So after seeing my endo, referring to the top results she told me to reduce to 75mcg from 100mcg, she said taking the levo before the blood drawn would not affect results so i reduced to 75mcg for a week and with advice from people wanted to test the theory of taking the levo on the day of the blood drawn and surprise surprise the bottom results are what came out!!!...
Im fine physically but losing weight fast but dont know if thats the stress as iv been an emotional wreck with anxiety and mood drops daily since my bloods went dodgy last october.. i believe all along i needed 125mcg..
Anyway my question is should i take 100mcg and maybe a half of 25mcg as i was on 100mcg up until a week ago when the endo dropped it to 75mcg and see if theres any improvement? As the top results show i probably need a little more than 100mcg dont u think? And the ft3 is pretty good too...
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ThyroidObsessed
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I honestly fail to see why your doctor told you to decrease your current dose from 100 mcg to 75 mcg daily...your FT4 levels may be slightly out of range, but that can be necessary in order to keep your FT3 levels optimal. Yours are not even midrange, so I don't see what your doctor is obsessing about. Also, it's surprising to see a TSH above range when FT4 levels are slightly above range...as high FT4 levels tend to lower the TSH. An optimal TSH reading is said to be around 1 when all hypo symptoms are gone and the FTs optimised. From what I've read, and know from my own experience, a TSH above 2 is in itself a sign the thyroid gland is beginning to struggle, as it seems most healthy individuals (without even latent thyroid disease) have a TSH closer to 1.
Your test results are not the ones you'd expect to find in someone who is symptom free, yet has above-range FT4 levels along with a slightly suboptimal TSH (as I said, it should be closer to 1, and not above 2 in any case) and below midrange FT3 levels...
Can I ask why you were put on thyroid hormone replacement in the first place? What is your original diagnosis?
If you feel fine for now, no reason to panic, but I think it would be worthwhile to try to find out more as your lab results are rather atypical (at least IMHO).
Thyroxine is typically prescribed for low thyroid (hypothyroidism). Yet, you are losing weight, and most hypothyroid patients tend to gain weight or find it difficult or even impossible to lose weight. Another reason I wonder why you were put on thyroxine in the first place?
Hi thanks for your reply, i was diagnosed 9 years ago with an underactive thyroid i was falling asleep all the time and thats when they did tests and basically said u need to take levo for the rest of your life and thats it!.. iv only recently had my antibodies checked which showed very slightly high antibodies which i presume mean i have hashis..
I have been fine on levo for the past 9 years and not really any physical symptoms, iv always been slim and have noticed that when i go hypo i lose weight instead of gaining, i know a small percentage this happens too... it wasnt until oct last year that i was put on the teva brand of levo new formula that i had bad side effects and my tsh shot up but ft4 was still high.. since then anxiety and depression kicked in and weird daily mood drops one minutr happy next minute sad.. i stopped levo all together for 13 days debating whether i needed it or not, my tdh shot to over 100 so definitely need it so i changed back to the actavis brand in feb this year but started slowly from 50mcg and worked my way up to 100mcg to then be told i need less!... anyway i just think iv always needed more than 100mcg and thats the problem all along?..
Also the top results were taken when i had also took the levo on the day which people on here say its a false reading??
In my experience (and I was on levo only for ten years), T4 drugs won't affect your readings, unlike T3 which should not be taken until after going to the lab (and no later than twelve hours before having labs). T4 has a long half-life (about a week), so it's not likely to make your FT4 levels skyrocket even if you go to the lab right after taking it. During the ten years I took T4 only, I took it both before and after going to the lab, and it never made any noticeable difference. Everyone may not agree with me, but that is how it worked for me.
Maybe this new brand of T4 you're taking does not suit you...I know others here have written about not doing so well on certain brands. Would it be possible for you to switch to another brand of T4, to see if you'd feel better on that one...?
You're lucky to do well on T4 only, as many thyroid patients (me included) need to look for alternatives. I think there is a brand that's right for you, but maybe not the one you're currently taking...
Yeah a hell of a lot of people on here say that it makes a massive difference and i proved it with the bottom results as i didnt take it on the bottom test and had only reduced to 75 for 4 days so surely the results wouldnt drop that fast if it only has a half life... as for change of brand i was always on actavis brand which i have been fine on for 9 years until they changed me to teva brand, but like i said im back on my old brand of actavis... i believe my symptoms are a result of not been optimally dosed yet and that i need a little more.. suppose we all know our own body and needs dont we...
There are a number of reasons why your TSH could vary, not least because there are small natural variations in each day. I agree that with LT4 it would not make much difference taking it before or after your blood test because the medicine has a long half life, about 7 days. Best to stick to doing the same thing each time though as you will feel more confident about the results.
If it were my results I would increase to 100mcg again and see how I feel. Test again and then decide whether to add the extra 12.5mcg. Most people here say they feel better when their TSH is nearer to 1.0 and I don't think the FT4 level is particularly relevant. If the FT3 level goes above range though then you would know you were getting hyperthryoid and need to reduce meds. At least that's how I understand it.
Im on 100mcg already as the endo told me to reduce to 75mcg going on the top results but after being on 75mcg for only one week and gettin bloods done again without taking the levo the day of test the bottom results are what came out??
Do you think even a slight activity of antibodies could create variations in results? Perhaps you could increase the dose slightly and retest in 6-8 weeks to find out where you are heading? I don't have Hashimoto's so you could ask other people with experience of antibodies. What did the endo say after the second lot of results?
Im not sure to be honest.. like i said my levels have been stable for the past 9 years, it was only when my tsh went above 1 last oct that i started with problems not physically but mentally, anxiety depression, mood swings irratability to the point its severely affecting my life and family...
The endo hasnt seen the bottom results as i saw her after the top results and she said to reduce to 75 and she would see me again in 4 months!!
but i decided to have bloods done again a week later without taking the levo on the day of the test and the bottom results are what came out!!.. so im just so confused in what to do now, iv tried calling the endo but shes always busy!!
I'm wondering if your antibodies have become more active? That could explain both the symptoms and the variation in blood tests. Are you on a gluten free diet? Many people with Hashimoto's find that this reduces antibody attacks. If your thyroid is attacked, the antibodies destroy some of the thyroid function and you then become more hypothyroid which could explain the higher TSH level on the second blood test. As I say, I don't have much experience of this so you could ask someone with Hashimotos.
Hi, I also had a poor reaction to teva, I only took it for 3 weeks before switching back but am still getting over the joint and muscle issues it caused nearly 4 months ago so potentially it is still working out of your system.
I would give yourself 6weeks on 100mcg and see how you feel as it takes that long to assimilate the dose change and it sounds like you felt pretty optimal at that dose previously. If after six weeks you still feel unwell/ sympomatic go up another 25 mcg.
Yes most feel best at a TSH of one or less but the range is there for a reason different people feel well at different levels. As you are already aware a typical hyper symptom is actually a hypo symptom for you.
Just be aware a small 25 mcg dose change can have quite an effect on bloods my TSH dropped from 5 to 0.05 and my FT4 finally jumped from the 16s to top of the range when previous raises had barely moved either (all results on my bio). That said your FT3 still had plenty of room for improvement on the top result so 25mcg is unlikely to push it too high. It looks like you need top of the range or slightly over FT4 to achieve adequate conversion.
Have you had your iron, vit d, b12 and folate tested? most of us are deficient and unless above certain levels proper conversion doesnt occur mine were dire and I certainly feel much better since addressing, unfortunately the FT3 test failed last time so cant see if FT3 has improved yet. If you dont self test I highly recommend it especially if you are going it alone at least then you will know what your new optimal is if you get there before next endo appt and can argue the toss with them better.
Try ringing them again quote the results and tell them what you intend to do if you do not get a callback within x number of days. You are likely to get a message saying carry on or they will finally fit you in even if by phone. Tell them that you have taken advice from TUK (as signposted by NHS Choices) and taking levo before blood draw most certainly does give a false high FT4 reading!! I always fast and leave off levo before docs now just incase they spring a blood test on me....
Stick to your guns and point out you were well til they mucked you about unnecessarily and you are going to fix it with or without them, but you but obviously with is better if possible.
Hi phoenix.. thanks for all the info!! Much appreciated... yes levels went off when my brand was changed to teva went into a severe depressive state when on them with severe anxiety and allsorts of problems.. iv been back on actavis since feb this year and still trying to stabalise them.. i was on 100mcg for 5 weeks after the top blood test so thats why i believe i need 125 to get back to where i was before when i felt normal mentally and not going crazy because thats how i feel at the minute its horrible, i believe when i go hypo i suffer mentally rather than physically and also lose weight instead of gaining!! But iv always been slim anyway..
I had my b12 tested and it was at 346 and folate and ferretin were in range but at the lower part.. vitamin d is high in range so thats great... iv also changed my whole diet so now i eat liver at least once a week for iron and b vitamins and i eat lots of spinach and fruit too so hopefully that will help as dont like taking any medications im a tablet phobe i dont even take paracetemol if i have a headache.. the only thing i will take is my levo...
Yes i believe taking the levo the morning of test definitely changes results mu endo says not but we all know they are useless unless u get a good one!!
My endo did call back and told me to go back on 100mcg but iv started 125mcg from today as thats what i believe i need...
I too suffer from depression, anxiety and paranoia when undermedicated so you are not alone, wish I had your weight reaction too as I have put on a serious amount of weight over last few years! As you have already been on 100 for five weeks going up to 125 now is not an issue, you just cant raise too quick, over medicated feels as bad as under and symptoms can be similar so you dont realise you have missed your sweet spot.
After poling for advice on here this is the vit advice I was given:
B12 -over 500 and up towards 1000 if possible. 500 is minimim in most other countries as get cognitive and neurological effects below. Helvelva quoted alzheimers research the other day which suggested 1000 as desireable, plus you excrete what isnt needed so hard to overdose on B vits.
Folate - mid range is fine
Iron - above 75, seaside susie recommends 200g liver twice a week to raise levels as too big a portion is counter productive. She then found 200g every 7-10 days kept her level stable.
Vit D - around 100
K2 Mk7 and magnesium - these are both vit D co-factors and help ensure calcium is directed to bones and teeth rather than soft tissue like arteries where it causes problems. Magnesium can be taken as a spray oil on the skin if prefered as it is depleted in much soil these days and helps any dry patches as an added bonus 😁
If you can do it with diet great but most of us have gut absorption issues. you may struggle with the B12 and folate and very likely with vit d except in the summer as uk sun is so hit and miss normally. May be worth popping over to pa society on here as they may have better insight for good natural sources of B12 and folate at least. I know there are a few 'natural source' supplement companies on amazon if it comes to it.
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