Swelling - Both legs. At side of knees.

[McPammy]

Hi. Has anyone experienced swelling in the legs. Both my legs beat to the knee have swelled up. I went to see my GP yest. He said he had no idea why they have swelled up? Anyone had this and what to do please

Pam

[greygoose]

Are you under-medicated?

[McPammy in reply to greygoose]

Yes I think so. As I’ve had to stop/ reduce Levo as it’s making me so unwell since cortisol issue this spring. It’s catch 22 situation. My Endo has said he’ll switch me to NDT if I go private. This I’m happy to do but my next appt is 17 July. Think I’m going to call him on Monday to get prescription sooner if possible.

[greygoose in reply to McPammy]

Well, being under-medicated could make your legs swell.

What was your cortisol issue? And what did you do about it?

[McPammy in reply to greygoose]

Cortisol 68. ACTH 0.2. SST border line Addison’s. I have hydrocortisone to take but it’s nit working for some reason. They think I had a pituitary apoplexy last March as was first unwell then. Severe headache, nausea, off balance, couldn’t hold my body up as no strength. Went to hospital and was sent away as they couldn’t explain diagnosis virus. A year later a collapsed. Then 999 cortisol low. I still can’t walk any distance so weak. Been going on for 9 weeks and I’m housebound now. I’m normally a busy person with s full time job. Now I’m useless.

[greygoose in reply to McPammy]

Right. So, are you still taking the HC? Because that will blow you up like a balloon!

[SlowDragon Administrator]

Yes I had very swollen area below both knees - slightly towards inner side. So swollen and "solid" it was extremely and increasingly painful.

This only slowly improved after strictly gluten free diet, improving deficient vitamins and a year later the addition of T3.

Even after nearly 3 years being strictly gluten free and antibodies significantly reduced, plus just over a year on T3, both legs are still visibly swollen, but no longer painful. It is very slowly improving day by day

Can you please add your most recent Thyroid and vitamin test results (as requested in previous post below)

Also do you do blood test as early as possible in morning and fasting, no Levo in 24 hours prior

healthunlocked.com/thyroidu...

Essential to know if you have Hashimoto's, diagnosed by high thyroid antibodies. If you do then gluten intolerance can upset adrenals and low vitamin levels are extremely common

[McPammy in reply to SlowDragon]

Hi. I had to reduce/stop my Levo as it was making me so ill after a decade on it. I have just developed cortisol issue too low at 68 and ACTH at 0.5. I think the swelling is due to omitting my Levo. My Endo has agreed to change it to NDT but can’t get s date until 18 July. I’m going to call him on Monday and request the NDT much sooner.

[SlowDragon Administrator in reply to McPammy]

So do you have Hashimoto's? Have you had both TPO and TG thyroid antibodies tested ever

Have you had vitamin D, folate, ferritin and B12 tested recently....or ever

[McPammy in reply to SlowDragon]

I have underactive thyroid. All my vitamins checked. All ok except B12. I’ve now had B12 loading.

Thanks

Pam

[SlowDragon Administrator in reply to McPammy]

80-90% of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's, diagnosed by high thyroid antibodies..

If not had both TPO and TG thyroid antibodies tested then ask endo to do these

Medics often think it irrelevant to know what the cause is. Patients find that simply not true. If you have Hashimoto's then very likely to have hidden gluten or dairy intolerance

Low vitamin levels are also much more likely

Vitamin D needs to be around 100nmol (Uk units)

Ferritin half way in range

B12 and folate towards top of range

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[fortunata in reply to McPammy]

The sides of my knees swelled up when I was under-medicated. I’m on Liothyronine and they’re fine now.

[McPammy in reply to fortunata]

Hi. Thank you. I think I’m under medicated so hopefully once I start with NDT the swelling will go away.

Thanks again

Pam

[Saggyuk in reply to McPammy]

Yes I've got to agree with slow dragon, gluten free is well worth a try. I had legs that swelled up because of this also. I also had suspected addisons with under range cortisol and brown patches all over my skin and other typical symptoms and was referred for further testing to confirm but I went gluten free for another reason shortly after before the referral. I was lucky as my adrenal problems completely reversed (now they're a little on the high side still lol). This was what convinced my endo that I truly have a problem with gluten as had just gotten diagnosed with late onset type 1 diabetes alongside and this also reversed - maybe just in the nick of time but he was shocked at the results.

Won't work for all but most definitely worth a try

You need to be careful you don't end up in hospital by stopping your thyroid meds like that especially if you were on them so long and will only put more stress on your adrenals. addisons/low cortisol often shows with out of balance sodium/potassium so could be causing water retention

[McPammy in reply to Saggyuk]

Hi. Thank you for reply.

I didn’t want to stop Levo it was just that recently with my cortisol problem, each time I took my morning dose of Levo I felt really unwell. Wiped out all the strength. I thought it was having an contraindication with my cortisol. I recluctantky withdrew it and within 2 days I was feeling so much better. I think it’s gone too far now. I spoke with my consultant on Thursday and he agreed to change to NDT with costs. I think my legs have swelled in inside of knees due to the withdrawal. I’m going to call the consul first thing as I need my NDT fast. My next appt isn’t until 18 July. I don’t think I can wait until then! He knew I was withdrawing can’t think why he didn’t forwarn me of this.

I will also look into the gluten free diet too. Thanks for that.

This low cortisol and now thyroid has come on this spring. I’ve been in my knees now for 9 weeks.

[Saggyuk in reply to McPammy]

Hi Mcpammy

You'd really be best to get your thyroid results and post them here. You can request them from your doctors receptionist and they're not allowed to say no. Unfortunately, a large number of docs are a bit pants with thyroids and almost worse with nutritional results so it's definitely best to post them here just for a second opinion to see if they've missed anything obvious. I also agree you should have a full thyroid panel for a clearer picture even if you pay for them yourself as already suggest in previous posts. The problem is there's limited advice people here can give you without test results for them to be able to see what's going on.

It could be simple like your dose is slightly too high which would show on results. It can also sometimes be the fillers of different brands of levothyroxine. For example, I had major side effects when taking one called TEVA and many others here have also. Not so common, but other people have felt ill with ones that contain acacia due to allergies etc etc. Not being on enough thyroid meds will also kick off your adrenals.

There are many smaller things you can do to help support your adrenals, such as keeping your sugar levels stable throughout the day by eating enough food regularly and avoiding high and low blood sugar. Skipping meals for example will put additional pressure on your adrenals as will not sleeping enough etc etc. You can look up adrenal fatigue and check to see what might apply to your lifestyle.

[McPammy]

My thyroid results are:

TSH 22 it was 3 only a few weeks ago.

T4 9.5. It was 13 a few weeks ago

Cortisol 102 it has been 68

I’ve had to reduce my thyroxine as each time I take it I’m incapacitated and cannot walk or sit up. I know my TSH is calling for more T4. But I’m in a vicious cycle. I think I may have myasthenia gravitas. Which would explain my inability with complete muscle weakness. I’m waiting to see muscular neurologist at the Walton Ctr.

Thank

Pam