Leg/arm ache and speech difficulties for 20 years - high TSH

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Hi,

Since i was 21 (now 41) i have suffered from lower leg heaviness - brought on with activity and often warm temperatures.  The symptoms were sudden. The symptoms peaked in my mid 20's but are still with me and upon any moderate exercise quickly reappear leaving me with very heavy, lead-like legs. The same thing happened to my arms a few years later and again worse in warm conditions. I have had a fasciotomy, biopsies, back scans and tried many alternative remedies.   I am trying to do what i love which is running and swimming and both are curtailed considerably.  Some days after a short run my legs feel like they are about to explode. Just walking up stairs makes my legs throb.  Bizaarly i tried an iron supplement (following on from lowe levels of iron in my bloods - see below) which did have a temporarily positive effect on my ache.

My other main sympton is a perplexing speech problem.  Feels like i just don't have any air to get the words out. Is this air hunger?  It's not a stutter but it may sound like one.  It's worse in the morning when i struggle to string out a coherent, fluent sentence and is also worse when i talk for more than a few minutes. I have tried speech courses and for the last 15 years do speech warm up exercises every day which has made a little difference.

Other symptoms:

Difficulty swallowing - infrequently and usually at bed time i am gripped a Sudden intense bout of panic as i struggle to swallow. 

Dizziness upon standing

cold and often white extremities

Latest bloods:

T4 - 14.2

TSH 7.60 (was 4.88 last year)

RBC count - 4.43

Haematocrit - 0.41

My doctor thinks it's all normal yet these symptoms whilst not debilitating (though they were in my 20's) significantly hamper my life's goals - i want to be a good runner and be able to socialise properly but strugle on both counts despite 200% determination. I am running out of ideas but the high TSH is the first indication that maybe it could be the thyroid.

thanks

 

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6 Replies

  • Posted

    HI,  Sorry to hear that you are having such a struggle with your health.  I have experienced hypothyroidism and have had unusual symptoms with my legs but they were very cold as my temperature was so low.

    When you post your lab results could you post the ranges for each of those tests please?  I am in Australia - are you in the UK?  I am unsure of the ranges overseas.  Even here they vary greatly depending on the Laboratory used.

     Your cold extremities and dizziness upon standing can be caused by anaemia and if anaemic your thyroid gland will not convert T4 to T3 efficiently.  In my opinion getting your iron levels into a healthy range and taking a good quality multivitamin and being on a good nourishing diet and not over exercising could help a lot.

    I can only tell you what I have experienced myself ... and taking a little extra iron can do wonders.  People who are hypothyroid are usually low and need to lift their ferritin levels - so make sure the doctors check ferritin when doing tests for full blood count.  It will usually come back 'within the range' but the range is ‘huge’ and everybody needs to find their 'sweet' spot within that range for ferritin.  You may only have to raise it slightly to relieve symptoms of back or hip pain.  This could help your arm and leg pain.  You may have to try some different Iron supplements until you find the one suitable for you.  I am still experimenting with finding the perfect one for me.   I keep my ferritin topped up by taking a low dose iron supplement and I have no pain now.  Always get a copy of your blood tests for Iron and thyroid.  Your thyroid will not work optimally if iron levels are low.

     If you get your iron levels up and your TSH is still outside ‘the range’ then you could be hypothyroid and if you are not getting any satisfaction from your doctor then you should change to another one.  You may have to go to several doctors before you can get any help as GP’s are generally not up to date on thyroid matters.  This can be depressing for patients who are unwell and looking for answers but you must research and learn as much as you can yourself about thyroid conditions so that you can stand up for yourself.

     As you are having problems with your voice and swallowing etc. I would have thought that any doctor would consider getting an ultrasound done in case your thyroid gland has become enlarged.  I would be asking for one to be done.

     I hope some of this information is helpful for you.

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  • Posted

    many thanks sketchy. yes in the UK.  here's my results with ranges:

    T4 - 14.2 (range is 11 to 24)

    Serrum ferritin 95ug/l (30 to 400)

    TSH 7.60 (0.35 to 4.50)

    RBC count - 4.43 (4.50 to 5.90)

    Haematocrit - 0.41 (0.41 to 0.53)

    I have tried Ferroglobin for iron and it had a short lived benefit to my symptoms.  I have done some reading around and have found a new brand called Spatone which has the greatest % of iron bioavailibility of the supplements so have just ordered a supply.  Yes starting to believe i just need to find that level for me. Fingers crossed spatone works better because last few weeks my legs have felt like lead again. Did a run this morning and after 10 minutes was reduced to a shuffle felt like a old mansad  but then a month ago i was running well so really annoys me how the symptoms play havoc

    thanks again

     

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  • Posted

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  • Posted

    Hi jambam,  Thanks for posting your results with ranges.   Your results do point to Hypothyroidism.  Your TSH, although an unreliable guide - is above the range and the t4 is quite low – I think t4 is supposed to be in the top quarter of that range.  So it appears to me (and I am not medically qualified just a bit ‘thyroid savvy’ after struggling with mine and also my daughters problems) - that your thyroid gland is not making enough thyroxine.   Your RBC count is below the normal range – making you anaemic and Haematocrit also very low.  Ferritin – now that’s the tricky one to try to maintain at a optimal level – although it appears to be within the range at the moment it will rise when the RBC count and Haematocrit rise.

    My daughter is taking Spatone daily – it is good and does’nt upset the stomach but I think the pick up from it is perhaps rather slow.  It is one of the lightweight irons.  There are quite a few on the market these days – I think they are ok to take on an ongoing basis.  I believe the Ferroglobin is also in this category.  When you are actually anaemic I think it’s good to take one of the more heavy duty ones for a while and then switch to the Spatone.   That is what I am doing – switching back and forth as the iron levels fall and rise.  I am still experimenting with iron and I have come to recognise the signs of it falling off again.  Aches, yawning a lot in the daytime, foggy brain, fatigue etc.  When I say ‘heavy duty iron’ – I mean something like FGF which is Ferrous Sulphate 250mg + Folic Acid 300mcg.  I know doctor’s warn against taking too much iron but in my case and I suspect most thyroid sufferers find it difficult to keep their iron levels up.  Then again, it might suit you to continue to take the Spatone as long as you keep it as an ‘ongoing’ treatment and not let the levels fall away again.  Experimentation and close observance of your symptoms by yourself will serve you in good stead.

     Maybe it would be good for you not to run until you are no longer anaemic – you may be putting too much strain on your body at a time when it is unable to cope.

     Also, you might want to visit another doctor and see if they think you would benefit from a low dose of thyroxine.

     I hope you will be feeling better soon …

     

     

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  • Posted

    Thank you Sketchy, info very appreciated.  Seeing doc on Thursday re: thyroxin. 
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  • Posted

    Hello jambam, I hope you have had your problem sorted out. One thing that could be that maybe, in addition to the thyroid secretion problem that an enlargement could be pressing your windpipe and eshophasgus.

    For the legs have you tried compression socks like those used when air travelling?

    Also they have these tight 'skins' suits that are supposed to compress muscles to keep the blood flow better. But best I think would be get the underlying problem fixed of course, so you should press the doctors. Good luck and as said, hopeufuly you have got it already good.

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    • Posted

      thanks heidi, yes i've tried the socks but made my symptoms worse.   Also have a skin suit and no different.  the enlargement issue sounds possible. with my odd list of symptoms i often think it must be something obscure. i've had a back MRI but not anywhere in the throat area.   just need to convince my doctor!  i've been on thyroxin for 2 months now and when i upped to 50mg/day i did feel some lightness in my legs but overall not much better.   strangely when i took some iron i felt worse again. 
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