am I taking enough levothyroxine?: Hi... Hope... - Thyroid UK

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am I taking enough levothyroxine?

knownas6587 profile image
18 Replies

Hi... Hope someone can help me... I'm 30yrs old.. Female... And have struggled with obesity for the 15yrs of my life and it's gotten worse over the last four years or so... None of the diet or exercise routine worked... The last in an endless line of doctors suggested I check my TSH... And it turned out to be a whopping 46.4... And was probably a factor in my weight gain... So anyway I was glad when I heard it coz it meant I now also had an explanation for the severe depression, gastric reflux, lethargy, pungent sweat, dry skin and a lot of other stuff that had been plaguing me... The doc put me on 100mcg levothyroxine and for the next two days I was in an exceptionally good mood coz I was so relieved at finding out the reason behind my problems... But after a few days I kinda felt like I was slipping back into my old symptoms. My depression seems to b coming back, vague aches and pains, fatigue and the skin on my toes is now dry n has begun peeling off and to top it all off I didn't get my periods this month which is unusual for me... It's been three weeks now since I started my meds... I was wondering if this was normal or if I needed to see my doctor again about the dosage... I really appreciate if anyone could help me out...

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18 Replies
drll profile image
drll

You really need to provide not only your TSH number but also your T4 and T3 AND the reference numbers for all three measures-the ones in the bracket. That way it becomes possible to have a clear picture of what is happening for you. Sometimes doctors only request TSH, but you need all three and their reference numbers and sometimes you need to be quite forceful with doctors about this.

In have been on L thyroxine for a very long time and weight has always been an issue for me. Putting on weight if you are HYPO is a known side effect, and getting rid of it is also a problem. That is because your body/metabolism is running slowly and like yourself diets and gyms/exercise didn't work for me.

Get back with all of those numbers.

knownas6587 profile image
knownas6587 in reply to drll

The doctor only asked for TSH... I think I will get the additional T3 n T4 done as well... Thanks... My tests were done in India... So I'll b able to do it only next month when I go back... 😕 it's pretty expensive where I live right now (UAE)... I'll keep u posted... Thanks again...

Kathrynbaggott profile image
Kathrynbaggott

Your medication should not be making you feel worse. I would strongly recommend making an appointment with your G.P. to discuss how your feeling. Good luck hope things get sorted out soon.

crimple profile image
crimple in reply to Kathrynbaggott

Are you in UK? Are you able to pay for private blood tests from Blue Horizon? You can do a finger prick test at home which you post back and they email results. They will test TSH, T4, T3, Vit B12, iron, ferritin and folate and antibodies. You will need a separate Vit D test (city assays-also pinprick and postal test)

The sooner you know your thyroid levels and whether or not you need to take extra vitamins the sooner you can start to recover from such a high TSH level. It won't be a quick fix, it can take a year or more to normalise levels but hopefully you should begin to feel some improvement. The GP should retest every 6 weeks and increase your levo as necessary, but don't count on them doing that.

From personal experience it wasn't until I took matters into my own hands with a lot of help from everyone on this site that I started to feel something like normal.

Don't even think about exercise to lose weight until you have decent thyroid levels.

knownas6587 profile image
knownas6587 in reply to crimple

I live in the UAE but I'll b going to India next month where I can practically walk into a diagnostic centre and ask for any test I want... Don't need a doctor's note... 😛 I'll just do all the relevant tests and go see my doctor.. He asked me to return after 3 months but I think it's too long a time..

knownas6587 profile image
knownas6587 in reply to Kathrynbaggott

Thanks... The doctor said 3 months but I'm gonna go back to him at the end of six weeks... Or may be earlier depending on my symptoms..

eeng profile image
eeng

Your doctor has started you on a fairly big dose, but it's a best guess of what you will need eventually. He/she should have asked you to go for another blood test in 8 weeks or so. It takes 6-8 weeks for the Levothyroxine to build up in your system, so there's no point in going to your doctor again quite yet.

There are a couple of things you can do in the meantime:

1. Most people who have had a thyroid problem for as long as you have will be low on Vitamin D, B12, Folate and Ferritin. When you go to see your doctor next ask him/her to test these for you. You need the levels to be really healthy, not just average, for your body to make best use of the Levothyroxine you are taking. You should supplement these nutrients if necessary.

2. You should either take your Levothyroxine first thing in the morning, an hour before any drinks containing milk, iron supplements, or other medication, or last thing at night a couple of hours after you have eaten and away from other meds.

3. When you do go for your next blood test, have it done first thing in the morning, before eating breakfast, and don't take your medication for 24 hours before the test. That way your blood test results will be the best possible representation of your thyroid status and you are less likely to be undermedicated.

4. Gastric reflux is usually treated with meds to reduce stomach acid. Most hypothyroid people actually have Low stomach acid, which produces the same symptoms. Many people on this forum take either apple cider vinegar or betain to increase their stomach acid. This also help absorption of nutrients from your food.

5. I don't know whether you are taking antidepressants or any other medication, but you need to check the labels to make sure none of them interfere with your thyroid meds. If you are taking antidepressants you may well find you don't need them any more because hypothyroidism causes depression, so once your levels are right you may find you are OK.

The feeling of being better for a few days and then getting worse again is quite normal. Your thyroid has been trying very hard to produce the tiny bit of hormone it has been managing for the last 15 years, and now you are taking hormone supplement it has taken the opportunity to have a well-earned rest. Consequently although for the first few days you had 100mcg plus a bit from your thyroid, now you probably only have 100mcg. This is quite normal, and it can take up to a year or so to get your hormone level right.

If you have high levels of thyroid antibodies you may find that going gluten free helps.

I hope this helps and you feel better soon.

knownas6587 profile image
knownas6587 in reply to eeng

Thanks for taking the time to share all the info... It helped me understand a lot! I'm definitely gonna get those tests done when I go to india next month

eeng profile image
eeng

... and always get a copy of your results. You are aiming to get your TSH down to around 1, not just within the 'normal range'.

knownas6587 profile image
knownas6587 in reply to eeng

Will do 👍🏼

Cwhite1 profile image
Cwhite1

Yes I'd go back. It took me about 2 years to get to a stable level. I had to regularly go back for blood tests until my symptoms and levels stabilised. You should listen to your own body as only you truly know how you feel. If you don't feel ok go to the doctors. I used to be slim and my weight would just fall off but now I'm overweight and still struggle to get it off. I think it's possible but you need to constantly be active and cut out sugar and fat. I get tired and love food but I'm not really that fussed about my weight as I'm happy 😊 X

DiNiro profile image
DiNiro

I was on Levothyroxin for five years with no releave in my symptoms. Then I asked my doctor to put me on a combination of Levothyroxin an Liothyronin. This helped me a lot with my energy. But after only half a year it was as if I was put back like it was before - no release. In the meantime I had read and learned about the angent medicine Thyroid which is made from pigs thyroid gland. I have been on Thyroid since 2011 and my world changed to my old self. I even managed loosing 20 kg weight 🤗

Eddie83 profile image
Eddie83

Abbott says the T4 full-replacement value is about 1.7mcg/kg body weight. How does that compare to 100mcg for you? If your doctor tries to hike your levo way above that, you should be suspicious that the real problem could be T4->T3 conversion. Unfortunately the average doc does not know that many people cannot do enough conversion when given T4-only, and these people need to be on NDT or T3+T4. If the doc did only a TSH test, that is not sufficient. The full panel TSH/FT3/FT4/rT3/TPOAb/TGAb should be taken, but if you are held captive by the NHS, that isn't likely to happen. Private testing may be necessary.

Also, your conversion is dependent on other factors, such as adrenal hormones and nutritional status. You should be on nutritional supplements, esp. trace minerals, iron, B12, folate, D3, etc.

knownas6587 profile image
knownas6587 in reply to Eddie83

According to the value in Abbott I should be getting about 141 mcg... I'm only on a 100.... But like a lot of the replies suggested I'm definitely going to investigate n Have more tests done... Thank you

Sylvrfox profile image
Sylvrfox

There are some great responses here so I won't repeat them but you do need ALL the thyroid hormones checked; T4, T3, RT3, and the antibodies to determine if your hypothyroidism is caused by Hashimoto's, an autoimmune disorder. Knowing this will give you power to change your life! Two things I recommend; get the books "STTM-stop the thyroid maddness", and "The Root Cause". Both are excellent sources of information that will guide you toward optimal health. Second, join the Facebook group, FTPO-thyroid topics, for both Hashimoto's and gut issues. You can find it by googling it, be sure to put in Facebook when you search. I leaned more from that group than all the years I studied for my B.S. In biology. Good luck!

Learner1 profile image
Learner1 in reply to Sylvrfox

Agree with the last post about getting all the tests.

Also, T3, liothryonine, may be better if you're not converting from T4 to T3 properly.

And consider a gluten free diet.

knownas6587 profile image
knownas6587 in reply to Sylvrfox

Thanks for the references... 😊 looks like I've got some reading up to do 👍🏼

Jmay88 profile image
Jmay88

Here's huge help. Switch to Natural Desiccated Thyroid medication with both t3 and t4 and use this as your resource:

Stopthethyroidmadness.com

Take care!

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