MCTD diagnosis, finally!

[MauveMouse]

Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing cholesterol and TSH, as my doctor here, in India, has confirmed, is related to my autoimmune condition. The NHS endocrinologist had dismissed this idea, saying that there was no connection between my autoimmunity and my cholesterol. He wanted to treat me with statins, which I have not bought or taken. I'm well aware of what will ensue, especially since my body is going mental dealing with the inflammation. My Indian doctor has already started me on medication to treat my gut health because, as he sees it, that is where we need to begin with the healing. I'm on a grain-free, sugar-free diet. I can't have food that has been preserved, has other additives such as food dyes. I'll be having monthly online consults with him.

[Buddy195 Administrator]

Mixed Connective Tissue Disorder appears to have symptoms that overlap with many other autoimmune conditions, so it’s a good idea to keep a symptom’s log/ journal to share with your practitioner.

Can you share your thyroid results with us?

(TSH, FT3, FT4)

[MauveMouse in reply to Buddy195]

Here you go.

Thyroid report

[SlowDragon Administrator in reply to MauveMouse]

Do you Always test thyroid levels early morning and last dose Levo 24 hours before test

[MauveMouse in reply to SlowDragon]

I'm not on levothyroxine. Tests are all early morning.

[MauveMouse in reply to Buddy195]

Only U1 RNP ANTIBODY was high

12 u/ml [0.0 - 5.0].

High results

[Wired123]

curious why you chose a doctor in India? Does the doctor have some unique qualifications or experience?

[MauveMouse in reply to Wired123]

I am Indian, and I knew things would go a lot faster if I went to a doctor back home. It was a long initial consult. About two hours. He went through everything, trauma, emotional health, diet, etc.

[Wired123 in reply to MauveMouse]

It’s interesting how medical training and experiences are different in each country. I had physio for over 10 years with multiple different private physios (all British) who had the same ineffective approach.

Then I found a new physio when I moved house and he happened to be from Greece. His approach and methods were totally different, and he actually got rid of my pain very quickly that none of the others managed and no exercise sheet with a bunch of boring useless exercises in sight!

I think this NHS approach that our physios and other medical professionals train with is often more about cost management and less about effective treatment.

[Regenallotment]

how fascinating and good for you, I love that this GP went for the root cause approach with gut health, interesting about preserved, does that include tinned? . My favourite GP here is a locum from Poland. All power to the wider pool of knowledge and experiences. 🌱

[MauveMouse in reply to Regenallotment]

Yes, it includes tinned foods. Most prepackaged foods with multiple ingredients as well.

[Regenallotment in reply to MauveMouse]

Ah interesting, I know there could be many factors contributing as my body likes to give me symptoms from a cluster of causes but I ate sardines and mackerel this week and my joints hurt 😞 it’s probably something I should consider. 🌱

[Agitator23]

I was diagnosed with MCTD some years back. At the time thyroid issues were ruled out as my TSH was always within range and my thyroid antibodies were (still are) always negative - BUT I am, and was, hypothyroid. My latest blood test FT4 is 8.8% with TSH low/normal. At this level of FT4 I'm just about functioning with all the familiar hypothyroid symptoms... Central hypothyroidism they say is rare, but only because it's rarely diagnosed by doctors!