Autoimmune condition

[MauveMouse]

Hi everyone. The results from my ANA and ENA came back with a broad diagnosis of connective tissue disease. They've ruled out lupus. This plus the thyroid stuff is going to be fun to deal with 😅. The Coeliac disease test was inconclusive because my GP forgot to advise me to have bread for at least 4-6 weeks. I'm pretty sure I've some food intolerances. I'm going to India next month to have a complete thyroid panel and test for antibodies against the thyroid. Will be seeing a doctor there too. Does anyone here experience breathlessness with tightness in the chest, especially while walking uphill for a time?

[Buddy195 Administrator]

Most GPS and even some endocrinologists don’t routinely test FT3 and some only test FT4 if TSH is not in range. That’s why so many forum members test privately for TSH, FT3, FT4, thyroid antibodies and key vitamins (ferritin, folate, vitamins D and B12).

You could get these checked whilst in the UK. Many members use Medichecks or Blue Horizon.

thyroiduk.org/help-and-supp...

Many members, myself included are not coeliac but certainly gluten intolerant. It’s definitely worth trialling for 2-3 months to see if it benefits you.

Re the breathlessness when walking; have you been tested for asthma?

[MauveMouse in reply to Buddy195]

I haven't been tested for asthma. The GP said my lungs are fine 🤷‍♀️ .

[SlowDragon Administrator]

Breathlessness often low thyroid

But also low iron or ferritin

[MauveMouse in reply to SlowDragon]

My iron is just within range, if I remember correctly. I've never been able to run much or do anything strenuous, but it's become really bad now.

[SlowDragon Administrator in reply to MauveMouse]

Please add actual results

Low iron and/or low ferritin frequently linked to hair loss

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

[MauveMouse in reply to SlowDragon]

Ferritin 28.0 ug/L [10.0 - 291.0]; A normal ferritin may not exclude

iron deficiency if levels are at the

lower end of the normal range or in the presence of

inflammation.

Total white blood count (XaIdY) 9.7 10*9/L [3.9 - 10.2]

Red blood cell count (426..) 4.77 10*12/L [3.9 - 5.2]

Haemoglobin concentration (Xa96v) 133 g/L [120.0 - 156.0]

Haematocrit (X76tb) 0.419 L/L [0.355 - 0.455]

Mean cell volume (42A..) 87.9 fL [80.0 - 99.0]

Mean cell haemoglobin level (XE2pb) 27.9 pg [27.0 - 33.5]

Red blood cell distribution width (XE2mO) 13.3 % [11.0 - 16.0]

[MauveMouse in reply to SlowDragon]

I do have liver and other iron rich foods 😭

[SlowDragon Administrator in reply to MauveMouse]

So ferritin is deficient

You need FULL iron panel test for anaemia

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great reply by @fallinginreverse

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[MauveMouse in reply to SlowDragon]

Thank you 💐

[Lulu2607]

Yes MauveMouse , I have been struggling with iron just in range although haemoglobin is fine, but I have felt some discomfort when walking at speed or uphill . I started to worry about my heart as I was getting a lot of palpitations too but you've reminded me it could be due to low iron or B12 which in my case is normal but not optimal.

[grumpyold]

I get breathlessness but I think mine could be due to low B12.

[arTistapple]

Had the tightness in chest forever it seems. Breathless is a difficult one. Knowing I am not breathless but at the same time not breathing with ‘ease’. My daughter always pulls me up on it, saying I sound like I am hyperventilating, which I never feel is that either. Check out SlowDragon advice but I (so far) have had no problem with iron, ferritin (in fact mine too high and another issue) or B12. For me it’s definitely directly hypothyroidism.

[Starseed56]

hello MauveMouse I have this. Now that my thyroid levels are good, I have to assume it’s iron deficiency which am working on. I’m not sure if I can suggest things here so admins please remove if not, I have used a product called Oxylift from the Finchley Clinic and this helps get oxygen into the cells which is a problem if you have iron deficiency. When I used regularly last year it did help me a bit. I’ve just bought some more to take but there are so many things to take in addition to the thyroid meds it’s hard to put something else easily into the routine. Think I’ll write a schedule down! Good luck it’s horrid you have my sympathy 💜

[Pugalier]

Hi, yes - it was one of the main symptoms I had when I first started getting tested. I had the full autoimmune profile done and a skin biopsy - they indicated Dermatomyositis & Mixed Connective Tissue Disease. I was put on Plaquenil (Hydroxychloroquin) which definitely eased some of the symptoms including fatigue & pain (still have flare-ups & can’t find the triggers yet.) I’ve had numerous Rheumatology Physio appointments to try & strengthen my muscles to ease the pains.

They also sent me for a load of Respiratory Function Tests which highlighted an issue with converting oxygen (?)! I was put on a combo-inhaler but stopped it because it doesn’t seem to agree with me 🥴 I’m waiting on my review appointment with the Rheumatologist to see what’s next.

I have had Hashimotos for years & have been on Levothyroxine for that. I also have High Blood Pressure & High Cholesterol. I’m on Ramapril, Atorvastatin & Bendroflumathiazide.

[MauveMouse in reply to Pugalier]

Hi Pugalier . Did your blood tests show U1 RNP ANTIBODY above range?Mine is 12 u/ml [0.0 - 5.0]. This is the only one that is high. I've read that this is distinctive in people suffering from mixed Connective tissue disease. I've high blood pressure and high cholesterol too.