Severely swollen feet and ankles with fibro

[Corny67]

I’ve had fibro for almost 12 years now. This has never effected me before however my feet have always ached every day but now they are so swollen. I’ve gone from a size 5 to having to wear size 8. Not just my feet but around my ankles and the back of my feet too. They are rock hard. I was seriously ill at the end of 2016 due to complications with Graves’ disease and was in hospital for two weeks after my legs stopped working all together. I had to have plasma dialysis for ten days so that I could have an emergency thyroidectomy. I’m wondering if it’s fibro or something to do with my illness last year. I know the cold wet weather seems to infuriate most people’s fibro but I’ve never had this before. My dr seems to think it’s because of the myopathy to my legs but I’m starting to doubt that. Any input guys x

[helvella Administrator Thyroid UK]

Corny67,

We need a bit of clarification and extra information, if you can.

Did you have a total thyroidectomy?

What thyroid hormone treatment have you been on (e.g. levothyroxine) - what dose?

Are you taking any other medicines? Or supplements?

Do you have any recent thyroid hormone test results? Or other test results? Give us reference ranges as well, please. You are entitled to get this information from your GP surgery.

[Mary-intussuception]

You could ask your GP about Lymphoedema and take a look over on LSN forum. Read through some posts? Have you had Kidney function blood tests since this happened.

[Jazzw]

How much levothyroxine are you prescribed? It seems likely you’re under-replaced. If you have thyroid blood test results, do please post them.

The swelling could be mucin, which is a hypothyroid side effect. Alternatively, you may be having heart or kidney problems - but hopefully your doctor has thought to check for those?

[Heloise]

Yes, what helvella asked. If you are not being treated for hypo, it could be due to that. If salt intake is high, you need to take potassium to balance it.

[humanbean]

My feet caused me pain for many, many years. The problems went away when I improved my T3 levels and optimised my basic nutrients i.e. iron/ferritin, vitamin D, vitamin B12, folate.

[Howard39 in reply to humanbean]

Hi

Yes I agree with humanbean mine disappeared with more optimal t3. Mine was 0( thanks so much to my gp!) It would be a good idea to post all your results- you need adrenals to be working well and vitamin levels to be optimal too. Surprised your gp did not test creatine levels. Dandelion root is v good to reduce swelling but you need to ascertain what the issue is.

You usually only get lymphodemia following lymph node removal and say the arm / leg was not fully drained or an infection/ sustained a break in the skin from a thorn/ needle/ bites.

Usage of veg oil ( if I am away and not cooking myself )causes my legs to become swollen and tight.

Good luck.

[Marz]

How was your Fibro diagnosed ? - GP or Rheumatologist ?

[Corny67 in reply to Marz]

It was my gp when I started telling her how I felt a year after a bad accident and injured my back x

[SlowDragon Administrator]

Add your most recent results for TSH, FT4 and FT3 plus thyroid antibodies and vitamin D, folate, ferritin and B12

Members can advise

[Venus77]

I'm very sorry that you're suffering so much. I know how awful edema is. I've had extremely severe edema in my feet and legs for 18 years. More recently, I also have it in my face (which looks horrific). Like you, I was diagnosed as having fibromyalgia but I'm sure that, in my case, this was an incorrect diagnosis and that my long list of dreadful symptoms is actually due to untreated hypothyroid (as my FT3 is below the reference range). Hypothyroid can cause edema. Are you on thyroid replacement medication? Edema can also be caused by poorly functioning liver or kidneys or heart. Has your doctor checked the health of these organs? X

[Corny67 in reply to Venus77]

I now take 150mg of Levo every day as my last results showed my bloods were very under now. I knew it would take a couple of years to get the dosage right and I lost my mam last summer and that's just sent my fibro into freefall. I just can't bare anyone touching me or wearing shoes. Even a bra is causing chaos so I've been wearing a sports bra which is nice x

[SilverAvocado]

If this list of requests for blood tests are overwhelming and your doctor will never do them, you can get done through mail order, finger prick tests from BlueHorizon or Medichecks.

I'd start with a full thyroid panel: TSH, freeT4, freeT3, and the vitamins most relevant to those: vitamin D, vitamin B12, folate, ferritin, as doctors rarely do the full set. Some of the more specific tests you may be able to get from your doctor.

[Corny67 in reply to SilverAvocado]

I'm going to the hospital tomorrow to get my full bloods done as I have an appointment with my endo on Friday. I'm still enemic and I have to take calcium tablets for the rest of my life. Thankfully my Dr is amazing x

[Marz in reply to Corny67]

Some bloods are not automatically done and that includes the ones people have kindly mentioned here. Please read through your thread again and make some notes.

You are legally entitled to copies of your test results so you can monitor your own health and see what your GP has missed eg FT3 test and thyroid anti-bodies.

Your GP maybe very nice but ....

Read Dr Sarah Myhills website about bones - calcium is just one small part of bones and not always good.

[Corny67 in reply to Marz]

I only ever get my bloods done at the endo clinic and they test me for the full lot x

[Marz in reply to Corny67]

So do you have the copies so you can post the results here ?

If your Endo does everything mentioned here on this thread then he must be a gem. Do contact one of the Admins and let them know his/her name so they add it to their list of GOOd Endos which they have compiled to help members.

[Poppy_the_cat]

Hi please look at my previous posts ref; Probiotics and kefir.

This will help, without chemicals or further medication.

Poppy the 🐈

[Corny67]

I had a total thyroidectomy in December 2016. I'm now taking 150 levothyroxin every day but have only been taking the bigger dose for 2 weeks as my endo said my results had now hit the floor. I'm getting my bloods done again tomorrow and seeing my endo on Friday so I'll post results when I get them. Sadly I have degenerative disc disease aswell after an accident so I do take a lot of meds.

110mg morphine a day

600mg Nurofen 3 times a day

50mg amatriptalene a night

Paracetamol

Iron tablets

Calcium tablets

Gabapentin think it's 90mg

Hrt because of a full hysterectomy when I was 29.

They did find a little cancer in the thyroid but it's just a blood test for the next 5yrs. I've had radiotherapy on my eyes last year because of thyroid eye disease and steroid infusions. I was diagnosed by my Dr for the fibro but I've had x rays and mri on every part of my body. Sorry it's quite a long reply x

[SlowDragon Administrator in reply to Corny67]

Insist they test your FT3 as well as FT4

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
[e-mail]

Prof Toft - article just published now saying T3 is likely essential for many

Note especially his comments on the current inadequate treatment especially for post RAI or thyroidectomy

rcpe.ac.uk/sites/default/fi...

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne
[e-mail]

[helvella Administrator Thyroid UK in reply to Corny67]

Corny67,

Just wondering if you make sure you take your levothyroxine well away from all other medicines, food, drink (other than water)?

Might be difficult with everything you are taking, but so many things interfere with levothyroxine and its absorption.

I don't know, and have not checked, which of your medicines directly affects thyroid hormone requirements. But most certainly iron and calcium can significantly interact with levothyroxine in the stomach and gut.

[Corny67 in reply to helvella]

Yes I do make sure it's away from my other meds so my endo worked it out and the best time for me to take the Levo is 6pm every night. I take my iron on a morning so it's well away from that. It's difficult trying to keep on top of the pain at specific times of the day to make sure I'm clear for my Levo at 6 x