Levothyroxine and Rheumatoid arthritis - Thyroid UK

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Levothyroxine and Rheumatoid arthritis

Rockky profile image
16 Replies

Hi I am new here and trying to find info out for my husband. He is currently on levo 175mg one day and 200mg the next.(has been on levo for 7 years altogether) He had shoulder aches/Pains in December, and then was getting worse, after about 6 weeks then had ultrasound scan and didnt come up with anything conclusive, possible torn tendons.(has slight swelling by shoulder)Then had aching legs, couldn't walk up stairs, couldn't close fist properly, restless legs, couldn't sleep properly, bottom of feet hurt. Swollen finger.Then after going to docs in March 19 sent to Muskoskeletal who said thought was Rheumatoid Arthritis. Sent to Rheumotology dept of hospital who said it was. I just want to know has anyone else experienced this, or could it be his Thyroid meds not right as I have read several posts about this. I don't want him diagnosed with RA if it is his Thyroid problem or maybe I'm just to scared to accept it. Please help. Thank you.

last 4 thyroids feb 19, serumfree t4 13.9,(range 9.00 - 22.70pmol/L) tsh 7.57.(range 0.35 - 5.5um/L)

(they increased dosage to 175one day 200next).

june 18 serum free t4 16.3 , tsh 1.55

sep17 serumfree t4 15.7 tsh 1.41

July 17serumfree t4 13, ash 7.27

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Rockky
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16 Replies
NWA6 profile image
NWA6

Yes I’ve had all those symptoms. I find that I can be ‘prone’ to injury but usually not to the extent that it impacts my life, although in 2017 I did damage my rotary cuff and it took a year to heal. I’ve had the Blood tests for RA but my Dr said they were negative. The blood tests for RA are not 100% and do even though your husband has been given a positive result it may or may not be true. Irregardless of those blood tests your husbands under medication is almost certainly a huge factor. If he wants to keep his symptoms under control (caused by RA which is autoimmune or Hashi’s) he has to sort out his Levo treatment. But also look into Diet and supplements which others on this forum way more educated than I can help you with.

Just wanted to say a big fat YES to all those ailments being because of Hashi’s for me 😀

Rockky profile image
Rockky in reply to NWA6

So you have had the same symptoms but don't have RA? He is also quite cold, too. I don't know what to do next, whether to ask for referral to someone for his Thyroid (other than our normal GP). Thanks for your reply.

NWA6 profile image
NWA6 in reply to Rockky

Yes those symptoms come and go for me depending on how under medicated I am. It was and is still one of my red flags for becoming hypothyroid and prompts me to visit the DR to get bloods done and more medication. I have always needed high doses of T4 to alleviate symptoms which don’t disappear completely but do at least aow me to sleep. There have been times over the last 10yrs where my whole body goes numb in the side that I’m trying to sleep on, so I constantly have to turn over. Or I don’t feel safe walking down the stairs because I think my ankles will give way. Unable to hold a cup of tea on waking because my fingers feel swollen and I can’t grip or make a fist. Having SPD in pregnancies and the pelvic and symphysis pain is excruciating when I sit on a hard chair or floor.

I’m always prestering my GP to do blood tests and I asked for an RA test, she was not happy but she did it and it was negative but it was just more ammunition for me to say ‘well then it’s my thyroid’

Finalllt I’ve got some answers. I don’t convert well.

Your husbands FT4 is not very high for someone on so much Levo and his TSH is too high, I’d be on my knee if mine were that high 😬 Maybe you should get private blood tests so you get get a full thyroid result that includes FT3?

Rockky profile image
Rockky in reply to NWA6

how do I do that, and would I then take it to our gp or see a specialist? I don't know whether to go private and make sure its not his thyroid as I'm scared because he is going back to Rheumatology dept for some low dose Chemo drug they are going to put him on (Methotrexate) for RA in the next 2 weeks, and if its not that and its his thyroid then that is a wrong diagnosis? I don't even know how I would go private but I want to know its not this definitely not his thyroid. Thanks a lot

NWA6 profile image
NWA6 in reply to Rockky

Don’t worry hun!! Don’t be scared of a diagnosis. It’s entirely possible that he has both conditions. Remember that I’m not medical trained all of this is my own personal experiences and the little bit of knowledge I’ve learnt.

Go to Thyriod UK website. They have a list of online places to do a home blood test to send of. I’ve used Thriva others have mentioned Medichecks but there is a choice. There is also a list of private Endocrinologist so that you can go private because your Dr is not really treating the symptoms.

I don’t know much about RA treatment but I AM sure that if thyroid isn’t treated properly all symptoms can mimic other things. Someone more educated than I will pick up on this post and help you out with the where’s and how’s and what you should be thinking about.

Big hugs 🤗 stay calm, be patient and start googling and arming yourself with knowledge 😀

Rockky profile image
Rockky in reply to NWA6

Paula, thanks for your help, what is the difference between underactive thyroid and Hashimoto's? He has only ever seen his gp so may try and get a private appointment before starting treatment. Im so scared.

NWA6 profile image
NWA6 in reply to Rockky

Many people can have an under active thyroid for many different reasons. Hashimotos is named after the Japanese dr who first ‘found’ it.

Most people with an underactive thyroid have a thyroid that doesn’t work properly because they have Hashimotos - auto immune - the body is attacking its own thyroid.

Your husband can find out if his under active thyroid is due to Hashimotos through a blood test.

Here’s a link to Thyroid UK for more thorough reading.

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

shaws profile image
shawsAdministrator in reply to Rockky

Rheumatoid arthritis is within my family and if the Specialist is good he will give proper medication to keep pain/stiffness at bay and you can carry on with your normal lifestyle. Occasionally you could have a flare-up but it can be controlled if doctor/specialist is knowledgeable.

shaws profile image
shawsAdministrator

Rockky due to the labs having different machines, so different ranges, it is helpful if you put the ranges after any results you post. This enables members to comment better.

Your husband would need a blood test to confirm rheumatoid but it could be that it is hypo which is causing pains in legs etc. Too little T3 in our body can affect us quite badly. They rarely test Free T4 and Free T3 which are important.

thyroiduk.org.uk/tuk/testin...

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

If we develop one autoimmune condition we're apt to get more.

I have three.

Rockky profile image
Rockky in reply to shaws

Thank you, have just put the range on.Can I ask do you have RA?

shaws profile image
shawsAdministrator in reply to Rockky

I have a daughter who has R.A. Due to the doctor we saw when about she was about 10, who was extremely angry with me for mentioning that my sister also had R.A. and he never tested her blood. He said I 'put ideas into her head'. Some get minor R.A.and some more serious.

NWA6 profile image
NWA6 in reply to shaws

Rockky already said in her post that rheumatology said he does Have RA - although my understanding is that there’s is not one blood test to confirm this rather there are a number of blood tests and symptoms combined which make a confirmation.

My own personal opinion would be that your husband is under medicated which exacerbate Hypo symptoms which mimic RA symptoms. I would never rule out RA given that Rheumatology have said his blood tests are positive but I would tackle his thyroid and look at supplements before I started treatment for RA. When they are sorted then I’d evaluate if his symptoms have been relieved and to what extent. Then if needed I’d look at RA treatments.

This must be all very unsettling. Trying to help your husband will seem daunting. We are raised to believe that ‘Dr knows best’ and in many many situations they do, you HAVE to start googling, start reading. If you see a word of symptom you don’t understand, google it. I learnt from my children, they do mind maps in order to study, mind maps are a brilliant way to focus our learning.

It’s very nerve wracking for me to offer ‘advice’ I am not medically trained, I am just learning and everything I at is from a personal experience. Your next steps to health have to be because you make your own choices 🤗

Rockky profile image
Rockky

hi, he is on Levothyroxine.

llawleht profile image
llawleht

Hi Rockky

Has your husband been given a different brand of Levothyroxine?

I had a very similar experience in 2017 after being given Teva (New Formula) brand.

I have been on Levothyroxine for 10 years with a few ups and downs.

With the excellent information on this forum i now think this was probably due to brand swapping on a regular basis.

I now stick to one brand and GP did not disagree and now states brand on prescription.

Hope your husband gets sorted.

Rockky profile image
Rockky in reply to llawleht

I will check, thanks a lot.

SlowDragon profile image
SlowDragonAdministrator

aching legs, couldn't walk up stairs, couldn't close fist properly, restless legs, couldn't sleep properly, bottom of feet hurt.

These symptoms suggest low vitamin D and restless legs often low magnesium

Obviously he was very under medicated feb 19 and therefore vitamins likely very low

tsh 7.57.(range 0.35 - 5.5um/L)

t4 13.9,(range 9.00 - 22.70pmol/L)

Sore feet often low vitamin D and low Ft3

Vitamin D, folate, ferritin and B12 need testing annually as absolute minimum

Just testing TSH and Ft4 completely inadequate

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