Frequency of labwork and dose adjustments?

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After months of continued symptoms and several dose adjustments for Hashimoto's, things were finally feeling more normal (managable) in Aug. All was good until Nov. All of my symptoms came back and it turns out that my levels have quadrupled since Aug. So it's back to the slow process of adjusting the medication again. I'm happy that there's a cause, but I feel a little frustrated that it was stable for only 3 months. During those 3months, I was slowly losing some of the weight that I gained. With the recent weight gain of 6lbs in 6wks, it'll take me months to lose that weight, and that's only once my symptoms and levels are back to normal range for me. I hadn't been "stable" long enough to lose all of the weight from prior to being diagnosed. I'm a big runner, I work out almost daily and eat about 1700 cal/day with a low carb diet.
So, I was wondering how long other's have been stable before things started reverting for them?
Thanks for your input!

Replies

  • islandmonkey
    islandmonkey Posts: 546 Member
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    The difficulty with Hashi's is that there are frequent up and downs, so it can be really difficult to get to a "steady state". Honestly, I wouldn't go more than about 3 months without testing, just to make sure; though you can monitor your symptoms and decide if you need to go more or less frequently.

    Because it's autoimmune you might find that calming your immune system down helps to keep your levels more stable (by reducing your antibodies). Exercise is great for that so keep up the running! If you're open to it I'd also suggest accupuncture. Many people find that a gluten-free diet helps to reduce the antibodies as well.

    What meds are you on? If you're taking a synthetic T4-only supplement like synthroid or levothyroxine, you might want to look at switching to a natural/dessicated med that contains both T3 and T4 (like Armour or Nature Thyroid). This form of T4 is a lot easier for your body to process, since it's bio-identical to your natural hormones.

    What labs is your doctor running? Are they basing your dose on just TSH, or are they basing it on your free T3 and free T4 test results?
  • debbiepa
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    I'm on Levothyroxine. I keep hearing that the natural replacements work better. I plan on asking my endo at my next apt more about it; not sure if she will order it or not. Initially, the endo did cortisol levels, TSH, T3 and T4. Now she usually does TSH along and adjusts the Levo based on the results and my symptoms that I'm having. She thinks that I'm probably someone who doesn't feel good unless my TSH is around 1.0; which has generally been true. I just wish that the level and my symptoms would stay more stable. She did suggest a low carb diet and that's helped over time.
    I will definitely keep the acupuncture in mind--something that I hadn't considered at all.
    Thank you!
  • islandmonkey
    islandmonkey Posts: 546 Member
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    I'm on Levothyroxine. I keep hearing that the natural replacements work better. I plan on asking my endo at my next apt more about it; not sure if she will order it or not. Initially, the endo did cortisol levels, TSH, T3 and T4. Now she usually does TSH along and adjusts the Levo based on the results and my symptoms that I'm having. She thinks that I'm probably someone who doesn't feel good unless my TSH is around 1.0; which has generally been true. I just wish that the level and my symptoms would stay more stable. She did suggest a low carb diet and that's helped over time.
    I will definitely keep the acupuncture in mind--something that I hadn't considered at all.
    Thank you!

    TSH is a pituitary hormone, not a thyroid one, and is also often suppressed in people taking meds.

    Do you know if she tested free or total T3 and T4? If you aren't sure, I would go ask for a free T3 test. Many people find that no matter what dose they are on they still feel awful, and it's usually because their free T3 isn't high enough.
  • strawberrytoast
    strawberrytoast Posts: 711 Member
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    Here in the UK its rubbish, you see a normal GP doctor who sends you to a nurse for your blood to be taken. You go back every 6 months until they say your TSH is normal then its once a year! As far as i can tell they will only give us Levothyroxine now and the highest dose my doc will allow is 150mgs.
    With hashs everything ive read said it will fluctuate so id go back anytime anything feels different
  • megawatt259
    megawatt259 Posts: 10 Member
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    Anyone have any insight on whether I should seek an endo or stick with my GP? I'm newly diagnosed (3 weeks ago) and just started 50 mcg of levo. I have an extensive family history on both parents' side with hypothyroid and not sure what others experience has been. I like and trust my GP, but want to feel better!
  • Dlacenere
    Dlacenere Posts: 198 Member
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    Megawatt259, I used to see an endo but now I just use my GP but I dictate what bloodwork I need and how often, luckily mine is cool like that. Educate yourself as much as possible on www.stopthethyroidmadness.com and you make the rules. I have labs done every six months. I get both antibodies tests (I have Hashimoto's) T3 free, T4 free, reverse T3, TSH, vitamin d and vitamin b12 done every time (those can be low if you are hypo and you may need a supplement). I was on levothyroxine for years and switched to Thyroid NP (generic Armour) about a year ago and it has made a huge difference for the better, I take 1 grain in the morning and 1 grain in the afternoon as it has a short half life. I chew it so it doesn't interfere with food or vitamins etc. and gets in my bloodstream faster. Hope this helps.
  • marijasmin
    marijasmin Posts: 160 Member
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    I am lucky in that I have a great GP and if needs be private health care. I tolerate levo well too but find after many years of monitoring that I need at least 25mcg more in the winter than the summer. It took almost 4 years to find a stability dose. Illness and food make a difference too. Recent diagnosis of b12 deficiency played havoc also. My levo has settled at 125 mcg (less in summer) with b12 patches and supplements.
    I am a controlled type 2 diabetic.
    You can monitor your levo on the site by adding a user defined field 'supplements' or 'meds' and you can use the notes section in either exercise or food to monitor tiredness and well being. Because I have a fit bit ultra I do that on the fit bit site as I check the effects on sleep too, I give myself a 1-10 rating for tiredness every day. A 6 is good and an 8 excellent, I seek to stay in that range and check, check check. Changing only one factor at a time so I know what helps, hinders or has no effect.
    Biggest improvements in health:
    Levo min 100
    B12 patches every week (tablets tried patches better result)
    1 hr exercise of any exercise daily
    Adding weekly sauna for 2 hrs (relaxation or sauna itself?)
    Sleep min 7 hrs( more than 8 and less than 7 harmful)
    Water min 7 glasses per day
    Losing bread and aspartamine from diet
    Replacing oil and margarine with coconut ( thanks Debbielee)
    No coffee after 4 pm
    Always some breakfast

    Had no effect on health
    Cutting out red 2 glasses wine ( no spirits anyway) so still have a couple glasses
    Changing type of exercise (stopping running so much as didn't help) cycling is fine
    Eating big breakfast rather than small so now I eat what I like in a morning
    Heavy protein intake so I eat protein as I feel like it
    Low fat intake so I eat butter sometimes
    Natural thyroid hormone costly so it doesn't help I don't spend

    Detrimental on health
    Exercising over 2 hrs per day intensively as overall on those days my total activity drops
    Trying shredding just made me very tired
    Fasting played havoc
    Detoxing felt really dreadful
    Cutting carbs (complex) made me very tired but cutting glucose and high fructose helped

    Think the key is to monitor as much as can be monitored. Recent steroid prescription has affected my body comp but not my weight as I monitored everything on fit bit I was able to manage my health better. For me this journey is about my health not just my weight!
    Although the two often go hand in hand. Ironically that which gave greatest weight loss seemed to have adverse health consequences.

    Let us know how it goes

    Jasmin