Rhumotolgy no more

[Awwy]

Hi

History

I was diagnosed with MCTD. Was told it is a mild form. Lupus markers and inflammation is slightly elevated so was given hydroxychloroquine to take. Fast forward 6 months and had a bad reaction to hydroxychloroquine....extreme itching of skin. So was told to drop to 200mg.

Spoke to Rhumotolgist today. She told me to stop taking hydroxychloroquine straight away. As my inflammation isn't very high she said dont take any medication for MCTD.

Also been diagnosed with open angle glaucoma in mean time.

Had ultra sound scan on hands and feet no sign for arthritis.

Have symptoms of extreme fatigue, brain fog, my whole body aches. Weight gain, high cholesterol. She is referring me back to endrocologist.

I have posted about my underactive thyroid before. Im in range so not sure I will be seen as GP won't refer me and Rhumotolgist wasnt sure if her referral will be accepted.

What shall I do? I have no idea who to speak to. What to ask?

Any advice much appreciated.

Thank you

[Krock1]

I was on hydroxychloroquine for six years. I varied between 200 and 400 mg over the six years. During 2021-22 I experienced lots of tendinitis issues and developed sun sensitivity skin rashes. My rheumatologist recommended that I stop hydroxychloroquine in November, because she thought that may be the cause. So far so good. Rashes have disappeared and no more flares in the tendons. I did get the flu a week after stopping and have had a persistent cough since.

[Star13]

your symptoms sound very thyroid related. Although you say thyroid is in range is that just TSH or have they done a full Thyroid profile? It’s very important to get FT3 as well as FT4. I’d advise popping over to the Thyroid UK forum on here and post your symptoms and results. They are best advised to help you. Also you will need B12, Folate, ferritin and Vit D too. These Vits are often deficient and can compound symptoms.

[Awwy in reply to Star13]

Hi yes both T3 andT4. I have posted on the thyroid forum and currently on Vit D, K and B complex. Going yo recheck thyroid in 6 weeks after this combination. Thank you. 😊

[Awwy]

Hi

Yes I persuaded my GP to check both.

Let's see if they will see me with results in range. Thank you.

[Awwy]

Thank you. X

[OldTed60]

hi I posted about my thyroid on the RA community although a bit different as I’m diagnosed with hypothyroid and have been on Levothyroxine for decades now. However I’m getting very stiff, swollen hands during the night (diagnosed as RA many years ago) and now recognise this as being related to my thyroid hormones being a bit off.

I was put up to 150mcg Levothyroxine before pandemic but then a gp phoned and lowered it to 125mcg half way through due to FT4 being too high. They only tested my TSH this time but fortunately I know my own ranges pretty well now and if my TSH is in range then things are wrong for me and it shows in joint swelling and Lymphodema. It needs to be very suppressed.

The endocrinologist discharged me again once a year was up but luckily I have a good GP who seems more on the ball so he agreed to raise my dose back up to 150mcg and I will get TSH and FT4 tested in February.

I have Sjogrens and Scleroderma so quite like MCTD as also some pointers to mild SLE and Vasculitis. I too got awful itchy hives after a year and half on Hydroxichloraquine and finally had to stop. Now on maximum dosage of Mycophenolate and infusions for Raynaud’s. I certainly find the medications I’m on have kept my disease in check but managing my hypothyroidism properly has also been key.

I do hope you can get to see a good endocrinologist. The one I saw was quite sympathetic but I think this might be quite unusual. He helped by writing to my GPs to say my TSH should be kept under range.

[Awwy in reply to OldTed60]

Hi OldTed60

Everything is pointing towards my thyroid so for now thats where I am pushing. Thank you so much for your response.

💜

[OldTed60 in reply to Awwy]

could you possibly go to a private endo recommended by folk on the Thyroid U.K? I did this some years ago and saw a chap who has long retired now. But he was sufficiently top notch for Gp to do as he suggested and trial me on T3. Was fine until he also lowered my dose of T4 and then once again I was crawling round like a slug so Gp refereed me to local endo - who agreed to massively hike my dose of Levothyroxine/ T4 if I stopped T3. I saw the private chap twice and it seemed to work out well for me although he thought most of my stuff was CTD not thyroid - same as local nhs one.

I saw my neurologist 2 weeks ago and she examined hands for carpal tunnel so I explained my theory. Not sure if she thought I was whacko but she seemed intrigued and kept saying “your autoimmune overlap is very complex isn’t it?”. She dug up letter from endo though and then blamed lots on my long term hypothyroid 😂

[Awwy in reply to OldTed60]

Yes possibly. I have appointments this week with surgeons. Just seen my urologist who wants to scan my left kidney suspects my endometriosis may be causing me pain down my left leg and back. Im priority 2 on surgery list which should be in next 2-3 months. Im like an old bashed up car... that is peddling along and occasionally needs a jump start. 🤣😂

[OldTed60 in reply to Awwy]

oh okay - in that case, if thyroid bloods all in range without treatment - I’d be hesitant to look further than your existing endometriosis for now. I don’t know much about it having fortunately not suffered from this myself. But I think it’s now thought to be autoimmune isn’t it and it’s a systemic condition of itself? Perhaps best to wait until after your scan and surgery before getting your full thyroid panel rechecked. You can always get one done yourself from a company such as monitor my health or blue horizon if your GP is unwilling to run these again? Yes battered old motor needing a jump start is me too most days now!

[Awwy in reply to OldTed60]

Thanks OldTed60

You always give me great advice. The consultants I have seen this week, rhumotolgist, endometriosis specialist and urologist. All are going to write to my GP and endocrinologist. I will do my own blood tests as suggested before too. Thanks.

💜

[AgedCrone]

Why don’t you speak to NRAS..,they will probably know somebody who can advise you.

[Awwy in reply to AgedCrone]

Hi

Sorry don't know all the acronyms yet please advise- NRAS? Thank you 💜

[AgedCrone in reply to Awwy]

NRAS is this site…..tel no of advice line is

0800 298 7650

They will have somebody to help you.

[Awwy in reply to AgedCrone]

Oh ... thanks 🙈