I have for many years suffered from painful water retention in my buttocks and legs. I am also unable to pinch the skin on my upper arms.
Ive recently been prescribed a diuretic to see if this will help. Do others have a similar issue? Or is it a sign that I’m still under medicated? My legs are painful, my knees are painful. It never ends does it….🤪
Hashimoto’s/ Hypopituitary/ Central Hypothyroid/ taking T4 and T3
Do you have a copy of your latest results showing TSH, FT4 & FT3 plus reference ranges that you can share with us?
What are you supplementing with?
What are your latest results for ferritin, folate, B12 & D3? Its essential to test and supplement these levels to OPTIMAL for thyroid hormone to work well.
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hello. After a year and a half doing well on T4 and T3 meds, I am having the same issues.
Recently had labs done and TSH of course is suppressed, with fT4 and fT3 at 75% and 60% through the range respectively.
All the nutrients of importance are in the optimal range (this is my area of expertise), but I have edema in my legs, buttocks and abdomen, and can't seem to get rid of it. My weight is up substantially, but diet / expenditure is unchanged. Despite being a healthcare professional, I am at a loss.
I hope someone with experience and knowledge can shed light on this for both of us!
Hello Joyya,
it is startling how similar our stories are. My blood levels are virtually identical. I am coming to the conclusion that perhaps I have some resistance at a cellular level. My weight is up. My diet unchanged. If anything I eat less. I have been told that 5% of the population function outside of all given ranges. I may well be one of those but I will only know if I substantially hike by meds.
X
Our stories are indeed similar!
A week and a half ago, I bought a vibration plate. There is research evidence that it can help. So far, my legs and buttocks appear a little smoother, and my weight is UP another 2 kg. I am at a loss.
I am speechless! But I will guarantee that I would have exactly the same result!
You could always use the vibration plate to scramble eggs or mix plaster!
I found that once I'd added T3 (as mine was at the bottom of range) the mucin quite literally pee'd out of me and within 5 weeks I'd lost 5 kilos of fluid
hello TiggMe,
In the dim and distant I seem to recall an episode of this happening to me. And what was interesting is that I immediately associated it with my meds and my bodies response to them. I too was literally peeing out all the water.
Sadly it didn’t last and things… weight, water have progressively worsened.
There does seem to be a link with thyroid levels and cortisol to help with cellular uptake, have you looked into your cortisol levels?
Where are your thyroid levels currently?
Lymph massage/drainage practitioner? I have not tried it (too busy dealing with other hypothyroid issues). There are practitioners up and down the country. Other countries have it included in their ‘health system’ but I have never come across it in the NHS.
That’s a very good suggestion but I would imagine also very painful. I can barely push the tip of my index finger into myself without it causing pain. That being said, I’m willing to give it a go. Thank you.
There is reflexology which is done on your feet to drain the lymphatic system. I'll post a link below.
I have been taking diuretics since 1976, about the same time I had an increase in ndt prescription. The problem was limited for years until I was switched to levo and then needed much stronger diuretics but the problem persisted. Once I decided to self treat initially with ndt but now add T3 things are massively better. I still have mucin but after decades of being ignored and under replaced by NHS that’s not surprising . However I do not carry so many extra pounds as I did previously. I expect you will benefit greatly as you are much younger and thyroid results are decent. Good luck
Me too! I have been on NDT for a few years now. I was going to add in some Levo as the proportions of T4 to T3 aren’t optimal. Now I’m wondering whether it should be more T3. Another blood test I think. This problem is very expensive.
My adopted Mum took one for years and she lived to be 100.
You may just have cracked the code for long life!
Could be I hope so.
I used a diuretic years ago when my hypothyroidism nightmare started I didn’t really notice much difference… but I can definitely relate my skin hurts to touch or pinch and I had a biopsy (unrelated to hypo) and it showed excessive mucin doctors never batted and eye to that biopsy comment.
have you been assessed for Lipodema
Is your bottom half out of proportion with top half
lipoedema.co.uk/about-lipoe...
Is your hypothyroidism autoimmune
Are you gluten free and/or dairy free
Yes I have been assessed for both lipoedema a lymphoedema. Testing showed no lymphoedema. But lipoedema is present.
I have lipodema
Already gluten free since 2016
I have found dairy free since Aug 2022 …..has given noticeable reduction in leg swelling ……probably reduced from stage 2 back to stage 1
Now zero ankle “cuff”
Swelling below knee remains and is painful. Hopefully it might eventually improve too
Oh I do wish you well SlowDragon. But it sounds as though you’ve won a few battles but are still fighting the war. I may just try going dairy and gluten free to see if there’s an inflammation connection going on.
it’s so cruel isn’t it. Why won’t people/ Doctors listen and believe. Or better still take action. It’s no wonder that we are left with no alternative than to seek answers from ourselves and each other.
It’s being driven by medical ignorance….medical apathy…bordering on medical negligence.
Because doctors think hypothyroidism is easy to spot, and easy to treat. Those with Graves or hyper should be treated by Endos, which is right as it can be life threatening.
Us hypos though are at the mercy of GP's and might get an Endo referral if we dont fit into the boxes but its considered a straightforward condition, just take Levo and everything will be fine.
And if your bloods are in range then its clearly not thyroid related and you must be anxious, depressed or menopausal. They dose by TSH which has been to be erroneous. And are fixated on blood tests and ignore symptoms.
The fact we have so many forum members struggling shows that this one size fits all approach isnt working.
Basically because it’s not their bodies. I just spoke to someone this morning about some tests I must have. Three concerns about the process. One: It’s not recommended for people with CKD. 2: It’s not recommended to have iodine dyes if you have thyroid issues. 3: apparently I have small arteries and I need a child’s size cannula (as per two previous similar instances some years ago ).
Accompanying letter told me to let the radiologist know my circumstances before the day of the tests. (CKD) which is what I was doing.
“Well these are not part of NICE guidelines. It will be done according to these guidelines. You might have bother with your kidneys for a couple of days”. Honestly I was too shocked even to ask what bother!
I keep hearing “Just following orders” in my mind. It’s at best just too much bother engaging with the patients, especially if each individual ‘practitioner’ can remove themselves of their personal responsibility by doing it according to “orders”. Where is the personal responsibility for anything these days?
These guidelines are covering a...s only. They are put out allegedly to protect the patient. Hah!
It’s not bordering on medical negligence. It is medical negligence, Adolf Eichmann style.
Hello,Sorry this is late, but I've only just seen the post. I also really suffer from mucin and water retention. I take Ndt but it hasn't helped. I do have lymphedema and this has been tested. It is worse in one leg although both legs are now discoloured and swollen. This appears to be a hereditary conditions in my case as both my father and sister had similar issues. Neither were diagnosed with thyroid conditions but we think my father was hypo but he was never tested.
My condition is much worse in summer and makes walking very difficult and it really affects any injury because it takes so much longer to heal. If you have water retention avoid stinging nettles or bites. They take an age to dissipate.
I have paid for a lymph nurse to treat me but to no avail. It hardly made any difference and she herself told me that the water was also in my skin and there is nothing that can be done for that. I have tried water tablets but they don't work either.
The only thing I have found is having legs up at night reduced the swelling in the morning so I can wear shoes and the other thing is green tea. That really makes a huge difference for me and I have three cups a day. It goes without saying that I need to keep a check on my blood tests to ensure that my T4 and T 3 levels are correct. The slightest movement up with T4 will make me swell up.
It is a horrible condition and the mucin as well makes me feel trapped in a body that does not belong to me.
I avoid mirrors now and can hardly walk because of my legs but at least the green tea has meant I can still wear boots and shoes. But I live in leggings to hide my legs even in summer.
So it might be worth trying green tea if you haven't already. Different things work for different people, but this surprisingly did for me, after about two weeks of three to four cups a day.
Does anyone take Aventis Cynomel?
DON'T Take Levothyroxine with a Full Glass of Water!
Does anyone have issues with their hands?
Does anyone out there cry a lot?
