Aching legs getting worse !!

Aching legs getting worse !!

Hi I've had UAT for 6 years .. on 100 mic Levo

Generally average .. up n down as you all know

But I've just had a thought .. could I have fybromiyalga?

I've developed bad constipation ( rabbit pellets) and I go bit by bit every day. I even have to help it out sometimes! Or I can just sit there

I have started getting restless legs in bed ( it's starting to annoy me!)

I can't sleep. I have joint pain I have numbnessin hands fingers in mornings

I am bloated in my tummy n I often have pains in my groins

I also read about hypoglcima I often get the shakes my hand shake n I feel faint a bit ... I have to eat asap ( low blood sugar?)

I'm feeling really really tired ( more than I was feeling 3 yrs ago. Was on 75 mic then I just feel constantly heavy n achey

I feel more depressed than the last few years

I have NO libido at all

Now I know it all could just be my thyroid .. but my bloods always come out " normal!" Grrrr!!!

I've got a new b test on Monday so that may help

But mostly it's my Achey legs that's different n new

I can't stop thinking about them and feeling the ache all eve .. it's just horrid

Sorry if I've gone on a bit 😊 Any thoughts

Thank you xxxx

Here is my last weeks bloods .. doc said she can only go by my TSH and it's bang in middle and is ok... I said perhaps because I don't feel well ( told her about restless Legs n tiredness n all the usual stuff ) but she had no answers for me !! She's doing some more bloods .. might send me to rheumatologist .. said he might say it could be CFS ??

Any thoughts people ? Thanks so much xx

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  • Hi mummyG

    First thing to ask is what is 'normal'? Do you have the results of your thyroid tests? You should always ask for a print out every time, you are legally entitled to them under the Data Protection Act 1998.

    Never accept 'normal' from your doctor. As long as you are somewhere in the reference range your doctor will say your are normal but you will feel very different if your TSH is at the very bottom of the range compared with it being at the very top of the range, similarly for FT4 and FT3.

    I imagine that your GP is only testing TSH, and maybe FT4 if you are lucky. Have you ever had your FT3 tested? FT3 is actually the most important test and is rarely done. What about antibodies? Have they ever been tested to rule out (or in) autoimmune thyroid disease aka Hashimoto's?

    And what about your vitamins and minerals, some of your symptoms suggest these are far from optimal, eg restless legs, numbness, pains.

    Ask your doctor for the following:

    TSH

    FT4

    FT3

    Thyroid Peroxidase antibodies

    Thyroglobulin antibodies

    B12

    Vit

    Ferritin

    Folate

    Those tests will give a full picture. If he is not willing to do them then we always suggest a private fingerprick blood test you can do at home which includes all of them bluehorizonmedicals.co.uk/T...

    When you have your blood drawn for thyroid tests, always make the very first appointment of the day, fast (water only, breakfast when you get home) and leave off your Levo for 24 hours take it after the blood draw.

    Are you taking your Levo on an empty stomach, one hour before or two hours after a meal? With water only, no tea or coffee? If you take any other medication or supplements are you keeping them at least two hours away from your Levo?

    Have you done any reading or research to understand your hypothyroidism? If not you can start here thyroiduk.org.uk/tuk/ and work down the purple menu on the left hand side starting with About the Thyroid.

    When you have your test results, make a new thread and post the results with their reference ranges (ranges vary from lab to lab so it important to include them) and members will comment.

    In the meantime, to ease your constipation I would suggest you get some Vit C (ascorbic acid will do, powder or tablets) and take 1000mg before breakfast, 1000mg before evening meal and 2000mg when you go to bed. You might have to work up to those amounts. Also I would suggest getting some Psyllium and Apple Pectin capsules, start with one and work up to how many is necessary, it won't be as many as it says on the pack lifestyle-labs.com/products... .You could also take magnesium citrate in the evening, that can help with constipation and is calming so may aid sleep, again powder or tablets, I use Natural Calm amazon.co.uk/Natural-Calm-S...

  • maybe check iron as well.

  • Apparently I'm really good on my iron test results 😊

  • When I was originally tested I was told it was hashimotos , I shall go back to docs next week n show this post of yours! I do know all about thyroid issues and how the NHS is rubbish at supporting us .... I even went to see Dr

    Peatfield once ...

    I always get the usual response of. It's normal !! Once a doc at my practice practilly called me a hypochondriac !!

    Said I seem to want to find something wrong with me !! 👀👀👀

    I've just plodded along really at this level as I've no faith in my docs.. and it all seems a minefied .. getting right recipie to health ! When I do this new blood test Monday I'm going to go back n stand my ground a bit xx thanks so much for advice xxx I shall get these things u mentioned n go slowly with them 😊

  • Normal is not necessarily optimal for you ,hence the repeated refrain on this site for test results plus ranges before folk can properly advise.

  • Oh I answered your message below ⬇️ God I'm a divvy x

  • I have lots of print outs

    I take my levo at night so as I don't eat late I have empty tummy

    Thanks xx

  • This is the procedure for getting blood tests if you don't do this already.

    "Levothyroxine should be taken on an empty stomach first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake of the hormones.

    It can also be taken at bedtime as long as you've last eaten about 3 hours previously.

    When you have blood tests for thyroid hormones, they should be the very earliest possible, and fasting although you can drink water. Leave about 24 hours between your last dose of levothyroxine and the test as this allows the TSH to be at its highest and that is mainly what the doctor uses to adjust hormones. "

    Pain can be due to too low a dose of thyroid hormones and your 100 mcg levo may need to be increased - most probably I should think.

    Many doctors make the mistake of thinking if the TSH is anywhere in the 'range' you're on sufficient. They never take Free T3 which would indicate if you've sufficient circulating. T4 is inactive and has to convert to T3 and we may not have sufficient T4 prescribed.

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

  • P.S. Bedtime dose should be missed and taken after blood test and take night dose as usual.

  • mummyG If you post your results, with reference ranges, members can make suggestions.

    You may be in too low a dose of Levo, you may not be converting well enough, you may need the addition of some T3.

    If we can see your results we can probably point you in the right direction.

  • Just wanted to say my docs do not test for T3 at all !! Madness !!

  • mummyG This is the problem almost all of us face, it's rarely done and even when requested by the GP the lab often doesn't do it. This is the reason we always suggest private testing with Blue Horizon if a member can get it done on the NHS. FT3 really is the most important test once we are on thyroid hormone replacement but doctors don't seem to know this.

  • You have raised a lot of points let's start with the pain:

    Fibro is mainly about pain:

    Where is the pain? What type of pain is it? Is there anything strange about it?

  • Most people on levo need low TSH around (or even slightly below) 1 to be adequately treated. Do you have your latest blood test results.

    If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    As SeasideSusie says....important to know if you have Hashimoto's - if you do then gluten free diet may really help. As can selenium supplements.

    Bloated tummy can be gluten or low stomach acid - common to have low stomach acid if hypo - lots of posts on here about this & how to treat it.

    Magnesium should really help with constipation, and may also improve restless legs. Magnesium Calm vitality powder is easy to use. Start cautiously e.g. 1/4 teaspoon dissolved in warm water, and build up slowly (or you may get reverse problem to constipation!!)

    No point testing magnesium levels - standard NHS test is always "in range". Very common to have low magnesium, but especially if hypo.

    Aches legs likely to be low vitamin D, but do not start supplements until tested. We normally need vit D level at higher end of normal - e.g. 100 - not right down at bottom of range

    Only ever start one supplement at a time, allowing about fortnight before adding anything else.

  • That's great info thank you i shall spk to doc about doing more tests.

  • I bet you're d3 difficient.. 10000 perv day plus k2 to move calcium awYvdrom joints and organs and magnesium to fox it in the cells. Magnesium glycinate .it also has a laxative effect. . Well that's what I did. . Bingo pains be gone

  • I did get a test back about 2 years ago saying I was bit d low. I do take extra tabs Think 2000 iue

    Will try your advice thanks

  • I'm glad you have blood test scheduled. Are you getting near menopause?Or had any additional stress lately?

  • I've gone thru menopause (56) no periods for 6 yrs No no stress

    I really just think I'm not doing well on levo that's the bottom line ! Docs r useless thanks

  • oh, ok. sorry

  • I use Solar Magnesium Citrate, it helps with aches and pains, restless legs and has pretty much cured my constipation problems (but in a very gentle way). X

  • Where do u get it please. Thanks so much x

  • I get it from Amazon, it isn't one of the cheapest brands but I find it the best..free from most allergens too x

  • Hi mummyG .

    You have Levo side effects and Adrenal issues.

    I don't have much time so I'm just going to say stuff without any justification.

    1. Change to Natural Dedicated Thyroid. Take as much as you can each day until you go hyper. Heart pounds, as you get used to it you can take more each day. start with 1 grain or 60mg.

    2. Go 100% Gluten and Sugar Free, maybe dairy to

    3. Take

    D3 supplement

    Iron/vit C supplement

    B12 booster shots get you B12 up in the 900's

    Magnesium supplement

    If you do this you will get better, not over night, but in small unpredictable steps as you fix things. It will take 6-9 months.

    As you improve you can re introduce everything but Gluten.

    also Read widely on the stop thyroid madness web sit.

    James

  • That's great advice. Thanks. I feel that could be true about levo ! Where do I get it from ( natural) I'm def gonna go g f n cut back on my sugar intake ! If it means gaining up my coffee !! I only have sugar cause I know sweeteners are bad for me xx cheers xx

  • Coffee and Soy milk is sort of sweat, but soy isnt very good for thyroid issues. :-( Sorry but Thyroid disease will turn your life upside down. Natural Dedicated Thyroid (pigs thyroid). Can be hard to find - depending on where you live. Someone on this forum should be able to help, you will most likly need a prescription from a GP.

  • It HAS already !!! . I'm not new to this crap condition ! Such a rubbish thing to put up with! And no it's def not one pill fits all !

    😊

  • James. Re changing from levo to natural

    How did u do it ? Did u tell your doctor? What's the best way to change Over ?

    Thanks

  • mummyG NDT isn't right for everyone. If Levo isn't doing the job and a combo hormone replacement is needed, there are two ways of doing it.

    1) NDT which has a fixed amount of each hormone ie 38mcg T4 and 9mcg T3 in every 1 grain tablet (NDT comes in 'grains'). This is made from porcine thyroid with added fillers needed to make a tablet.

    2) Synthetic T3 added to Levo. This has the advantage of being able to tweak the doses to give an amount of T4 and T3 which suits the individual. This way you can still get your free prescription for Levo and an enlightened endo may suggest T3 and if you're lucky your GP will prescribe it. Some members are lucky but a lot of us self source T3.

    You need to know your FT4 and FT3, tested at the same time, to know how much T3 is needed before doing anything about changing from Levo. If you are converting T4 to T3 well enough you won't need to add it but you might need an increase in Levo because of your symptoms - the more Levo you take the more T3 you make if you convert well. Again, you need FT4 and FT3 tested at the same time to know if you are converting well.

    Getting all your vitamins and minerals to their optimal levels helps thyroid hormone to work properly. Supplementing with selenium helps with conversion.

  • See all this you have wrote ... it's a bit like my old chemistry teacher telling stuff! It's all so complicated !! Tooo many layers for a average human to work thru all this You may need this with that or test this to take that !! What the fudge are we supposed to do and know where to start!!!!

    I really really don't know what to do for the best ! And that's the problem with this condition it's not 1 Problem with I answer

    Tooo many different opinions

    I am sorry if I'm being blunt but

    I'm just so fed up with looking for a answer n getting a hundred choices that may not even work and not even knowing how to start changing things !

    😥😡😡❤️

  • mummyG - you have two choices

    1. rely on the medical system and big drug companies (which have failed you to date) .

    2 Take ownership of this issue and start studying like you want to pass your uni entrance Chem exam.

  • SeasideSusie. NDT does work for everyone. But you need to fix your underlying adrenal issues (same for thyroxine). It will take 6-9 months to do this. To function correctly the Adrenal system needs hormones that the Adrenal system it's self makes. So it's like a dog chasing it's own tail. Once your Adrenal system spirals down it's hard to get it back.

    Example Myself. After 3 years of successfully taking thyroxine (Levo), I crashed and burned after taking an antibiotic. I then struggled for 6 months trying to take anything (NDT/T3/Levo). I kept bumping up against a glass sealing at about 1/2 a grain or 30mcg. I was supplementing Vits, taking D3/B12/Iron/Iodine/.... etc but same issue. Then I started on TRT (Testosterone Replacement Therapy) and within a week I was able to raise my NDT to 1 grain per day and now 2.5.

    You just need to find the underlying issue (root cause) and fix that. Doctors are really bad at this, they will hand you drugs to address side effects. Then the issue is these drugs have their own side effects. Before you know it - you are totally messed up.

    Anyway if you have something that works and you don't have too many side effects - stick with it.

    regards

    James

  • jamesal0 NDT does not work for everyone, and I am one of those people. Over two years I consulted with Dr Peatfield and then Dr Skinner. During that time adrenals were tested (saliva tests) and addressed and different thyroid hormone tried alone and in combination - Armour, T3 alone, NDT and T3. None helped. I am not the only member who didn't do well on NDT. I take Levo and T3 now and that's working better than anything else.

    One size does not fit all.

  • You find a Chemist that will sell you NDT and ask them which doctors will prescribe it. What Country/City do you live in.

    Or you go really feral and buy it on line from Thailand.

    Go the first option if you can.

    No matter where you source it keep you local doctor sweet so you get regular blood tests. If that means not telling him what you actually take well so be it. Start reading everything you can stopthethyroidmadness.com/

    Get your T3 and T4 levels right and don't worry too much about TSH

  • I'm in uk. Hertfordshire

    I didn't think ANY chemist sold NDT I think I shall order some from afar!! And I shall get reading xx

  • I've seen UK peoples discussing NDT purchase in the UK. Post a fresh post in a few days and ask.

  • Hi I am quite new to this forum. I had my Thyroid out last year before that I was on no medication at all. I had a deviated trachea. I was started on 100mg levo in Nov 2015 by May 2016 I was in lots of pain hand legs hips etc. I was low temp and had constipation. I was never ill before my op and was always fit. I knew that it wasn't right so I changed myself to NDT. I raised the dose as suggested on this site and got to 3grains per day split into 2. I was going to the loo 2/3 times per day and had hot flushes so I reduced to 2 grains per day. I am more or less back to normal. before thyroid removal. By the way I am 70 years old and live in France they do not have NDT here so I got it abroad. Hope this helps.

  • did you ever have pain in feet hence i have one weak ankle and plantar fascitis that showed up again when i started ndt....i am on 1.5 and blood test show that is ok..but i am wondering if i need 2 grains to relieve finger swelling in the am and the left foot pain on the bottom of foot......i am 55 so i was wondering it you had any experience in that

  • No not that sort of pain ( I have had that plantar fascia thingy years ago).

    The only way I can explain it is like I have fizzy blood running all round my legs .. and I am just aware of them all the time .. U don't usually think about your limbs .. u just are .. u just get on with the day ... but I'm sitting here now on my sofa n all I can feel is my legs aching ! Bit like a knawing toothache ! ☹️️☹️️☹️️

  • have you tried magnesium glynate before bed for that...and vitamin d3...i had something similar to that before i started taking magnesium 400mg b4 bed and made sure my d3 level was upper range of normal.....they are several magnesium and some make you go to bathroom and some more absorpable...and deficiency is very common and it helps 300 functions in the body...i also use magnesium oil from health and wisdom

  • Hi I had an old injury 30 odd years ago to my ankle. When I was on levo I had a similar pain in the old injury plus loads of others. I also had it when I started on NDT but now its gone completely I think therefore that maybe you are under medicated on 1.5 and need to slightly increase. It takes weeks at a time to feel the new dosage. What about your temp. I take mine in the morning. Good luck. Its a lot of hit and miss I know.

  • thank you bec that is s so so similar to my situation...i had no pain in that ankle or foot although i did injury that ankle several years ago and i was wearing wedge heels fine with no pain and after starting ndt...in 2 weeks i had severe pain in that foot and having to wear special vionic orthotic shoes and some swelling in my right hand....i had been on t4 so i also thought that was too much of a connection between the recent change....i think i will increase my dosage for the next 3 weeks b4 dr appt to see if it goes away......thank you so much for your reply....!!!!!!!!!!!!!! I do know that several years ago while i was on t4 only my labs were great but i started having pain in my elbow and wrist and hand and feet and convinced that dr to let me go from 88mcg to 100mcg and all pain vanished......

  • I forgot to say that I now have no pains can walk and back to my yoga 2/3 days per week I am also going to the loo ok just once per day and have a normal temp.

  • Did your 'constipation problems' start around the same time as your aching legs?

    Do you have any issues with your bladder or 'passing water?'

    Have you had any back problems or back pain recently?

    Cast your mind back and try to recall as much as you can. The more information you can give the docs, the easier it is for them to 'put the pieces of the puzzle' together.

    Pain primarily in your lower half is definitely not typical of Fibromyalgia so try not to worry too much. Finding out what it is, is half the battle.

  • Don't expect your GP to recognise any nutrient issues, unless results are below "normal range"

    With thyroid issues we typically need vit D at least around 100 level, (range 50-175) not bumping along in lower half of range (mine was at 30 when tested. Many on here find their even lower than that)

    Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

    hypothyroidmom.com/92-of-ha...

  • A series of comments have been removed as per our posting guidelines.

  • I have both hypothyroid and Fibro. As well as scoliosis, arthritis, etc. I can relate to your leg pains and joint pains. It's worth getting assessed for Fibro. It may not be all your thyroid causing this.

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