Lymphatic system/fluid retention: Hi my lab... - Thyroid UK

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Lymphatic system/fluid retention

Sugga123 profile image
17 Replies

Hi my lab results are 0.26 TSH, 5.6 T3 and 15.1 T4 . I have hashimotos.

I seem to have a very sluggish lymphatic system or water retention. My fingers swell and get worse due to heat causing pain. I also get this all over my body and have bulging not pitting type odema at the top of my shins towards the inner side. The more I move the more this increases all over and causes pain including the bottom of my feet.

Does anyone have any suggestions or heard of this before?.

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Sugga123 profile image
Sugga123
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humanbean profile image
humanbean

Do you have the reference ranges for your results? They are required to help us determine whether your results are low/good/high in range.

medicalnewstoday.com/articl...

The above link has some good information on water retention, and even some self-help suggestions. You'll have to tell us which ones might be connected with your problem. For example have you had your kidney function checked in connection with your water retention?

Are you taking thyroid hormones? If yes, what are you taking? and at what dose?

Sugga123 profile image
Sugga123 in reply to humanbean

Hi there the normal ranges are TSH: 0.38 -5.33 mU/L, Free T4 7.9 – 14.4 pmol/L, Free T3: 3.8 – 6.0 pmol/L. Hi my lab results are 0.26 TSH, 5.6 T3 and 15.1 T4 .

I have a gp phone call tomorrow due to my tsh but the t3 and t4 are within range.

I'm currently on 125mcg eltroxin.

Kidney function is good.

This all started following a tsh reading of 87 a few years back. The funny thing is when my tsh was 87 I just kept falling asleep and had anxiety and reflux but no pain apart from a bit of ankle pain.

About 6 weeks following an increase of levothyroxine from 25mcg to 150, I notice the water retention type swelling, then 6 months later I lt started causing me pain and I noticed the puffy areas around the top of my shins, hands and generally allover my body. I also get urticaria and react to high histamine foods.

healthkiwi profile image
healthkiwi

This is Mucin. It used to be one of the diagnostic signs of hypothyroidism. See: myxedema of skin / cutaneous myxedema - meaning "swollen mucus". Nowadays it's almost forgotten about, or regarded as cosmetic!!!! i.e. go away, not important, don't bother us.

The excess weight so many of us get is NOT just "fat" - it's mucin. Waterlogged mucus membranes under skin. Makes it look smooth solid, can't pinch the skin. It is NOT lymph, and lymphatic drainage for me hasn't altered it.

"Pre-tibial myxedema" is classic sign of thyroid disease.

ncbi.nlm.nih.gov/pmc/articl....,

About halfway through very long article, under heading Hypothyroidism, in the section re Myxedema, they say

"Myxedema due to hypothyroidism is associated with normal or inactive dermal fibroblasts due to systemic infiltration of glycosaminoglycans chondroitin sulfate and hyaluronic acid. These glycosaminoglycans proteins then accumulate in the subendothelial later of vascular capillaries and lymphatics, leading to loss of plasma protein into the interstitial space. Additionally, glycosaminoglycans have the ability to swell in size through water retention up to 1000x its original size. The pathophysiology of myxedema is not clearly understood but it is attributed to prolonged stimulation of fibroblasts by TSH, similar to the mechanism of TSH receptor antibodies in Graves’ disease causing myxedema."

I struggle to find anything that helps. My shins and calves hurt if massaged even lightly, my cankles are solid, my inner forearms also smooth and solid. Someone here ages ago suggested NAC, but says it takes months IF it's going to work at all.

Would love to hear anything that works.

Batty1 profile image
Batty1 in reply to healthkiwi

I have this terrible all over my body but my upper arms are the worse its hurts to even get a blood pressure check.

Sugga123 profile image
Sugga123 in reply to healthkiwi

Thank you I will have a read, I have heard about mucin before. It seems to get more swollen in the heat too

Sometimes I wonder if I have been on too much t4 for too long. I never seen to be able to lose any weight either

RoseF3 profile image
RoseF3

I have this problem in the exact same places. The only thing that seems to be helping is T3 only, very, very slowly but it is making a difference as I up my dose. My fingers are so close to being normal again, the shin in towards my knees are taking longer but I’m not sure I’m at my optimal dose just yet.

Sugga123 profile image
Sugga123 in reply to RoseF3

That's really interesting, how did you manage to get T3? My gp isn't interested however I was surprised this time that he tested T3 and T4 because usually they don't. I'm glad to hear your starting to feel better gradually

RoseF3 profile image
RoseF3 in reply to Sugga123

I paid to see a private endo, it was still a fight to get the T3 only as he likes T4 with T3 but he could also see I wasn’t getting on very well with it so we’re doing a bit of an ‘experiment’ so I can show him how well I’m getting on - he doesn’t think I will feel well with no T4 but I’ve quite honestly never felt better!

Sugga123 profile image
Sugga123 in reply to RoseF3

That's great to hear, not many people can say they've never felt better. I didn't know you could take T3 only. Just out of interest so you have hashimotos?

RoseF3 profile image
RoseF3 in reply to Sugga123

Yes I do have hasimotos. He really doesn’t like or recommend T3 only as a lot of endos seem to be the same but it’s hard to argue when his patient is feeling much better sat in front of him!

Sugga123 profile image
Sugga123 in reply to RoseF3

Love this! Just shows doesn't it.

I've spoken to my gp today he has reduce my dose and doesn't think my other issues are link to my hashimotos. He has ordered a blood test but they usually come back normal no action.

RoseF3 profile image
RoseF3 in reply to Sugga123

Yeah when I was on T4 and T3 everything looked perfect but I felt far from perfect, my biggest issues were energy and the mucin. I now have such a clear head and so much more energy - I’m able to walk over 10,000 every day now which I couldn’t before! I know T3 only isn’t for everyone but I’m so glad I’ve given it a go.

Sugga123 profile image
Sugga123 in reply to RoseF3

So did you say you saw a private endo? If so do you mind if I ask where?

Sounds like you've got yourself back almost whish is great. I cant walk any where in the heat at all. It's 23 degrees to day and my feet and hands are puffy and I've not even been out in the sun.

When it's not hot I struggle to walk for long so I haven't been away on holiday for years because of these issues. I would.have loved to have gone to Paris last year with the girls but they do so much walking it wouldn't be possible.

I'm grateful as it could be a lot worse however it would be nice to get some improvement xx

Jaydee1507 profile image
Jaydee1507Administrator in reply to Sugga123

Recommendations for doctors or Endo's need to be by private message only as per group guidelines: healthunlocked.com/thyroidu...

If you would like a recommendation you can make a post asking for recommendations by private message. The post will be locked to prevent any information being posted publicly.

You can also email info@thyroiduk.org for a list of T3 friendly Endo's.

healthkiwi profile image
healthkiwi

Just found this 5 year old thread healthunlocked.com/thyroidu...

Really, this site contains all wisdom - if only the search facility was better!

Sugga123 profile image
Sugga123 in reply to healthkiwi

Perfect thank you.

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Free T4 (fT4) 15.1 pmol/L (7.9 - 14.4) 110.8%

Free T3 (fT3) 5.6 pmol/L (3.8 - 6) 81.8%

You do look slightly over replaced BUT a lot can depend on how you took the test.

The following protocol is recommended to give consistent results and highest TSH:

Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the 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.

Have you also had your key vitamin levels checked lately and do you supplement them?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? 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.

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