hypothyroidism or hashimotos disease

hi all, I'm not sure if anyone can advise me? I'm new to the site today and did allot of reading last night going through what others have suffered on here. I would diagnosed with hypothyroidism 8 years ago. I first went to see my gp with flu like symptom's ,she did a blood test and said I had hypothyroidism and needed to start taking levothyroxine daily, I started taking 25mg a day of levothyroxine,3 weeks later increased to 50mg a day of levothyroxine and still felt unwell, in fact more unwell than when I first started the meds. this was then increased again to 100mg a day of levothyroxine after 8 weeks and at this time my muscles began to go into spasm and simple tasks were becoming difficult me.

after 12 weeks she increased my dose to 200mg a day of levothyroxine and I collapsed at work and was taken into hospital. I couldn't see (blurred visions now massive headache's , constant sweats day and night , complete lose of appetite started to get palpitations , severe stomach cramps and the symptoms just kept adding up.

I only felt like I had the flu went I first saw my GP 8 years ago when I was 34 years old, but she advised that this is the side effects of taking the levothyroxine and something I now how to live with ,she lowered my dose to 175mg a day of levothyroxine but I was being sick every morning 30 minutes after taking the medication and now not sleeping not eating and could barely get out of bed anymore and lost my job as an engineer due to time off work.

I have had to put up with these symptom's for 8 years, seen various specialist and told its all in my head, told I have angina asthma and even cancer at one point.

finally saw a locum GP 7 weeks ago and said it sounds like I had gone from being hypothyroid to hyperthyroid and suggested I just do a simple test and stop taking the 175mg of levothyroxine a day and see what happens (I was virtually crippled at this point and had almost given up on life as I was so fed up of being sick in the mornings and the evenings and the pain had become unbearable).

much to me and my partners surprise as I had been told I could never stop taking the 175mg of levothyroxine by my own GP, I began to rapidly recover. after 2 days I was no longer being sick, my sweating had stopped almost instantly and I was sleeping for 7-8 hours a day come the end of the week.

7 weeks have now past and I feel fantastic, I have my life back again, and I'm eating well have a new job which I'm enjoying and its working 12 hour shifts days and nights I would not have ever thought this was possible as I was about to quit life altogether and call it a day.

I had a blood test Monday this week and my results have come back saying I'm hypothyroid again. however I will not be going on the levothyroxine again due to what it put me through for a years and every time I complained to my GP just gave me a sick note with needs to rest for 8 weeks, I had lost 9 jobs because of this since 2012 until now but like I said, now don't have any symptoms despite my recent bloods saying I'm hypothyroid again.

I was just wondering if anyone else has tried or been through this or something similar and should I be waiting to suddenly crash and be back to having the flu like symptom's again?

can people also just live a normal life with an underactive thyroid? and without any medication?

I also had a CT scan and that has shown an abnormality in my lower bowl so I'm now waiting to have an MRI ,could this be caused by taking the levothyroxine for 8 years when its quite possible i never needed to take it the first place and it made me feel so unwell for 8 years,

so to go on but any response to the above would be much appreciated and very helpful to me.

Thank you.

10 Replies

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  • There is another "simple test" the gp should have done. Rather than taking you off your medicine she should have tested your TSH, t4 and if poss t3. That is the simple test used to see if you are hyper. To take you off your medicine as an experiment sounds dangerous to me.

    Being sick after taking your levo is not normal. One possibility is that you are reacting to the fillers in it, and you could try a different brand.

    Do you have a copy of your latest blood test?

  • Hi, thank you so much for your reply, I don't have a copy of my recent blood test but I will request this information from the surgery on Monday and post the results to you if that's ok. I'm working nights so I should be able to do this before 11am Monday morning. any help or advise would be greatly appreciated. thank you.

    I only found this site last night. its so insightful and I wish I had found this along time ago as having no one to talk to made me feel so alone.

  • When people take levothyroxine (T4) they need to have certain things at the right level for the body to deal with the levo appropriately.

    T4 has to be converted to T3, and T3 has to be able to get into the cells where it actually does its job.

    To achieve the above you need optimal levels of ferritin/iron, vitamin B12, vitamin D, and folate. Ask your doctor to test these and ask for the results, including the reference ranges, to be given to you. Post the results in a new post on the forum and ask for feedback. We can tell you what needs supplementing.

    Another thing that must be at good levels is cortisol. Too high or too low cortisol makes it difficult to tolerate thyroid meds. This can be tested for, but low nutrients also affect cortisol, so start fixing the minerals and vitamins first before worrying too much about cortisol - it may improve anyway. And trying to do too many things at once is always a good way of getting muddled up about what is causing what.

    You could be allergic to the fillers in the levothyroxine you were taking, and trying a different brand might help.

    You may be unable to tolerate levothyroxine in any form in which case you might need a different form of thyroid meds i.e. NDT or T3. Unfortunately, doctors have been brainwashed into believing that levo is perfect and anyone claiming they don't tolerate it is a liar and a hypochondriac. A very few, lucky people get prescribed NDT or T3 on the NHS. Many of us just buy it on the internet without a prescription.

    Have you had your thyroid antibody levels tested? See here for info on the different

    kinds of antibodies :

    labtestsonline.org.uk/under...

    If you have positive antibodies then you have Hashimoto's Thyroiditis. As antibody levels fluctuate they cause people to swing from hypo to hyper and back again. The antibodies slowly destroy the thyroid, eventually making you permanently hypo.

    Going gluten-free helps a lot of people to damp down the antibody numbers and the antibody activity. It has to be done absolutely ruthlessly to have any effect. You can't be almost gluten free.

  • hello humanbean, thank you so much for your kind reply, I'm am astonished that I was so unaware of any of the information you have been so kind to provide for me above.

    All I have ever been advised by my GP for the past 8 years is its the side effects and just something I have to live with and clearly this is not the case by all the support I'm kindly receiving.

    I will follow your above comments and post as soon as I receive the results back.

    I'm off to bed now but will update asap.

    once again thank you kindly for your reply and everyone else that I'm receiving replies from.

    its nice not to feel so alone for the first time in years as you can imagine its been so hard and you feel so isolated from everyone and I feel so sorry for anyone else left to go through this on there own.

    so glad I found it and thank you so much for your support.

  • mark1994 I agree with humanbean - testing antibodies was the first thing that came into my mind. Ask your GP to do this, Thyroid Peroxidase (TPO) and Thyroglobulin (TG) antibodies, both if possible but NHS usually only do the TPO. If that comes back negative then do a private test through Blue Horizon which does both TPO and TG.

  • hello SeasideSusie,

    Thank you for your reply, as with Humanbean I will follow your comments and advise you with my results as soon as I receive them.

    As I replied to Humanbean comments, everyone has been so helpful and I now realise there is so much my GP has failed to mention.

    I have even began a case of medical negligence against the surgery as all that has ever happened when I have been to see my GP is that I'm given a variety of different pain killers and depressant's to cope and advised I need 2 months rest. this has been the case for 8 years which I find completely unacceptable hence my claim against them.

    Although I stated in my comment they have completely stopped my medication to see what happens and I really do feel much better EXAMPLE, I can eat sleep no sweats headaches anymore, I am beginning to get pain in my lower back right hand and arm again. However saying that, this is only around 10% of the pain I used to suffer when on the 175mg a day of levothyroxine I was taking. also its something I can control with 500mg of co-codimal at intervals through out the day to get by.

    my fear is that will it get worse again and how long before I crippled with pain again.

    guess I will have to wait and see.

    thanks again for your reply and I will update as soon as I have had the test and posted my results.

    do you think I could copy and paste this and forward it to my solicitor as I feel it would help them understand and get a better view as to why hasn't my GP done this and I feel it would support my claim even further.

    if anyone objects please let me know and I will not do it and just keep all the info personal and just post on this site.

    thank you!

  • I agree with everything that's already been said, but... I would like to add that I very much doubt you were misdiagnosed in the beginning - especially in light of your most recent labs saying that you are hypo again.

    Secondly, even if you did take levo when you didn't need it, it wouldn't cause an abnormality in the lower bowel. That is either due to being hypo, or nothing to do with anything.

    The problem was, that you were very badly treated by your doctor, who obviously knew very little about thyroid. The accepted protocol is that you start on a dose of 50 mcg, which you take for 6 weeks. Then you get another test, and your dose is increased by 25 mcg - definitely not more than 25 mcg! And then that process is repeated until all your symptoms have gone. And, should you need to reduce your dose, it should be just 25 mcg at a time, not more. As you can see, what happened to you was nothing like that protocol. And going up and down in dose all the time, and by too much each time, was stressing your body.

    So, then you came off levo altogether, and you felt so much better! That is normal. I think that anyone that comes off their levo - or even other forms of thyroid hormone replacement - feels that sense of relief and well-being. And nobody knows why!

    Unfortunately, as you have found out, it doesn't last. Levels of thyroid hormones drop until you become hypo again. And, now you don't want to go back on it because of your unfortunately experience. But, no, you cannot live well with low levels of thyroid hormone - not low to the point of hypothyroidism, no. Because other organs and systems in your body need that T3, and will be effected. Your heart, your liver, your kidneys... All sorts of things could go wrong. You cannot live for long without decent levels of thyroid hormone.

    You haven't had your antibodies tested, so you don't know why you are hypo, but, I'm afraid, even without antibodies, it's only likely to get worse. The odds that it will improve on its own are very low. So, you do need to take something.

    My advice would be to try levo again - after all, it does suit millions of people - but this time, make sure that the correct procedure is followed (as above). Also, as HB suggested, get your nutrients optimised, check out your cortisol. And, if after all that, it still doesn't suit you, there are other alternatives : T3, T3/T4, NDT. But do, at least, give levo a fair chance. We are here to help you. :)

  • Hello Mark1994 :) To summarise, these are the minimal tests:

    ferritin/iron

    vitamin B12

    vitamin D

    folate

    TSH

    TPO

    TgAb

    FreeT3

    FreeT4

    Reverse T3

    Have you got any cash? Strange Q huh? Because you need to know all these values at the same time, so if the doc says - I can get you Ft4 tested, we will see how it is, and then maybe fT3 if your fT4 is abnormal, then this is not good enough (but to be expected unfortuneately) Grrrrr.

    Blue Horizons supply tests. There are a few thyroid profile packages they have available. If you decide to go that route then post again here, people can help you pick a package.

    I find it easy to get the vits testing from GP but not all the thyroid hormones. So I order a TSK, FT4, Ft3, TPO, TgAb from BHorizons and test on the same day (ish!) as my GP does the others.

    SO MUCH INFORMATION HUH!!!

    I dont know about you Mark1994 but I disgaree with another comment "give levothyroxine a fair chance". You already gave it 8 years. I do agree that this could have been the dose, but personally, I wouldnt want to go anywhere near it for psychological reasons! I fell off rollerskates when I was 30 and broke both my arms. My friends say to me: come on, try rollerblading! I say NO Why would I roller again when I can walk.cycle etc? The psychological effects are still there and I have no wish to put myself in that danger again unless I have to (I am new to here also so do excuse my newbie tirades!!!).

    If you want to do more research then the sites thyroiduk.org.uk/tuk/

    and stopthethyroidmadness.com/ (also book of same name).

    and hypothyroidmom.com/

    AS well as all the clinical stuff, I guess its very important to have us and to have a chance to speak with friends or family you can trust as well. Im not sure about you but I am going through all that disbelief, grief for lost years, complete uncertainty of the future (whats new:)!) , renavigating with NDT (natural dessicated thyroid), trying to get some support from a doc (as I still have a belief that I need them to support me with it - I should know better by now!). I think modern medicine makes it so we want someone else to know more about our health than we do. But thats obv not true for so many now and we have to trust ourselves to find the path forward.

    I am so sorry to hear that you have suffered needlessly. The sooner you get the tests the sooner you can find out if some meds/vits will help you and relieve the pain in your hands. What a crazy thing to have gone through all those years!!! No more of it. Youre in the right place now. Take care

  • Hi all, so I have just picked up my results and they are as follows. Serum T4 <3.2 pmol/L. Reference range 7.9 - 20 pmol/l. 1st trimester low limit 6.7 pmol/l. 2nd trimester low limit 5.8 pmol/l. 3rd trimester low limit 6.1 pmol/l. Serum TSH level >46.8 mu/l 0.34 - 5.60mu/l. Serum T3 level - ( SG1138) under 2.5 pmol/L 3.8 - 6.00pmul/L. Any help with understanding these results would be very much appreciated, thankyou. Also I'm still off the levothyroxin but beginning to feel tired and achy all over again. Have an appointment with my GP on the 16th to discuss what to do next as I really can't afford to loose another job again neither to I want to have to go through what I had been while on the levothyroxin again. Catch 22 situation I guess.

  • Sorry it also said under active thyroid again???

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