Tsh level

I was diagnosed with HYPERthyroidism last year. Still dealing with lots of symptoms, mostly general fatigue; muscle weakness (especially my legs - get so tired just walking or standing sometimes and feel like I'm going to fall down!); and heart palpitations, along with the feeling like I'm having an anxiety attack. I also get edgy/irritable or depressed at times.

I have been on tapazole (methimazole) - 5mg two times a day. My recent blood test put me in the "normal range" but I still feel like I'm not much better. I think it's "normal" to still have symptoms and yet have a "so called" normal blood test.

I am a very "alternative" person and I try not to do things conventionally. I see if natural/alternative solutions are available. I do LOTS of my own research on the web and have learned a lot from others at this site. My first advice is to listen to your intuition. My second is to NOT put all your trust in conventional doctors - or maybe anyone for that matter. Do your research and then listen to their suggestions. Then make a decision that YOU feel good about.

One thing I've learned for sure is that thyroid issues are VERY complex. Whether HYPO or HYPER, there are MANY different causes for an imbalanced thyroid. I highly suggest you DON'T EVER get surgery to remove your thyroid (should it get to that point). I'm skeptical about radioactive iodine treatment, too, for hyperthyroidism. Also, there are symptoms that are the same for HYPO and HYPER, so make sure you know which one you have.

To start you on your journey to educating yourself, I have two recommendations:

1) Google "Life Extension Article Carnitine" - you said you are HYPO, and this article is info for HYPER, but you may find it useful, regardless.

2) I'm getting a book in the mail (haven't gotten it yet) called "The Thyroid Solution: A Revolutionary Mind-Body Program for Regaining Your Emotional and Physical Health" by Ridha Arem. You can order an inexpensive copy online at Amazon. Also, online you can read a lot of the book to get an idea of what's it contains. Just reading what was online really educated me and I also didn't feel so alone. There are charts about TSH, T3, and T4 levels, indicating what levels are mild, moderate, and severe. There are also lists of symptoms and even a test to help distinguish if you have a thyroid issue; chronic fatigue; or fibromyalgia. There is also a chapter about postpartum hormonal issues. LOTS of useful info!

LOTS of info on the web to help get educated about thyroid imbalances.

I know maybe I didn't help much in regards to your specific questions about your blood test results, but know that if you have symptoms, you may still have a hormonal imbalance, even though the blood tests are within normal ranges. I've found that I've had to take my health into my own hands because one size does NOT fit all!

I hope you can figure it all out...I'm still trying, as are many (unfortunately).

Veronica

Linda

I started out with a similar situation it sounds like you are in: my TSH was tested and found to be "in the normal range" so no further testing was done, except when I was found to have a very high ANA test, I began having yearly TSH tests, all with the same result for several years until my ANA became normal.

Within a year after my regular doctor retired, my OB/gyn tested my TSH again and it was practically zero, which started me on a nightmare tour of methimazole treatment. But I have now been off of that for over a year, and was able to go on Cytomel and later Levothyroxine, due to a singular turn of events last June.

Tomorrow I have the second appointment with the 4th endocrinologist I have seen.

I understand the desire on the part of many patients to go to alternative practitioners for help, but it seems to me that there needs to be a general advancement in the medical field -- a medical breakthrough -- so that many of us who don't fit the expected mold, may receive better treatment. To me, "us" includes some, if not all, of my 4 children, my sister, and perhaps several cousins. (And who knows how many distant cousins.)

I have had the theory for years that there was a genetic cause for having lower TSH than what is the simple result of sufficient T4 and T3. I just got DNA test results back about 6 weeks ago from 23andme. I ordered the test before the FDA (US) started investigating them and they had to discontinue health reports, but really the health reports aren't comprehensive anyway.

Linda mentioned on another thread about how acetyl-l-carnitine has been shown to help with the low TSH of hyperthyroidism, so I decided to look into it.

According to what I have read there may be some doctors who would prescribe it, but many more are leary of it, especially if found to be hypothyroid. There are other reasons they use it to treat some patients, however. There has been at least one study showing it is helpful in treating Fibromyalgia, another study showing it is helpful in treating Chronic Fatigue Syndrome. [I always thought both of these are just hypothyroid symptoms without the TSH backing them up.]

There are also about 60 possible mutations to the Carnitine gene [SLC22A5] that can affect how that amino acid is able to be used in the body. These mutations are rare in the general public, but I was able to view the results of my DNA testing and compare them with my husband's and his uncle's gene, and found that mine is different, such that in one SNP, I apparently inherited a different value from one of my parents from what is normal, which means I am heterozygous at that point.

Studies that have been done have shown that when a mouse, or a person is heterozygous with a mutation in that gene, they have a number of symptoms, which can be like the symptoms of hypothyroid, and more. For myself, I am going to see what can be done, but I expect that my endocrinologist may not want to delve into it, but if he allows another doctor to treat me, I think it would be due to the genetic condition, not the possible thyroid involvement.

Fern, I would appreciate some additional info on your "nightmare tour of methimazole treatment." That is what my doctor prescribed and what I have been taking for the past 4 months. I really haven't noticed the incidence or severity of my symptoms declining. And my recent blood test showed me in the "normal" range. So is it working? Who knows!

I was taking 5 mg three times a day at first which led to extreme constipation (ugh!). I called my doctor and she said to decrease dose to twice a day. My abdominal issues are back to normal, but I still have hyperthyroid symptoms. She's a D.O. working at a supposedly progressive clinic specializing in hormonal issues and melding conventional and alternative treatment. I really haven't been too impressed! I agree with you, Fern, that the medical field needs to make some REAL progress!

Linda, I started taking the acetyl-L-carnitine a few days ago. What I noticed is that my muscles did feel stronger and I had a bit more energy when I took it WITH my methimazole (vs. on its own, which didn't seem to help at all). Maybe as I continue to take it, the increases in strength and energy will become more pronounced. Thank you for the suggestion!

Fern, I also believe, like you, that there is a link with CFS and fibromyalgia. Also viruses, particularly the Epstein-Barr virus, that most of us (some studies say 90-95%) have -- mostly dormant, sometimes active. If it is triggered (maybe stress or ??) then perhaps it can get to the point of attacking the thyroid...thus HYPER- or HYPO-thyroidism. I hope researchers are studying this so we can get some definite answers. If not, sounds like we may eventually figure it out on our own! :0

I know I have had a lot of body problems due to immune malfunction if you want to call it that. Like about a year ago, I kept breaking out in a lesion on my forehead and at the time was stressed due to work situations. When a biopsy was not definitive, I started rubbing it with Corticosteroid scalp lotion and it never came back. It was like I was telling my immune system "Go to sleep, false alarm". I wish I could find the same thing that would work for my thyroid. Perhaps the L-carnitine is one such thing.

Yesterday I learned of a new book coming out by Dr. Wayne Dyer called "I can see clearly now". In it he relates the story of a near drowning death of his younger brother who was rescued and revived. After that, any time his brother went near water, he got hives. He even got hives if rain drops fell on him. Many years later, Dr. Dyer was able to help his body get over that illustrating how powerful the mind-body connection is for healing.

Keep us updated on your progress. I am glad you think your muscles are stronger and you have more energy.

I've been taking the dosage recommended on the bottle. They are 500mg vegetarian capsules. I take 2 capsules twice a day with my methimazole. So, 1000mg twice daily = 4000mg/day. I can't remember the dosage you said you took (didn't go back to your post but intended to do that - I just wanted to start taking it right away!).

Very interesting about your forehead lesion! I SO believe in the mind-body connection. And I LOVE Wayne Dyer! I've been reading his books (and watching him on PBS during the fundraisers) for several years. I'll look for his book! I've been reading about the mind-body connection with cancer, too, and how it is NOT a disease...totally different perspective (a lot of truth, I believe).

(Sidebar - I feel connected to Dr. Dyer because he is also a native Detroiter, like me. He was an orphan with a difficult childhood and became a high school teacher (my friend had him as a teacher in high school!). Then he became a college professor at Wayne State University in Detroit and the rest is history!)

Stress is called the number 1 killer...it's easy to see why. Our lifestyles/beliefs/values in the U.S. (and much of the world) are congruent with stress. I think many are beginning to realize that and taking appropriate action to remove the stress, or at least reduce it significantly. We're planning a move to Ecuador by the end of this year. We want out of this rat race...and the stress that accompanies it!

Linda, thank you again!

I was told by my boss that it was safe to use and wouldn't hurt me. Keep a very close eye on your blood values and adjust accordingly. I started taking 1,000 mg a day and am now taking 250 mg every other day. I like my TSH to be around 1.4 and my T3 and T4 to be in the middle of the normal range. When TSH goes higher, I worry that I am going to experience the opposite effect of my hyperthyroidism.

Interesting history you have on Wayne Dyer. I look forward to reading his book too.

I realize the instructions on the bottle is the dosage you are taking and I think that would be fine if you were not taking Methimazole but remember, you are combining the two and that makes each of them more potent.

To anyone on the board, I would not take more than 1,000 mg of Acetyl-L-Carnitine daily when combined with Methimazole, unless after starting it you are not getting the results you want. When your values, particularly your TSH comes up rapidly, I would think you would want to decrease the Methimazole as well.

Unfortunately they have not done Clinical Trials on this so even with me it is a guessing game of adjusting my meds to keep my values in the range I want.

Linda

I'll start taking one capsule (500mg) twice daily (1000mg/day), along with my methimazole (also twice daily).

Thanks very much! I'll be in touch!

Linda

But still a very complex issue for sure...

I started the MMI probably in May 2009, having been told to take 3 pills (5 mg each) in the mornings and 3 in the evenings for one month, along with a beta blocker because my heart rate was quite fast, then to stop the beta blocker and go down on the MMI to 2 in the morning and 2 in the evening for the next month.

By the time that second month came around I was so blank minded, often referred to as "brain fog" that I would forget to take my morning dose, then remember my evening pills, the following morning and evening but the next morning I would forget again. (that's complicated, isn't it?) So, say, Monday I would take the full dose, Tuesday I would forget the morning dose, Wednesday I would remember all day, Thursday i would forget the morning dose again, etc. So when I realized I was following this pattern, I tried calling my Endo but couldn't get through to him. So I took it upon myself to simply skip the morning dose. Then I got in trouble with the Endo. He called me "non-compliant" and insisted I take the MMI as directed. I had also forgotten to get a blood test the week before coming in, and he wouldn't have my blood tested at that point because I had been "non-compliant."

I stayed with him until the end of March 2010. That was when he stopped reducing my MMI dose, then at 12.5 mg daily. By then, I was suffering a great deal from what I thought was hypothyroid symptoms, even when the endo said I was "in the middle of the normal range". I just weaned myself off of it in about a week. I cancelled my next appointment and had a very pleasant summer. But my levels were distinctly hyper. (I didn't obtain copies of my lab reports until the end. Then I had them all printed out for me, but I misplaced most of them...)

Other doctors, and my husband as well, began pressuring me a great deal to return to the Endo. Finally, in September 2010 I agreed to go to Endo #2 for a second opinion. He told me that Endo #1 had made me hypothyroid.

He had a slightly different approach, starting low (5 mg) and going up from there, but it was the same thing all over again: the coldness, the low energy, the brain fog. He didn't seem to even understand the term "brain fog" until I fell face down in the street. between my blood draw and the appointment. He wondered why I had all the scrapes on my face and I told him. "Why did you fall?" he asked. "I don't know," I said and explained how hard it was to keep track of what I was doing when my brain was in a fog.

He obviously didn't really want to do it, but he dropped my dose of MMI by one pill per week, saying I would probably go hyper. I didn't . My TSH shot up from 0.01 to 2.53 (from what I remember.) [From Feb. to May] I felt very good though. I asked him to lower my dose again, though, because I thought feeling that good was only temporary. Those two appointments were 3 months apart, and the next one was two months later. He lowered the dose by another pill per week, again predicting I would "go hyper". I felt better at first, but then started going downhill again. His office called me as soon as my labs came in, telling me to reduce my meds further. My TSH was above 5.1 (can't remember exactly.) It was a little less of a nightmare after that, because I became confident enough to start reducing my meds gradually on my own and letting the endo know after the fact what I had done. I was always careful to leave my dose constant for the 4-6 weeks prior to my next lab date. Since my TSH stayed within the normal range, the doctor never complained. In December of 2012 I could hardly stand the MMI any more, and was taking 1/2 pill per day. As soon as the labs were taken, I stopped it altogether. I really wanted the Endo to prescribe me replacement thyroid meds but he wouldn't, even though he agreed that I did the right thing going off the MMI. My TSH wasn't high at that point, but my Free T3 was below normal range.

My TSH didn't go out of range again until near the end of November last year, nearly a year after I was able to stop the MMI.

In the meantime, though, I was in misery, feeling all the symptoms of hypothyroid without the TSH to back it up, or the anti thyroid drug to discontinue.... No supplements. My TSH gradually dropping, but feeling worse. I went out of state, and an 8 hour drive away, to an Endo (#3) I thought would be better. She is the one who told me I had both types of antibodies: both for Graves' Disease (GD) and Hashimoto's Thyroiditis (HT). She said I should have RAI (radioactive iodine) because she didn't believe that my crossed eyes were due to the GD, and she said that the anti TPO antibodies (HT autoimmune attack) would destroy my thyroid just like the RAI would, but with RAI, I would be able to start on the thyroid supplements. She was too afraid of giving me supplements without the RAI because "the smallest possible dose" might make me go hyper again.

She did write a letter, however, instructing me to take it to my PCP (primary care physician) which would allow him to run the lab reports every 3-4 months and she would see me in a year unless something more drastic turned up before that. That was last May. My TSH was borderline low.

In June, I tried to see my old endo #2, but he dismissed me as his patient because I went elsewhere for a second opinion. Then I turned to my regular doctor. I talked with him and he agreed with me that I was walking a tightrope between the GD and the HT, and that no doctor could walk it for me and I just needed the means to do it. He gave me choices and I chose Cytomel because I knew it was fast acting and fast leaving my system in case the GD flared up again as well.

Cytomel helped me immediately, but I could tell it was much more potent than I had imagined. I had only started with a 1/2 pill (5 mcg per pill) and it made me feel like a normal person again, but it raised my heart rate to 93, and I was committed to taking my blood pressure and pulse to determine if the GD returned. My doctor tested my TSH, free T4, and free T3 every 6 weeks after that, and my TSH rose the first two times I was tested, while I had been gradually increasing the Cytomel (Liothyronine, or L-T3) from a restart level of 1/8 of a pill, to a half pill. Then I was more confident that I wouldn't go hyper again, so I increased it to a whole pill and the doctor had prescribed Levothyroxine (L-T4) as well to stabilize me. I thought it would be 25 mcg L-T4, but the pharmacy gave me 50 mcg tablets, so that's what I took. I also increased the L-T3 to a pill and a half just before my next labs (big mistake). That was when, last November, my TSH dropped to 0.009, and I was really in big bad trouble. I dropped my doses, but it didn't matter to anyone, except for making me feel hypo and making me miserable again.

That resulted in my being referred to Endo #4 who I saw a month ago and who really wanted me to stop the L-T3 altogether, but consented to my dropping it gradually, and when my labs came back last month and they were 0.18, I think, he said I could continue taking 1/2 pill... or at least try it if I could tolerate it. I couldn't tolerate less than 1/2 pill in the morning and 1/4 pill in the afternoon, so I let him know.

Today, he told me I could stay on that dose, get new labs done in a month and see him in three months. (So my labs will be 2 months apart.) He will let me know if anything changes.

I also asked him what he thought about the Carnitine. He said it wouldn't matter with the thyroid, so he would neither recommend it nor forbid my taking it.

He is a "Fellow" which means he is a newbie, just starting out after his Residency. He asks other endocrinologists their opinions a lot, and the others are very hard-nosed, I think. One came in and talked to me today, and was very dismissive of 23andme because he knew from news reports that it was being investigated by the FDA. He said no one lives past infancy with primary carnitine deficiency, even though I have just read clinical studies involving adults with it. Mothers were diagnosed when their infants were found to have it, because when a person has only one copy of the mutation their symptoms aren't so severe.