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Started 50 mcg of Levothyroxine with no Symptoms...should I?

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chaundaw08
chaundaw08

I was diagnosed with Hashimoto's June 2016. I was gaining weight, losing my hair and I was tired all the time. My TPO was at 365 and TSH 2.37, T3 and T4 were low normal and I had a slightly enlarged thyroid. I was afraid to go on levo because of a bad experience I had with birth control (synthetic hormones.) My endocrinologist worked with me and gave me the ok to try lifestyle changes and supplements. A year later I feel better than I had before my diagnosis. My energy is back, my hair is thicker, and I've lost weight and maintained it. My blood work was done this month October 2017 and my TPO was 308, the goiter had not changed in size, but my TSH climbed to 4.3 and my T3 and T4 are still low normal. I feel better than I've been in a long time. I'm gluten free and vegan and I've been taking care of my gut with l- glumine, marshmallow root and NAC.

My question is: Are my lifestyle changes and supplements masking my symptom so much that I don't feel as bad as the number say that I should?

My endocrinologist was willing to go another 6 months without meds but once my TSH reach 5.0 that I should go on it. I was concerned about the TSH and the possibility of the goiter getting larger so I agree to get on meds now at 50 mcg of levothyroxine. She said since I feel fine now that I shouldn't feel any different at this dose since it's the second to the lowest dose. I'm scheduled for blood again in January 2018.

Should I have delayed meds until I feel bad or the goiter gets bigger?

1 like, 15 replies

15 Replies

  • annie78444
    annie78444 chaundaw08

    Posted

    Hi, your GP is not correct re the second lowest dose, there is the 12.5mcg  Levothyroxine tablet, and you can break that in half for 6.25mcg, whether you need to start a dose is between you and your doctor. Most doctors do not want to treat until your TSH is over 5.0.  What is your age? 
    • chaundaw08
      chaundaw08 annie78444

      Posted

      I'm 43 and 149lbs. All my vital signs are normal. B12 and vitamin D are also normal. I'm generally in good health.

    • annie78444
      annie78444 chaundaw08

      Posted

      Thanks, in my own opinion i am surprised your GP is suggesting/has given you medication, as more levo than is needed can be bad news for bones and heart  - and as you are not hypothyroid - and , if you are well,  no real evidence of subclinical hypothyroid yet, other than the raised autoantibodies   - and are and not even low D,,  and possibly  only some years away from menopause - i would discuss why treatment is indicated.  Your TSH is still in the ok reference levels, it does go up and down anyway, depending on the time you had the test.  Were the 2 test times different?
    • chaundaw08
      chaundaw08 annie78444

      Posted

      The first time I tested was in the morning. My most rent test was in the afternoon.

      She said levo will help with the goiter but I'm not having any problems breathing or swallowing and she did say it was small.

    • annie78444
      annie78444 chaundaw08

      Posted

      Hi, Chaundaw08,  TSH, as far as i know - i am not clinical, just had low level hypothyroidism for 10 yrs - is normally highest after getting up, and lowest  later in the day. You may, or may not, be going towards hypothyroidism needing treatment, it is up to you and your doctor to sort.  I think you mentioned it was suggested you wait till TSH over 5.0, in some areas they suggest two tests, over time, with TSH over 5.0, and still some uncertainity  about needing treatment even then - though I do not know anything about cases where a person has a goiter,  Sorry i cannot help more
    • annie78444
      annie78444 chaundaw08

      Posted

      P.S. forgot to say that my dose of levo went down with small wt loss, now 135 llbs, and use hardly any, not sure if wt loss is connected, but have read lower waist circumference could be, but not sure where i read
    • chaundaw08
      chaundaw08 annie78444

      Posted

      Thanks annie78444. I appreciate your perspective and input. You've definitely given me food for thought. I've been taken levo for two days now and I had some heart flutters. I don't know if it's the levo or my nerves and the anticipation of some horrible side effects. I know it's too soon to judge.

      I like the standard you described for starting meds after two TSH tests above 5.0. I'll share that with my doctor.

      Right now I'm leaning towards stopping meds and just waiting until I actually NEED it to feel better or to treat a troublesome goiter. Out of fear and wanting to be proactive I started levo. Now, when I consider the side effects of taking levo (possible hair loss, problems with bone health, and heart conditions, etc.) the risks seem to out way the benefits for me at this time.

      Thanks again for your input. I'll keep you updated if anything changes.

    • annie78444
      annie78444 chaundaw08

      Posted

      thanks for your reply, chaundaw, i was pro active once, not now - i dont know what changed with me but i began having speeding heart a few years ago, my GP was not concerned and then i had more symtoms, GP said i would not need less levo, then anxiety etc, then he would not refer. Eventually i got a doctor who told me to stop and have months off levo and test again, then again a month later etc, i was feeling bad ny then and did restart, but at a much much lower dose than i had been on. the only good thing about it all was i had learnt the symptoms of too much levo, which usually take weeks to click in, the then you cant stop them as its a long term medication, it gradually leaves your body. i had some very bad times.  And two strange heart incidents, and have now - tho it may not be connected - osteoporosis.  if you  know what your normal pulse was before treatment - consider whether it was it lower than it used to be?  lower pulse rate and tiredness are hypo symptoms, along with higher blood pressure.  Too much levo = higher pulse rate, or speeding heart, and  unpleasant anxiety, and more irritable feeling, things feel speedy and not right. Hope this helps, though of course everyone is different
    • chaundaw08
      chaundaw08 annie78444

      Posted

      Ugh! I'm sorry you had to go through that. I had heart palpitations and anxiety right before I was diagnosed with Hashi's and no meds. I was probably hyperthyroid, then was hypo when I was diagnosed. I don't have time for that. I DO NOT want to go through that again.

      My resting pulse is around 72 now. When I was diagnosed it was in the lower 60s and sometimes upper 50s. I have an oximeter to check my pulse and oxygen saturation in case my goiter gets bigger and puts pressure on my esophagus. Yeah, it may be overkill but the racing heartrate and anxiety I had in the beginning was no joke. I do not want to go through that again if I can help it. So, I'm keeping a watchful eye on it.

      I feel fine now without levo. I shouldn't risk it just to look good on paper.

    • annie78444
      annie78444 chaundaw08

      Posted

      Resting pulse of 72 seems fine, 70-72 is what mine usually is, though it can go, with no levo at all, to low 60's,  less than 6.25mcg a WEEK, tiny amounts per day, of levo keeps things fine at the moment for me, but your situatin sounds a bit more complex with those changes with no levo, and the goiter.  As we are all different, it is difficult to compare.  But i agree, the hyper symptoms can be bad, i found them  frightening.  I hope things sort out, i have a consultant appointment in some months to see if anyone can sort what has happened to me.  It all started with only 12lbs wt loss, and more fruit and veg and olive oil (tho veggie anyway).

    • MtViewCatherine
      MtViewCatherine annie78444

      Posted

      Anni, I had heart palptations and anxiety on levothyroxin, as well as other side effects.
  • MtViewCatherine
    MtViewCatherine chaundaw08

    Posted

    Hi Chaundaw, 

    Kudos to you for understanding the dangers of synthetic hormones, and for empowering yourself. I’ve been firm a similar path.

    On the cyst: just because you aren’t seeing a change in size doesn’t mean you’re home free. The cyst could be changing and becoming more dense, essentially growing inward rather than outward. However, taking levothyroxin doesn’t necessarily prevent the growth of cysts and in my case, actually caused it to grow, when it had previously been “stable” for years. What I eventually realized also, is that stable in the sense that it wasn’t increasing in size doesn’t mean it wasn’t increasing in density. So the watching for growth isn’t quite a full pcture. You’re smart to use diet and supplements to curb thyroid disease. 

    When you consider the side effects of levothyroxin, taking it preventatively when there’s no guaranty it will prevent a cyst from growing, and could actually cause the cyst to grow,  doesn’t make sense. 

    The gluten free diet is fantastic. I would caution against a vegan diet with hypothyroid disease because in addition to iodine, thyroxin is made by the body from amino acids and requires amino acids for the chemical reactions to convert raw materials into thyroxin. Meat is simply your best source of essential amino acids.

    I  did not do well on the levothyroxin and had to go off. The most effective supplement I’ve found is essential amino acids.  If you’re hesitant about the meds you might try these supplements. 

    Also, I’ve battled thyroid disease my whole life and at one point managed to get my symptoms into remission. I feel this was due to lifestyle changes. I lived in a warm climate, did a ton of cleansing,  drank lots of low calorie, high protein smoothies, exercised a lot, had a very good high protein diet. I enjoyed a blissful ten years of size 3.  When I say high protein, this is relative, as I grew up in a family that ate very little meat and I don’t much care for it. However, I feel a whole lot better when I increase the meat in my diet and decrease grains. I generally substitute root vegetables for grains. 

    I’d love to hear what supplements you’ve found most helpful.

    • chaundaw08
      chaundaw08 MtViewCatherine

      Posted

      Thank you for your insight, MtViewCatherine! My experience with a high protein diet was not as beneficial to me. Before I was diagnosed I was on a high protein diet. I was unable to lose weight and I was tired all the time. For six months between blood tests I really stepped up my protein intake with shakes and did not see any improvement in my blood work. It wasn't until I cut out meat, dairy, and soy that I saw a reduction in TPO antibodies and the scale finally move. I had been a vegan for only two months. I saw a uptick in TSH but from my research that is to be expected if your antibodies are decreasing. Since I'm still feeling good, I'll just wait and see if my thyroid can salvage what's left of itself to create enough hormones to stablize the blood work.

      As far as supplements go:

      I'm taking l-glutamine (5 grams on an empty stomach)with Marshmallow root (Since August 2017) to heal my gut. And NAC (600 mg twice per day) with Selenium and Molybdenum for inflammation. Glutamine and NAC have helped tremendously with my sinuses and acid reflux! I'm hoping my immune system is benefiting as well.

      I'm taking a Super B Complex vitamin with added vitamin C. Being on a vegan diet could negatively impact your B12 levels so I'm taking some just in case.

      I'm also taking Myo-Inositol. A clinical trial shows that taking 600mg of Inositol and 80 mg of Selenium helped to decrease both TPO antibodies and TSH in all the hypothyroid patients who participated in the trial. Hopefully it will help me.

      And of course vitamin D. 2000 to 5000 IU per day. This can also help lower antibodies.

      January 2018 marks my 6 month vegan diet anniversary and I have labs and an ultra sound appointment at the end of this month. I'll let you know the results then.

    • MtViewCatherine
      MtViewCatherine chaundaw08

      Posted

      Thanks so much for the info. I’ll do some research and check out some of the things you mention that I’m not already doing!
  • chaundaw08
    chaundaw08

    Posted

    UPDATE (2018/01):

    Got my labs today. Here are the results:

    TPO 268

    Thyroglobulin Antibody less than 1

    T33.22.0-4.4

    T4 1.04 0.82-1.77

    TSH 5.840 0.45-4.5

    B12 896

    Vitamin D55.8

    Blood Pressure 118/76

    All other readings are normal, and I'm feeling fine. My T3 readings may be the reason why I had hyperthyroid symptoms with the levothyroxine. It appears that my thyroid is converting T4 into T3 efficiently considering my circumstances.

    The results from my thyroid imaging are hopful. There was a slight decrease in size of the inflammation which means some healing may be taking place.

    I'm excited about the TPO antibodies! That's a bigger drop than I expected. I'm going to keep doing what I'm doing and wait for symptoms to present themselves before medicating. My doctor agrees with me so I'm just going to ride this out and see what happens.

    Labs will be done again in 4 months.

    Please let me know your thought and/or insights on my results.

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