New Diagnosis Hypothyroidism

[LSurtees]

Hi all

Firstly, hope you are all doing well?

I have once again bring really ill since Nov, had tonsillitis twice and a chest infection that just would not go.

I had my third set of Rituximab back In Jan but not been able to recover. Numerous blood tests and appointments later my TSH for thyroid is high so now being tested for hypothyroidism.

Does anyone else have this with SLE?

I also wondered how ppl are managing to balance work and this awful condition? I am off again and each time I have a flare and off work I get more depressed and find it harder to go back.

Any help or advice greatly appreciated.

Thanks all

Linds xx

[vaderviper]

It is not uncommon to develop hypothyroidism due to lupus. If it attacks the thyroid, we call it 'Hashimoto's Thyroiditis'. It is easy to bring your numbers back into "normal" range. Your doctor will put you on Synthroid or Tyrosint, another NAME BRAND hormone same as Synthroid. NEVER TAKE A GENERIC HORMONE DRUG! I am a retired doctor in the USA and also have lupus. Unfortunately lupus can attack any organ system in the body. Most patients (besides other meds) are put on Plaquenil......an absolute for people with lupus. It has beeb shown to reduce the incidence of a 'vasculitis' as well as incresing one's lifespan. If I can be of any help to you, in any way, please do not hesitate to contact me. ALWAYS FOLLOW YOUR OWN DR'S RECCOMMEDATIONS..........NO ONE KNOWS YOU BETTER!

Best of luck,

Dr. S. (retired, in the USA)

[vaderviper in reply to vaderviper]

sorry for the misspellings ...........'beeb', should be been and 'incresing' should be increasing.

[vaderviper]

I want to let you know very often under the right combination of meds you can enjoy a 'somewhat normal' life. Not everyone suffers from the various problems lupus can cause. Hopefully only 1 or 2 meds are usually enough to keep you where you can function the vast majority of the time (some all the time).

Never worry about what could happen, deal with what does happen. Life is easier and far more enjoyable!

Dr. S. (in the USA)

[LSurtees in reply to vaderviper]

Thank you for your advice and knowledge very helpful.

I had a breakdown today and tried to ask for help but don't seem to have got anywhere. Yesterday I was told my thyroid TSH was high ( the test was done prior to my prednisolone being increased dramatically) they did further test yesterday (after a week being in high prednisolone) and now shows normal but I have all the symptoms of hypothyroidism. I know something is not right with me but feel very alone and my consultants don't seem to listen or care.

Sorry it's been a really hard 24hrs xx

[vaderviper in reply to LSurtees]

First, prednisilone can lower your TSH levels (does that mean anything....not usually). Besides being tested for TSH, your free T4 and free T3 levels should also be checked. Your body produces T4, however that is converted to T3 as the body can not utilize T4.

While TSH has gotten plenty of press over the years, free T4 and T3 are actually more accurate indications of thyroid function. Knowing their roles in the body, and in particular why free T3 is so important, makes it easier to make a diagnosis. Most Endocrinologist will also check for REVERSE T3. The Reverse T3 test measures the inactive form of the hormone T3 or Triiodothyronine. Certain conditions may cause the body to convert T4 into Reverse T3 instead of active T3 as it normally does. Elevated levels of Reverse T3 are common in people with hypothyroidism. Is it possible for you to see an Endocrinologist?

Please let me know if I can help.

Dr. S.

P.S. It is possible your symptoms may not be caused by hypothyroidism. ALL your symptoms should be conveyed to your Dr.

[Krazykat26]

Hi LSurtees

Sorry to hear you've been so poorly 💐 n still are by the sounds of it. I haven't got any experience of thyroid probs at the moment but u have had advice already on that issue.

U also asked about working etc..lupus UK have info on lupus in the workplace..i don't know what u do but it could be that it's too stressful..even lighting can be an issue.

I don't know about the rituximab either but it sounds pretty heavy.

However I will say that because of what's happening with u right now u need support..what networks have u got ...family? Have u got support at work from manager etc? That's enough questions from me n I absolutely totally understand that 💩is happening but please DO NOT think that u are alone xx

[AimeeA]

First of all, don't panic over the hypothyroidism. It is very common in lupus patients (I have it), and very easy to treat with just one pill a day. Doctors will test your blood levels periodically to make sure your dosage is right, but other than that, it can be very successfully managed with that one pill a day.

Regarding managing work, many patients with severe lupus do end up on disability eventually, but many don't if you make lifestyle changes.

I realized my job was too stressful and the commute was too long and the stress was causing flares, so I started making changes to allow me to have less stress and more rest. I moved into a smaller house that was less expensive so that I could afford to change jobs that might pay a bit less, and found jobs that were more flexible, less stressful and accommodated my need for more rest due to lupus. I was able to work until I retired by making those changes.