Thyroxine lowered - feeling dreadful!

Hi all, I was diagnosed with an underachieve thyroid 20 years ago. I went to see my GP to have a routine blood test a few months ago and was told that my levels were too high. I was on 175mg and it was cut to 150mg. I then had another test and was told it was still too high and it was cut to 125mg, which is quite a drop in six weeks. Shortly afterwards I started to feel absolutely dreadful, and I still do. I've got terrible headaches (something I've never really suffered from), I'm waking up exhausted and can't concentrate. I'm also feeling very low/angry/weepy and weirdly have lower stomach pain, a sore throat (on and off), constipation and what feels like sinusitis symptoms (I've been taking a prescribed spray for over a week which hasn't made any difference). I guess what I'm asking is, could this all be due to the drop in thyroxine (I had another text this morning so I should get the results next week) or could it be down to sinusitis, or both? Can you get sinusitis symptoms is your thyroxine is too low?! I also came off the pill around the time of the first test, which I know can also affect thyroid test results, so it's all feeling rather confusing. Thanks in advance for any help - I'm feeling a touch desperate and really want some answers! Best wishes, Jo

Last edited by

58 Replies

oldestnewest
  • Indeed it could! Do you have any results to share?

    Often doctors will lower your dose based on TSH, when FT4 and FT3 are less than optimal and that's when problems like yours occur.

  • Hi there, thanks so much for replying. I don't have the results at the moment but I'm going to ask for the last three lots of results when I get my latest ones on Friday. I really am feeling wretched and even though my levels were definitely too high on the 175mg test wise, I felt a whole lot better! I had tests done via a private doctor a year ago and he said then that my T3 was 'disastrous' and so he upped my Thyroxine then. He was great but sadly a lot of £££ I could only afford to go a couple of a times.

  • Hello Jojozo,

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

    It is dreadful we have to pay to feel better.

    All your symptoms could be down to low thyroid hormones as you definitely sound under medicated.

    Post your results when you get them, complete with ranges (numbers in brackets) for members to comment. Also any other test results you have.

    Take care and be extra kind to yourself,

    Flower

  • It is a pain having to pay so much but I guess that hopefully once we can get it right, we can start to feel better! I'll post my results as soon as I have them. Thanks so much! Jo

  • You don't have to pay a private doctor for treatment of underactive thyroid. You can always self-medicate, try out the various forms of thyroid meds, try combos of them, get your life back, and the cost doesn't have to be huge.

  • It would be a hell of a lot cheaper! The one I saw was crazily expensive - so much so that I couldn't afford to go back. Are thyroid meds available without prescription?

  • Yes, they are. But you have to buy them online from certain countries abroad that have fewer regulations regarding the sale of medicines that are prescription-only in the UK. Levo, NDT and T3 are all available. If you are interested, do some research, decide what you want to buy, then ask a new question, and ask for recommendations via private message.

  • Brilliant, thanks so much. I'm going to get my results tomorrow and go from there. It does sound like I need to take matters into my own hands.

  • It's due to the drop in Levo, almost certainly. It sounds like you may have a doctor who's a slave to the TSH instead of treating your symptoms.

  • Thank you. I think I'll have to search another (less expensive!) specialist, or see if my doctor can refer me. Best wishes, Jo

  • Sometimes we have to find our own way 'with the help of friends' and it is trial and error but works quite well for a number of people. Read the first two questions in this link:-

    web.archive.org/web/2010103...

    There are also topics at the top of the page which might interest you. Any links within them may not work.

  • Many doctors are incapable of treating hypothyroid patients. They should never lower your doses according to the TSH alone. If you were having severe palpitations of high temp, yes but not the TSH.

    Go back up to your previous dose and tell him why you're doing so. Don't wait till you see him. Go to the date on this link:

    web.archive.org/web/2010103...

    Excerpt from above link:

    In my experience, most conventional endocrinologists, seemingly unaware of the bell-curve phenomenon, make a trouble-causing presumption: that researchers have scientifically established the safe and effective dose of thyroid hormone for all human beings. That dose, they presume, is one that keeps the TSH and thyroid hormone levels within their reference ranges. This, however, is a false and scientifically unjustified presumption.

    Many patients know the presumption is false; they know it’s false because they, like you, become and remain ill when their doctors adjust their thyroid hormone dose according to the TSH level. I know the presumption is false for three reasons: (1) I've studied the research literature which shows that the presumption hasn't been established. (2) I've objectively assessed the tissue metabolic status of patients whose thyroid hormone doses were regulated by TSH levels and found the tissues understimulated. And (3), I've seen hundreds of such patients—formerly kept ill by TSH-adjusted thyroid hormone doses—fully recover their health when my cotreating doctors and I treated them in violation of the guidelines of the conventional endocrinology specialty.

  • Thank you, this is so helpful! I'm going to up my thyroxine and I have no doubt I'll see a difference. I certainly didn't have any palpitations or anything on the higher dose. I've just been reading up more and all of my symptoms point to the lowering of my dose. Best wishes, Jo

  • Did you take your levothyroxine in the 24 hours before the tests were done ??????????

    What were the actual results of those tests ( get a copy from the Doctor ) and post them here

    NO DOCTOR has any right to reduce meds you have been fine on for so many years

    Go back and INSIST that your 175mcg dosage is restored pronto because you are very clearly suffering almost every hypothyroid symptom there is

    I would even dare to suggest you were not even on enough at 175mcg to have gone downhill so rapidly

  • I did take my thyroxine. I wasn't advised not to - is that the best thing to do? I didn't realise the sinusitis could be such a strong side effect. Now I've read up on it it's so obvious what's going on! Best, Jo

  • You should leave 24 hours between your last dose and the test. Have it as early in the morning as possible - at least before 9.0 am. Don't have breakfast before the test, just water, as eating will lower your TSH. Always try to have the test at the same time. Doctors Don't tell you all that because they Don't know!

  • ... And don't care, in many cases.

  • You are dead right. I am on NDT where it is very clear that T3 varies throughout the day (because it doesn't last very long in your system). I asked my doctor what time of day I should have the blood test - CRICKETS!

    She did answer NO to my request for a T3 and reverse T3 measurement however, how useful.

  • They just have no idea.

  • Also, it sounds to me like after the first reduction in dose you were given a repeat blood test almost immediately? You should wait at least 6 weeks after a dose change to take a blood test.

    Levothyroxine stays in your body for a long time (it takes something like 10 weeks to clear the body altogether). So that second blood test won't have been at all accurate about your current dose .

  • I think it was around a month. Could the 50mg reduction have kicked in this quickly? (From around mid June) I literally don't know what to do with myself I feel so dreadful but it all feels quite extreme.

  • I don't think the blood result will have changed that quickly. Levothyroxine has a long half life. I don't remember exactly, but it's around 2 weeks. So really your body will have had no chance to catch up.

    In terms of feeling the difference, I'm more familiar with increasing than decreasing, but I'm sure you will have felt it by now. I've often felt the difference in increasing dose within days, when really it should have taken a bit longer. I think our bodies can be very sensitive to it.

  • Half life of Levo T4 is 7 days.

    T3 is much shorter, I've seen 12 hours and 4 hours quoted.

  • Thanks everyone, this really have been invaluable advice. My doctor even said she thought she may need to lower my dose more the other day as my symptoms sound like hyperthyroidism, but that seems crazy. I didn't have hyper symptoms when I was on the higher dose and actually felt a hell of a lot better, so why would I have them on the lower dose?! I feel well equipped to go back in there and argue my case now! Jo

  • Yes, your doctor isn't thyroid-literate, is she. If you listen to her, she's going to make you - and keep you! - very ill. Any chance of changing doctors?

  • I think it would be a good idea! She's offered to refer to me to an endocrinologist but I think I'll need to be very firm with her about my meds because I've been in such a mess. I'm going to up my dose again from today. I'm not sure how long it will take to kick in but I went downhill pretty quickly so hopefully I'll go uphill quickly again too.

  • I'll keep my fingers crossed for you that it does. :)

  • Went thro' exactly the same thing jojozo. I was nearly dead with hypothyroidism when my doc said she wanted to lower my dose (of Levo T4) because my TSH was imperceptible. I felt like I was about to have a stroke. I have given up with docs now and I'm self adjusting on NDT.

  • Sorry, I somehow totally missed your post. That sounds completely ridiculous. I really hope you're feeling better now?

  • What's self adjusting on NDT please. I have had this experience too lately. Fron 150 to 125 and feel tired, fuzz brain, depression. I need to ask the Dr but don't hold out much hope, so how do I seld adjust if my dr won't up the dose. X

  • NDT stands for Natural Desiccated Thyroid, it is the dried thyroid of a pig (or cow, or sheep - but these days normally pig). I know that sounds terrible - but that is the best source of thyroid. The advantage of NDT is that you not only get T4 but you also get T3, T2 and T1 (and some other stuff I am not too familiar with). This has the advantage of giving you a good dose of T3 if you are a "bad converter" of T4 to T3. That was my problem and why I had to drop Levothyroxine. It is T3 which gives you energy and makes you feel good. T4 is just the source material.

    The trick to starting NDT is to start low and increase slowly until you feel well. Bare in mind that you will probably have to split the dose (I take a maximum first thing in the morning then the rest 1/2 hour before lunch). This is because the T3 component only has a half life of about 8 hours (some say 4, some say 24) regardless of it's half life you will be able to tell when it has worn off because you will become a bit tired. The next day you will know exactly when to take the second dose.

    If you have a good GP you will not have to self adjust because s/he will take the necessary blood tests. This is the best solution. I am lucky enough to be on Armour NDT but I have a GP who is TSH centric so is always wanting to reduce my dose - but I ignore her, I get my own blood tests (from a lab who advertises on the internet) and I adjust my dose to optimal levels. Optimal being where I do not have any bad symptoms nor get sleepy in the afternoon.

    Do read as much as you can around this subject because, as you can tell by sites like these, we are very much on our own.

  • So you are not getting any medication from the doc, and are handling this totally yourself. Did you withdraw thyroxine and onto natural or combine? Many thanks for your detailed reply. X

  • Hi Gilliandf, Ok, first the switch over. I went cold turkey on the Levo and started on 1 grain (60mg) of Armour (an NDT) the following day. About 10 days later I added the 1/4 grain (15mg) because it is wise to ramp up and so far I was getting my Armour from the doc - although she forgot to state that you need to ramp up the dose, never mind, I knew. I stayed on this for about 7 weeks - when my doc told me to reduce the dose (because my TSH was low, whoooo!). This is when I went solo as far as dose goes (because I was falling asleep in the afternoon) there was no way I would reduce that dose. So I added the extra 1/4 grain (mid day) - my doc doesn't know but might find out in about 6 months when my prescription runs out earlier than it should.

    If she actually notices or does the calculation and prevents me from taking 1 1/2 instead of the 1 grain she wants me to take then I am completely on my own and will need to buy my Armour from a reputable distributer from the Internet.

    I read on this site that the "average" NDT dose is 3,4,5 grains - and here I am fighting for an increase of 1/4 grain! Something HAS to happen in management of this disease.

  • I agree. Forums have been full of people all crying out for help and struggling on their own without support for years but nothing is ever done! The one thing that surprised me was that you actually got a GP to give you it!!! I have asked b4 - but I'm not good at badgering - and been brushed off. I did not think UK GPs would prescribe it unless private. Many thanks for your replies. I appreciate it.

  • Never never never take any thyroid meds in the 24hours before a blood test

    It totally skews the results and creates the situation you find yourself in

    Doctors wont tell you this and they will try to tell you it does not matter BUT IT DOES

  • How crazy that I've never been told that and I've had tons of tests! Thanks, I'll know next time. I'm going to ask for another test in a few weeks and I'll be sure not to take any thyroxine beforehand.

  • Get the first appointment early morning when TSH is at its highest. Latest research shows fasting raises TSH as well.

    You want a high TSH level so your doctor will reinstate your higher dose without to much of a fight.

    Flower

  • Brilliant, I will do. Thanks Flower!

  • You also have to fast before the blood test:

    Also, blood should be taken fasting - don't have breakfast, and don't drink anything except water. Drink sensible amounts of water - dehydration and over-hydration can affect blood test results.

  • That's a difficult one, because I don't give blood at all easily. Every time I get the same question, "is it usually this difficult to find a good vein". Me "yes and last time they said I should ask for a child-sized needle." They also encourage me to drink copious amounts of water (as I did on Tuesday morning when I last had my blood drawn for thyroid levels).

    What impact do you think this will have?

  • I hope it doesn't have any effect . Hopefully it would have a swelled your veins so that the blood would be sufficient. :)

  • As well as hydrating it is advised to arrive hot & sweaty...lol.

    I have therapeutic phlebotomy and have been told to walk quickly up the steep hill to the hospital in order to get the blood pumping and then it flows more easily.....yuk..!!..

    Flower

  • They obviously have no idea how under-dosed hypo people feel, with fatigue, exhaustion, slow pulse etc etc. They'd be near collapse :)

  • ..and then there would be even more issues to deal with..

  • Good to.know reallyfedup, I never knew this before. Thanks

  • it's all became very clear now! My doctor is trying to tell me that - because in her opinion I've been taking too much thyroxine - my symptoms are to do with hyperthyroidism. I've just done an online test and I have 60 hypo symptoms and 7 hyper ones. I've printed out both tests out to take in and show her when I got tomorrow. I realise it's impossible for doctors to be experts in every field but I am a bit cross I've spent the last month feeling horrendous because of this when it could have been avoided.

  • I seriously doubt you have 7 hyper symptoms

    some hypo symptoms mask as hyper especially if you have hashimotos

    Best not to tell your doctor you wont be taking thyroid meds for 24 hrs beforehand in future we don't want GPs knowing what we know about TSH testing

  • Oh, completely. They were the symptoms that overlapped with the hypo ones (there does seem to be some crossover, such as aches and pains and mood changes) and I do have hashimotos (my doctor looked at me completely blankly when I told her that. I was diagnosed by a private doctor I saw). And no, I won't mention anything about the tests!

  • NEVER let your doctor reduce your meds based on blood tests alone, insist on the full gamut of testing (physical) as well.

  • Hi Jo I've had exactly the same scenario as you, was on 175mg and dropped down by gp first to 150 and then 125 within 6 weeks. I called gp and had a telephone appt 2 was ago and was told to alternate between 150 and 125 till my next blood test. I have also had lots of symptoms which I haven't had for years.

  • It's so frustrating! Did your tests come back high too? The annoying thing is that I've been back several times feeling horrendous and my doctor hasn't once linked it with the reduction of thyroxine - I did that. And she also didn't know that your results can be affected by coming off other medication (in my case, the pill). The tests I had six months ago came back totally find on the 175 so something's sent it out of whack. I realise GPs aren't experts but I would have thought she would know a bit more than she does.

  • Unfortunately I'm not surprised :( They tend to know vanishingly little :(

  • Hi yes my results were high too, and I was told it could affect my heart if it remains so. I queried why it was suddenly too high, have been on levothyrixine for 12 years and was just told that your body's needs change over time. I don't know if hormones have anything to do with it..I'm 51 and haven't had a period for 4 years. I'm just feeling whacked, my skin has gone really dry, hair thinning again and put half a stone on since June when my dose was lowered.

  • That is exactly what happened to me and I ended up with TMJ as well as lot of other things like high cholesterol. The TMJ caused damage to several of my molars and now I have to have one implant and a reroot canal treatment and new crown.

    The TMJ went away after I insisted my thyroxin be put back to higher dosage and my cholesterol went down as well.

  • Haven't had tmj Karen09 sounds really painful.. Discussion on here is really helpful though. Have remembered the Dr said my tsh was suppressed because I was taking too much thyroxine and this might cause arrhythmia. This was the reason given for reducing the dosage.

  • Karen, TMJ sounds really horrible, you poor thing. And Jacqueline, those sounds like such classic, annoying low thyroid symptoms you just don't need. I wasn't actually given a reason to lower my dose other than my levels were too high. Nothing was explained to me. Karen, was your doctor okay about upping your dose again?

    I've also put on weight in the last few months, despite having less of an appetite and eating healthily. My insomnia has also returned with a vengeance (something I'd finally cracked after years) - hence I'm posting this at 6am despite not getting to sleep until 1.30am! Zzzz...

  • I have had this same experience too lately. From 150 to 125 and feel tired, fuzz brain, depression. I need to ask the Dr to raise it again but don't hold out much hope, so how do I self adjust if my dr won't up the dose. X

  • You could either

    a) Increase your dose of levothyroxine yourself without telling your doctor, which obviously means you will have to order a repeat prescription more often. So that idea will only work until someone twigs what you are doing then gets you into trouble.

    b) Or you could self-medicate with levo or NDT or T3 bought on the internet. If you want to buy thyroid meds online, post a new question and ask about buying levo or NDT or T3 from reputable websites.

You may also like...