Desperate for Help!

Hello,

I've been following the blog for some time now and it has helped me tremendously understand things about my condition that unfortunately my endo didn't tell me about. I am still however seeking help and advise since in spite of being on medication for over a year now, I am not getting better (an issue I noticed a lot of people have, here).

So, I am a 36year old female and was diagnosed with Hypothyroidism over a year ago, my endo put me in 25mcg of Euthyrox (Levothyroxine) right away. 3 months later, although my THS levels came back to normal but the symptoms, not as severe but still pretty bad, persisted. So he increased my dosage to 50mcg. Another 3 months from dose increase I saw another endo, TSH levels came slightly higher but within the normal range so he prescribed the same dosage i.e. 50mcg. Hashimoto's and Insulin resistance were both negative.

Now, over year on 50 mcg I still have the following:

- Sleep disorders. I have a hard time sleeping at night. Even when I do fall asleep, I keep waking up. As a result I have a hard time waking up in the morning, wake up always tired with sore muscles. Because I am sleepy all day, I've started sleeping during the day at odd hours.

- Muscle Pain. I have very poor muscle tone. I cannot workout anymore, if I do, I am sore and in pain for days. My arms and shoulders hurt the most. I do have leg cramps (specially the calves) every now and then too.

- Poor Digestion. I am bloated ALL THE TIME. No matter what I eat or don't eat, I've tried going completely gluten free, even then salads and certain vegetables would make me bloat. The only time I wasn't bloated was when I was on a detox diet for 5 days which entailed having only vegetable juices.

- And the worst one - Weight Gain. I have gained over 10lbs since the time I started the medication. I know weight gain is one of the symptoms, but once the treatment starts shouldn't the weight stabilize? Nothing works, no amount of dieting or workout shows.

Based on all of the above, please tell me what else I need to get tested for. I read somewhere Leptin intolerance could be one of the reasons for not benefiting from thyroid medication. I am scheduled to see yet another endo next week, and would really appreciate if somebody could guide me for the tests I need to ask for, or any other questions I should be asking him.

Thank you!

13 Replies

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  • Do you have your most recent blood results and lab ranges? Would be good to know what they look like. Generally it is thought that iron, ferritin, folate, d and b12 are also helpful to have tested.

    Your symptoms lead me to believe you're undertreated but the only way to know is to see the test results.

    Would be good to know if your endo is on the TUK list. You can pm Louise Roberts (find her in members) and get the list.

  • Thank you so much for your response. I will be seeing the endo on 9th Apr, and should have my latest blood work that same week hopefully. Will share it with you once I have it.

    As for the details of my endo, I dont live in the UK - live overseas, so i doubt you'd have him on the list :-)

  • Do you take your levo on the day of your blood test?

  • I do actually...I didn't know you're not supposed to.

  • Yes you shouldn't as your levels will show artificially high and they'll reduce your meds. Just remember next time and demand a retest as soon as you can. Be strong about your symptoms and persist.

  • firstly its utterly vital that you always get actual results and ref ranges of all tests taken and start a file

    50 mcg is still only a starter dose and "normal level " means squat

    request

    TSH

    freet4

    freet3

    ferritin

    folate

    b12

    vit d3

    arrange the test early morning is utterly vital

    it must be fasting and only water to drink

    and on no account whatever take your levo in previous 24 hours

    your GP should be able to order the above and when you get the results post them here

  • Thank you so much for the advice, I had no idea you're not supposed to take levo before tests. The endo's here are either incompetent or just dumb. They dont give any details or insight into the condition or your test results.

    I will share the results with you as soon as I have them next week.

  • Hypo causes problems with lower acid levels in the stomach which could be cause of bloating - avoid bloaty causing veg ie, Beets, broccoli, Brussels sprouts, cabbage, cauliflower, corn, cucumbers, leeks, lettuce, onions, parsley and sweet peppers and a lot of pulses can also cause it. Try adding a Betaine Hydrochlorine supplement for a few weeks and see if it helps you .

    But with your other symptoms you still sound undertreated - what are your recent tests and lab ranges ?

  • I am taking 'one a day' kind of supplement for 30+ women. Can I take Betaine Hydrochlorine supplement along with it.

    Also, I have started taking apple cider vinegar in lukewarm water with honey before bedtime, that seemed to have helped me a lot. I don't have that much of acid reflux or bloating anymore.

  • well that was the other suggestion - maybe up the cider to another spoon in the middle of the day too but take your supplements 2 hours away from the Vinegar or the Hydrochlorine supplement if you go down that route. Good luck .

  • Glad that's helping you. If you don't already know this, it's best to keep it away from your teeth (many people use a straw), rinse your mouth afterward and if you're taking at bedtime leave 30mins after rinsing before brushing your teeth. Acidic drinks like this (and juice, and vinaigrette salad dressing etc) soften tooth enamel (and you can then brush it away).

  • a fuller reply to the first comment :

    It is very common for Thyroid sufferers to have some form of gut problem – Acid Reflux, GERD, IBS, bloating to name a few – this is because problems with the guts microflora negatively affects the guts ability to convert T4 to T3 and even cause higher RT3. The general health of the gut affects T3 – because low T3 causes low hydrochloric acid production which causes inability to convert T3 and this will affect the absorption of calcium, selenium, Iron, iodine, Zinc the B and D Vitamins too.

    Also Try a good quality gut bacteria supplement.

  • Bio Kalm is an excellent probiotic and available from amazon as are jarrows or solgar b12 and compound vit b you need to take both

    pepsin/ betaine is also from same source

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