Hi Friends,
I've been taking the Levothyroxine for 3 weeks. Was tested this week for new TSH levels, antibodies, free t3 and free t4.
TSH is now 16 and a bit (down from 38)
T3 is 1.95 (ref 2 to 4.4)
T4 is .92 (ref .93 to 1.7)
Thyroid Peroxidase AB is 595 (ref 0 to 34)
Thyroglobulin is 85.4 (ref .0 to .9)
Yeah so I'm trying to stay peaceful....Wait out the weekend til I can talk to my GP.
Any tips or info or links would be awesome. I'm not thinking very straight lol. Be well, J
3 weeks is too soon to test. It takes at least 6 weeks for the levo to be fully processed by your body. Your TSH could still go down a bit in the next three weeks, and your T4/T3 rise a little - by the way, are they Free T4 and T3?
You have high antibodies, which mean that you have Hashi's, but so do millions of other people. 
It's nothing to be scared of.
How much levo were you started on? 50 mcg? Hormones need to be started low and increased slowly, so the normal starter dose is 50 mcg, retest at six weeks, and increase of 25 mcg. And, that protocol is repeated until all your symptoms have gone and you feel well. It will take time, but you will get there. So, don't worry.
Thanks, grey, for the calm-down!! The medicine was indeed started at 50 mcg. And yes the t3 and t4 were "free". I need to learn what that means- maybe it means available. Btw, I saw a person online with a thyroid peroxidase of 2000!! Gave me some perspective.
I've noticed a lot of people on here are really serious about certain vitamins and minerals, so I'm working on that, too- D3; magnesium; iron; selenium; b12; omega 3s; potassium; calcium. I started with the vitamins bc I'm having so much weakness and pain in my muscles. And problems breathing.
Can a person really just keep getting sicker even though they are on the levothyroxine?
Here's hoping for a joy-filled day, J🙏
Well, at least you were started on the right dose. Which is good.
Yes, Free does mean available. There are two types of thyroid hormone: Free and Bound. The Bound is attached to a carrier protein, so cannot get into the cells. It's the Free the most important because that can get into the cells and be used by the body. So, that is the most important test to do.
As for the antibodies, they fluctuate. But, it doesn't mean anything. Having a reading of 2000 is no worse than having a reading of just over-range. They are both positive and both mean you have Hashi's. But, Hashi's is just Hashi's, there are not degrees of severity indicated by the antibody count, that's not how it works. So, 2000 is no worse than 595, and 595 is no better than 2000. They're both just positive. That's all.
I'm afraid you've got it a bit wrong about vitamins and minerals, it's got nothing to do with being serious. People take them because they've had them tested and found to be deficient. You shouldn't take anything unless you've been tested and found to need them - with the possible exception of vit C and magnesium. So, if you've not had them tested, I think you should stop, wait a while, and then get tested. Just take what you need. Some of them can be toxic if levels get too high.
Taking levo is not a cure. It is thyroid hormone replacement. So, yes, you can still keep getting sicker even though you're taking levo, if you're not taking enough. But, with hormones, you need to start low, and increase slowly, as I explained above. There will come a point when you stop getting sicker and start getting better. But, for the moment, you're just on a starter dose and it's not enough. You do have to be patient, I'm afraid.
Thanks so much for your explanations, greygoose!!
I hope the information will start building up in my brain 😀. I've become so slow-minded with the hypothyroidism I almost can't recognize myself. My takeways from your response:
1. Free/available t4 and t3 are important lab numbers to keep an eye on.
2. Stop/be very conservative with supplements unless you know they are needed.
3. The number of antibodies is irrelevant once you are outside the range.
4. You can still get sicker as the doc slowly works to get you on the right dose of levothyroxine.
I just want to share with you that when I went to check my email today, there were so many responses that I started crying. It is so amazing to be welcomed into a community of folks with similar issues who can show me the ropes.
I feel beyond blessed. I know it'll take a while to move through all the responses, but that is expected, right? Nobody'll judge me or feel offended bc I didn't write back fast enough I hope? Anywho. Just too, too awesome!!
Be well, J
1. Yes.
2. I mean stop. Don't take anything except vit C or magnesium without getting that vitamin or mineral tested.
3. That's right.
4. Yes.
You are very welcome to all the help you get, from everybody. And you must feel free to ask all the questions you need to ask. And, nobody will be offended if you take your time getting back to them. But, it is important to answer the question they ask - when you can - because it's the little details that can make all the difference. Just one little thing can make someone go 'Ah ha! I know what that is!', something that you might not have thought important. So, do get back to them in your own time.
Hi greygoose, Thanks for the encouragement!!
One thing has been cropping up, about the thyroid getting, er, hmmm. Ok. I think what people are saying is that the actual thyroid gland itself gets messed up/damaged/confused/dysfunctional when the levothyroxine medicine is being taken? So that's why you get sicker when you first start taking the medicine? I'm not being very clear, I'm afraid, but I don't understand exactly what it is I'm asking about.
Hope you understand!!
Thanks and be well, J
Yes, I understand, and no, that's not how it works.
Taking levo, or any other form of thyroid hormone replacement, does not mess up or damage or confuse your thyroid. It doesn't directly affect the thyroid in any way. However, if you start on too low a dose, the thyroid may stop producing what little hormone it is managing to produce, and the low dose may not be enough to replace it, therefore you get worse instead of better. Which is why we are against doctors that start people on only 25 mcg levo instead of 50. You started on 50, so that is not your case.
And, if - god forbid - the apocalypse arrived tomorrow, and you couldn't get hold of your levo, you thyroid would just go back to making the amount of hormone it was making before you started taking levo.
It is not levo that is destroying your thyroid, it is the Hashi's disease - your own immune system. There is no danger in taking levo.
Hi,
Read the Hashimoto Protocol by Izabella Wentz. There are loads of fantastic books and websites but this is a good place to start in your journey of recovery as a lot of useful information.
Diet is key in getting your antibodies down
Also make sure your B12, cut D. folate and ferritin are at optimal levels as often we are deficient.
Try not to worry as this will only stress your adrenals which will be struggling anyway. Easy to say I know but you’re on the right path as have discovered this website!
Thanks for writing, Katepots 😊 If I get my antibodies down via diet, I'll be protecting my thyroid from additional attacks? Is that the idea? I am just heading off now to check out the Wentz book. People are mentioning her quite a bit. Sounds like a good place to start. Take good care, J
No, you won't be protecting your thyroid from additional attacks. That is a myth. It's not the TPO/Tg antibodies that do the attacking, so reducing them will not change the severity of your Hashi's. Antibodies just come along after the attack and clean up the blood. But you can have Hashi's without ever having high levels of antibodies, so getting rid of antibodies will not stop the progression of the disease.
I believe that by cutting gluten and casein that you stop the body from mistakenly attacking the thyroid. Gluten and casein have a very similar protein make up to the thyroid so when they are infested and you have leaky gut(very common with Hashimoto’s) they leak into your blood stream. The body sees foreign invaders and sends T cells to attack but as the thyroid looks like these invaders it gets attacked too. Molecular mimicry.
By healing my gut with probiotics, bone broth etc my antibodies have reduced and my goitre almost disappeared so I don’t think this is coincidence.
I also have of course addressed vitamin deficiencies ie B12 and cut D and checked folate and ferritin are optimal.
Also I have T4 to T3 conversion issues so I take NDT rather that LT4 only which has helped massively.
If after 6 months to a year you are still feeling thyroid symptoms it is then beneficial to get your T3 (the active thyroid hormone) levels tested. So many of us do not convert adequately and then will never feel well on LT4 only.
Hopefully you won’t be one of those!
There’s lots you can do to feel better.
Hi Katepots 😊 I hope I didn't already ask this, but what is "cut D"? Thanks, J
😂 sorry that should read vit D!
You may not realise that you can edit any posts or responses you have made here.
HealthUnlocked have produced a simple demonstration of how to do this. You can find this here:
support.healthunlocked.com/...
I am pointing this out purely to ensure that you know your options.
(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)
Also don't mix/ take vitamins with your thyroid drugs. Read advice on here about timings. Definitely get them all tested as grey goose said.
Thank you, Marymary 😊 Yes I feel especially confused about iron. I am just diagnosed with anemia as well as the hypothyroid, but I have no iron supplements nor any instructions yet as to how to proceed. I did already have low vitamin D, so I keep taking that. I take it about 5 hours after the levothyroxine. But anyway based on advice here I need to go very carefully with supplements.
I have a technical question. Is there a way to see responses here more fluidly, or do I need to continually jump about from my email or notification list?
Be well, J
drknews.com
Chriskresser.com
Hypothyroidism.com
Thyroidpharmacist.com
Done good websites.
The Immune System Recovery Plan book by Susan Blum MD is also good.
When I started on thyroxine the pattern, at least for the first few increases was similar each time. After a week or so I began to feel quite a bit better. Then I stayed more or less the same for maybe the next few weeks then gradually started to feel worse again. Each increase made the feeling worse stage a bit better. I still haven't quite got the ideal, maybe will end up needing added T3, (for many people that's another story! 
), but I'm grateful to be able to function fairly normally again.
Starting to feel worse after about 5 or 6 weeks seems normal. Adding thyroxine tends to suppress your natural thyroid production, so at the beginning you may even feel worse than before starting thyroxine. But don't give up, hang on in there
Your test results show that you have autoimmune thyroiditis, aka Hashimotos. Since autoimmunity is present, and you are feeling so awful, I would recommend getting a full rheumatological blood panel done. It’s quite possible that you have something else going on. I have lupus (SLE) and Sjogrens Syndrome in addition to be hypothyroid.
So, IMHO, you should get referred to a rheumatologist as well as endocrinologist (who is experienced in treating Hashimotos). I’m in the northeast (Massachusetts) and see a functional medicine doctor who treats my hypothyroidism. She was mentored by Dr. Kenneth Blanchard and took over his practice when he passed away. I like the functional medicine approach to treatment. It is more open minded than conventional medicine. I also have a rheumatologist.
Another thing to consider is, are you entering menopause? Perimenopause/menopause really messed with my system and when sex hormones are out of whack, thyroid hormones are as well.
Hi milkwoman 😊
I believe my smoking sent me through menopause early.
Such a weird thing to watch myself write, and in public no less 🤣
Anywho. My doctor had told me she believed the hypothyroid is autoimmune but never once used the term Hashimoto's, which I find odd. Can hypothyroidism be autoimmune and not be Hashimoto's?
My blood tests aren't showing signs of RA, lupus, Sjogren's. No lyme's disease either. Did show high haptoglobin, which I guess is general inflammatory maybe. And low red blood cells maybe- it was a 4 letter thing like mhbc or something. My memory is terrible. Sorry.
Thanks for the pointers on doctors. I have to get these things straightened out. I'm going to look up who Kenneth Blanchard is. I imagine he's an expert in the field? How is it to handle several diagnoses at once?
Ok thanks again & be well, J
Dr. Blanchard was a pioneer in treating hypothyroidism based upon symptoms. He wrote two books on the subject. He was truly a caring physician who dedicated his life to helping patients get their lives back. I will forever be indebted to him and feel blessed to have been his patient. It was devastating when he passed suddenly in April 2017. I now see his successor.
Are you on any HRT?
Do you have copies of all your blood test results? If not, it is imperative you get them and look at all the tests and the results as docs are notorious for brushing off things. I got my Sjogrens DX after I pointed out that I had positive auto antibodies.
As far as I know, autoimmune thyroiditis is either Hashimotos (hypothyroidism) or Graves (hyperthyroidism). You are hypo so that is Hashimotos.
I don’t know much about haptoglobin but it appears to indicate inflammation when it is elevated.
It is very difficult having so many things “wrong” with me and knowing what is causing what. Also, I am very sensitive to medications, especially the filler ingredients (learned that the hard way), so that complicates things even more.
You’ve only been on Levo for a few weeks so things should improve with time and you should be tested again at the 6 week mark and dose increased slightly. (What dose were you started on? I hope it wasn’t too high as that can shock your system and cause you to feel horrible as your body adjusts). Dosage increases will continue until you reach optimal levels. Right now your FT4 is below range (indicating you are undermedicated) so you will definitely need more Levo. It’s a gradual process to get to the right dosage level - can’t do this too quickly. To feel well you will want FT4 to be above mid-range.
Hugs.
Hi milkwoman 😊
I am slowly wending my way back through posts people have written to see what I missed the first time through. Thanks for being patient- you wrote a lot!!
I'm sorry you lost Dr. Blanchard so suddenly in 2017. He sounds like he was wonderful. Who is his successor? Is the care still working for you?
I noticed you asked about HRT. I am not on that. Why do you ask?
Yes I was started on 50mcg levo. In about 2 weeks they'll run another test and probably move it to 75mcg.
Meanwhile I'm attempting to see various specialists bc my breathing and walking problems are getting worse. I just ordered a rollator/wheelchair combo to help me get around, and a pulse oxymeter to see what's going on with my breathlessness. It was really weird and scary to purchase the walker/wheelchair.
Anywho. Today is my Birthday. I've been alone all day and I'm housebound. Would it be terribly self-centered of me to announce it? I just want loads of people to send me air hugs and pray for my breathing to improve 🙏
Hope your day has been a good one!!
Be well, J
First of all, Happy Belated Birthday! So sorry you are alone and housebound on your special day. Yes, you most certainly could announce it here - very nice and supportive group. I know you would receive loads of well wishes!!
As luck would have it, someone just posted an article re: menopause and hypothyroidism.
healthunlocked.com/thyroidu...
It explains things much better than I ever could! All of our hormones work in conjunction with each other and when sex hormones are out of whack (as they would be in menopause), it effects our thyroid hormones. I’m on a transdermal progesterone bi-est cream which, as the name implies, is a combination of progesterone and two types of estrogen: estriol and estradiol. It took awhile to get the right combo and dosage but I wouldn’t be without it. (I have used estrogen patches and oral progesterone but we couldn’t stop breakthrough bleeding and I also experienced unpleasant side effects from the oral meds). My GYN prescribes the cream and a local compounding pharmacy makes it for me.
Please PM me for info on the Doctor I now see.
Soooo sorry you are feeling so poorly. You definitely need to get your walking and breathing issues sorted out. You had these prior to starting Levo? What brand of Levo are you taking? I couldn’t tolerate any generic brands due to the fillers. They can wreak all sorts of havoc.
Have you ever been fully tested for autoantibodies? Do you have copies of all your blood tests? I suspect you may have other autoimmunity things going on aside from Hashimotos. Are you gluten free? Many Hashi sufferers here have noted that going gluten free helped them tremendously.
Have you been tested for B12 deficiency? How’s your Vit D, iron and ferritin levels?
At this point it might be better to start a new thread re: the breathlessness and walking issues. No one else is reading these responses and there are far more experienced folks out there!
~Hugs~
Happy Birthday Jallan. Sending you air hugs and praying your breathing is better. Jx
Thyroid urine test
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