250mg a day!

Hi everyone, I'm a 47 year old male, father of 5 lovely children. Ive been active fit & healthy all my life. I was diagnosed with an underactive thyroid around 20 years ago with only mild symptoms of lethargy and slight weight gain. Turned out I needed 250mg of levothyroxine every day. In April my gp had a brainstorm and stopped a repeat prescription because I missed a blood test. This turned my life upside down. I've had serious anxiety leading to seriously powerful panic attacks, no appetite, no energy, I haven't been yo work for 4 weeks. Can't think, can't drive, can't work. Gp genius put me back on 200mg a day after an 8 week hiatus. The sudden shock of returning to such a big dose nearly killed me. Now ive been on 125mg with a review every 4 weeks gradually increasing it when necessary. But Ive bern referred to an endocrinologist who is an expert on human hormones. If your dose is 100mg ir above, you must insist your refers you ASAP as it will save you a mountain of grief because they will domore thorough testing of your blood . Good luck to everyone as its a very hard problem yo solve.

35 Replies

  • Hi Tolla, that is downright disturbing to read. If you are new here I'll bring you up to date. Doctors, even endos, do not ascribe to optimum treatment for thyroid patients. They do not agree with a TSH level of 1.0 and FT4 in upper ranges as well as FT3. When forcing people to take levo rather than natural desiccated thyroid, it is essential that cortisol and iron levels are very adequate. Often B12, ferritin and folate are inadequate as well. So, what are you to do to avoid what happened to you? For the most part, we do it ourselves if necessary. You can get a packet of blood tests done through Blue Horizon and you can order your own Levo, NDT or T3 and many are doing so. Look what's happened to your life and it is so unnecessary. Ask people to private message whatever questions you have about doing any of the above.

  • endocrinologists..all 4 knew nothing about hormones and only dose by labs, not symptoms. Do you have hashimotos? Why are you hypo at all? Think you need to find out. Hashi's is so much more than low thyroid.

  • Tolla, where do you live? Your advice sounds more pertinent to the US, whereas the majority of members live in the UK - this is Thyroid UK. In the UK, it's very difficult to be referred to an endo, and most of them are pretty useless, anyway, and will not do all the tests - especially not the FT3!

    Quite apart from that, 100 mcg levo really isn't an enormous dose. It's less than average, almost a starting dose. I really don't think you should be worrying people like that. Most people take more than 100, but very few off them have the option to rush off to an endo for more tests.

    Besides, the problem wasn't that you were taking more than 100, the problem was that your stupid GP stopped your levo for eight weeks, and then put you back on too high a dose and shocked your body. Your problem was your stupid GP, not your dose of levo.

  • Except tolla repeatedly writes mg not mcg, Must be a typo!

  • lol A hypo typo! I didn't even notice that. But, in any case, it couldn't possibly be 250 mg!!!

  • Greygoose and Tolla36

    Just want to say that when I was diagnosed as hypo, my GP started me on 100mcg and all my hypo symptoms went away almost by magic and remain like so for over 20 years for sure. Only this last March, things changed for me. The year 2015 was a high stressed year and I guess it began to come to a head which must have begun before March but I mention March because it's almost like it began with my new prescription refill. A coincidence but I sure was very sick... This is when I remembered a small tyroditis episode years prior where all I had to do was take half of my 100mcg dosage. So this is what I did. I went half then got tested, my TSH read high as 8.9 and my GP was ready to give me a higher dosage. I had to tell her that no way as if I take a higher dose, I will go hyper as I knew my body. I'd already suffered from as bad as a panic attack so panic attacks for me was out!! I was lucky that my GP listened and we had a great discussion and said for me to continue on half and I am now or been on one quarter or 25 mcg and I feel ok.

    Of course I don't know what Tolla36 weighs but for me at the time, 100mcg was sufficient for years. I weigh 130# or 60kl, 5'3" tall and I am doin ok. But if I up my dosage say like I did a few weeks ago, 50mcg, I go back to feeling like someone gave me a sleeping pill and I go back to feeling awful. So I have to cut back to 25mcg and to get back feeling kind of normal, it took me a long time.

  • Lily, I'm not really sure what that's got to do with Tolla's post, but your dosage isn't dependant on your weight or height. We need what we need, and that's all.

    Your TSH is very high. Do you have any idea what your FT4 and FT3 are like? I'm willing to bet they're pretty low, and that isn't good for your general health.

    If you have difficulties raising your dose, if the slightest increase gives you hyper symptoms (you won't actually go hyper), then you probably have nutritional deficiencies. Have you had your vit D, vit B12, folate and ferritin tested?

    And have you had your antibodies tested? Because it sounds to me like you have Hashi's. :)

  • To greygoose

    I just entered my weight in case it was affected by weight.... but I will keep your posting's information in mind when I go to my doctors app in August.

    Can you elaborate on antibodies please? Thanks much.

  • If you have high antibodies - TPOab and/or TgAB - it means you have Hashimoto's Thyroiditis, and autoimmune disease that slowly destroys the gland. And, because of the way it destroys it, thyroid levels tend to fluctuate - or swing, as we say, from hypo to hyper and back, each time getting slightly more hypo as the gland is destroyed.

    Your doctor can test for them, but there is not treatment he can give you for it. Just thyroid hormone replacement to off-set the resulting lack of hormones. But someone who knows they have Hashi's, will know that they need their TSH at zero, and that taking selenium and/or going gluten-free, could help lower the antibodies. Doctors don't know that.

  • Greygoose

    If I were going hypo, wouldn't I be gaining weight?

  • Just want to add that BootsOn pointed out that I didn't fully understand your message earlier....

    So am I to understand that my thyroid gland will eventually become as none...or as one who has had surgery to remove the thyroid gland altogether?

    Txs so much for your help

  • tolla,

    Welcome to our forum.

    Gosh ... that is a hefty dose to suddenly stop and resume !! ..Your doctor obviously doesn't know anything about thyroid physiology.

    Your shocked adrenal glands have gone into overdrive trying to compensate for the sudden lack of thyroid hormone. Huge amounts of adrenaline will be causing the anxiety, panic attacks and lack of appetite.

    Thyroid hormone replacement is only as good as the amount your body can tolerate and utilise. Some people need a hefty dose to function well but if your 250mcg Levothyroxine wasn't alleviating your symptoms, there is something wrong. Stopping, starting, adding or reducing meds may not be enough without addressing the underlying cause.

    You need a doctor who understands the thyroid//adrenal gland connection and will medicate you sympathetically to your symptoms. Adequate cortisol levels are vital for good thyroid hormone synthesis and your adrenal glands may take a long while to recover. I hope you feel better soon.

  • You're all quick to assume that he had a problem before the hiatus. He said he was fit and healthy until the dose was stopped. I had a similar issue that my new doctor felt I was on too much at 175 mcg. He scared me saying that I had high cholesterol and would have heart problems and wanted me reduced to 125 mcg.

    I found this wasn't enough and increased to 150 but really struggled to get back to 175, the level at which I had been fit and well. I subsequently developed breast cancer (it is related) and having got through that, researched the condition and started myself on NDT.

    Levothyroxine worked fine for me for 18 years but once it was messed around with it didn't. Don't let your GP or endocrinologists change your dose based on TSH alone.

  • Hi Misty.

    It's true that our cholesterol can go high but what's interesting is it can be the result of being hypothyroidism. I have a good book entitled The Thyroid Solution by Ridha Arem, M. D. My GP wanted me to take meds to reduce cholesterol, but I refused cause these meds can cause problems and I discovered in this book that the cause was hypothyroidism was a blessing. I was tested and discovered I was hypothyroid.....so I was prescribed 100mcg Levothyroxine. Couple of months later I was tested and my cholesterol was just fine. It's very clear to me that a malfunctioning thyroid gland is the cause of many other of our body's ailments.

  • Absolutely right. And high cholesterol isn't something to worry about, read Dr Malcolm Kendrick's blog, it's very interesting. And stay away from statins!

  • Always like the name of a good book...txs.... I try to eat with less fat though, but I been adding a bit more of the good fats...

  • When I was first put on levothyroxine I develop a heart problem, a racing heart beat that disabled me which I immediately associated with the meds. I started to sense a pulling down one side of my face so I went to a and e, they diagnosed me with a mini stroke and a specialist said I needed to go on antibiotics and steroids. There was a different opinion by another doctor who said I was to go on stations, by the way he apparrrently wasn't a specialist but whoever the overseers were they went with statins and discharged me. I picked up my son and collapsed unable to breathe but remained calm.I went to see my gp who said it wasn't the meds and that I needed to keep taking them. Over the next few weeks I became a so called regular at a and e with chest and breathing difficulties and a racing heart I really thought I was going to die. My gp told me to stop going to a and e or ringing 999 when these attacks happen because the hospital had inquired about regular visits required by myself. I took my self of the stations and the attacks became less.I mentioned that the specialist at the hospital had suggested an alternative diagnoses with different meds but got no joy. My levothyroxine dose has gone from 25mcg to 125mcg I look like shit puffy face ect,pains in legs, feet and blurred vision and to top it off I'm also now overweight. I seriously question my diagnosis and treatment but unsure who to approach.

  • angelic 69.

    I think maybe your GP started you on a too high dosage of Levothyroxine.. Also, I would venture to say that the statin pills to lower cholesterol were the culprit.... I'm so glad I heard of its danger before I was ever offered the "pill-of-the-day" as I would have thrown the statin out as soon as the first one made me sick..... I don't know why you'd been prescribed antibiotics and steroids. I am so sorry you had to go through such a mess. Some of the other listers have suggested that maybe you could take another type of thyroid replacement hormone so maybe someone will give you the name. I hope I've helped ... Good luck.....

  • Lily288, 25mcg of Levothyroxine is not a high starting dose. It's the lowest dose available.

  • To BootsOn

    I'm not 100% sure yet but I may need even less than 25mcg.... I hope...

    My pharmacist told me that when your TSH reads high like mine did, it means that your thyroid is making or producing more of its own TSH or hormone and so my body needs less levothyroxine dosage... When I discovered I was hypothyroid, my doctor started me on 100mcg or 0.1mg and I did fine with this very same dosage for over 20 years up until about May of this year....

  • Lily, your pharmacist doesn't sound as though they know what they are talking about.

    Did you see the reply from Greygoose to your earlier on this thread? Your TSH is far too high. If you can no tolerate levothyroxine, there is likely something else going on that is causing this.

    Don't hope, do something.

  • BootsOn

    I'm now a might confused because this seemed to make sense to me and only because when I take less or lower my dosage of my 100mcg dosage, I feel better.

    Yes, I saw greygoose's message. I get that my TSH is high, and so you think it's because I can't tolerate Levothyroxine!?

    I have to repeat that this began with a new refill I got in March 2015 and that is when I wondered if this new refill was made by a different drug company or that the company made a mistake in its new batch and added wrong ingredients or threw in a sleeping pill or something. But I was assured by my pharmacist that all was the very same And this is when he told me that my gland was making more of the hormone it's supposed to make, thus my needing less Levo

    Thank you for your concern and your help.

    Are you a endocrinologist? This would be great. 😀

  • Lily, your TSH will be high because you are not taking enough thyroxine. Greygoose has already given you pointers as to why you can't seem to tolerate enough.

  • Have you read "Your Thyroid and How to Keep it Healthy" by Barry Durrant-Peatfield?

  • Mistydog

    What is NDT?

  • Natural dessicated thyroid extract known as Armour, Erfa, Thiroyd, thyroid s, WP thyroid, etc etc.

    To be clear. If your TSH is high, your pituitary gland is trying to stimulate your thyroid gland to produce more thyroxine. The higher the TSH, the harder it is trying and failing to get the thyroid gland to work.

  • I have to say that I am shocked that a GP/Dr would be irresponsible enough to stop a prescription without making appointment to see you and then for 8 weeks not prescribe any medication, that is really unbelievable. Our surgery will put a reminder on the bottom of a prescription to make an appointment for a review and as long as you have made an appointment, they will give you a prescription beforehand, should you need it. But I do think, the trouble with Dr's/Endo's is that they do not understand the impact on us when they drastically change our medication. I have been on thyroxine all my life and up to 32 years old, I was on 200 mcg, with no problems. Then a GP expert (not) at another practice, decided my dose was too high and adjusted it to 75 mcg, I thought she meant 175 mcg but no 75mcg and then all my problems started. Would not prescribe a higher dose and I went into melt down and zombie land as I call it. For the next 22 years, I have had nothing but health problems and I mean serious health problems. It was my gyne that referred me to a Endo in the private sector (I was under health scheme at work) because my thyroid was out of kilter. Most dramatic change being my weight increase. I am currently on 250 mcg of thyroxine and 20 mcg of lithyronine (although the latter is a sore subject as many of you will know). I even said to my GP recently, these meds are not sweeties but my lifeline - not interested except to say that she is not "licensed" to prescribe the now famous and "expensive" Lithyronine! Hence the reason I ended up at the Endo's office on Monday. She implied my husband was an enabler!! The only enabling he does, is help me survive! :)

  • get advice on whether or not to take legal action, drs that change/stop your dose without your permission are plain dangerous !

  • Hi Tolla36,

    I think you meant to write mcg and not mg. That is 250 micrograms not milligrams right. But gotta tell you that starting you at 250 mcg is way high since you didn't even have slight hypothyroidism symptoms. And worse, is your GP 's punishment for missing a blood test when you were in fact, doing ok. It's hard on our bodies to adjust to a lesser change in dosage so let alone from 250mcg to nothing and then going back to this high dosage is harder or takes a longer time to adjust once it's been messed with hope you're doing better now..

  • Gp has put me on 125mcg but won't adjust it until a blood test after 4weeks. Meanwhile I'm really suffering. Its a nightmare that I wouldn't wish on my worst enemy. I just hope& pray I get back to normal. Its real trauma. Thanks for your valuable support & all the best Lily288

  • But you do mean levothyroxine, not liothyronine, don't you?

  • Yes levothyroxine

  • Tolla my GP did something similar to me two years ago because my tsh was suppressed. I also have m.e, it had devestating effects and I made a complaint about her actions for what it was worth. It messed up my adrenals though so if you find it hard to get back to the amount you were on before get an adrenal stress test privately.

  • To Tolla36

    I know and I'm glad your doctor started you back on a lower dosage as your body will adjust better this way. For myself, I can feel the change in my body with way less of a difference in my dosage so I surely can feel for you. Stay strong and try to go one day at a time...☺

  • Thanks Lily288. You're advice is priceless

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