need help

i was diagnosed with hypothyroid 3 years ago. when i first started taking levo i felt AMAZING. last year i went to redo my test and my endo said i was a bit on the hyperthyroid side so she wanted me to take the same dose (75mg) but instead of 7 days a week i would be taking it 6 days a week..well since then i have put on about 40+ pounds and i have gone through severe depression and anxiety. My depression and anxiety seem to have subsided as well as weight gain..the problem is that i can not seem to lose the weight, Also my results after switching to 6 days a week have bee the following

TSH = 4.78

FT4= 1.1

im at an in between. first im hypo but then im hyper. why is this happening??

maybe i need a new dosage? maybe i need to be on other medications???

36 Replies

  • Rairaixoxo,

    Welcome to our forum and sorry to hear you are not feeling well.

    A TSH of 4.78 is too high for many when medicating Levothyroxine indicating you are under medicated. Many members function better with a TSH around 1.0 and FT4 in upper third of range.

    Depression, anxiety and weight gain can all be symptoms of low thyroid hormone. Your endo assumes you "well" because your results fall nicely in range but for many the range is too wide and patients feel better when medicated by symptoms as well as blood test results (which are only there to give an idea of thyroid happenings).

    Tell your endo how unwell you feel, particularly since the med decrease and ask for a dose raise.

  • How are you taking your T4 - away from foods hopefully - and milky drinks.

    You really need to need your FT3 result - which is a better indicator of you being over medicated. Doses should not be reduced on a whim without the FT3 evidence.

    Have you had your thyroid anti-bodies tested - Anti-TPo and Anti-Tg ?

    Also your levels of FERRITIN - FOLATE- B12 - VITD all need to be OPTIMAL. Have they been tested ?

    How you feel is so important :-)

  • What was your blood test result when your endo reduced your dose. From 75mcg to around 65mcg? You are best to ask for copy of blood test results. When you post them please include the ranges as well as these can vary according to the lab that has tested them.

    Seems to me you are now under medicated. 75mcg was obviously a much better dose for you. You had been stable on that dose for three years and felT well. Personally and this is only my opinion as I am not medic but it looks like your endo has made a wrong call here. I would contact his secretary and ask to speak to him letting him know what has happened.

  • no none of this has been tested. my endo only test for TSH and FT4 which i dont understand why..

  • I have a saying: Avoid a TSH n T4 doc like the plague!

    I am on my 4th Endo now who appears to be very good. As soon as I heard TSH n T4 from the first three, I changed docs immediately - after the 1st one nearly killed me. Oh, and don't bother to "understand" just get another doc.

  • hi MARZ

    i have started taking my levo at night a couple weeks ago & let me tell you it makes a huge difference. i actually have energy and i do not have nearly as many cravings as i use to. i only take with water and thats it.

    my b12, vitamin d or folate levels have NOT been tested but my red blood cell count was a bit on the lower end when i did a physical a few months ago. after doing my research i learned that this means anemia/ b12 deficiency. my GP didnt mention it im guessing bc it was low but not super low to the point of concern. My endo suggested i get my levels retested in october so until then i will be supplementing with b12 and vit D

  • I must mention this at least 3 times per day - once you are supplementing B12 - further testing is of little or no importance. So have it tested before and see where you are. Then lets us know. You may need 1000 mcg daily or 5000. Whichever you will need a GOOD B complex to keep all the B's in balance. Also have VitD tested before you start so you take the correct dose ....

    Glad your night time levo is working .....

  • Sorry my reply just sent...!! Was going to add:-

    Agree with others your TSH seems far too high and ft4 is very very low. So it his supports the fact along with your weight gain that you are under medicated.

    Always ask for your blood test results and keep your own file with a note of the dosage of Levothyroxine noted on them -this give you a great record of. How you are responding and trends.

  • I suspect the Free T4 is given using US units of measurement. US numbers look a lot lower for some thyroid measurements than UK ones do. But I'm only guessing.

  • Have you got the ft4 and tsh numbers round the right way? Also do you have the reference ranges?

    Otherwise agree with the above; you look under medicated as you're symptomatic. The endo should know that your tsh needs to be below 1 and ft3 and ft4 in higher ends of the ranges for you to feel well.

    Good luck

  • They are US units.

  • My husband takes Levo and our GP has been ok with him increasing until he feels well. His TSH is now 0.3 on 150mg. I think if you let Dr's know you feel unwell and want to.increase your Levo they will be willing to try as long as you are re tested 2 months later.

    As the change was so dramatic it would be worth looking at other factors,perhaps after you have optimised T4. My husband has found selenium and Co q10 have really improved his energy. I'm on NDT and have recently found vitamin A has drastically improved my energy (eating canteloupe melon every day). There's often a lot to consider in recovering your health. Any minerals and vitamins that help T4 to convert to T3 are worth checking or trialing.

  • Ignore your doctor and go by how you feel not numbers.

  • How is it possible to ignore your doctor when they are the ones that decide how much to prescribe you? I have never felt well on my 100mcg and after doing lots of reading and research asked if I could increase but my doctor said no that my TSH was fine (it has varied between 4.85 and 2.75).

    Do I just keep asking?

  • Change your doctor if he/she won't treat you as a person rathet than numbers on a spreadsheet.

  • if raucous is in the uk its not that simple to just change doctors

  • Yes I'm in the UK & as you say not always simple and you don't know if you will get a different attitude.

  • luckily im in the u.s and my endo just retired so i will have to get a new endo anyways.

  • Hi Raucous. I live in the uk and I did change docs with a good outcome -first time ever when I have not move locations!! However before moving I did some research. It is doable and you don't have to jump to another surgery without knowing if they will support you. PM me if you want to chat further.

  • I too am in the UK and moved doctors. I asked everyone I knew locally for recommendations, and picked the one recommended by my friend who had the most challenging personality. So glad that I did as I was finally diagnosed hypo (previous practice spent 6.5 years telling me I was menopausal/ stressed / causing my own symptoms due to being so fat).

    The other Ray of Joy was when I has the initial visit with the nurse, I told her I was using progesterone cream (I no longer use it but was trying anything at that point), braced myself for the lecture and she said 'well you know your own body'. The previous practice had a doc who had a shouting fit at me when I told her I was using progesterone cream (despite them offering no treatment for my alleged early menopause - which has still not hit 8 years after their diagnosis!) and again put my symptoms down to me self treating with quack remedies (despite the cream being recommended by a gynaecologist I'd seen separately)

    So, vote with your feet. You can see reviews of the practices on line, ask on the forum if anyone is close to you and can recommend a GP plus ask around.

    It was the best thing I've ever done for my health :-)

    Good luck

  • Raucous - you will never feel well with those numbers. Keep reading here and asking questions !

  • If you are not happy, get a second opinion - that is what I do Raucous :) At the end of the day, it is all very well the dr saying you are fine, but he is not you and you know how you feel. I think the dr's go by numbers because they do not really understand anything.

  • yes, because even at 2.75 your tsh is considered too high for feeling well, if you start your own thread with your blood results and ranges if you have them people will help with suggestions geared to your own needs :-)

  • Whispers I did start a thread with my results - - and have had some helpful replies, but I seem to be left with choice of going private or living with what I have

  • Nope you have a third choice, self treat :-) x

  • True but that basically means switching to NDT and I would really like some guidance rather than doing it in the dark what with combining vitamins, minerals etc. and knowing how much is enough. Gosh it feels like an uphill struggle!

  • Oh Geez Raucous, 4.85 and 2.75 are hypo ranges, that's why you feel ill.

    You could try "just keep asking" but I would go back to the dose you felt well on. Many people do not feel well unless their TSH is suppressed, i.e. 1.0 or less - I am one of them. Doc's do not like low TSH because they think it causes osteoporosis or heart problems. My bone density got better after 10 years of suppressed TSH, heart problems I know very little about although my blood pressure did increase when I was hypo and decreased when I approached hyper.I think you can get heart problems if you are on the wrong dose, be it too low or too high.

  • I am quite alarmed that she, I am assuming is your GP has told you to only take your medication for six out of the seven days - absolute rubbish and irresponsible of the dr to suggest that. I can understand her trying to reduce your dose to say 50 mcg for seven days then retesting you after a few weeks, but not this way. The stupid thing is, I have always been told. that too much is bad for you but if you are too low, they rather you be on the higher dose, which contradicts everything. I can understand the anxiety and depression, which comes I bet from frustration too at the way you feel and the weight gain. Have you been checked for B12 deficiency, anaemia and calcium deficiency? - basically your folate and ferritin levels! - this is for iron deficiency and the calcium is your vitamin D. These levels can have a major impact on tiredness and achiness etc. I would go back and ask for this to be done and if she refuses, go and see another GP. This one doesn't seem to know what she is talking about. The GP who started my problems off, dropped my dose from 200 mcg to 75 after 32 years on it (I was born with a partial gland, so have been on medication since I was five weeks old). So you can imagine what I was like!! It opened up so many problems and I gained at least 10lb per year for the next 15 years, I have been fighting to get the weight off ever since and as we speak. My husband has been accused of being an "enabler" this was thrown at him last week by a so called expert! I am now on 250 mcg thyroxine and 20 mcg of lithyronine, which is being stopped by the NHS because of cost, (big controversy over it) I am going to have to source it myself, but thankfully it is a lot cheaper to buy it over the counter and from abroad. Hope this helps and let us know how you get on. Message if you want to at any time.

    Take care :)

  • my endo only tested me for TSH & FT4 but not to long after i saw my GP and I had a physical done. My GP said everything was fine but when i looked at my results and read over and did my research i realized that my red blood cell count was a bit on the lower end which would indicate anemia/ a B12 deficiency. this was a couple months back but i had no idea that affected my thyroid. Iam going to supplement with b12 and vitamin D and have my levels retested in October ( like my endo suggested)

  • Yes it can cause real problems being anaemic. My sister also has a thyroid condition and was getting really tired, her initial test said it came back "normal" but when I questioned it on her behalf, I was told that it was indeed on the "low side" of normal and also she was positive on another test, (I think it was related to the plasma). Anyway, she is on two iron supplements a day and so far so good, everything gone back to normal. Due to be retested in August.

  • Read my reply above :-)

  • its not good to take the suppliments and then re test, the test will not mean anything, its best to test before supplimenting then you know where to start

  • good thing she just retired right after my last appointment LOL. I will be looking for a new Endo very soon which im actually excited about. hopefully this one decides to test for everything else

  • JOLLYDOLLY - I look forward to reading your replies - but after a little time I glaze over. Please could you write in paragraphs to make it easier to read.

    THANK YOU !!

  • Rairaixoxo, you ask 'why is this happening?' I presume you meant why have you gone 'hyper' when you started out 'hypo'? Well, two explanations, really.

    a) Have you had your antibodies tested? Because you could have Hashi's, and that makes you swing between hypo and 'hyper' (although it's not really 'hyper' in the true sense of the word).

    b) (and more likely) Your doctor doesn't know much about thyroid - not many of them do - and gets her medical terms mixed up! What probably happened was, the dose of levo you were on initially, lowered your TSH to under the range - happens all the time - and your endo panicked, thinking that meant you were 'hyper', when in fact it meant nothing at all! A low TSH, when you are on thyroid hormone replacement, does not mean you are 'hyper'. What she should have said was 'over-medicated'. But even that wasn't true, because you can only tell that by looking at the FT3 - which, of course, she didn't do. A low TSH, under those circumstances, is irrelevant.

    A little more precision in the use of the English language, by doctors, would make things a lot easier, and stop patients panicking. So, would a little more education in all things thyroid, but that's another story...

  • Spot on Greygoose!! 😊😊😊

    And what popped into my head was a room full of doctors all sitting patiently why we patients who have learnt about thyroid lecture them on what to look for, treatments, exposing the follies of the TSH and what a range really means -'normal' being the least accurate most miused word out of the lot in the medical world! Well it made me smile.....sad soul I am...

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