aching legs

Been on T3 only for 4 months now (dosing 125mcg daily) but my weight is still going up and my legs really ache. They seem fine in the mornings but by midday they feel like lead. I do not feel hyper and my basal temp is 96. I thought maybe I was taking too much B6 so stopped that yesturday but my legs are really sore. Is this just my tissues reacting to T3 or should I reduce dose?

regards... Loraine.

52 Replies

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  • Stig5882, I think you should have a thyroid function test thyroiduk.org.uk/tuk/testin... 125mcg T3 is a very high dose, more than double the dose I was prescribed after thyroidectomy. Overmedication can cause muscle weakness, pain and soreness, and weight gain.

    thyroid.about.com/library/a...

  • Thank you Clutter but these tests cost money that I just don't have at the minute. I thought my temperature would go up before I need to cut down T3 ? My morning temps are still only 36 degrees so I thought I need to keep raising my dose until temps reach 98.6 ?

  • Stig5882, temperature doesn't always recover and may always remain low in some hypothyroid patients even though bucket loads of T3 are chucked at it.

    Perhaps your GP will do a thyroid test? If your TSH is suppressed <0.03 the lab will probably test FT3 too. If you can't test I suggest you reduce T3 drastically and you should notice improvement in your sore leg muscles.

    ______________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I see you have gone up to 125 from 100.

    Did you not try seeing what LESS T3 was like. You also said you would be looking at using some T4 as you went straight onto T3 and then got up to 100 very quickly.

    So i suppose you haven't decided to try some T4.

  • Doctor won't prescribe T4 hence self medicating of T3 and I just lossed my job a few weeks back so I cannot afford to buy T4 along with T3 :(

  • But t4 is sooo much cheaper than t3, The nhs pays about £2 a month per person for t4 so if you have to self medicate you should only be paying about this much. It suits 85% of the people who take it.

    Taking such large amounts of t3, without apparantly fully monitoring yourself is a scary thing to do. You do realise that if your tsh is low and the free t3 is over range you do run the risk of running into very real problems? If you still have symptoms, its no good just increasing, you have to research and find out what is going on.... You might have tons of t3 in your system which your cells simply cannot use because other vitamins and minerals are not up to scratch.

    At the very least, get your free t3 and tsh checked. Its going to cost you around £80 for a thyroid function test. I know you have lost your job, but if you dont get on top of this you wont be in a fit state to look for another one.

    testing details are onbthe thyroid uk homepage. thyroiduk.org.uk

    G x

  • I have had blood tests regarding vitamins etc. and apart from D3 which was within range (just) all seems fine. My doctor won't treat me as she said I am only borderline hypothyroid TSH 5.9

    With almost 2 stones in weight increase in six months I just want to get back to normal. :(

    All my life I've been healthy but after giving up smoking (a 40 year 20 a day habit) BANG!.... my body starts breaking down.... :(

    I will come off T3 and see what happens.

    Thankyou so much for all your help... Loraine.

  • Borderline? 5.9? Well you would be treated in every country in the world, apart from the uk....

    If you have antibodies then the doctor has no excuse not to treat you...... Have a read of the booklet by retired endo A toft, which suggests treating in order to nip problems in the bud.... amazon.co.uk/Thyroid-Disord...

    Mr Toft used to be president of the British Thyroid Asscn and the book us endorsed by the B M A.... On what grounds does your doctor disagree with the advice in it? Worth asking him perhaps.

    Xx g

  • you are hypothyroid, but you need to know why. For me, because of hashimotos and low cortisol etc..t3 only didn't take away my symptoms. But, i think i am rare.

  • Ok, so you don't want to look at T4.

    So have you tried reducing the T3 to see if this is the cause of the pain ? This really is a very simple thing to try. You can go up and up and up with the T3, but if the symptoms don't resolve then more T3 is not the answer.

  • Thankyou marsaday, I have started reducing my dose in the hope that this will help. Thankyou for all your advice. x

  • May I throw another thought into the mix? As a T3 user who used to take more than 125mcg daily and with a massive weight gain whilst feeling worse, it should have been crystal clear to my former NHS Endoknob that something was amiss. I've since had a heavy metal toxicity test which has shown some very high levels and means that T3 is unable to do its job due to this toxicity.

  • Endoknob! :D

  • HypoT patients do tend to have more of the toxic metals in the system. It is all down to poor thyroid function which reduces the elimination of these metals.

    As the metabolism comes up and we hopefully feel better more toxic stuff will be expelled. I imagine if the toxic metals get too concentrated they then start having an impact on our thyroid treatment.

  • Thanks for replying, I will look into having a heavy metal toxicity test. I hope you feel better soon. x

  • You clearly should be on thyroid meds, do you think it would be worth writing to your GP with a copy to the Practice Manager stating that you believe you're clearly hypo as a normal TSH is around 1. You could say that they seem to be doing nothing to help you regain your health, I've personally found this helps as GPs are revalidated every 5 years and anything like this they would have to answer to.

    You could then request an appointment with an NHS Endo from Louise's list. As money is tight then this may be a better course of action, just get done as many tests as you can and use the NHS.

    If I were you I would gradually reduce the T3 and keep a close watch on symptoms and note any change in them. If you feel no different then something is stopping the T3 from working and won't be easy to work out what that is. It could be thyroid hormone resistance or as I suggested before it could be toxicity.

    Your comment re weight gain is interesting, my weight has increased by nearly 50% since becoming hypo and am now very close to obesity. NHS Endoknob just dismissed my comments but I was prepared with an A4 sized photo taken a few years previously where I was slim. Dead silence and of course he had no answer.

    If you went down the road of heavy metal testing then Genova offer the Toxic Element Clearance Profile which involves taking DMSA (acts as a chelator) then taking urine samples over a period of time. Obviously not cheap. Do you have any amalgam fillings?

    We understand your frustration and would also mention that many of us have found that by stopping smoking our thyroid woes have begun. Remember that NHS doctors have no accountability, some are hard of thinking, some don't give a stuff so trust them at your peril.

    I do hope that you can get to the bottom of what is going on.

  • Hi Cinnamon_Girl. Was that a typo or did you actually mean that when you stopped smoking your hypo systems became worse? I am very interested in this idea. Thanks x

  • corin - I believe I became hypo when I gave up smoking, certainly my TSH would indicate that although was undiagnosed for a very long time.

    There are studies concerning the stopping smoking/thyroid connection, it's been discussed on here many times so perhaps worth using the Search function.

  • Thank you for responding so quickly. I will def look it up on here. Fascinating connection. x

  • My guess is that you were hypo before, but the nicotine suppressed the symptoms. It really messes with the brain, and stimulates the metabolism at the same time as suppressing appetite (to the point that quitters often are unaware that they are eating extra, and will swear that they are being really careful).

    It also creates a sense of wellbeing so some people feel terrible when they quit.

    Thus speaks a one time Quitting Counsellor. Its amazingly difficult to do, and successful quitters are often not really aware of the changes that are taking place. Well done you! I don't think I could do it. (No, never smoked, mother died of lung cancer when I was 12! BUT I am addicted to sugar!)

  • Unfortunately I am a sugar and cigarette junkie so I have a long way to go! Thank you for your input x

  • Thank you for your reply Ruthi and I think you may be right about the nicotine suppressing the symptoms of UT.

  • Thanks Ruthie for an interesting post. Quite an eye opener when I read posts on here about it. I took up running to help me stop smoking but my weight kept increasing even when running 6 days a week!! Of course once I got hold of my medical records my TSH at that time was the giveaway !

    How awful to have lost your mother so young, so unfair.

    Would have been challenging working as a Quitting Counsellor and probably quite frightening to see how nicotine had so many folk addicted, pretty scary really.

    Can understand the sugar addiction too!!

  • isn't T3 three times as strong as T4. If so that would mean you are taking the same as 375 mcg of thyroxine. If you think you need that much then why wont your GP prescribe Thyroxine for you ? Or am I just being thick !!!! lol x

  • To be frank I didn't need it for symptoms as they are gone after 50mcg but I am still putting weight on. :( I am going to decrease dose and go back to my doctor but I am afraid she will only say it's my own fault for self medicating in the first place. :(

  • unfortunately a lot of us have had to self medicate over the years, so you aren't on your own. There is nothing wrong with trying T3, and if it made you feel better on 50mcg then that's brilliant. A lot of us on here are overweight though and in my personal experience, although I hate being big, there isn't anything else I can try. T3 is strong, so just go careful. We are all on here to get advice and give advice from experience. good luck with what ever you decide to do.

  • Thank you mandy-white.x

  • I don't think you realise that your daily dose of 125mcg of T3 is roughly around 400+ mcg of levothyroxine.

    I hope you feel better soon whatever advice you take. I am also sorry you've lost your job through, I believe, being undertreated or undiagnosed previously.

  • Going for the very direct approach with t3 is understandable, to a point, if you suspect that t4 to t3 conversion just isn't happening with you. But, to do it blind is perilous as you need to know

    (1) what your own thyroid is capable of;

    (2) the reason you opted for t3 in the first place - either the DI02 gene, or

    (3) nutrient deficiencies resulting in an imbalance of minerals in your blood.

    If it's the latter, which is what I suspect, you need to identify what your body desperately needs, or is trying to eliminate (toxins).

    N.B. The thyroid is a bit like a sponge: A dry sponge put under a gushing tap will allow the water to run off out of control, but a sponge put under a gently dripping tap will absorb the water. Once the sponge is a bit damp it will absorb better than a dry sponge. It is always better to go slow and low on dosing at first and gradually build it up after 6 weekly blood tests. (The risk you ran by going for a high dose, is the build up of rt3 from any t4 that your own thyroid was making.)

  • Thank you for that information :) It makes it much easier for me to understand.

    This thyroid stuff is just so darned difficult to understand :(

    I read so much 'stuff' till my head just spins and it all melts into a sticky mess after a while :(

    Best regards....Loraine.

  • Hope you feel better soon. Could be worth asking a GP to check for low iron, B12 and vitamin D. Even on supplements, some people still struggle to get enough.

  • please get some antibody testing. I understand that if you are in the uk, you can use blue horizon to do at home.

  • your T3 sounds dangerously high. I would listen to the advice above, seriously.

  • I will and thank all you lovely people on this wonderful site. :)

    Best regards... Loraine.

  • This is an enormous dose! Not sure where others are getting their estimates, but the rule of thumb I use is that T3 is 4x as strong, therefore this is the equivalent of 500mcg of Levothyroxine.

    Another rule of thumb is that the human body makes the equivalent of around 100-200mcg of thyroxine a day, which translates to 25-50mcg of T3. Some people need a to take lot more than this, of course. But taking enormously more suggests you have a big problem with resistance to the medicine. If I were you I'd want to do extra digging to make sure that's true for me before trying it.

    For me, finding money for tests is a really important part of self-medication. Which unfortunately can get expensive :( One of the ways I look at it is that its a lot more expensive to miss time off work than it is to pay for treatment. Even though I've spent a lot, it's always going to be less than a few months of full time working.

  • Thank you for that information. I will reduce T3 immediately .

    Best regards.... Loraine.

  • the t3 dose is not enormous! I have seen people up to 300 mcgs. If you get hyper, you will know it and then lower it.

  • Have you done lots of research on taking T3? When you do increase, you should only increase by small amounts. It does really sound as if you are over-medicated. Please be careful and don't come down by a large dose, slowly reduce the amount you are taking.

  • I will reduce immediately. Thankyou for your advice.

    Best regards... Loraine.

  • How much would you advise to be a safe amount to reduce by?

  • Stig5882, my 60mcg dose was stopped dead for 2 weeks prepping for RAI. I don't see why you shouldn't reduce dose to 25-50mcg immediately. It's more dangerous to be overdosed long term than to reduce dose quickly.

    ___________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you Clutter, I only took 50mcg last night and I have noticed a slight improvement today so I think your advice is spot on and I think I will not take any tonight and see how I feel tomorrow. Thank you again for your help.... Loraine x

  • you would raise the dose, not lower it..that is low thyroid. T3 is dosed best 1x per day and raised until your symptoms subside, improve . According to dr john lowe, it is the only way it works.

  • I do dose once per day at bed time.

  • I ended up on about 130 a day taken at bedtime too, but stopped feeling the benefit, so I slowly dropped the dose to 80 at bedtime and feel better for it.

    Maybe you should try that and just see what happens. But do it gradually. xx

    Jo xx

  • Incase of use/interest - I take T3 for hypothyroidism - after I was diagnosed by Dr P & it also showed up on the hair mineral test.

    I started at 5 mcg dose & increased very slowly by 5mcg increments every 3 or 4 days at first,then by 10mcg every 7 days. once my daytime AV basal temp was up to a stable good level, I stopped increasing it.

    I started with a.m basal temps of around 35.5 they are now somewhere 36.2 -36.4

    I monitor my pulse & temps first thing waking & bedtime. I take my average daytime basal temp too & now it is between 36.8 & 37.0 (depends a bit on cold weather, good & bad days)

    My total dose of T3 spread out throughout the day, is 115mg

    I have been taking it for about 4months, I have stopped increasing it & I feel a lot better with symptoms like persistent nausea, energy & mental clarity.

    I've lost a few lbs & it feels to warm up my joints a bit

    I made the mistake once of increasing the t3 too quick, I got side effects that day & the next day I halved the dose for a few days then tried again.

    It seems to help to go gently, I had a few mineral deficiencies & some toxic high ones too like calcium & copper. The high copper means I needed more t3 than I would otherwise.

  • I agree that getting the vitamin / mineral balance is crucial as thyroid hormones need the right minerals to do their job.

    Unfortunately, it can be quite complicated as mineral absorption can be so easily compromised by other medication, reacting with other foods / supplements or a general problem with the GI tract due to either a food intolerance, stress or infection.

  • I know, it is taking me time to get the balance of them all right, I have had two hair mineral tests done & am taking homeopathic remedies too to correct the key ratios that are wrong

    It really shows on the hair mineral chart how just one or two v high minerals can really affect the other ones!

  • if you are not having hyper symptoms, then you would raise the dose, not lower. Do you have a diagnosis of hypothyroid or hashimotos?

  • My TSH 6 months ago was 5.9 but my doctor refused to diagnose as she said it would need to be nearer 10 before she would even think of prescribing Levo. I then did a lot of reading on here and decided to self medicate with T3 as everyone on T4 seemed to have more trouble losing the extra weight.

    But my weight just keeps creeping up so I upped my dose in the hope the weight would come off but it's not and the now it feels like my thigh muscles have have no strength and I am walking like a 90 year old. :(

  • maybe either try raising or lowering..both, see what happens. You can see what is happening in a matter of a week or less, then adjust accordingly. My suspicion is that you are still very hypothyroid, with the weight gain. If you were overmedicated you would have hyper symptoms, which you clearly don't. contact shaws on this forum..from above reply..for Dr. Lowe's dosing info on t3. Like i said before, your dose amount is what works for you, not a number. You are resistant to thyroid hormone, because that dose would have put me in the hospital. I can only tolerate 37 mcgs. Dr lowe specialized in thyroid resistance and did much research and has good info out there to view.

  • I would go down to 100mcg first of all and then after a few weeks, drop by a 1/4 of a tablet at a time. I take my T3 throughout the day an, not all at once. Once you have lowered the dose, see how you feel.

    Have you had an FT3 blood test? Also, have you had any benefit from the T3, or does it only seem to have made you worse?

    You may well find that you are fine on thyroxine, many patients are so that is something to think about.

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