Hashmotos and swelling in legs

Although I live in US I have read many posts here re this problem. I have been bothered my this for too many years and dr cant seem to help. Sometimes I get pain in calf of leg that I cant walk. I swear it has something to do with the lymph nodes and or the thyroid meds now on 150 mg of tirosint. I thought it was wrong to take iodine-any help I can get would be appreciated, primary dr doesnt know what to do.

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  • Welcome to the forum, Emmpew.

    Swelling caused by Hashimoto's and hypothyroidism is a real problem to shift because it's caused by mucin rather than fat, and isn't reduced by calorie counting or exercise. It's important to ensure you are optimally medicated, rather than in normal range. If you post your thyroid results with the lab ranges members will advise.

    The other thing which may help is to adopt 100% gluten-free diet. This may reduce Hashi flares and antibodies and reduce inflammation caused by gluten.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

  • Sorry but I dont have a copy of my last blood tests right now but I know they were off. A few years ago I went to a dr who practiced functional medicine and was off the meds for a bit-as soon as I went back on them the swelling came back. His program also included supplements and a gluten free diet. I tried to stay to the diet as best as I could but still the swelling to the point that I cant live my life. But I have to go to work. The more I walk the worse it gets. And now the price of the supplements is way too much. I should call him for advice but I cant afford him anymore either.

    Each time thyroid meds are increased I have more problems. each endo would say the swelling was from something else but no one can tell me WHAT. Last endo said I might be thyroid resistant but I dont understand that. I just started with him so I just have to see what he can do. As fro antibodies he said I will always have them due to the hashi.

    I am sooo frustrated and so is my primary. I dont think MD's believe gluten free helps anything but I am trying to get back to it.

  • Maybe you could get T3 (liothyronine) added to your levothyroxine. You may not be converting levo to sufficient T3 and you may need T3 only to get rid of your symptoms.

    It sounds to me that you have been very poorly treated - I imagine that your dose of levo has been adjusted either up/down according to your TSH which causes us more problems. You should by now be on a dose which makes you feel well with relief of symptoms.

    This is a link which is now archived as Dr Lowe died but there's a wealth of information although links within the 'link' if that makes sense might not be accessed.

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

    web.archive.org/web/2010073...

    Many of our members now self-medicate due to the guidelines.

    Before the introduction of the blood tests/levo we were medicated according to clinical symptoms and it was increased gradually till we were relieved of them. No blood tests were necessary and if we took a little too much NDT we dropped back to the previous dose. It was all done according to how the patient 'felt' and increase/decrease dose.

  • "One of the most common causes of fluid retention (if not the most common) is low body temperature. Low body temperature is the common denominator between thyroid and fluid retention. Low thyroid function can lead to low temperatures and low temperatures can cause fluid retention or bloating, tight rings, swollen ankles, and puffy face and eyes.

    When low temperatures are normalized symptoms of fluid retention often disappear".

    The above is taken from:

    wilsonssyndrome.com/thyroid...

    Wilson's syndrome is relevant to people who have thyroid symptoms but tests don't reveal a thyroid condition. However, what is interesting is that the road to recovery is all about normalising body temperature. The same is true for Hypothyroidism. If you haven't recovered on standard meds as Shaws says it's highly likely you need T3, either synthetic or in NDT. Have you tried NDT?

    A wonderful resource to guide you through this minefield is a book called 'Recovering with T3' by Paul Robinson. It helped me enourmously and I'm now fully recovered on NDT. Here's a review of the book:

    "Hypothyroidism can most simply be described as having too little thyroid hormone. Hypothyroidism is frequently caused by an autoimmune thyroid condition known as Hashimoto's thyroiditis. Someone with hypothyroidism is sometimes said to have 'an under-active thyroid or 'low thyroid function'.

    The standard treatment for hypothyroidism at the present time is for a doctor to prescribe a medication called levothyroxine (known as T4), which is usually taken once a day for the rest of the patient's life.

    There is growing awareness that some people do not appear to recover their former health using the standard T4 thyroid medication and may remain with many symptoms of hypothyroidism including: fatigue or feeling tired all the time, weakness, feeling cold, inability to lose weight, brain fog, digestive system problems and a range of other symptoms typical of an under-active thyroid gland.

    Paul Robinson discovered he was hypothyroid over twenty years ago. After many years of being treated with T4, he still had the majority of the symptoms that had first taken him to see his doctor.

    Eventually, after many years had passed, during which all known thyroid hormone treatments had been tried, a thyroid medication called liothyronine sodium was used.

    Liothyronine is a synthetic equivalent of the thyroid hormone T3. The use of T3 finally enabled him to make a complete recovery, although there were many lessons that he needed to learn about T3 in order to regain his health.

    This book covers a vast amount of technical and practical information relating to T3 medication and details how him applied this information in order to get well. Any reader who wishes to understand more about the T3 thyroid hormone will find this book invaluable.

    The book has a foreword by Dr. John C. Lowe, who was a thyroid researcher and clinician for many years and was one of the world's foremost experts on T3 and its correct use.

    Dr Lowe wrote, 'Recovering with T3' is quite simply essential reading for any patient and their doctor if they are considering the use of the T3 thyroid hormone.'"

    It would be very useful to monitor your body temperature for a few days. I'm pretty sure you'll find it is too low. In my case changing to NDT has corrected my low body temperature (but not until I took an early am dose as my cortisol was a little low in the morning).

    Can't recommend Paul's book enough. It is a real eye opener and I found myself far more educated and confident in seeking out what I needed from Dr's having read it.

    Good luck from across the pond :)

  • Dr. Lowe totally discounted DR. Wilsons treatment using slow release t3. He also said sometimes temps don't increase or are low to genetics.

  • Hi there don't know if this will help, I had my mother inlay staying and she had. Badly swoolen legs and feet, I made sure she drunk plenty of watt and elevate her legs spall the time, the swelling disappeared.

  • Emmpew,

    You have already received good advice here from Clutter,Shaws and Hellsy.

    I too suffered with dreadfully swollen feet, ankles, legs, wrists and hands.... most of me really :-)

    As even strong diuretics made no difference, the endo I saw advised upping them to 50mg 2x daily.....he reported to my Dr that I may have ideopathic oedema....which means unknown reason. Hmmmmmmmmm.

    Since joining this forum I've learned a great deal, and am still learning. I used to accept the Dr's "all results are normal", even tho I felt so unwell, and knew I wasn't "right" despite bloods being in range.

    Now I know I have to look at my results, and see the pattern myself.

    I'm learning that blood serum levels of protein are very important, especially albumin, for helping transport fluid from the body. Without sufficient albumin, my understanding is that fluid leaks too easily into the tissues.

    From my blood test results, I can see my serum protein and albumin are very low in range, so I'm doing my best to increase protein in my diet.

    When weight increases and we can't shift it, it's easy to feel maybe we're eating too much, and eat lots of salads instead....... and perhaps that's not the best way forward.

    Heavy legs are so hard to carry. Mine are gradually losing fluid, I do not take 50mg diuretic 2x daily. For the last two weeks I've paid more attention to making sure I'm eating protein. In the past week I have only had to give a helping hand with a diuretic once.

    I don't know if this will be helpful for you,

    Wishing you lighter legs,

    tuppencex

  • emmpew,

    You might try investigating magnesium supplementation. Some good sources of reading: "The Magnesium Miracle" by Dr. Carolyn Dean, prohealth.com (has a discussion about magnesium for pain relief), and nutritionreview.org. I have Hashimoto's and before menopause suffered from leg pain similar to yours. After menopause, when my progesterone levels dropped, the leg pain subsided. Now that I am supplementing with bioidentical progesterone, the leg pain has returned. I read recently that progesterone can deplete magnesium and/or interfere with absorption of magnesium, so magnesium supplementation may be needed. It can sometimes be difficult through testing to accurately detect lack of magnesium/or magnesium levels in the body.

  • emmpew,

    From Dr. Carolyn Dean's web site, regarding magnesium:

    Nerve problems- Magnesium alleviates peripheral nerve disturbances throughout the whole body, such as migraines, muscle contractions, gastrointestinal spasms, and calf, foot and toe cramps. It is also used in treating central nervous symptoms of vertigo and confusion.

    Material excerpted from Dean, Carolyn. The Miracle of Magnesium (2003 Ballantine Books: New York, NY), 2003. pp. 5-7.

    A test for cellular magnesium called EXATEST is available at exatest.com.

  • it really sounds as though you are becoming more hypo on the levo, because your body isn't using it. T3 only may really help you.

  • blood tests dated 8/3/15 show tsh of 26.50 range 0.4-4.50 which has been coming down since I did stop taking meds and swelling went down also. T3, total is 90 range of 76-181, thyroid antibodies are 758

  • Please consider your diet and medication as a huge part of this. With Hashimoto many don't convert well, but excess fluid is due to inflammation, which causes fluid, as well as the myxedema. This and hashi's and diet have a huge issue of occurring together. I would suggest seeing Dr. Mark Hymans info on treating autoimmune disease thru diet. Food sensitivities is huge with autoimmune disease and is likely the reason we have these diseases in the first place.

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