Hi everyone, I have posted here a few times about my issues with levothyroxine and have received some amazing responses which have really helped!
Last year my levothyroxine dose was increased from 50mg to 100mg as blood tests showed my TSH was still on the high side. Also I couldn't lose weight- no matter how hard I tried and I have very thin hair.
After my dose was increased, I put on 2 stone within 7 months and during that time I was trying to LOSE weigh! I ran 5km 5 times a week and ate 1,200 calories or less per day! I went to my GP and he was so rude and implied I was lying about my diet and exercise as he said 'The fat's coming from somewhere!!' I was referred to a dietician and monitored my food intake and exercise for 6 weeks on 'my fitness pal', she confirmed that I should have lost at least 2lbs per week, therefore 12lbs over the 6 weeks, but instead I had gained 4lbs over that time. It was only at this point that I realised the ONLY change I had made was the increase in levothyroxine and that's when I messaged on here.
It's been about 8 months and I have finally seen an endocrinologist and had a blood test to measure the relevant levels. My results are as below:
Free Thyroxine (FT4): 14.2 pmol/L. 7.0- 17.0
Thyroid Stim. Horomone: 3.65mu/L. 0.20- 4.50
Free Tri-iodothyronine (FT3). 6.0pmol/L. 3.5-6.5
Short Synacthen Test. cortisol at 0 min: 270. 30min: 561
Serum vitamin B12: 273ng/L (145-910)
Serum folate: 8.1ug/L (3.0-20.0)
Serum iron level: 9 umol/L (9-30)
Transferrin saturation index: 14% (15-45)
Based on these results, I was told my results were fine and all within a healthy range, however I called the endocrinologist and told him that no matter how hard I try, I CANNOT lose a single pound of weight, I have very thin hair, suffer from random migraines and often feel light-headed/ have low blood pressure. He suggested I should increase my dosage back up to 100mg but because that caused me extreme weight-gain I just can't do that- it evidently doesn't work well for me, especially as an increase is supposed to have the OPPOSITE affect! Based on the fact that although my results, in his eyes, indicate everything's normal, it definitely isn't and he's agreed to see me for another appointment and referral.
Please could you let me know what you think of these results?
Thank you sooo much xxxxxx
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vida_sana
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Thank you for your reply, here are further results:
Serum vitamin B12: 273ng/L (145-910)
Serum folate: 8.1ug/L (3.0-20.0)
Serum iron level: 9 umol/L (9-30)
Transferrin saturation index: 14% (15-45)
I will add this to my original post.
Yes, Doctors have suggested to increase my levothyroxine dose to 100mg (I am currently on 50mg after going down from 100mg after it caused me to gain 2 stone in weight in a very short amount of time.) For me the main issue is that I genuinly can't even lose 2lbs of weight no matter how hard I try! I know I'm eating and exercising enough to be losing at least 2lbs a week but I'm constantly just gradually gaining weight. I've had this problem since I was about 12yrs old (I'm now 24 and it's ruining my life.) I also have severe hair loss which gradually got worse since I was 12, now it's so bad I can't even leave the house!
Levothyroxine dose should only be altered by 25mcg at any one time. It often needs extremely fine tuning.
Suggest you read daily posts and learn as much as possible about how to get levels fine tuned
Iron is very low. You need ferritin tested.
Is GP prescribing iron supplements?
Eating liver or liver pate once a week should help improve iron and ferritin. Other iron rich foods plus daily vitamin C should improve iron absorption
B12 and folate both on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
You need vitamin D and both TPO and TG thyroid antibodies tested
Strongly suggest you get FULL Thyroid and vitamin testing after 6-8 weeks on constant dose of Levothyroxine and improving your B vitamins and iron
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Would suspect you have Hashimoto's, diagnosed by high thyroid antibodies.
Getting vitamins optimal is first step
Retesting thyroid and vitamins
May need Fine tuning Levothyroxine dose
If you have Hashimoto's, very common to need strictly gluten free diet
Come back with new post once you have had bloods retested and results and ranges
Starving yourself or over exercising is likely counterproductive as it lowers T3
Were these labs done on 100 mcg levo? No T3? Because those are the results of someone taking T4+T3. I'm pretty sure nobody converts that well.
Last year my levothyroxine dose was increased from 50mg to 100mg as blood tests showed my T4 was still on the high side.
Don't you mean your TSH was on the high side? I doubt they would have increased levo if your FT4 was on the high side.
he said 'The fat's coming from somewhere!!'
And, you should have said, 'ah, but is it fat?!?' As your hypo, it's more likely to be water, in which case diet and exercise will not get rid of it. But, doctors know so little about thyroid. He wouldn't know, for instance, that all that exercise and low calorie diet were probably making you more hypo - that doesn't seem to be the case at the moment, but I really have my doubts that those labs are correct, unless you're taking T3. Do you take biotin in any way? In a B complex, for example? If so, did you stop it 5 days before the test? If not, that FT3 could be well and truly skewed.
Hi, those results are from taking 50mg of levothyroxine daily. (I decreased my dose after the 100mg made me gain so much weight).
Yes, sorry- I meant my TSH was on the high side- that's why they increased my dosage of levothyroxine (sorry, it's all so confusing I feel like I'm having to train as an endocrinologist myself haha!)
Yes, that's true about the 'fat'/ water! I don't know if it's fat or water but it 'feels' like fat, although I wouldn't know the difference. I've always just had a lot of fat around my stomach in particular which I have seen is associated with problems with the thyroid. Yes, he didn't know anything about the thyroid at all- that doctor was no help!
I have also seen that low calorie diet and exercise can make the problem worse so I have eased off with the extreme calorie controlled diet and exercise but still not lost a pound!
No, I'm only taking 50mg levothyroxine, spironolactone (to help with hair growth- I've been on this since September 2018) and also cerazette (contraceptive pill). I don't take biotin or B complex.
How to tell the difference between fat and water - try the pinch test.
I have no idea what it means with the results. To have an FT3 that high on only 50 mcg T4, is amazing. But, I wonder if you've had your antibodies tested? Or, it could be a simple laboratory error, and if I were your doctor (NB I'm not anybody's doctor!) I would want that FT3 repeated.
You do take levo on its own and wait at least two hours before taking the other supplements, don't you?
Oh, is there no end to their ignorance! Of course they will interfere with each other. Thyroid hormone should always be taken alone, at least one hour before eating or drinking anything other than water, and at least two hours away from other medication or supplements - four hours for some of them.
Having a high in range FT3 would be good, yes, but given that you are taking 50mcg levo only, I don't see how yours can possibly be that high. It must be a lab error.
So, if you couldn't pinch your skin, you have what is called mucin, a mucousy substance under the skin that holds water, and is in abondance in hypos. Diet and exercise will not shift it - nothing will that I know of. But, getting on the right dose of thyroid hormone replacement would help.
Oh wow, thank you- I will definitely start taking levothyroxine as you suggested- I guess it does make sense that other tablets will affect it.
That's concerning. I fought so hard to get this test and the results as you said just don't add up.
That makes sense about the fat/ water because I have tried everything to lose weight- including restricting my diet to virtually 1 meal a day and I lost nothing!
The endocrinologist initially said that because all my results were within the healthy range he was going to discharge me as he said 'everything was fine' (even though they are FAR from fine!) and....leaving me back at square 1, however I called up and said there's still no explanation for my symptoms so he said I could come back for a follow-up appointment although I don't know when that will be. (I had to explain all my issues again over the phone though so it doesn't sound like he had my notes available when looking at my results which I thought would have been quite essential considering my very bad experience with levothyroxine and symptoms.)
Thank you, ah I really hope they let me get the test again! I've had to beg and beg for this test, the first time they dropped my blood sample, the second time they failed to test FT3 and the 3rd time it seems like the results are wrong! Ahhhh when will this end!
Thank you so much for your information though, I had no clue what the results indicated and when I researched it, it didn't make sense- which further supports the theory that the reading is wrong.
You can't take any one result in isolation to get the whole story. If you are just taking T4 and your FT4 is just over mid-range, like yours, your FT3 cannot be up the top of the range. The FT3 is usually slightly lower in range than the FT4. Which is why I think there's something not quite right, there.
Also, I doubt your TSH would be that high if your FT3 were really at the top of the range. The TSH should be a lot lower, because at the moment, it's saying you're still hypo.
What is the link to this video? I’d like to show my doctor. My arms and legs are the same - can’t pinch skin. I am hypothyroid and currently being treated. But not sure I’ve ever been “optimal”.
Question: will I ever be able to pinch my skin? Or is this just the way it will be now for me, whether I’m optimal or not?
Difficult to post the link without it becoming the video…
youtube.com/watch?time_cont... Don't know if this will work. But, if you click on the video, then click on YouTube, it will take you to that video on YouTube, and you can copy the link from there.
Low calorie diets works opposite actually - it destroys your slow metabolism even more, you have to get enough calories. For me personally was a huge difference and positive when I completely cut out gluten, sugar, grains...I went Keto + intermitent fasting + prolonged fasting, so even with zero exercise (apart from running around 2 kids) I was able to loose nearly 50lbs in 6 months and I feel way better. Have my blood done today as I was not converting properly, retesting after 8weeks if adding T3 helps. But changing my diet completely was a life saver for me, hope that helps
I'm still trying to understand it myself - but as mentioned, need to look into your ferritin. Since your iron and transferrin saturation are low, this may be a big key to your problem.
I was going through the same thing - seemed to have so much less hair. Kept eating less & less just to not gain weight, other symptoms. Moved up my testing - thyroid levels were ok, blood iron OK, but ferritin lowish, TIBC high/transferrin saturuation low.
Think this has been an ongoing problem with me too - ferritin was low years ago before I became hypothyroid, and a couple of years ago, but I didn't iron tolerate supplement well.
I'm maybe not absorbing nutrients as I don't shy away from beef, which is something else I'm looking into myself, but have upped my digestive enzymes and iron foods, found a different iron supplement. Haven't lost weight, but am eating more and haven't gained, feeling better, mood is better.
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