T3: I have a question for the hashimoto's... - Thyroid UK

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HASHISmom34 profile image
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I have a question for the hashimoto's patients. when i was diagnosed last year finally after yrs of being misdiagnosed, i was put on 75 of the generic T4 and at first i was fine.... brain fog started lifting but after a few weeks starting experiencing hyper symptoms. dr wanted me to hold on longer with the meds but i chose to cut the 75 in half. 3 days later hyper symptoms started lifting and i got my blood done. my TSH was barely 1 ( i think 1.01 to be exact after skipping a day and taking half then for 3 days. lots of changes kept happening that i will not get into to drag this on, but long story short after awhile i ended up on 50 and then ended up changing over to synthroid. My T$ & T3 have not seem to have increased by all that much in 6 months of medication. My tsh is much better though, but i still don't think i am where i should be. The question is, How do i know if i need a T3 with my synthroid? or should i just try to get back to the 75 now that my body is probably adjusted so much more to the meds from in the beginning. I am working with my family dr. currently until i find an endo who will listen to me and treat my symptoms as an individual and not just say "ok the TSH says" lol blah blah!!! I haven"t been able to lose the weight even though i eat extremely healthy and am very active. or do you think it is not a T3 issue and i may need more T4? articles i have read say T4 & T3 should be at the top of normal lab bracket. Does anyone know how long it takes for those numbers to increase? sick of not being myself. Thanks in advance.

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humanbean profile image
humanbean

I just wanted to point out that synthroid is a brand name for levothyroxine. I'm not sure if people are always aware of that. There could be different fillers and binders in synthroid and the generic levothyroxine you were taking, and this could be a cause of people reacting differently to different makes of levothyroxine, but the active ingredient is the same for all brands/makes of levo including the ones classed as generic.

HASHISmom34 profile image
HASHISmom34 in reply to humanbean

human bean yes i researched all of that. From what i found out there are way more fillers in the levi i took first and every batch is different. Synthroid has to be the saME every single time. I had no issues taking generic at first besides when Endo put me on too much too quick, but 3 rd batch (refill) i ended up nauseous and bad headaches everyday. I know it was from that because i didn't take it one morning and i was fine, but 1 hr after taking it that started again (twice), after dealing with that for almost 2 wks. i pushed my family dr to start me on synthroid. No problems at all. In fact i feel better than i did and then a few wks in I started taking it before bed which was even better.

humanbean profile image
humanbean in reply to HASHISmom34

This is my understanding, and I could be wrong...

Drugs prescribed by doctors in the USA and other countries (including the UK where I am) have to adhere to a "recipe" agreed by the country's drug regulatory body.

In the US this "recipe" is found in the US Pharmacopeia

usp.org/

Synthroid and any other legally prescribed levothyroxine has to adhere to the regulations and rules set down in the USP, including how accurate the quantities of the active ingredient must be contained in each pill and how long they stay potent for.

I think you are being misled by the huge marketing budget used to sell Synthroid.

If you want an entertaining hour or two, do a Google search for "History of Synthroid" and do some reading. It is one of the most frequently recalled products ever, as far as I can tell.

HASHISmom34 profile image
HASHISmom34 in reply to humanbean

thank you. I hear you, but this was not in my head. I did a trial 2xs and the headaches and nausea were coming from the generic most definitely. In the US the research i cam across that only the name brand has to be a certain amount of ingredients and the generic are different potency and fillers every batch. I mean it said active ingredients are less in generic.

humanbean profile image
humanbean in reply to HASHISmom34

For a definitive reply to this we need helvella . This kind of thing is right up his street.

I can believe that your previous medication had fillers, binders, and/or dyes that didn't suit you. I find it hard to believe that the medication had the wrong amount of active ingredient.

HASHISmom34 profile image
HASHISmom34 in reply to humanbean

yep from what i have researched every company puts in different fillers and different amounts with the generic. It said only the brand name synthroid has the same active ingredients and potency every batch! that is crazy. It said most generics are the same but thyroid generics should not even be allowed.

helvella profile image
helvellaAdministratorThyroid UK in reply to HASHISmom34

HASHISmom34,

There are lies, damned lies, and Synthroid salesmen.

Yes, @humanbean it is my sort of question!

Towards the end of the 20th century, there was much agitation about inconsistency of USA levothyroxine products. The upshot was that the FDA demanded that every single product had to be approved by the FDA. This was against much opposition by the manufacturers.

The first such product to be approved was Unithroid. Despite their budgets, despite their need to prove their product, the makers of Synthroid were beaten to be the first to approval.

This isn't simply a matter of getting an inner-glow from winning a competition. It means that every other levothyroxine product has to match up to Unithroid. As I understand, it also means that far from Synthroid being the branded product, technically Synthroid is a generic for Unithroid.

unithroid.com/

The levothyroxine content of ALL USA levothyroxine products must be between 95 and 105% of claimed potency from manufacture through to expiry date. In practice, the range found should be usually much smaller than this. The extremes have to allow for the very worst cases - such as relatively poor storage conditions and close to expiry.

If anyone says that Synthroid is more consistent than another make, ask for proof. Ask what they make out of prescribing or selling Synthroid.

Note: Even now, the FDA has NOT demanded the same approval process for the USA desiccated thyroid products (Nature-Throid, WP Thyroid, NP Thyroid/Acella, Armour Thyroid). The only interpretation I can come up with is that they have been more consistent than levothyroxine - including Synthroid - used to be.

Note: I think that Unithroid levothyroxine is also sold as Lannett levothyroxine - exactly the same product but usually less expensive.

Note: Most USA levothyroxine products, except the 50 microgram dosage, contain colouring agents which differ by dosage and by make. It is very difficult to be sure how much effect that has as there are so many in use.

Note: Getting a different make each time you get your prescription dispensed is very bad practice regardless the make(s) involved.

Note: Your experience is your experience. I am not trying to suggest otherwise. Just don't believe anyone. Certainly not me. And I don't even sell Synthroid.

Final note: If I had to choose a USA levothyroxine product, I would start with Unithroid/Lannett.

HASHISmom34 profile image
HASHISmom34 in reply to helvella

thank you for all of the info. I am on synthrodi for some time now and i feel better on that than i did on generic. I didn't find the info i was speaking about until after this happened to me. In any acct., i am just trying to determine whether now that my body has been on meds for sometime if i can now handle a little more T4 or if i should see if i need t3 now.

helvella profile image
helvellaAdministratorThyroid UK in reply to HASHISmom34

If ever you get anything other than Synthroid, don't just accept "generic", get the name of the manufacturer. (In the EU, this is a right. I have no idea about the USA.)

37.5 micrograms is a small dose. Most people need significantly more than that. The first few micrograms of levothyroxine tend to reduce your own production of thyroid hormone by as much as the dose supplies - or more.

I think I would be looking at increasing levothyroxine before going down the T3 route. I'd also be considering all the other issues such as iron, B12, magnesium, vitamin D, vitamin B12, etc.

HASHISmom34 profile image
HASHISmom34 in reply to helvella

Thanks. I am actually on 50 of synthroid. Originally 75 which i felt good but then after a few wks i got hyper symptoms so i went to a half for awhile then 50, then eventually 50 of synthroid instead of leo as i mentioned. maybe i will talk to the new endo and see whether they think i am better trying 75 again now that my body had time to adjust or straight to T3. My b12 is fine. D is back to normal, magnesium is good and i just started iron that i added to my supplement regime since my last labs said everything was good except iron and ferritin was low but not deficient.

Gary19610 profile image
Gary19610 in reply to helvella

Wich one would you pick if you was in uk

greygoose profile image
greygoose

Hi, for anybody to be able to help you, we need to know more about you. For example, do you have recent labs that you can share with us? Results AND ranges. Have you had your vit D, vit B12, folate and ferritin tested? It's not just about hormones, we also need to be optimally nourished. And it's not just about how well you eat, it's about how much you can absorb.

It's not the Hashi's itself that has made you put on weight, it's low T3. On such a tiny dose of T4, it wouldn't be surprising if your T3 were low. Plus the fact that you might not even be converting the T4 you're taking. But, to know that, we would need to see your FT4 and FT3 levels.

The fact that you have trouble raising your dose - although, don't forget that hyper and hypo symptoms cross over, a lot of symptoms are common to both - suggests that you do have nutritional deficiencies. But, you have to go about correcting them methodically, not just grab a multivit in the supermarket! So, get those tests done, and post them on here, and members will be able to advise you. :)

HASHISmom34 profile image
HASHISmom34 in reply to greygoose

My brother is a nutritionalist so i am well aware of all of that.going on 2 yrs ago my dr said i was fine, come to find out my vitamin D, even though i eat a well balanced diet, lots of veggies and fruit as well, was border deficient (28) which was weird because i am outside every day even in the winter. I started taking a very good multi vitamin/ mineral with high B vitamin levels, starring taking pharmaceutical grade omega 3s, A high potency D3 which is actually a hormone not just a vitamin, a magnesium/ calcium/vit d combo supplement with the proper ratio together for absorption. That definitely did really help a lot. that was way before the thyroid replacement was prescribed. As i said they think i had auto immune disease for many yrs and thyroid condition for a long time due to my symptoms & history. auto immune and thyroid issues run in my family.

Next i started taking Raw protein supplement when i work out with tons of nutrition, enzymes, probiotics etc. (garden of life raw protein) which is awesome. As we all know auto immune is about gut health and leaky gut, inflammation so you need to address that. Recently I bought collagen to take because a hashi's fellow runner of mine told me something she takes that seem to help (maybe it will help, maybe not, we are all different) and lastly I had my iron and ferritin tested recently since my B12 was on the higher end and turns out i was not deficient but i was low. So I have a iron supplement i started with added Vit c for absorption. I have asthma which is well controlled with pulmicort inhaler 1x -2xs daily and occasional dose of liquid chlorophyll. Plus my smoothies contain chlorella, wheat grass and spirulina some days for detoxification of my body. I take weekly magnesium baths to help with that too. Next my brother told me I can try selenium supplements for help with thyroid function as well as turmeric for the inflammation in my body because i get flare ups of joint pain, they claimed yrs ago it is carpal tunnel, but i am not so sure not that it is in ankle and knees now. I have yet to buy those 2 but dr said he is right. Also my husband and myself believe that i have other auto immune stuff with the joint issues, really bad food sensitivies where i get diarrhea, nausea, throw up sometimes and just extreme stomach pains (sorry for being so graphic.) Mybe a rheumatologist for further testing and/or possibly just cutting out dairy and gluten one at a time to see what happens. Most recent Thyroid labs showed TSH 1.76 I was told people feel best between 1-2 so i guess this is perfect,

T4free is at 1.0 range 0.8-1.8 (in 6 month up from 0.8 it was at)

T3free is at 2.7 range 2.3-4.2 (in 6 months up from 2.4)

Thyroglobulin ANTIBODIES up from 18 ,5 months ago to 28 which i thought the antibodies slowed down once you got on hormone replacement???this number should be less than 0

Thyroid Peroxidase antibodies up from 301, 5 months ago to 404 and this number should be 0 but recent infections or coming on infections or viruses can have it be less than 8 and you can still be without auto immune disease

TSI 49 should be less than 140 (they tested me to make sure i do not have graves' antibodies by my request because it is rare but it can happen with hashi's)

I had the nook at my cortisol levels (adrenals) which was positive 18.9 and it should be between 4-22 for my age (almost 35)

My C reactive protein was .3 which should be less than 1 and showed inflammation and they were surprised how low it was for having auto immune conditions but i have always been very active and fit even through pregnancies and that gages your risk for heart issues

last my ANA came back Negative even though i have auto immune but i was told one day it can be negative and i can test positive next week, plus some people they also said with auto immune disease regularly test negative constantly and it is so hard to diagnose those patients conditions

I appreciate any help, but my thought have been i need cytomel added maybe?????

greygoose profile image
greygoose in reply to HASHISmom34

What you actually need is an increase in levo. Both your FT4 and FT3 are below mid-range. You do seem to be converting what you've got rather well, you just don't have enough to convert. It's not just the fact of taking the levo that helps, it's taking the right amount. And you aren't. An increase in dose may be all you need. You can take T3 if you so wish, or course you can. But I can't say I think you 'need' to take it, as such. And nobody could have told you that without seeing the results for the FT4 and FT3.

Be aware that running, and other strenuous exercise, uses up your T3, which you cannot easily replace - not the way you can when you have a fully functioning gland - which makes you more hypo. It's not a good idea to do things like that until your T3 is optimal.

Your TSH is not perfect, it should be one or lower when you are on thyroid hormone replacement. So, yours is still too high. After that, it becomes irrelevant - unless it goes high again - the FT3 is the important number, and most people need that to be up the top of the range to be well.

I am not a nutritionist, but I do know that when you are hypo, it's not about how well you eat, it's about how well you absorb; certain vits and mins should be tested before starting supplementation: multivits are a waste of time no matter how 'good' (expensive) they are; and taking calcium supplements is not a good thing to do. Taking vit D3 increases absorption of calcium from food, which is why you should take vit K2 with it, to make sure the calcium goes into the bones and teeth, and not the tissues.

What sort of adrenal test did you have? And what do you mean by 'positive'?

Antibodies are never zero, we all have some, even if they're not enough to cause a problem. Just taking thyroid hormone replacement does not necessarily bring down antibodies. But it's a good idea to keep your TSH at zero to minimise attacks.

HASHISmom34 profile image
HASHISmom34 in reply to greygoose

i have been told by multiple peeps that they have reduced their antibodies by a combo of selenium and cutting dairy and gluten which those two are inflammation causes. cortisol test is what i had. it said i am within guidelines. and from what i was told no one should have antibodies unless there is a virus, infection or auto immune. I will have to look into the vitamin k although that is in m y multi I believe. Thank you very much :)

greygoose profile image
greygoose in reply to HASHISmom34

Yes, it's true, some people can reduce their antibodies with a combo of selenium and dairy/gluten free. But, any signs of gland activity will increase them again. That is why the TSH should be kept at zero.

There are several tests for cortisol : serum blood test, 24 hour saliva test, or the Synathen test. The best one for adrenal fatigue is the saliva test.

I have always been told that everyone has some TPO/Tg antibodies. It the doctors are wrong, then so am I.

There is rarely enough of anything in a multivit.

HASHISmom34 profile image
HASHISmom34 in reply to greygoose

thanks greygoose. no i had the morning serum cortisol. yeah i never heard that about keeping the TSH around 0. That is just hashi's though? I was told best is between 1-2....... so confused!

greygoose profile image
greygoose in reply to HASHISmom34

Doctors like it between 1 - 2. But they don't have to live with it! The majority of people need their TSH lower than that. Even suppressed, even though they don't have Hashi's. But, yes, it's best suppressed when you have Hashi's because TSH stimulates the gland, which stimulates the immune attacks.

The morning serum cortisol test is not much use unless the result is extreme. Cortisol varies throughout the day. It could be good in the morning, but then very high in the afternoon, or something. With the 24 hour saliva test, you take a sample of your saliva four times throughout the day. That gives a clearer picture of the state of your adrenals.

marvalrus profile image
marvalrus in reply to greygoose

Here in the US, D3/K2 combination pills are commonly found. I have muscle pains when I take Vit D. My GP thought I was a hypochondriac when I told him. But lo and behold, when I told a chiropractor about it, just a couple years ago, he didn't laugh, he said Ohhh, I have a feeling you might benefit from taking K2 (MK-7)with it. I never heard of it, I tried it, and I could not believe it. I could handle it. I def have a problem w/Vit D, and others do,too. But K2 at MK-7 def helped me.

HASHISmom34 profile image
HASHISmom34 in reply to marvalrus

thank you for the advice. I am 2 in the US,

marvalrus profile image
marvalrus in reply to HASHISmom34

I noticed you said you were taking all this supplements that are 'highly nutritious' but what stuck out to me was Chlorella. Hashi's is an autoimmune problem, so taking things that rev the immune system is not going to help, and Chlorella, even though its touted are 'super-food' (for shrimps and crabs maybe) but it is not good for people w/autoimmune. Revving your immune system can make matters worse which might explain higher ab's? Not so sure about that, but I do know that people with auto-immune shouldn't try to rev their immune system. Maybe cut the Chlorella, spirulina, or any other supplement advertised to increase immunity. Lots of exercise can def exacerbate symptoms, so you might want to just take it easy for a while, esp if you're having joint pains.

greygoose profile image
greygoose in reply to marvalrus

Missed that one! lol

HASHISmom34 profile image
HASHISmom34 in reply to marvalrus

never heard of that. interesting.

Eddie83 profile image
Eddie83

FT4 doesn't have to be at top of range, however, FT3 does need to be between mid- and top-range. Did you have the full panel TSH/FT3/FT4/rT3/TPOAb/TGAb? If you haven't been able to lower your Hashi's antibodies (TPO and TG), you may find that it's hard to find the right dose.

Don't depend on an endo being any better than your GP. Many endos treat mostly diabetes, doing thyroid correctly is beyond them.

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

follow me and read my comments earlier because it was a huge paragraph i wrote about my labs. otherwise i will retype it ;later when i have time. Thank you

Eddie83 profile image
Eddie83 in reply to HASHISmom34

I missed much of your text. Your FT4 should be higher, if you can tolerate more T4. (I cannot, I have to keep mine near range bottom.) But FT3=2.7 pg/ml is too low. My lab now uses a range of 2.77-5.27 and you should be in the middle of that, or higher. That is, in the 4-5.27 range.

What have you done so far to get those antibodies down? Gluten was the major trigger for me. However I am now on many nutritional supplements; for instance a trace mineral that includes selenium req'd for doing T4->T3 conversion. Have you supplemented all your B vitamins, D3, iron, etc.? In addition to traditional antioxidants like C, I've found that a Turmeric tincture (one dropper per day) seems to have an inflammation-damping effect. There are a boatload of chemicals that provoke thyroid antibodies, e.g. artificial sweeteners, PBDE, perchlorates. It is a Herculean job (sometimes impossible) to get all this junk out of your life. Also (esp. while hypothyroid/low metabolism) mercury or lead in the body may be a problem.

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

I knew all of this Eddie83. Than kyou for the reply. I did not know about the T3 level. Thanks. I cut out all caffeine, sugar, alcohol and processed crap luckily a long time ago. Gluten and dairy are my next step. What is Turmeric Tincture? I did not start on turmeric yet. I am on lots of supplements and vitamins now unfortunately because of my condition. I have multiple auto immune. Not only selenium is crucial for us thyroid patients but zinc and copper as well.

Eddie83 profile image
Eddie83 in reply to HASHISmom34

High probability that Cytomel would benefit you.

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

eddie i will respond to this later. busy right now, but i will fill you in.

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

yes i have had a full panel done a few times since diagnoses. I need to stop antibodies from growing. My T4 & T3 in almost 6 months hasn't budged!

Fr23 profile image
Fr23

I have Hashi's.After 7 miserable years on Levothyroxine with aches,pains,acne and 2 stone weight gain etc etc, I have taken NDT for 1 year now,and am slowly returning to "me" before Hashi's.I follow a wheat and gluten free diet,take B12,D,Ferritin,Folate,Zinc and Selenium supplements.Give it a try,you won't regret it,I promise you.

HASHISmom34 profile image
HASHISmom34 in reply to Fr23

I am going to try the gluten free trick, i know that is a major cause of flare ups. I am also going to try dairy free as i have major food sensitivies. Thank you for your response. I take Omega 3s, Magnesium citrate, High potency Vit D3, a multi vit/mineral that has high amounts of B complex, just started an iron with added folic acid, C for absorption and B12. Thinking of grabbing for some selenium and turmeric the last few weeks, seeing how iron does. I really think i need a T3......... ferritin is separate FROM iron right? because both of mine were low.

Eddie83 profile image
Eddie83 in reply to HASHISmom34

If you are gluten sensitive and it has damaged your gut, and you stay off gluten for a long time, there is a possibility that one or more of your other food sensitivities will go away. After I got off gluten and stayed off several years, my sensitivity to dairy went away - although I now use almost no dairy, other than fermented.

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

I never knew that. I am going to try and enjoy my Summer but then do my trials to see how i do. and you mean kefir for the fermented right? i use that. I changed over to almond milk yrs ago and hardly ever eat ice cream, but cheese is my down fall lol

Eddie83 profile image
Eddie83 in reply to HASHISmom34

Yes, kefir. Usually use the Green Valley or Wallaby organic plain varieties, these are fermented with 12 strains. Cheese is a universal downfall 😄

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

I drink kefir and kombucha for gut health

Fr23 profile image
Fr23

I have read that most people with Hashi's do better on NDT.You are in the USA? If so you should be able to get NDT far more easily than here in the UK.I tried T4 (Levothyroxine) ,too many binders and fillers I was intolerant to.I tried adding T3 ,too many binders and fillers in.NDT has all the components a "normal"thyroid produces,namely T1,T2,T3,T4 and calcitonin,and can really make you feel great.

HASHISmom34 profile image
HASHISmom34 in reply to Fr23

actually Fr23, It isn't too easy getting that here a lot of times either. My friend had a hard time plus a lot of ends won't talk about it.

Eddie83 profile image
Eddie83 in reply to HASHISmom34

There is lots of self-treatment happening on this board. Many get T3 via mail from Greece, where no prescription is required. Those U.S. jerk endos would put T3 on Schedule 1 if they could get away with it. 😠

HASHISmom34 profile image
HASHISmom34

so many drs suck!!! i know there are some good, but honestly what these jerks put unpeople through is horrible! I was misdiagnosed for years. I was told i had anxiety, depression, panic disorder oh maybe bipolar mood disorder, something wrong with my heart and the list goes on and on. No one would listen to me and kept pushing me out the door or sending me to someone else. writing scripts i didn't need and not testing me for anything or not for what i really need to be looked at with. Now that i live in Buffalo, ny things have gotten a little better because the medical community is better. Still not great though. They think you just take hormone replacement T4 and you are magically better. And what do you mean about getting T3 from other countries?

marvalrus profile image
marvalrus in reply to HASHISmom34

You can by NatureThroid online. Very easily. It is the real McCoy. I have low cortisol issues, I tried it, and I just could not tolerate it. I was dizzy the entire time. I do think if my adrenal was not sluggish it would've been great for me. I felt pretty good during the first week, then the dizzies hit and never stopped. Even a little sliver of a 1/4 grain brought on the dizzy feeling. If your cortisol is normal, might be worth a shot trying.

HASHISmom34 profile image
HASHISmom34 in reply to marvalrus

I heard from one of my brothers that adrenal issues can be helped with adaptogen herbs like ashawagandha for example.

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