-226. I looked at diet and oatmeal and most of what im eating has low cholesterol. But still went right back up .

Angel_of_the_North profile image
Angel_of_the_North in reply to rjerome812

Diet doesn't really have a lot to do with cholesterol as the liver makes more if we don't get enough. Those numbers don't make any sense in the Uk as we use a different system. There have been very few studies on the effect of diet on Nafld - but one showed that eating a lot of monounsaturated fats reduced fat in the liver and most have shown that it's total calories (excess) more than dietary composition that affects it, which is understandable as it is caused by failure to process triglycerides. Causes of high triglycerides are usually stated as hypo, diabetes, obesity, kidney disease and alcohol. Most of those have to do with failing to deal with carbohydrates/insulin resistance, so that's probably where you need to go. But it's a bit chicken and egg: nature.com/articles/ijo2017231

ShootingStars profile image
ShootingStars

There were studies conducted in order to create synthetics and put them into mainstream use. Synthetic thyroid hormones are bio identical to natural hormones. There have been lots of continued studies ever since on the efficacy of using levothyroxine, as well as liothyronine to a lesser degree.

I agree-just browse around. Sometimes I do forget to check the posting date and end up replying to a really old thread!

ShootingStars profile image
ShootingStars

Yes, but T3 and T4 are the primary hormones that our body needs. T1, T2, and calcinonin pretty much just came along for the ride in the pig thyroid tissue to create NDT. T1 and T2 are the precursors to hormones T3 and T4. T1 and T2 are the result/byproduct of the process of thyroid hormone synthesis and don't act act on the thyroid hormone receptor. In other words, for all intensive purposes, they appear to be totally inert; having to therapeutic value. They were just part of the pig tissue.

Calcitonin has not been found to have any significance in the human body.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

Yet there are calcitonin nasal sprays made from fish for osteoporosis (nasty side effects though). I suspect no one has ever looked at what it does in other situations. No one seems to know what T1 is for either and T2 research is fairly new. But, then, if you have a money spinner like levo, why would you bother funding research into anything else?

ShootingStars profile image
ShootingStars

That's very interesting. What sort of allergic reaction does she have? Is her reaction to all types of fruits, or do some give her less allergic reaction? Simple carbohydrates would be one common factor. Some, but not all fruits contain C. How is she with vegetables?

That makes it all the more challenging when she doesn't even eat fruits, sweets, drink alcohol, yet has fatty liver. Is she able to get some relief through diet and medication?

rjerome812 profile image
rjerome812

I had a partial hysterectomy 2 years ago, because of endometriosis. Not fun stuff. For years I thought my pain was IBS. Which i have suffered with for years. Now its a new set of pains, still stomach here and there, but now its liver and joints. I go to new doctor today. Hoping he will check T3and T4 and help me with this. Thank you everyone for all your help!

ShootingStars profile image
ShootingStars in reply to rjerome812

Hi! We are all glad we can help! Since you already know that you have one autoimmune disease, Hashimoto's, it is possible that you have other autoimmune activity. You see, once you have one type of tissue that is being attacked by your body, your chances of having another greatly increase.

It would probably worth your while to eliminate that you don't have other autoimmune problems. Some baseline tests that can measure this for you are ANA, CRP, ESR or SED Rate, Rheumatoid Factor, Compliment Proteins C3 and C4. For the over all status of your body function, Comprehensive Metabolic Panel, Complete Blood Count. A complete iron panel (not just ferretin, because this alone is totally incomplete information and is like just running TSH and prescribing meds based on only TSH)

rjerome812 profile image
rjerome812 in reply to ShootingStars

Thank you again. You guys gave me alot of information and I dont feel like its just me. Its nice people understand ,especially when doctors just look at you like its in your head.

ShootingStars profile image
ShootingStars in reply to rjerome812

You're welcome! I totally know what you mean! Doctors really should focus on what their job is: conduct diagnostics to determine the cause of the symptoms, not judge people or ass-ume.

ShootingStars profile image
ShootingStars in reply to rjerome812

I just added a bit more in my above post. :-)

ShootingStars profile image
ShootingStars

You are CORRECT. Now, what's your point?? The original poster, rjerome812 is in the US. And?

My post above is general and well-known thyroid information, not applicable to any specific country. Aside from the words "PCP" (primary care physician) and "health insurance", this these standard concepts and labs are applicable world wide. Laboratory test names might vary, however, the diagnostics are the same. Some parts of the world have doctors who trend on only running incorrect or conclusive diagnostics.

ShootingStars profile image
ShootingStars

Very true. Very different programs, similar yet different fundamental problems. I really feel for you all over there and your struggles to get diagnosed, to get the right medication. It happens all the time here, too. We have our struggles here, they are similar. Everyone has a thyroid, why is there not more focus on this critical organ? There is a lot of common use of misinformation about thyroid function, treatment and also about the mysterious autoimmune component. From what I gather here, you all too have a huge deficit of good doctors who are knowledgeable about thyroid function and who understand the actual thyroid hormones. Autoimmune problems are another even more complex enigma that no one really seems to understand and no one really specializes in.

Over here don't have free healthcare here. Is it completely free to you, or do you pay something? It sounds like people in the US might have a bit more control about what diagnostics, etc. Maybe it's because we have to pay into whatever care we get. We can ask for tests and most doctors will order them. The problem is, most people don't know which tests to order because all along we've been mislead to believe that TSH alone is all we need.

We end up paying a lot of money for our healthcare. We can get a contracted yearly health insurance plan, where there is a monthly premium of a few 100 to over 1000 dollars. Then we pay a co-pay per office visit (depends on your plan, $5-$75. I now pay $25, all previous years was $15. Specialists, I pay $55.). We have a deductible at the beginning of the year. You pay this off first before your co-insurance is applied. Deductibles can range from $100 with a very expensive monthly payment, into the thousands. This means you have to pay off all that first, and then your insurance company pays approximately 80%, and you get a bill for the remaining 20%, or whatever. Then you have your maximum out of pocket. When you reach a maximum dollar amount that you pay for the year, maximum out of pocket (MOOP) then insurance kicks in at 100%. This can range from $1000 MOOP to over $10,000, who knows how high. It's all about choices and which plan you chose for the year.

A common story here is taking many, many years to get diagnosed. Then you get diagnosed, by the doctors all think you don't need medication. They think that Hashimoto's is the same as regular hypothyroidism. It is completely different. The gold standard in diagnosing thyroid dysfunction is here TSH. So completely ignorant, misleading, and inconclusive! TSH is not even a thyroid hormone! Some doctors throw in a random FT3 or even more "brilliant", Total T4 (completely the wrong test). Their knowledge about T3 is like it doesn't even exist. The really good and knowledgeable doctors know to order all the test, TSH, FT3 and FT4. They are out there! You just have to pull a lot of weeds to find them.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

It basically the same, but with no choice of plan. We pay from our taxes whether we use health care or not. Then we pay for our prescription unless we have certain diseases (when meds are free). It is very hard to get an appointment - if you can't attend on the same day that you phone (you have to keep phoning every day until there's a free appt) you probably have to wait 6 weeks to see a GP as many surgeries now refuse to take bookings unless far in advance. For a specialist it could be several months. Then you have to get another appt for tests and take more time off work (probably unpaid). We get no say in what treatment we get unless we go private (and even then it's dodgy) and for that you have to pay in full - usually no insurance, as insurance (if you can afford it as well as the tax) covers only the same things as the NHS does anyway, so if you wanted NDT, for example, you'd pay in full. There are very few functional doctors in the UK and mostly near London and chiropractors only treat backs and bones. Many practitioners won't treat patients from outside their areas. The rules are different in Scotland and Wales (cheaper on prescriptions). It's impossible to say what tax is for health care, as it all goes into the same pot. If it was NI (which it isn't) it would be about 12% of taxable income (or double that for self employed people who work through a Ltd co and have to pay employee's and employer's rate and slightly less for sole traders) and a private specialist is about £120-240 per appt (initial one usually more expensive), plus private prescription and meds charge.

ShootingStars profile image
ShootingStars in reply to Angel_of_the_North

Yes, similar but different. We aren't taxed on healthcare. Some employers pay all, if not part of the monthly insurance premium, and the patient pays the rest, plus co-pays. A small co-pay is paid at the time of office visit, and then there is also a bill that you'll receive if there's an outstanding figure after the insurance company has paid the doctor. We have a million insurance companies and plans to choose from, but companies contract with whatever ones they choose, so you have to choose from there. How much do you pay for prescriptions? Do you have generic or is it always name brand?

We can't usually get in on the same day either, unless there's been a cancellation. Most offices have a waiting list you can be put on. How long you have to wait for your appointment depends on many various factors. Some doctors have emergency appointment slots you can fit into if it's an emergency, yet not worthy of going to the Emergency Room at the hospital.

We have that same problem with most specialists. It can takes months and months to get in. We don't have to have appointments at labs. We can walk in and you just wait your turn. Most labs have your results available online, but there are still some that are old school and inefficient.

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

Prescriptions are £8.80 each, but you can get a season ticket. If you hypo, meds are free as long as the doctor will sign the form. It's usually a generic, but varies according to the pharmacy you take it to. If I use the pharmacy in the doctor's surgery I get generic asthma inhalers; if I take it to the pharmacy in the supermarket I get branded. The NHS encourages use of generics as they are "supposed" to be cheaper (even though there is no price control on them but there is on brands) but I think a GP can specify a brand (as with levo).

Marz profile image
Marz

I know it is so upsetting when the 'experts ' have so little knowledge and are keeping the next generation unwell .... Think you will have to go along to the next appointment :-)

TSH110 profile image
TSH110

Sorry, reallyfedup123 I nowhere meant to imply that about your daughter.

Or is it the other way round? Or are both symptoms of the same problems? Been reading up on epigenetics and it seems that expression of certain genes can cause both. Correlation is not causation.

And I think it's problems with MTHFR and COMT genes. Choline and folate. We'll agree to differ.

TSH110 profile image
TSH110

It has been rebranded will try and find the link I think it is called health central:

healthcentral.com/author/ma...

Sorry PEMT not COMT. you could start here and then read his sources: drbenlynch.com/liver-and-ga... and this for genetic predispostion to Nafld sciencedaily.com/releases/2... Could be either nature (born with) or nuture (developed). And it looks as though low free t3 doesn't help: academic.oup.com/jcem/artic...

ShootingStars profile image
ShootingStars in reply to Angel_of_the_North

@Angel_of_the_North and @reallyfedup123, you guys are funny! You both make very valid points. :-) There are multiple reasons why people have gallbladder problems. MTHFR gene activation (a gene regulating the methylation process, or filtering of toxins (bacteria, viruses, fungi, metals, environmental toxins) is indeed one potential cause. Acquiring allergies could relate to having MTHFR, as allergens are toxins. Diet could cause gallbladder problems. So could a malformed gallbladder, a valve problem, a blockage problem, gallstone accumulation. Or, just being a woman puts you at a greater risk over men. If you're a woman who is over weight, your risk goes up from there.

ncbi.nlm.nih.gov/books/NBK6...

mindbodygreen.com/0-18245/m...

naturalendocrinesolutions.c...

clevelandclinicmeded.com/me...

floridahospital.com/gall-bl...

Angel_of_the_North profile image
Angel_of_the_North in reply to ShootingStars

And don't forget PEMT and its effects on lipids and phosphatidylcholine: metabolichealing.com/pemt-g... or direct effect of polymorphism of that gene on NAFld ncbi.nlm.nih.gov/pmc/articl... Other genes involved in allergies, too. The point is "why aren't you filtering your toxins, why do you have allergies, why are you fat when others eating the same amount aren't, why do you have gall stones", etc?

ShootingStars profile image
ShootingStars in reply to Angel_of_the_North

There are multiple genes effecting fat metabolism, methylation, etc. Just because a person has a gene and a predisposition to a health condition doesn't mean that gene will ever get turned on and become effective. Even If a gene is turned on and is the cause for a health condition doesn't mean that you can be cured. Sadly, it is very difficult to turn genes off once they are turned on. Not impossible, but certainly not easy and not common.

in reply to ShootingStars

There's been a saying over here for years among doctors. A profile,if you will. "The typical gallbladder patient has the following 4 traits going(?) for her: She's FAIR-FAT-FEMALE-AND OVER FORTY"!!! Don't you just love being categorized?

ShootingStars profile image
ShootingStars

Where there is deficiency, there is always toxicity. Anyone self medicating with vitamins, minerals and supplements runs the risk of toxicity if they are not routinely testing their levels. Current iron blood and storage status is only discoverable by running a complete iron panel, not just Ferritin. Unfortunately, symptoms of iron toxicity or iron overload are similar to symptoms of iron deficiency. So if people are just going by symptoms and their Ferritin level, they could so easily be causing damage. Info on iron toxicity can be found in hematology journals, blood journals, journals of medicine, etc. There are many medical studies about it.

People need to be very careful about self medicating and buying supplements just because someone on a facebook group or website says that they should. That goes for thyroid meds, iron, vitamins, minerals. Without proper testing, people are playing Russian Roulette with the permanent damage that can ensue. It's far too easy to end even sicker than where you started by guessing and putting the wrong things into your body.

?Choline/phospatidyl choline - surely worth a look if nothing else has helped.

Re; accessing good thyroid treatment

and differences between the US and other healthcare systems. The routes may be different but the destination is the same: relief from thyroid symptoms. It is very hard for us to get good treatment also. Our system may look good from the outside to those who don't live in the US but in our own way we have as many hard battles to fight to get good , effective medical care as folks in other countries! From reading posts it seems to me that the main difference between the US and UK is your system is trying to save funds by limiting and cutting services ( prescribing cheaper pills, etc) and ours is spending money like a drunken sailor on leave but the end result is the same It sounds like you are having a hard time getting effective treatment. Medical treatment for illnesses that aren't moneymakers are left by the wayside with patients like us left to fend for themselves. I find it's helpful for me to know what others are up against; helps me figure out solutions that might work here. I don't see solutions coming from "my situation is worse than yours" thinking. I'm hoping you get some relief soon. Take care. irina

ShootingStars profile image
ShootingStars in reply to

My impression is that patient's in the US can get really good care if they put forth the effort in finding that great healthcare. I am a prime example. I've gone to many many doctors, many many years, and lots of money along the way to find the competent ones that I now have. I was not about to give up and just go with some silly and wrong diagnosis, when I knew the doctor was scary wrong. So, I kept looking for the right answer because I knew that with the right diagnosis and write medication I would feel much better.

in reply to ShootingStars

That's my thinking. Always looking for the pot at the end of the rainbow. Old Japanese proverb: 'Fall down seven times, stand up eight.'

I agree. We are very ruled by money here. And, IMO, levo has a 'bigger, better, badder' lobby than Armour which may account for the change in thinking. Take care. Again, money talks. Just not to us patients! (Bad english. Sorry! LOL)

ShootingStars profile image
ShootingStars in reply to

I don't agree that it's just that "levo is bigger, better, badder". I think it is also that too many medical practitioners simply do not fully understand thyroid function, lab ranges and symptoms. I mean, how many people on this site have shared how their doctors say they are "normal", yet their bloods show they are not even close? And how many don't ever get prescribed the T3 their bloods show that they need? A lot!

I don't think there's any money for them to be made by prescribing generic T4. There might be some if it's name brand, like Synthroid.

ShootingStars profile image
ShootingStars

It's simply that Armour is not a good route for all people. It's got fixed amounts of T4 and T3. If you need more of one or the other, you're scr*wed because you'd be taking in too much of the opposite hormone to get enough of the other one that you need more of. Or, you add in additional synthetic straight T3 or T4. There is nothing wrong with that, as long as Armour works for you and you don't have negative reactions to it. I am thankful that there are synthetics. If I was stuck with just NDT as an option, I'd probably die in the process.

in reply to ShootingStars

Good point. I didn't know Armour had 2 drugs combined in one pill. Usually a dangerous way to take most meds, IMO. Best to take one substance per pill so we always know exactly what med is doing what! I usually do that. Over the years, some drugs that should never have been combined have been packaged together 'for convenience', Pharma has sold us on the idea of convenience over effectiveness. But how hard is it to take 2 pills instead of 1? Get yourself a pillbox and set your phone alarm. Also some long acting once-a-day dosing work the same way. The med is more effective if you can divide the doses rather than swallow it all at the same time. Some people's systems can handle all the medicine at once, others can't. I can't and always ask for regular doses. Plus when Big Pharma changes a med structure-especially when it's available in generic form., they can charge more if the FDA will classify it as a new form'!!! Money. Money.

Not fair, I agree.But when do governments place fairness at the top of their agendas?

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