I just happened on this site, but everyone seems so dedicated to educating and supporting each other I decided to stay. I have learned so much from your posts 😊
I should try to find something in the US, but I'm just lost right now. I had a blood test with a TSH of over 38. I have so many symptoms they are hard to sort out.
Anyway. I am on 50 mcg generic levothyroxine since Feb 2, 2019. I know it takes weeks for the medicine to register on the blood tests, but I've been getting sicker fast. For example: increasing trouble breathing, increasing trouble walking up stairs, super freezing cold that takes all day to recover from, and lots of pain all over my body. Oh and I have almost no short term memory left.
I'm a 51yo female. I got a new PCP. She's the one that figured out the thyroid issue. The first week. But she gets offended when I try to advocate for myself. Anywho, I'm afraid to say much of anything to her now. But I also am afraid to switch to another PCP bc I don't want to be seen as a "doctor jumper." That's really frowned on here. They stop taking you seriously.
Btw has anyone heard of people becoming hypothyroid when they quit smoking? I stopped smoking last August, and have gotten terribly sick since then. Plus when I stopped smoking for a half year in 2009, the same stuff happened to me, but nobody tested my thyroid back then.
I read a science article that showed experimental evidence that smokers can be hyperthyroid without knowing it and then fall into severe hypothyroidism when they stop smoking. That is, this happens to a significant percentage of smokers who quit.
Ok thanks for sharing your time and knowledge with a yank newbie, J
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Thx so much for the great links!! The first time I quit and got so sick, I did go back to smoking. But, God willing, not this time. I'll take the messed-up thyroid, eh?
Rather than saying that smoking covers up hypothyroidism, I would say that the nicotine you get from smoking effectively treats some of the symptoms of hypothyroidism. To wit, nicotine improves mood, cognition, and metabolism. Unfortunately, the delivery system (smoking) is very damaging to other aspects of your health such as your cardiovascular system and breathing.
Thanks for your clarity, vocalEK. Yes... I have an appointment with a cardiologist this coming week for those very issues. More to worry about!! But having answer will really help, even if the answers are unpleasant. At least I can get moving in the right direction. Be well, J
Sorry, but that study doesn't make sense. Reducing antibodies by whatever means, does not mean you have reduced the Hashi's. It's not the TPO and Tg antibodies that do the attacking, they just clean up afterwards. So, getting rid of them would not get rid of the Hashi's, which is what they seem to be implying.
greygoose, can you point me to an article that discusses what does the attacking? I was under the impression that the antibodies are responsible for the attacking and that the lower we get our antibodies, the better off we'll be. I hope I'm not the only one that doesn't get this... And thx in advance.
No, you're certainly not the only one. Most people think it's the antibodies that attack. The antibodies are there because traces of TPO and Tg leak into the blood during the attack, and the antibodies come along to clean them up. I have an article on that subject somewhere, I'll see if I can find it, later.
OT, but interested as I read recently (but cannot find source right now) that the antibodies (anti-TPO) somehow interfere with the T4 to T3 conversion which would be the reason why many with Hashi's are poor converters (which I certainly am) and need additional T3. Does that make sense to you given what you just wrote?
I must say, I've never heard that. I would be interested to read the article. But, I cannot see how they would. I have Hashi's, but my conversion was very good - one swallow doesn't make a summer, of course, but I can't see how the antibodies would have anything to do with conversion. The antibodies are in the blood. Conversion takes place in the liver and peripheral cells. But, I'm interested to know more.
I don't have time to read all through it at the moment, but the little I read didn't impress.
Is this the paragraph you're talking about?
We measure two antibodies. Anti-thyroglobulin (matrix of the thyroid gland) and TPO (thyroid peroxidase). TPO is essential to the conversion of T4 to T3. Either of these can rise with Hashimoto’s. It is more common to see a rise in the TPO. This condition usually results in Hypothyroidism (under active thyroid) by interfering with the normal conversions.
To understand that paragraph, we have to distinguish between TPO (thyroid peroxidase) and TPOab (thyroid peroxidase antibodies) It is the TPO itself that is essential to conversion, and rises when you have Hashi's. The TPOab also rise, but they have nothing to do with conversion.
Glancing through what he writes about rT3, this article is full of errors, and really not to be taken too seriously. I'll have a further look at it later.
Thanks greygoose. Had to wait till my brain worked to read it. I've worked towards getting my antibodies down and now they are "in range". Maybe I'm in remission?
No. That's exactly what that article explains. The antibodies have absolutely nothing to do with the level of your Hashi's. Antibodies will go down if there hasn't been an attack for a while. But 'working towards getting antibodies down' isn't going to have any effect on your Hashi's. That's what the article's all about. Lowering antibodies is not going to lower Hashi's. Sorry.
That article was really interesting. The anti-inflammatory action meshes with some articles I read about how smoking can mask inflammatory gum disease. Like it drives dentists nuts because the gums are really sick, but they don't look sick.
It was hard to leave Mitteldorf's blog to come back here to post 🤣 He is a good writer, and there are so many interesting topics he's written about!! I'm going to have to ration myself. Just like for here lol. I put an app on my phone that tells me when I should think about giving it a rest. It's like having a robot nanny looking over your shoulder 😎
Be well, J
Are you in an HMO (managed care) or a PPO? Do you need a referral to see an endocrinologist? While some Americans pay quite a bit for health insurance, if you are in the right plan, you just make appointments with specialists as desired.
I can’t speak to your particular issue, just the concept of seeing an endocrinologist in the US depending on your insurance and location.
I think I have a 'combo' HMO, which is more restricting than some insurances, but is one that allows me to see a specialist without the referral. Just might cost more.
Some clinics won't see you without a referral, even if the insurance doesn't require it. But it sounds like you're asking because you think I might want to consider a specialist?
I am intimidated by my GP. I know I should just go where I can get good care. But I'm concerned that if I make her mad, she may make other healthcare things more difficult.
I don't know. Maybe I'm making her more powerful in my mind than she really is. I'm not entirely sure how to evaluate that, like what questions to ask myself. My mind is so affected by the hypothyroidism it's almost like being a different person.
I'm so glad I found this forum. Now that I am reading other people's thoughts, and trying to
clarify my own thoughts to communicate via writing, I am seeing how many questions I have. And seeing how confused I am. And how many feelings are rolling around inside me affecting things as well.
Which reminds me- I've observed that even minor stress now makes me very ill, very fast. Is that a normal thing with the thyroid? Does it use up the thyroid hormone or something?
That post turned out longer than I expected!! Thanks for your time and thoughts, J
You know anxiety and depression are common hypothyroid symptoms right? Seems like you’re in a catch 22 at the moment. Do you think you’ll realistically be refused treatment or is that possibly your perception? Wishing you well. You did the right thing to post here👍👍
Yeah I'm definitely concerned about how to ascertain if I am perceiving things accurately. I just reread my post and it seems rambling and upset. Which is how I felt when I wrote it. Oh, well.
I don't recall thinking I'd be refused care, though? I'm looking back over the post to try and see it. I'm probably missing something. It's late here lol!!
Thanks for your honest feedback and encouragement. Be well, J
When I met my PCP, I was already seeing several specialists at a university facility in a nearby state. I see her for routine things or when I can’t get to one particular specialist. Pleasant office but they are reluctant to wtite the Rx for the quantity or strength that I need. Am very fortunate to be on Medicare with an excellent supplemental ins. plan.
I definitely prefer medical school professors because they are very knowledgeable. Best wishes. You should be able to research medical schools in your state or an adjacent one.
Wanted to let you know I got in to see a specialist at Tufts yesterday. It was a minor miracle. I had called and was booked in yesterday for an appointment in May, but they got a cancellation and called me back for a same day 2pm appointment 😊
I'm a Brit living in the USA. Unfortunately American Endocrinologists are just as useless as Brit ones, in my humble opinion.
I've fired two endos. I learned everything about Hashimoto's from this site and the wonderful admin. They actually gave me my life back. Right now I'm seeing a primary who also has Hashimoto's and is familiar with Izabela Wentz ( buy her book to learn about your condition). There's a US Facebook group called Hashimoto's 411. (There's 70k members so when you ask for advice your going to get a lot of different advice. Also Hashimoto's 411 really strongly promotes the AIP diet. ) They have great "files" which show you what tests to ask your doctor for. And they also have a member created list of recommended doctors. Hopefully there's one in your area. What area do you live in?
Thanks Chickenlady!! I will check out Hashimotos 411. I hope it is as peaceful and supportive as Thyroid UK 😊!! Are you also doing that AIP diet?
A member-created list of doctors sounds incredibly helpful. I am in the Northeast and was considering trying to go to Mass General or Tufts in Boston. Maybe just stay in a hotel overnight or something. Probably a crazy idea.
Ok I'm going to go see about that Wentz book and the Facebook group. Thanks again, Chickenlady. Be well, J
I replied lower down. But when I see your considering Mass I wanted to say they have an excellent Endo department. My son has been part of studies for his type of chromosome variation. One endo there came up with idea for him to take 7 Synthroid one time a week instead of daily. It works very well for him. His levels have been normal since then.
Hi Raw, I'm really glad you wrote up here as well. Could you please tell me more? Like how your son found out about his chromosomes? And about the "7 synthroid" once a week? Is that 7 mcg? I'm not sure what else to ask about Mass General etc., but you've definitely got my attention. Thanks, J
My son is 33. He was born without a thyroid. Some sort of thyroid abnormality occurs in 1 and 4000 births. That is why it is a state mandated test along with several other test when the heal prick test is done shortly after birth. So by time he was 4 weeks old he was taking Synthroid.
He has multiple problems that come and go. One is malabsorption in his stomach. So it was the idea of an endocrinologist to take all 7 200 mcg. Once per week in the early morning then not eat or take any other medication for 4 hours. His levels have been normal since then.
When his TSH was over 100, maybe even 200. I cannot remember. He received IV thyroid medication for 24 hours.
He has a variation of Klinefelters syndrome. He has 48,xxxy. He graduated high school, drives, fascinated with abstract painting, fishing and sports. He lives At home. He is a bit different but very out going.
After joining this group and reading so much about all the issues of T4 and T3 I plan to ask his endo many questions at his next appointment. The wealth of knowledge with the members is impressive. I have questions about my own situation. I actually did not think of the connection of my other autoimmune disorders to the Hashimitos. I have very little thyroid left myself. I was diagnosed 41 years ago.
I forgot to mention the Mass Connection. The have a Klinefelters department. So he was seen by that department. I brought up the thyroid level issues in an appointment and the dosing change was mentioned. The endo called our endo and it was decided to try it.
Wow, Raw. It is so amazing that your son has survived these health challenges from earliest babyhood!! So he takes all his doses for the entire week at once, and it keeps him well? Crazy. Our bodies are so individual, so unique. I'm glad he's enjoying his life 😊
Yeah it makes sense that autoimmune things would be related. Do you have a bunch of them? I read yesterday that once you get one, like thyroid, it opens the door, or rather makes it very _likely_, that you will then get other autoimmune disorders/diseases.
I'm really thinking that it would be smart to head to Mass General/ Tufts thyroid centers once I am well enough to be making the drive.
I did buy the Wentz book (Hashimotos Protocol) yesterday but I feel sort of overwhelmed by it 😧🤣 but, inspired by her, I did make a giant spinach (& fruit) blender drink that was my own concoction!
It’s overwhelming to me as well. I feel like I have been in the dark ages not knowing so much about the thyroid and medication for the lack of one. You might have a long wait to get in these specialty departments so I would call to see how you get in and how soon you would be seen. It does sound like your GP is following a safe protocol.
Hi Raw 😃 I thought I already posted here earlier today, so sorry if I am somehow repeating. Anywho, here's part of what I had written, plus new developments:
Guess what?? I called today to get a specialist appointment at Tufts with a specific person I had picked. But expecting in the future like you said. There were no openings til May, so I booked one for then.
About 20 minutes later they called back and asked whether I could make it there by 2pm today. So I went to Tufts _today_ and saw a specialist 😃
The building itself was oddly dilapidated, but the doctor was an MD/PhD and really took his time with the appointment. I'm satisfied with his plan, though I need to get help with my breathing problems which are still worsening.
He said if it is the Hashimoto's, it could be because my diaphragm is struggling to operate itself without enough thyroid. If it's the Hashimoto's, I wonder if getting extra oxygen would help? Did you ever hear of a person with hypothyroidism having to do that while they get there thyroid meds right?
Thanks again for pushing me on the specialist front!! Be well, J
WOW! This is such good news for you. A few years ago I experienced a Thyroid storm. iPad problems swallowing and breathing. My antibodies were very high. My PCP recognized the symptoms.
I had no idea that could happen when I have been hypo since 1978. The endo said it’s Hashimitos and it can happen even on medication and with a tiny thyroid. It was weird.
I’m glad you are seeing a good endo. I see a vascular surgeon. He is a top TOS specialist yet his office is very dated, no screens, tiny room, and he scribbles notes on a little piece of paper so it’s the doctor your seeing not the office!
I look forward to hearing about how he treats you. You might also have asthma. I have adult on set asthma. It’s controlled with QVar.
Your story reminds me of my journey with Levothyroxine. I am also in the US (Philadelphia suburbs). I was diagnosed with Hashimoto’s in my early twenties. I was prescribed Synthroid back then and while it got my levels in check, I developed traveling arthritis, gout, depression, etc. it was by accident that I heard about Wilson’s syndrome in my late 30s and it treats symptoms based on basal body temperature. But it used T3 (Liothyronine) and this is when I started feeling better. Fast forward, I’m 57 and have been well on T3 only for some 15 years, although it’s been a battle convincing my endocrinologist that T4 makes me ill. So after constant pressure from my doc for many years, I relented and switched to T4 (Tirosint) in addition to T3 (Cytomel.) Almost instantly I got all the arthritis pains back and excruciating hip pain to the point I could hardly walk. I suffered for 9 months and doc switched me back to T3 only. It’s been about 3-4 weeks but the pains are leaving, the mental fog and depression are lifting, and I am slowly recovering. I know I have a lot of gene variants in the thyroid area, so maybe this is why I cannot tolerate T4. Whatever, I hope you’ll keep this in the back of your mind, that not everyone does well on Levothyroxine. For me, it is like poison!
I wish you luck in your personal journey and hope you find a doc that is open minded!
I too had developed excruciating feet,ankle,knee and hip pains ...which started when I was on synthyroid only...not much better even though Im on Armour Thyroid now.
When the doc added T4 to my T3 regimen, that’s when my pains started. I gave it a good 8 months with fine-tuning of doses till the numbers looked just right to the doc, yet I was in so much pain. Seems for me I just can’t tolerate the T4. I did so well on T3 only, and I’ve gotten back on just the T3 and already after 3/4 weeks without the T4 I feel SO much better.
Your story is nuts, Kellykitty!! It sounds so hard to battle ongoing pressure from a doctor. I will definitely keep it in mind that I could be sensitive to the levothyroxine.
I'm finding that one of the biggest challenges with hypothyroidism is trying to be patient, and not giving in to frustration and fear. Maybe that's the point!! The development of advanced-level patience!!
I just wanted to say that I am in NY and had similar issues when I started medication. I saw a functional doc and pay out of pocket but it’s 100% worth it. When I started on thyroid meds it was a low dose like you’re on and my hair started falling out, my body was as stiff as the tin man and the brain fog was embarrassing. It took 2 solid months on the same consistent dose before my symptoms improved greatly. I think you’re just starting on this and trust me, too high a dose can have the same effects so it’s possible that your doc is just starting low and will increase over time. I don’t take levo, I take NP thyroid and t3 but it took a while to get there. I was on a good dose and doing well when my doc decided to experiment and lower it. I immediately felt like crap and within the first week had all of the symptoms back. Thankfully I was only on the lower dose for about 10 days before getting back to the good dose but the symptoms took about an additional month to stop. It’s just slow. If you can see a functional doc, it’s your best bet. Endos here are a complete waste of time and a lot of G.P’s just aren’t educated enough on thyroid issues. I hope that’s helpful and makes you feel a little better. Oh, one last thing, I see the functional doc in addition to my other doctors and since it’s not covered by insurance, they wouldn’t know if I didn’t tell them. I do tell them, but if you’re worried about looking like your doctor shopping then you could always keep it to yourself. My primary doc was not ok with it, he said my thyroid was fine and he didn’t agree with the functional doc. I switched and told the new doc what he said to gauge her response, telling her that I felt better and just needed a primary that would manage random checkups and the occasional illness and she was fine with it.
Wow. Hmmm. I can see I'm going to have to really think about this. And more than once. What you're advocating is very strategic. I like this approach. It is kind but does what needs to be done. Which is protect your health.
There is a functional doctor not far away. I was concerned "normal" doctors wouldn't listen to him. So I had sort of written that path off. I am reconsidering after reading your story.
I was thinking about going straight to a thyroid specialist at either Mass General or Tufts, since they both have Thyroid Centers (providing my insurance would cover it). I wonder if you know anyone who has done something like that? It's more travel than the functional doc or my GP, but might be really worth it.
I'm really glad you were able to get your health sorted out. Thanks for your story!! Be well, J
I am not in a position to offer advice, but I will say keep looking for a new doctor. My son experienced the same thing: dismissive, rude, arrogant, condescending, etc. It was discouraging and humiliating to be treated so poorly by physicians. Keep in mind, our son is a PhD student so he is no fool- yet, he was treated like an imbecile. He now has 2 new doctors, a family physician and endocrinologist. They are respectful and things are improving. Please don’t give up - trust your instinct- seek referrals. You are worth it!!
Hi Jallann, unfortunately it is quite common to feel worse when you first start Levothyroxine. This is because the low dose is enough to disrupt your own thyroid, but not really enough to start improving things.
The best practice is to have a new blood test in 6 weeks, and then adjust the dose. Often doctors will keep us waiting a bit longer than this, but you shouldn't be left hanging about on the starter dose for too long.
Everything with thyroid is slow, and with that high a TSH its possible you will need several 6 week waits and retests and adjustments to get the dose you need. With thyroid replacement its very important to be on exactly the right dose for you, not just any old dose.
I think at this point in the treatment its easy to become very discouraged by doctors, but unfortunately there is nothing more to be done, all you can do is wait it out. It takes roughly 6-months to a year to be where you need to be in terms of dose, even if you're one of the very lucky ones and everything goes smoothly.
I agree with others its very important to become knowledgeable about thyroid yourself, because doctors often know very very little and we need to double check and make sure we get the right treatment.
"...unfortunately it is quite common to feel worse when you first start Levothyroxine. This is because the low dose is enough to disrupt your own thyroid, but not really enough to start improving things."
Uh I hope this works. This is my first attempt at "copy and paste" response. Anywho.
So I am still struggling to understand this. Do you know of science articles or other things I could read?
I don't know if there would be any articles, although I am not good with collecting articles, there may be some somewhere. However, if you stay ane read the forum for long enough you will notice that it comes up often.
Maybe somewhere like Stop the Thyroid Madness website and book, or others like Paul Robinson's new book that talk about how to handle thyroid treatment right from the start will talk about it.
Unfortunately I'm not sure it's something people really know the exact mechanisms of, just a piece of knowledge gained by patient groups.
The important thing is just to hang in there and keep plugging away to get onto your optimal dose.
Thanks, SilverAvocado, I'll check "madness" & Robinson, and keep looking for posts.
Technical Q: How would I have made my quote of your post bold? Do I have to do it outside the healthunlocked site (as in copy the text, put it in a word document, bold it, copy it, then finally paste it back into healthunlocked reply)?
I think you can do it and that it means putting mark ups in the text - letters and punctuation marks before and after what you want to make bold.
But I may be mixing this up with another system. Healthunlocked in general doesn't have many features and isn't ideal for the purposes of the forum, so often things you cans do in other forums can't be done here!
There may be a stickied post by someone like Helvella or Red apple that can be found at the side or bottom of the page to explain these things. I'm on my phone so can't see those things!
I've never seen anyone cut and paste things into a comment they're replying to on this forum, either. Maybe because there isn't much function to support it!
You could go old school and mark the lines with a symbol like this:
>How would I have made my quote of your
>post bold
Although I think when you see my post it will lose the length of lines that I can see in my screen, so maybe it won't work!
You know what...even "technical" posts/replies that don't necessarily give the definitive "how-to" can add greatly to that feeling of being supported in this forum.
I'm not sure I'm being clear. Hmmm. What I mean is that part of the grace that comes from ThyroidUK is having so many caring people gather around you and take your questions and concerns seriously.
You took my question about bolding a quote seriously, then took the time to write a long answer. I'm not sure why it means so much to me, but I want to shout out a great big thanks!! Doesn't really matter if I ever figure out how to bold my quotes!!
I agree with SilverAvocado. It is a terribly slow process with thyroid replacement, especially since most docs are uninformed and rely mainly on TSH. I would add, though, that your mood and perception will improve when your dose starts getting more optimal. Thyroid hormone affects every cell in the body, including the brain. Take heart. Stay the course. Consider a functional doc. And know that it will get better. Continue to learn and advocate for yourself.
Cabro, you made me grin hugely with your comments on mood and perception. I really want and need my brain back!!!! I _will_ do my best to keep my chin up and to stay the course 😊 Be well, J
I'm in Massachusetts. Where are you? What's "doctor swap"? Just changing doctors, or something else?
Thanks and be well, J
Hi jallann
Congratulations on stopping smoking....awesome. I'm in the US and located in Northern VA and without a thyroid, why do you think it's frowned on in the U.S. to change Doctors? I change doctors I refuse to allow some stranger who has met me for 2 seconds tell me I'm fine when I feel like a truck ran over me ...this is my body and my choice to not feel horrible all the time.
I laughed out loud reading your post. I love your attitude. And thanks so much for congratulating me on my Clean Breathing!!!!!! It is a HUGE blessing to be a nonsmoker!! I wish I were a neversmoker, but hey! Good enough!!!!
I think I'm worried about changing doctors now because my brain is so fried. I've been sick for so long, and I didn't know what was going on with me. I thought I was maybe crazy or something. You know, like everything is psychosomatic bc they can't figure it out. So I stopped asking, stopped complaining. Add to that a feeling of general stupidity bc I forget so much, blah blah blah. I am whining now. Sorry.
I want to post what you wrote right over my sink so I can memorize it 💞 God bless, J
Not able to respond to the thyroid questions as I am just a newbie to this trial, but I am familiar with your fear of talking to your doctor about what you need. That is one place, in the past I could always go for help, but times seem to have changed as there no longer seems to be a profession that listens to the main character's views.
It saddens me as I do think if they listened they could do a better wholistic response to the patient needs. Time is money for them but if they really listened it might be more beneficial to all.
They failed me just this last week. Keep sending me a survey to speak of the visit but I would be fearful of speaking my mind.
i notice here it can be helpful to speak ones mind most of the time. Something we both need, it seems.
You are right. You have to use your words carefully with MD’s.
But that does not mean you just have to listen all the time. It is your health and that is important.
I have been a Thyroid patient for 45 years. I read and look up my own questions. That helps so you can have a better conversation with your doctor. That has help me a lot, with a better understand of the process!
I'll be brief after what everyone else has contributed. All of your symptoms are due to hypothyroidism. You can feel worse after being on Levothyroxine (LT4) if, like me, you have genetic polymorphisms (and there are many that have been identified) that result in poor conversion of the T4 to T3. If you think of LT4 as like your mail carrier's truck, full of mail, all of which is good and necessary to your life (no bills), then the T3 is your human carrier putting the mail into your hands, or into your mailbox. If you're not converting well, it's like having that white truck roaming the neighborhood but never leaving you the mail. When you don't convert well, it's like the mail carrier has a mental illness, and because you don't get your mail your own condition starts to get worse and worse. Meanwhile, the standard tests do not reveal if this is going on in your body.
You do need to be your own advocate, and sometimes you do need to fire an endocrinologist or two, (I have) but give this one a chance by asking about poor conversion and treatment with T3. If you sound educated and informed, and know how to push back gently, you might be able to nudge the doctor in the right direction.
You have started out with a very high TSH. That needs to come right down. A person on thyroid meds is looking for a TSH of 1 or below. And as others have said patients often feel worse before they feel better with the medication.
Don't worry about T3 or NDT at this point in time. The thing to do is be patient and gently urge your doctor to retest you every 6 weeks and adjust the dose at that point, then repeat. Do test for the vitamins and minerals someone has listed above. And come back here to a new post with your results and ask for advice.
This is very new for you. Keep it simple at this stage and have faith that Levothyroxine will help you. Many patients return to good health with it. Don't expect it to fail you. If, when that TSH gets into the reference range, you still don't feel improvement, that's the time to start looking into other types of thyroid medications.
Thank you Fancy Pants! You helped calm my mind in terms of thinking ahead already that T4 won't ne the answer. Perhaps it seems to "easy" after years of struggle with no diagnosis. You made my day!
Hello I imagine your dose is low. It is possible your doctor will slowly raise it as she sees the lab results. I believe it is danagerous to raise it too quickly. I do not think my endo would raise more than .25 mcg. Over 6 weeks time. What is your T3 level? It’s possible you should see an endocrinologist that looks at both T4 and T3 and treats both levels as needed. If your doctor does not want to refer you then I would consider a new doctor. If you do not need a new referral then find one yourself.
My son has had a TSH of over 100. He went to the ER and that’s where he was treated seriously and seen by an Endocrinologist who still treats him. Until then his PCP was ignoring his symptoms.
Congratulations on stopping to smoke. I pray you will get your current symptoms under control soon!
That must've been so scary and unpleasant for your son. Makes me so mad when stuff like that happens to people I perceive as children. I know we all are/were children, but you know what I mean. People who need our special protection. I hope your son is doing well now.
I put my numbers that I got late yesterday, including T3, into a post on here that has the number 595 in the title.
Looking forward to hearing more of your thoughts. Be well, J
I do not understand why so many doctors insist on giving levothyroxine ( T4 ) when so many of us simply cannot convert T4 to the usable T3. ... I love, love, love my Thyroid Doc who said: "Your body can only use T3. So, why not just take T3." ... Unfortunately, those of us who have done well on Cytomel, are in a pinch, as it isn't available here now. (I'm in the US.) Cytomel is supposed tp be coming back soon, but meanwhile, the generic liothyronine (Mayne) just isn't working well for me. ... Maybe discuss with your Doc the fact that your body just may not be converting the T4 into the usable T3. ... It is a VERY common problem!
Hi Gingersnap 😊 Thanks for writing!! I think I need to come back here with a notebook, and start to list out the things I need to be asking my GP about. Or rather, I'll make the list, then if I can't bear the thought of asking her the questions, I'll have my answer. I will know I need to find a functional doctor and a thyroid specialist to ask the questions to. Argh!!
A month ago I'd never even heard of T3 or Hashimoto's or Cytomel 🤣 Now there's the pre-Hashi's era and the post-Hashi's era. Different worlds to be sure.
Oops I'm falling asleep as I type. Like in a really large lecture hall lol!! Going to sign off for now. Thanks and be well, J
Again, not now. Don't fret about conversion or T3 at all at this stage. Just slowly go along with the protocol of 25mcg raises and retest after 6 weeks each time. Meanwhile get the important vitamins and minerals tested and supported where necessary. In the early stages it's important not to panic about what you don't know, what you don't understand yet and about what you should be doing.
I also only started to get really sick after I quit smoking 2 years ago. I was undiagnosed and fairly symptoms free. 2 months after quitting I gradually went downhill until I was severely unwell. I believe it definitely plays a part. I sometimes wish I'd never stopped but I couldn't go back now. Although if I knew it would help I would seriously consider it. Well done on quitting tho it isn't easy and good luck on your journey x
Hi Diane 😊 Thanks so much for sharing about the smoking. Sorry to hear you've had a similar experience, but it is so cool that you stopped!! Mega congrats!! So many folks don't make it out of the smoking trap, eh? It really is a miracle when one of us does. Be well, J
Thanks, Delmar 😊 Interesting idea. Or vaping even? It might help. But I'd likely end up back in the smoking trap, knowing me. Someday they'll be making little nicotine pills that will be prescribed for various conditions lol. I'm not holding my breath til then though! Be well, J
This tread popped up today. I see it is 2 months old. I haven't quite figured things out yet but this is like reading about me. I quit smoking in August of 2018. By February I had all these weird issues. Nothing earth shattering but enough that my quality of life was taking a hit. I have had colon cancer 3 times resulting in a permenant illeostomy 4 years ago. I still have my rectum and it causes me some acute discomfort and pain. Scheduled a mini colonoscopy to be sure no cancer was in my bottom area. That is where this all comes to the thyroid diagnoses. During the scope my blood pressure was so high I couldn't believe they did the procedure. I left the building knowing I didn't have cancer but felt terrible with super high blood pressure. 220/95.
This was a thursday. My GP wasn't open on friday so I went through the weekend having anxiety attacks. I have never had anxiety attacks! Almost called an ambulance a couple times over the weekend. It was just awful. Was monitoring my blood pressure and it was up and down and all over the place. The Monday I get into see my GP. She puts me on blood pressure meds and does blood work including thryoid. Also gave me a small script of lorazepam for these sudden anxiety attacks.
Couple days later I get the news that I have hypothyroid. Put on 25 mcg's. I felt worse to be honest and was feeling discouraged and overwhelmed. Reading all the info on here is awesome on the one hand. Overwhelming on the other. When I went back in 6 weeks my numbers went up not down. So now I am on 50 mcg's. Go for blood checkup this Thursday. I am just starting to feel a bit better. My brain is making a comeback. I have some energy. I'm not having terrible anxiety attacks. I may be able to start comprehending all this information that has been mind boggling.
I am in the US as well. I don't worry about changing doctors ever. What I do notice is they do not look into things like the vitamin D, B12, Folate, and Ferritin that seems routine in the UK. Not to mention insurance companies will not allow some of these tests. It is very costly to do on your own as it's costly to do the blood work through insurance.
I am hoping my numbers are improving however I expect another increase. I'm just glad to have found this thread. Since quitting smoking I have not felt good at all. Somewhere in the back of my mind I felt like it was part of this new me. I would have never suspected my thyroid. Super glad my gp was clued into adding that into my blood work.
Thanks to anyone who made it through my rambling thoughts this morning.
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First post ! 
First post. I'm desperate to find some relief
This is my first post here, thank you
My first post: 'Looking to help my wife with Hypothyroidism
