Swollen & oedema

I'm 5yrs diagnosed Hypothyroid, and on 50mcg of levothyroxine.... This last month I've noticed how much fluid I'm holding, prescribed water tablets are working now, I have pitted oedema on my shins and my hands today gave swollen so much they ache.... Yes I am overweight, and 'dieting' or healthy eating isn't working at all even with exercise ... Anyone else the same or similar?? 

27 Replies

oldestnewest
  • Hi - I see you joined a couple of years ago.  Am sure if you have been following the threads here you will know that 50mcg is a starter dose and your symptoms could well be caused by too LOW a dose.  It should be increased every 6 weeks until symptoms disappear. 

    Do you have any recent results WITH ranges so people can have a peep and possibly give you some advice.  It sounds to me as if you need an increase.  I do not think water tablets are a good idea - as they only treat the symptoms and NOT the cause.

    Will look out for your results - TSH - FT4 - FT3 and the anti-bodies Anti-TPO and Anti-Tg.

    Your weight will not resolve whilst you are being under-treated.

    Have you had the following tested ? - B12 - Ferritin - folate - VitD - Iron ....

  • I have had treatment for extremely  low vit d, which needs re testing, I have tsh & full blood count every 3-6 months... And they just say it's normal, except my iron as I have to boost that due to v heavy periods. My doc here said I don't need to see an endo.... My Aunty lived in Germany (RAF Based) when she was diagnosed 20yrs ago she was sent straight to an endo. 

    Fed up of literally feeling sick 

    Is it better to see a female doctor too?? 

  • mine is a mister and great but you are best seeing who you feel comfortable with and who will listen to you.

  • I think the best thing you can do is have the FULL Thyroid profile tested - can you have it done privately through Thyroid UK ??   Just the TSH test does not give you the FULL picture of what is going on with your thyroid - you need all the other tests I mentioned in my reply to you.

    It is better to take control for yourself - even some Endos have little idea how to treat the thyroid - even if they do they have to abide by Guidelines which are keeping so many ill.

    thyroiduk.org.uk/tuk/testin...

    The above link takes you to the various packages of tests you can have.  So look at my earlier post to find out the tests you need.

    How much VitD are you taking - and which one ?  VitD is fat soluble and needs to be taken with good fats or the main meal.  Also if you are on a BIG dose then it is better if you also take VitK2.  D3 encourages the uptake of calcium from foods and that needs to be directed to the bones and not left to float around the arteries ....

    Please remember 'normal '  is an opinion and NOT a result.

    I am not a medic - just a gal with Hashimotos and a B12 issue.  Click onto my name and you can read my profile and my journey :-)

  • My results, these are my last lot, November 2015

    Thyroid function test, 

    Serum TSH 3.51mlU/L

    Serum free T4 15 pmol/L

    My full blood count showed, iron (red blood cell distribution) at 14.8, but 

    Mean cell haemoglobin level at 26.4 PG (range 27.0-33.0)

    Haemoglobin A1c level 41mmol/mol (20.0-42.0)

    Serum total 25-hydroxy vitamin D level 16nmol/L - vitamin D deficient 

  • Sorry with ranges 

    My results, these are my last lot, November 2015

    Thyroid function test, 

    Serum TSH 3.51mlU/L (0.3-4.5)

    Serum free T4 15 pmol/L (10.0- 22.00)

    My full blood count showed, iron (red blood cell distribution) at 14.8, but 

    Mean cell haemoglobin level at 26.4 PG (range 27.0-33.0)

    Haemoglobin A1c level 41mmol/mol (20.0-42.0)

    Serum total 25-hydroxy vitamin D level 16nmol/L - vitamin D deficient 

  • Your TSH is too high for you to feel well.  Once on treatment it needs to be around 1 or less for you to see/feel an improvement.  FT4 is also low and needs to be higher in the range

    The T4 has to convert into the ACTIVE thyroid hormone T3 - needed in every cell of your body - so that will be low too.  You need to be on a much higher dose of Levo.  You really do need to know your FT3 result - it is so important.

    The website labtests online will tell you about the meaning of the MCV etc.  I am far from an expert on those scores.  There is more than one type of anaemia - there is iron - Folate and B12 anaemia - so you need those results too to see the whole picture.

    How much VitD are you taking ? 

  • I was taking a super high dose 2 tablets once a week for 8 weeks then that's it. Going to have it checked again, as may need supplements. My other Aunty on the other side of my family, is taking calcium and is referred to an endo as she has a goitre now... She's awaiting her appointment. 

    Thank you marz 

  • You do not need an Endo to increase your dose.  Your GP should do this.   You need to be on much more T4 than the starter dose you currently take.

    You have been given lots of advice so make a list or make an Action Plan and read through the posts again. 

    Your Aunt is another post and another story.  Calcium is not the best thing to take - go to Dr Sarah Myhills website to read up on the supplements needed for osteoporosis.  She has possibly been left under treated for her thyroid for too long.

    You mention re-testing for VitD - but do not forget the other tests I mentioned in an earlier post .....

    Have you looked at the main website for Thyroid UK and had a read ?  Everything you need to know about the thyroid and beyond.  Ah I see you have been given the link by SlowDragon ......

  • Thank you, yes I have a docs appointment booked, and she is going to have my long list of symptoms, and the much helpful advice I've received of you guys, your right I have a lot of reading, re-reading tbh. 

    Thank you again so much 

  • ... really hope things go well for you at the Docs ....

  • TSH of over 3 is probably far to high when on thyroxine. 

    Much more info here 

    thyroiduk.org.uk/

    Your doctor should be aiming to get your TSH to around 1.0 (or even just below that). You almost certainly need an increase in Levothyroxine. 

    When do you take your Levo. It should be taken on empty stomach and do not eat or drink (other than water) for an hour after.

    Some of us find taking at bedtime gives better results. 

    verywell.com/should-i-take-...

    Essential to boost vitamin D - your body can not use thyroxine with out it.

    chriskresser.com/the-role-o...

    Regular Vitamin C (with zinc) may help too. 

    If you can afford to get full blood tests done...via Blue Horizon you can establish what's going on 

    thyroid plus 10 test 

    or plus 11 includes vitamin D as well 

    I am not a medic....just a fellow thyroid patient who has had to learn along the way 

  • I'm only 5yrs in, and have been reading so much but has got confusing tbh.... But that is nice and clear thank you 👍🏻

  • Yep, I blew up like a balloon.  But that is little consolation to you ;)

    I keep my feet up as much as possible and find that that gives great relief. 

    Thyroid connected oedema is normally non-pitted bodyecology.com/articles/is... so it is possible that the two are not, or only loosely, connected. 

    You could try rebounding

      Start off easy and build up

    I have never found the recommended healthy eating plan any success with T4 and put on weight the whole time I was taking it despite eating less and less.  It wasn't until I first tried T3 that I reversed that at all. Then my endo put me back on T4 so I investigated more dieting ideas.  I came across the lchf diet through a youtube video by dietdoctor.com.  That switched on a light to my one and only memory of losing weight easily - a sudden change to eating lots of saturated fat in my diet.  It works for me.  I am on a mix of meds now but the HF still keeps my weight down.

  • Rebound.... Yes bought a trampet for that.... Not used lol... Typical me, but it's my weight 😔

  • If you can stand on your own 2 feet you can rebound :)  It is now being recognised as one of the healthiest ways to exercise because it not only works on developing your muscles but also gets your lymphatic system moving, cleaning out all the toxins that build up in your body.  Just 20 minutes a day 5 days a week will make a tremendous difference to your health.

    Start by just getting on.  Use a broom (or 2) for balance if you need to.  Balancing on a flexible surface will immediately begin to exercise your muscles.  Once you can stand upright confidently, start to do the basic bounce with your feet flat and never leaving the trampoline.  Slowly increase the bounce until your heals are rising off the surface.  Then work up to your whole foot just leaving the surface.  Use your arms for balance to start with but, as your confidence grows, start to include them in your bounce in order to increase lift. Only then move on to doing more complicated exercises.

    If it takes time to get to this point don't worry, every time you step onto your rebounder you are exercising your whole body as well as your mind.  It will help improve coordination, reflexes and balance.  As the toxins clear it will improve your sense of well being as well as your health.  It is also proven scientifically to increase bone mass and thus guard against osteoporosis.

  • Simply sitting and bouncing your heels on a trampet is meant to be beneficial.

  • Fluid retention can be related to food sensitivities. May be worth trying an elimination diet or Paleo Autoimmune diet to identify specific food sensitivities. Also drink plenty of water. Excercise which improves circulation, such as walking, can also help.

  • Cheers, I'm out walking everyday, not much but off my butt at a lunchtime, I'm watching everything I eat too, keeping below 2000cals (my fitness pal says for me to eat 2200)  changed to higher fibre, cutting the gluten down where i can too, in a way a bit of an elimination 

  • If i were you, I would believe your fitness pal! Low calorie is not recommended for hypos (not for anyone, really), you need those calories to keep your body working properly. Besides, cutting your calories is not going to make you lose weight, because your weight-gain has nothing to do with calories. It is low T3 that causes symptoms like weight-gain.

    Gluten is all or nothing, I'm afraid. Just cutting out some of it is not going to work. :)

  • Hi! I had swelling and puffiness (mostly bottom of legs, face, hands and tops of my arms) and it improved when my doctor added T3 (25mcg) to my Levo.

    Not perfect but look more like myself and feel much better, took 2 weeks for 6 pounds of water to drain away.

  • Wow, I'm booked in to see my doc, I'm horrified to learn from the lovely ladies on here how under medicated I am....  Today's a staypuft marshmallow day, feel awful.... 

  • I know how you feel, I felt puffy, tired, horrible in my own body with a laundry list of symptoms.

    My TSH wasn't as high as yours either, 112mcg of levo and 25 mcg of T3 has changed my life. I am now going to a gym and feel great and I just found out I am 5 weeks pregnant.

    A year and a half ago I was depressed, felt ill, couldn't walk up the stairs due to pain and exhaustion and was figuring that I would never have the energy to have a family if I couldn't even look after myself properly.

    Fight for your life! Do not take a no!

    You can get through this and have a fantastic existence :D

    Good luck!

  • Great to read your success story and happy ending Rachel_81 , congratulations :)

  • Congratulations! And my list is growning, so much research to be doing, I know there's hope for my symptoms 

  • Regarding the advice above that TSH needs to be around 1 or less for hypothyroid people to feel well ...

    Your GP may not believe you, and may dismiss you, and may consider it to be irrelevant - he's seen the reference ranges and no doubt believes them totally. Doctors are not statisticians and think anything within the range is "normal". It might help if you had some information to back up what you say and show him that "anywhere in the range is not necessarily normal".

    One of my favourite research papers :

    eje-online.org/content/143/...

    Look at the right hand half of Table 3.

    It shows the median, 2.5% and 97.5% levels of TSH in a healthy population i.e. without any known thyroid disease and negative for  TPO antibodies.

    The median is the middle number in an ordered list of numbers. So 50% of the people studied had a TSH equal to or below the median and 50% of the people had a TSH equal to or above the median.

    To take one example from the table :

    Females under 40 :

    Median TSH was 1.30

    2.5% of the females under 40 had a TSH below 0.37

    2.5% of the females under 40 had a TSH above 3.30

    It is worth noting that the distribution of the results was not a normal distribution - the median was NOT in the middle of the range, and the data is highly skewed. So the gap between 0.37 and 1.30 is less than the gap between 1.30 and 3.30.

    To see a graph based on the data in this paper :

    web.archive.org/web/2004060...

    If your GP still thinks your TSH of 3.51 is "normal" I'd be tempted to look for another doctor.

  • All are great suggestions.  I recently have been trying tai chi and yoga as my form of excersize and low impact so I am not drained.  I write about my struggles and information I find at reversehypothyroidism.infos...

You may also like...