Has anybody been diagnosed with a multisystem polyendocrine syndrome?

[Scothyroidy]

I have positive intrinsic factor antibodies, very high tpoab and tgab.

[SlowDragon Administrator]

Your antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

You already know you have low B12 and folate - extremely common with Hashimoto's

Essential to also test vitamin D and ferritin

Have you had TSH, FT4 and FT3 tested? Can you add your most recent blood test results and ranges?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Hashimoto's frequently leads to Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[SlowDragon Administrator]

Intrinsic factor antibodies confirm Pernicious Anaemia too

So you will need B12 levels tested. Most likely B12 injections

Post B12 and folate results on pas healthunlocked

healthunlocked.com/pasoc

They are B12 and folate experts

[Scothyroidy in reply to SlowDragon]

Hi my own gp diagnosed autoimmune pernicious anaemia, then a senior gp over ruled her now I have to wait a D see an endocrinologist. I'm in range for vit D, ferritin, folate. Tsh 5.85,tpo 1000,tg 300, ft4 in range. Had six loading doses of hydroxocobalamin with gp and a two more but decided to sekf inject so no point in b12 testing any more. The thing was Dr Chandy telling me I had a multisystem polyendocrine syndrome, obviously because multiple autoimmune situations happening similutaneously, and I can't find any info on it and nobody else I ask on forums has any info on it. Ps sorry for late reply things have been hectic of late.

[Scothyroidy in reply to SlowDragon]

Oh I never did coeliac test as at that point I had been low carb for over a year so no gluten consumed.

[SlowDragon Administrator in reply to Scothyroidy]

So are you on strictly gluten free diet, avoiding all gluten

Often helps many on here

What are the actual results and ranges on vitamin D, folate and ferritin

Clearly your TSH is too high, and very high TPO antibodies confirms you have Hashimoto's and should be on Levothyroxine

Frequently improving low vitamin levels can help raise TSH further so that it's easier to get medics to prescribe Levothyroxine

Standard starter dose is 50mcg Levothyroxine and bloods should be retested 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Median TSH graph

healthunlocked.com/thyroidu...

TSH daily variation

healthunlocked.com/thyroidu...

[Scothyroidy in reply to SlowDragon]

I had my tests via thriva. My thriva test tsh was 10.1 but my gp retested a D it was 5.85.thriva tpo was 600 then gp retest 1000. All vitamins abd ferretin in range. Ft4 very low but in range. Ft3 mid range. Tgab 300 with thriva. And I suggested I should be trialled on levo to my gp, she looked at me like I was an alien 😂

I have ma aged to procure an appointment with an endocrinologist which should be in a few weeks.

I also took vit d3+k2 in high doses abd folic acid (5mg per day) and mag glycinate (500mg per night) a B complex, thiamine, senium all with alternate day hydrocobalamin injections.... I became very ill and stopped all cofactors after a few weeks and retested vit D, folate avd ferritin after two weeks... All had risen significantly so I assume I need no cofactors, which Dr Chandy (whom I contacted later) agreed with. He it was who said I have multisystem polyendocrine syndrome and advised I take two hydrocobalamin injections per week for life.. And thus far two a week seems to suit me.

[SlowDragon Administrator in reply to Scothyroidy]

Hopefully you will make more progress with the endocrinologist

You clearly need to be started on Levothyroxine

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

TSH is high, FT4 low and antibodies very high

Best to start vitamins one at a time. Too much too soon can be overwhelming

Improving vitamins also helps Thyroid hormones work better and can raise TSH higher

If endocrinologist appointment doesn't go well, or you want to see if your choice of endocrinologist is on the list .......Email Dionne at Thyroid UK for list of recommended thyroid specialists

[Scothyroidy in reply to SlowDragon]

I have already emailed her for that list. Sadly Scotland does not represent well on it. And I am not hopeful about the endocrinologist appointment due to mekrevious experiences but if it doesn't go well I will seek one in the private sector even if I have to go to England. I will add I now know a lot of people with hypothyroidism (none were even aware of it was due to an autoimmune situation nor had even heard it could be, which is very sad) and all of them are on levo, some on the maximum dose for years and every single one of them is still symptomatic. This fills me with dismay if I'm honest and as a mh nursing student I am a bit disillusioned with the NHS on issues relating to thyroid, pernicious anaemia, type two diabetes, antidepressants and ibs.... As I'm sure you know I feel a huge mass of people are being bay let down by a one size fits all mentality constrained by finances, corporate influence and human factors.

[SlowDragon Administrator in reply to Scothyroidy]

There's at least one endo in Edinburgh who will prescribe T3 if needed

Yes I would agree far to many patients are left significantly under treated on too small a dose of Levothyroxine

Autoimmune disease is complex. Looking for root cause is often key

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

[radd]

Scothyroidy,

Ask your doctor why "multisystem polyendocrine syndrome" as been diagnosed when you are only aware of thyroid and intrinsic factor antibodies.

Sadly both of these conditions are common. If you are a medical student you will see time & again how the standard is to allow a Hashimoto patients to wait until the immune system has destroyed enough thyroid tissue to classify them as hypothyroid & then prescribe levothyroxine. As all the other conditions that Hashi has caused are not addressed, the body becomes stuck in a chronic state of immune system overload, adrenal insufficiency, impaired digestion and inflammation.

When other symptoms commonly associated with Hashi are exhibited, they’ll get additional drugs for those as well. And the cycle reinforces itself, becoming self sustaining and continuing to causing more & more symptoms, until an external factor intervenes and breaks the cycle apart. This may necessitate the unravelling of complicated inflammation cycles and restoring immune balance. Hashi has a trigger that needs removing, whether a bacterial or viral infection, an environmental toxin, or something else that is provoking the autoimmune attacks.

Because the immune system is in such a heightened state, many experience an over reaction to gluten ( and dairy) which can cause autoimmune damage to the intestines resulting in pain & poor absorption of nutrients. Adrenal fatigue and gut problems are common in thyroid disorders as the insidious nature means a late diagnosis when the patient feels quite unwell.

With thyroid antibodies that high, Levothyroxine looks on the cards and medicating it sooner will lessen the risk of all the other complications that can occur with deficient levels of thyroid hormone.

Is it good you are managing your VitB12 deficiency. You may benefit from looking to support adrenal health as those hormones may be compromised having supported your thyroid gland and gut. Also reducing thyroid antibodies and looking at gut supports.

Post ferritin, Vit D and folate test results complete with ranges (numbers in brackets) for members to comment. Many doctors "normal" isn't optimal for a Hashi patient.

[Scothyroidy]

My gp didn't diagnose the multisystem polyendocrine syndrome, that was Dr Chandy. My gp initially diagnosed me with Autoimmune pernicious anaemia (later seemingly over ruled by a senior partner at the practice) and decided on a wait and see policy re the high thyroid antibodies (so standard nhs Scotland). I had an appointment with neurologist today abd she ordered a whole raft f blood tests for thyroid, autoimmune markers of various kinds, proteins etc. I also have an appointment pending with an endocrinologist. I wil produce all my vit readings abd ranges when I get home later ( can I post screen grabs here? Tried but can't work it out... Not a techie lol). I did take cofactors for b12 deficiency recommended else where, and akso added thiamine and selenium re hashi protocol by isabella wentz but I became extremely unwell over a few weeks to the point I was close to going to the hospital. I started feeling better with in a day of stopping all supplements other than my hydrocobalamin.

[Scothyroidy]

Vit D = 87.4nmol/L (50-100)

Folate = 39.7nmol/L (8.83-60.8)

Ferritin = 139ug/L (30-400)