Living well on NDT but need advice please.

[Magne17]

(Age 49. My settled dose for over a year now is NDT 1&3/4 grains per day plus 25mg Levo).

Hi, I've thankfully been living well on NDT for 4 years now, finally getting on the correct dose to relieve symptoms, that were ongoing when on Levo only for previous 17 years.

However on and off for the last 3 years I have had at times severe swelling in my knees, causing my mobility to be affected. I have previously been quite active, walking cycling, running over the years.

My question is, does anyone know if fairly severe knee swelling could be connected to thyroid or thyroid medication be a factor? I assumed if I'm on an optimal dose then this would not be the case? Are there any other people who have been affected with this?. I didn't have Knee problems before starting NDT, my bloods are monitored regularly and appear fine, I have no symptoms of hypo/hyper (my t3 is never over range). I'm seeing a consultant next week to discuss my knees and a physio has indicated wear and tear arthritis causing the swelling. I am mostly able to get it down with yoga/ice/ compression but it can flare back up again at times, like now. It is very debilitating and after all the years suffering on Levo, it's very disappointing and frustrating to have this happening.🙄

Any knowledge of whether it could be linked to thyroid or anyone else affected would be great to know.

Thank you for any possible help

[Aurealis]

I really don’t know. I just wonder if your thyroid condition is autoimmune and whether the knee problem is another autoimmune condition?

[Magne17 in reply to Aurealis]

Thanks for reply. It appears to be wear and tear osteoarthritis rather then rheumatoid but still getting it looked at to be certain x

[shaws]

Swelling can be a clinical symptom of hypothyroidism. Is your TSH 1 or lower? The blood tests were invented along with levothyroxine, so if we add NDT or T3 the results will be different but the best way is to judge if a dose is optimal is by 'how we feel' on a particular dose.

I am not medically qualified but I'd be apt to add 1/4 tablet of NDT to see if that relieves your pain.

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

I shall also give you 3 links which were by an Adviser to TUK before his untimely death which might be helpful:

Copy and paste the tinyurls.

Dr Lowe died through an accident.

Chapter 2

tinyurl.com/ya5blrr2

Chapter 3

tinyurl.com/y7ejh9sh

Chapter 7

tinyurl.com/ycxpz565

[Magne17 in reply to shaws]

thank you shaws! I really appreciate your response. I have printed off the links to read. Very sad he passed away.

My tsh is supressed but I do wonder if raising my dose by 1/4 might help. I have had a lot of stress the last month and wonder if this has contributed to this particular symptom being currently worse. Other than this I don't have any other noticeable symptoms and feel generally well, no fatigue etc. I am seeing a consultant next week to hopefully rule out mechanical issues, the swelling is the problem as it is so acute and even walking is a problem when it gets this bad. Thank you again for the links to read up on, its just a comfort to have the support if thyroid is playing it's role in it all.

[shaws in reply to Magne17]

I don't think suppressed TSH is anything to worry about although the professionals will tell us differently. If we take NDT the tests they use are for levothyroxine alone, not if we add T3 or take NDT. People who have had thyroid cancer take sufficient dose to suppress their TSH, so why don't they have heart problems. We are apt to get heart and other symptoms through not sufficient dosing of thyroid hormones and T3 is the only Active one. T4 is inactive and has to convert to T3 and sometimes we don't convert efficiently. Another link to Dr L:-

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

[Judithdalston]

A question I would like the answer to as well! Had swollen knees, notably above and inside of above to below , and dagger- like pain or extreme sensitivity to touch. Had various scans: X-ray and MRI, physiotherapy, even NHS acupuncture but never made much difference. No obvious arthritis/ rheumatism etc. Recently wondering if it could be thyroid related, among other problems, and about to go down taking T3 too.

[Magne17 in reply to Judithdalston]

Thanks for your reply Judith and interesting you have experienced similar. Itis the front of my knees that swell, one much more than the other currently. A physio said I may have a bakers cyst at the back and that swelling was the cause of my mobility problem. It's justvthe amount of selling relative to the cause that makes me think thyroid is a factor, as if the swelling is far worse for me them it would for someone without a thyroid problem. After I see the knee consultant I can look further into it all and will post back here. hope you are ok xx

[shaws in reply to Judithdalston]

This may help:-

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

[silverfox7]

I've usually found symptoms like that be down to too much medication so be prepared to try that as well. My last results were fine but my feet were swelling but a lot of negatibe things have happened recently. My FT3 was in range but near the upper limit. Just seen Endo for routine visit and he has said drop dose a quarter so I'm gradually cutting back and feel better and look better! Today will be the first time I shall have two days together on a lower dose so will see how it goes. Endo sent me home with two repeat blood forms, one end of October when I see him but another to check where my. Looks are when been on the lower dose for 6 weeks.

With NDT I've never been sure were I am when I'm close to being spot on so do consider the reducing option as well.

[Magne17 in reply to silverfox7]

Hi silverfox, thanks for your reply, good to hear your experience. I have been under stress and wonder if that has caused a knock on effect to result in being hypo. I will consider what you say too though and lookout for signs of either hypo/hyper as a factor. x

[silverfox7]

Well I do thing stress can effect our results but don't know to what extent