I am no where near as knowledgeable as our top thyroid answerers are and I'm sure they will be by soon to share their wisdom. Just wanted to share my experience with you. Why did you hate the levo? I went through a similar experience, thinking levo wasn't working, when all along it was my hypo symptoms manifesting themselves due to the fact that my doctor, at the time, did not shoot for a therapuetic level. I commend you for saying that in spite of all your symptoms you feel well. That's what I thought to when I was unwell and now that I'm better I feel moe unwell than I did when I was truly unwell (weird I know). I think thy symptoms come on so gradually that which just deal with them. When I finally went to other doctors here is the long list of symptoms I was suffering with as of May 2015: anxiety, dry skin, feeling faint, foggy head, constant head pressure, loss of concentration, light headedness, dizziness, fatigue, short of breath, tinnitus, boderline high blood sugar, boderline high cholesterol, boderline high triglycerides, uncontrolled blood pressure (high one minute low the next), high pulse rate, angina, stomach issues, joint pain, blurry vision, hypotension. I stopped my levothyroxine because I assumed it was no longer working for me when in truth my Doctor left me in a hypo state which was the cause of all my issues. I've been back on levothyroxine for seven weeks and I can say that most of these symptoms have resolved, even the tinnitus, and the few that haven't are truly so minimal that I do t notice them which is maybe why I just notice the bone crushing fatigue now
Just wanted to add.... Oh I'm a bit older than you but since I've been back on levo my periods are now exactly 28 days apart and I'm not yet at a therapeutic level for me. What I'm trying to say is please get treated ASAP! Your TSH is way too high. When all this happened to me my TSH was 8.2 and had my lack of equilibrium not caused me to fall while exercising(can you imagine me exercising with all of the symptoms above) I would probably still be off of the levothyroxine. You know that there are also different brands of levothyroxine so you may want to see if your doc would be willing to switch from say synthroid to levoxyl for example. I found out the hard way once you need thyroid hormone you will always need it. If you don't feel well on it its most probably because you have yet to reach the level that is most therapuetic for you. I know for a fact that I don't feel well with any TSH level above a 2 (I've pulled all of my old lab reports) and am now learnings get the importance of watching my free t3 and t4 thanks to the great people on this board. Hope you get to feeling better and again, I just have to say you are one amazing person to be able to say that despite your long list of symptoms you feel pretty well-what an awesome attitude you have.
Why did you hate the Levo so much that you seem willing to do most anything else to get relief from the hypo symptoms?
Yes, your results and symptoms are indicative of hypothyroidism due to Hashi's. Your FT4 is only at about 12 % of its range, which is far below the min.recommended level of 50%. Your Free T3 is only at about 35% of its range, when optimal is usually in the upper third of its range or as necessary to relieve hypo symptoms. You haven't mentioned Vitamin D, B12 or ferritin. Hypo patients are frequently too low in the ranges for those as well, with accompanying symptoms that can mimic hypothyroidism. Also low D or low ferritin can adversely affect metaboism of thyroid hormone. So , if not tested already, you need to get that done and supplement as needed to optimize levels. D needs to be about 55-60, B12 in the very upper end of its range, and ferritin about 70 minimum.
I doubt that you are going to be able to successfully treat your hypothyroidism through natural or holistic methods, so you need to reconsider your position on Levo, or you need to persuade your doctor to prescribe a desiccated type of thyroid med. Since the doctor is leery about desiccated thyroid med, ask him to read about it and I am sure he will change his mind.
gimel and Robbie0710 - thank you, thank you.
I think "hating the levo" was really about non-acceptance more than anything. I have always been healthy and it's kind of a blow to my ego, if I'm honest. Thanks for your detailed response. I have indeed been telling myself I feel well, while my heart pounds and my ears ring and I can't think of the right word for things half the time. When I said holistic - I actually meant I want to get the dessicated thyroid....at least I want to try it, as from all I've read here and elsewhere, it seems the most sensible approach. Levo just gets the TSH number down - but even when mine was a 2 I felt pretty much the same...so i feel like, particularly if my free levels are low as you said, Armour or similar might be a better choice for me. Is that fair thinking? And you're right, I probably hadn't gotten to the therapeutic dose yet either way - I only took levo for 5 weeks before I stopped. But I also don't feel like my doc(s) are very knowledgeable and they just want to get me out the door (first prescriber was an ENT I saw for my tinnitus; now my family doc wanted to prescribe the levo).
THANK YOU for all the advice and analysis of my numbers....really, truly, I needed to hear every word you said. I have found a physician who will help me, who will test for the vitamins (I have been supplementing D, selenium, K2 and a host of others but I don't really know what I'm doing).
You're very welcome. Thanks to the good people on this forum (Gimel is most definitely one of them along with Barb135 and goolara) I've learned so much in the last few weeks than from the entire time I have been hypothyroid. My current doctor tests TSH and free t4 and T3 but won't treat me based on my free t4 and t3 yet. Gimel's posts helped me to understand why, which echoed what my doctor said. Until my TSH IS supressed my Doc won't know how well I'm converting T4 to T3. Right now my free T3 is higher than 50% and my t4 is in the middle but as my TSH continues to drop and is still over 2 he is simply watching the free T3 & 4 to see what it's ultimately going to I think this may be why most doctors start with the T4. A close friend of mine, who has Hashi's, started on T4 and when his doctor saw he wasn't converting ( which took about 6 months) then moved him to naturethroid. I'm not saying this is the correct way to manage the condition but I think that's why most doctors start us out on t4 meds only :-(. I too thought NDT would be the best route after having felt so crummy for so long only to find out it wasn't the levo...it was having a poor doctor who knew nothing about managing thyroid issues. The doctor I have now is well informed and seems to echo every suggestion made by the wonderful members here without my having to bring it up first but he is the 5th doctor to manage this condition in seven years and it took me awhile to find him so follow your gut (mine told me to leave my PCP 2 years ago) and if you feel the doctor isn't a good fit move on. One interesting fun fact, now that my brain fog/confusion has cleared I'm making better decisions which might be why it's been easier for me to leave those doctors that weren't working for me. Just told my previous PCP's nurse yesterday that I won't ever be back to her practice again!
Great info from Robbie. I just wanted to add that you should always keep in mind that a good thyroid doctor will treat a hypo patient clinically, by testing and adjusting Free T4 and Free T3 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief has to always be the most important consideration, not just lab test results. You can get some good insight from this link written by a good thyroid doctor.
For info, the main reason most hypo patients are started on T4 meds is that the AACE and ATA recommend that as the best approach. Also T4 meds are made by the large pharmaceutical companies, while desiccated thyroid hormone comes from smaller companies. Most likely the pharmaceutical sales people visiting doctors offices are predominantly from the large pharmaceutical companies. So it should not be a surprise to anyone why T4 is utilized so much. And to be fair T4 med is easier to administer and more consistent over the full day, due to the slower half life compared to T3 meds. The problem comes when the patient does not adequately convert T4 to T3 and the Free T3 level remains too low. Since Free T3 correlates best with hypo symptoms, a low Free T3 is consistent with having hypo symptoms. So, in those cases the addition of some T3 med becomes necessary.
No Gimmel, say it ain't so. Your probably right big pharma is most probably very seductive. My PCP prescribed me every other medication under the sun rather than address the fact that she left my TSH was way to high. She's prescribed me z-packs for the dizzines saying it was sinus related, higher and higher doses of BP meds including Bystolic (which was given to me by her In the pharmaceutical sample box), suggested endoscopy and possible gallbladder removal for the stomach issues, lexapro for my anxiety, among a host other unnessarily prescribed meds. And was getting ready to prescribe meta form for the high blood sugar! Now that I think about it every time I was in her office there were sales reps coming in and out! I gotta say since I've been back on the levo consistently I've had no reflux, BP is stable with out meds right now. Maybe it's a good thing that my current doc refuses to prescribe anything for me other than the levothyroxine and BP meds if needed. When I decided to work with him he looked me square in the eye and told me you're not going to be feeling all that great over the next month but our goal is to get you feeling better long term, your just going to have to stay the course! He also told me that the process is slow because the therapuetic window for each patient is narrow and he didn't want to miss it. Nevertheless I'm still keeping my eye out for those pharmaceutical sales reps
This is good information - thank you both. Neither of the docs I've seen so far have TALKED TO ME or shared any of the kind of information you're both providing here. I'm the kind of person who needs to understand why I'm doing something. I'm looking forward to getting an appointment today with a physician who seems to be "my type" (and oddly, my family practice guy actually recommended this one, saying if you want to go "that route", he's the one).
So I sit here unmedicated but will relay some urgency in getting that ball rolling - thanks again to you both, for yesterday I had a revelation that hey, I'm hypo and need medicine. I was foolishly thinking it would normalize on its own, that I had a stressful spring, so many rationalizations.
Robbie: I'm interested in your tinnitus....mine started in March, almost overnight although I had a symptom in one ear for a brief time prior. Now I have ringing in both ears all.the.time. I guess when I was on the levo for 5 weeks I thought that was enough time to determine it didn't resolve the tinnitus and therefore the tinnitus must not be caused by hypo. But again, sounds like I didn't go as far as I needed to with treatment. Anyway, just wondering how long yours lasted and what was the correlation between your treatment and the resolution of the tinnitus. I realize it can last forever but I surely hope it won't - it's the worst.
Oh and ps itchy scalp! I have been thinking it's the color I put on my hair, my shampoo...twenty things aside from a hypo symptom but I finally looked it up this morning and of course, there it is. I don't think my hair is falling out (yet), but it's just one more thing to get me to the doc pronto!
I've been on levothyroxine consistently now for 7 weeks. My last test taken on July 10 resulted in aTSH of 2.54, Ft3 of 3.2 (a little above 50% of the range) and FT4 of 1.76 ( which was also a little below mid range). Some symptoms, especially the reflux, were gone within the first week and the tinnitus was gone around week 5. I simply woke up one morning without it. It was after taking this set of bloodwork which was taken at week 4 (switched Docs within a month because first endo would not test frees or really talk with me about results) so in truth symptom relief does most definitely lag behind blood test improvements. Interestingly both my Doc and I know that at75mcgs I'm Undermedicated as it was this TSH level that my previous Doc left me at. Sliding into my 8th week on this dose I've noticed slight buzzing in my ears when I wake up that disappears as soon as I take my levo so, for me, I know now to watch for that as an indicator that my thyroid level is off. I think it a lot of ways we're very similar. Up until May of 2014 I was a super athlete, running, doing cross fit, etc) and then it was as if I just tanked one day. I couldn't figure out what was going on and my PCP kept telling me my thyroid was fine. I didn't know to request my labs back then. I truly thought not having to increase my levo for four years was a good thing and that I had this hypothyroidism under control . Now, I see it wasn't. A less than optimal TSH brings on so many unexpected health issues but I do believe my commitment to health is what kept me from needing cholesterol and diabetic medication. My Doc, and the great people on this board, have all assured me that as I continue to work towards my optimal level those numbers will reverse and as my current Doc is an Endocrinologist I believe he knows what he's talking about. He refused to check my highish blood sugar and won't let me worry about it and simply told me to cut out refined process foods and walk daily. He said these numbers are not permanent and they will reverse but you've got to take your levothyroxine no matter how bad you feel- no exceptions! And he's right, most of the yuckiness that I previously assumed were from the thyroid meds are truly the symptoms of hypothyroidism and will eventually go away as you stay the course. Now I'm looking so forward to increasingly dose of levothyroxine that I even called my doc to ask if we could increase it earlier than next week (he said no, not without blood tests). Stay the course LoriJr the symptoms do go away it just takes time and patience on our part. Look for the positive stories, since May of this year I've met sooo many happy, health, wonderful people who are living well with hypothyroidism so well that they don't even think about it. That will definitely be you and I soon. Please keep in touch and let me know how you're progressing
Many thanks Robbie0710! I appreciate your words and support so much and am thrilled to have found this board - what a difference it has made in my attitude alone. I'll be back!