Rheumatologist referral : Hi guys, I know it’s... - Thyroid UK

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Rheumatologist referral

Rosie2m profile image
19 Replies

Hi guys,

I know it’s been a while but I have a quick question. I’ve been referred to the rheumatologist for hand and foot pain which I’ve had on and off since before my thyroid diagnosis last year. Does anyone know what they normally do at the first appt, should I take my Levothyroxine as usual or are they likely to spring a blood test on me lol. Thanks x

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Rosie2m profile image
Rosie2m
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19 Replies
SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking?

When were vitamin D, folate, ferritin and B12 last tested?

What are your most recent Ft3 and Ft4 results?

Have you got recent tests to take with you to the appointment

Rosie2m profile image
Rosie2m in reply toSlowDragon

I’m currently only using the better you vit d spray and occasionally iron supplements and vitamin c (I forget to take these more often than remember because I can’t take them close to levo) last vit levels were taken in January and dr has refused to take them again as they should only be done once a year if they’re in range 🙄. They also don’t check ft3/4 levels. I have tried 3 home testing kits but I just can’t get enough blood out So have given up, I actually damaged a nerve in one finger doing one of them, it was tingly and felt weird everytime I touched it for about a month so until I can get someone to do it I decided it was best to leave it. My tsh was checked recently tho and was 0.76 which is the lowest it’s been since I was diagnosed and bar this hand and foot pain I actually feel the best I have for a long time. Do you think I should take my levo first thing or wait until after just incase x

SlowDragon profile image
SlowDragonAdministrator in reply toRosie2m

In that case yes delay levothyroxine until after appointment

Push rheumatologist to do full thyroid and vitamin testing for you

How much levothyroxine are you currently taking

Rosie2m profile image
Rosie2m in reply toSlowDragon

I’m on 100 now after I pushed for an increase at the end of July. I do feel a lot better but the hand and foot pain tho it’s not all the time when I get it, it’s getting worse. Thanks slow dragon, can always rely on you for a speedy and accurate reply xxx

SlowDragon profile image
SlowDragonAdministrator in reply toRosie2m

Likely low Ft3 and or low vitamin D

SlowDragon profile image
SlowDragonAdministrator in reply toRosie2m

Hands....is this carpel tunnel?

Feet...sore heels...plantar fasciitis...common with low Ft3

thyroid.com.au/thyroid-diso...

Pain or aching sensations in your muscles or joints; tendency to develop tarsal tunnel, carpal tunnel, or plantar fasciitis

Rosie2m profile image
Rosie2m in reply toSlowDragon

No It’s literally only in the toes and fingers it feels like it’s through the bones 😔 I’m really hoping the rheumatologist gets to the bottom of it too. It’s not a constant it flares up for a few weeks at a time x

Jenny309 profile image
Jenny309

Hi my first appointment they just did a urine test ask me lots of questions and ask what medication o was on and what supplements I was taking .

Rosie2m profile image
Rosie2m in reply toJenny309

I’m guessing this is probably what they are going to do at my appt, thankyou x

Batty1 profile image
Batty1

My Rheumy did X-rays of my feet diagnosed with psoriatic arthritis which attacks my feet, calves, knees, hips and now shoulder and YES thyroid issues in my opinion can certainly make a little pain a big pain and eventually and unbearable pain.

Rosie2m profile image
Rosie2m in reply toBatty1

Omg I hope they do that at my appt, was this a private rheumatologist or nhs? X

Batty1 profile image
Batty1 in reply toRosie2m

Yes, I pay to see a private rheumatologist (I'm in the US) it cost me $400.00 per visit unfortunately because it took 2 years to get diagnosed (no blood test) can diagnose PSA x-rays are helpful but unless you have a Rheumy that specializes in PSA most Rheumatologist miss the signs and Im still unable to move like a human Im more like a robot with a half dead battery dragging its feet (lol).

I know most doctors mine included don’t see or accept the connection between thyroid and joint pains “sigh” I wasn’t broken until they took my thyroid!

Rosie2m profile image
Rosie2m in reply toBatty1

I totally agree with you, they don’t link the pains at all yet bizarrely it’s all over the internet that it can cause it! I found out more about thyroid symptoms in 10mins on the internet than the dr was aware of and she wasn’t surprised at all... bit arsy about it tbh but i told her this is my life it’s affecting.. why wouldn’t I do my research 🧐 x

Batty1 profile image
Batty1 in reply toRosie2m

In my experience I can research and printout every medical document from highly skilled medical doctors or researchers about the connection between thyroid disease and joint issues and present it to my Endos including the one I currently pay for and they would still tell you NO thats not it.

My medical issues all have been made worse from this thyroidectomy and because all my doctors don’t talk to each other, I end up being treated with multiple drugs for multiple issues and never solving anything.

Rosie2m profile image
Rosie2m in reply toBatty1

That’s so frustrating, I get what you mean about the drs not listening. I ticked every symptom I had on the thyroid checklist, took it to my dr and she didn’t even look at it! The worst part is we are supposed to accept it and there’s not much we can do because all the drs are in cahoots with each other so asking to see someone else at the practice is pointless. X

grumpyold profile image
grumpyold

I was referred to a rheumatologist for joints in hand pain a couple of years ago. She took X rays and said she could find no reason for the pain.Then, my levo was changed from Mercury Pharma and the joint pain improved. Maybe you aren't getting along with the brand you are taking? Just a thought.

Rosie2m profile image
Rosie2m in reply togrumpyold

Thanks for replying, I have suffered with this pain for around 3/4 months before I was diagnosed hypo, the addition of levo doesn’t seem to of made any difference unfortunately, I am taking Mercury pharma but have previously been given other brands which caused extreme anxiety so now stick with the Mercury pharma. In all honesty I’d have to find a way to put up with the joint pain if it was a choice between the two.. anxiety was awful and I would never chose to live with it if I had a choice. I’m glad yours has resolved, hopefully mine is as easily remedied x

grumpyold profile image
grumpyold

It's all such a merry go round isn't it? I hope they find the cause of yours soon. x

Rosie2m profile image
Rosie2m in reply togrumpyold

It is, it’s so depressing but I just have to be grateful that I feel a lot better than I did this time last year. Thanks grumpyold xx

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