Chillax or persist in getting referred?

[Cider_Woman]

Hi there, I wonder if you can help me at all, please. I have recently been diagnosed with Hashimoto's disease and I am concerned my doctor is being unnecessarily awkward in challenging my request for a referral to a specialist. She has told me that I do not need treatment as I am euthyroid and I need to wait until my thyroid is completely destroyed and, then, take hormone substitutes. I am concerned this is an irreversible course.

I would appreciate understanding more as maybe my doctor is right and I should just chillax and let nature take its course.

She’s really tough and, although I am in British, I live in Switzerland so there is the language aspect plus the medical framework (ie no NHS) is completely different here. Finding a thyroid/Hashimoto’s specialist is proving particularly tricky.

The background is that I discovered I have alopecia back in January and about 10-15% of my hair has already gone. There has been some re-growth but it's negligible.

I have previously been to doctors complaining about hypothyroidism and each time the TSH results have come back in the normal range. I have a family history of hypothyroidism (father), auto-immune diseases (mother), I have two markers in my blood for rheumatoid factors so I was unsurprised to be told I have Hashimoto’s (kind of relieved to be honest)

I have a comprehensive list of hypothyroidic symptoms – weight gain, exhaustion, memory fog etc. There is a (sort-of) funny side as well - in the past 4 years, I have misplaced and had to replace two passports and now my Swiss work permit has gone to that dark and long-forgotten “safe place”.

My results are below for a broader background. I have had an ultrasound done and my thyroid is shrunken to about half its size and has two nodules.

Thanks very much for your consideration. As you can imagine, I am really pretty upset with these shenanigans.

Rachel

TSH

1.2 (Oct04); 2.2 (Apr05); 3.13 (Jun14); 4.33 (Dec15); 3.6 (Jun16); 3.116 (Jun18); 2.92 (Feb19); 2.63 (Mar19)

Free T4

13.4 (Jul06); 12.7 (Dec15); 14.2 (Jun16); 11.5 (Jun18); 13.2 (Mar19)

Free T3

4.4 (Jun18); 4.25 (Mar19)

Endocrinology results (all February 2019)

thyroid-stimulating immunoglobulin (TSI) – less than 0.3; Thyroid peroxidase antibodies – 42; Thyroglobulin antibodies – 220; Thyroglobulin – less than 0.1

[NWA6]

Morning Cider_Woman 👋 Can you edit your post and put your ranges with each test?

Eg. TSH (0.3-5)

Oct 04 - 1.2

Apr 05 - 2.2

FT4 (3.5 -6.5)

Jul 06 -13.4

I think the layout of posts is important going forward because it allows the members to see at a glance what’s going on and they all respond to so many posts per day. I hope I’m not being too bosy! 😬 Just trying to be helpful.

[SlowDragon Administrator]

You also need vitamin D, folate, ferritin and B12 tested

These are frequently too low as direct result of Hashimoto's. Improving vitamin levels can reduce symptoms and may help get TSH higher so that medics will start Levothyroxine

Add results and ranges if you have them or come back with new post once you get results

Don't know about Swiss medics, but NHS is reluctant to diagnose Hashimoto's only on high TG antibodies

Are TPO antibodies above range?

Scan confirms you need treatment too

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

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)

Is this how you do your tests?

When next in UK

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

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

[Cider_Woman in reply to SlowDragon]

Thank you for your replies and feedback. I am very grateful for your support.

Based on your feedback, so far, it sounds like I am right to continue to press to see an endocrinologist.

Here is a wider range of test results. I only get a limited amount done because of the sheer cost. I had 14 tests done in March, at a cost of Swiss France 550 (ca £416). My monthly medical insurance is about CHF 420 (ca £320) but, conversely, my tax rate is lower than it would be in the UK, so I shouldn't complain.

After my test results in March 2019, I was advised by the doctor to stop all taking vitamin supplements. The Vitamin D results are still low.

TSH (0.27 - 4.20)

Mar 19 - 2.63

Feb 19 - 2.92

Jun 18 - 3.116

Jun 16 - 3.6

Dec 15 - 4.33

Jun 14 - 3.13

Apr 05 - 2.2

Oct 04 - 1.2

Free T4 (12.0 - 22.0)

Mar 19 - 13.2

Jun 18 - 11.5

Jun 16 - 14.2

Dec 15 - 12.7

Jul 06 - 13.4

Free T3 (3.1 - 6.8)

Mar 19 - 4.25

Jun 18 - 4.4

Vitamin B6 (35 - 110)

Mar 19 - 131

Vitamin B12 (145 - 569)

Mar 19 - 301

Vitamin D25 (75 - 400) - done in Switzerland

Mar 19 - 63

Jun 18 - 69

Vitamin D25 total (25-120) - done in the UK

Jun 16 - 26

Dec 15- 19

Selenium (0.8 -1.8)

Mar 19 - 1.2

Ferritin (30 - 400)

Feb 19 - 90 - this result is not to be trusted as I had a one-off iron infusion in Jan 19.

Jun 18 - 40

Total cholestoral (less than 5.0)

Jun 18 - 5.95

LDL - Cholestoral (less than 2.6)

Jun 18 - 3.77

HDL - Cholestoral (greater than 1.29)

Jun 18 - 1.58

Endocrinology results (all February 2019)

Thyroid-stimulating immunoglobulin (TSI) (range: less than 1.8) – less than 0.3; Thyroid Peroxidase Antibodies (range: less than 34) – 42; Thyroglobulin antibodies (range: less than 115) – 220; Thyroglobulin (range: 3.5 - 77.0) – less than 0.1

[SlowDragon Administrator in reply to Cider_Woman]

So starting with the last first

Your just over range TPO and very much above range TG antibodies confirm you have Hashimoto's

High cholesterol is linked to being hypothyroid.

nhs.uk/conditions/statins/c... If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Vitamin D is very deficient

Are you supplementing at all?

Presumably ferritin was very low before infusion?

How are you keeping ferritin levels up ?

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

FERRITIN and being hypothyroid

healthunlocked.com/thyroidu...

Post about iron supplements

healthunlocked.com/thyroidu...

B12 and on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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

Low vitamin levels affect Thyroid hormone working

Getting all four vitamins optimal can help raise TSH so you can get treated with Levothyroxine

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...

Other gut issues due to being hypothyroid

healthunlocked.com/thyroidu...

Do you come back to UK ?

Could you see a recommended thyroid specialist when next visiting

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

[e-mail]

[Cider_Woman in reply to SlowDragon]

SlowDragon, thank you for taking the time to look at my numbers. Much to think about and pursue.

I have been reluctant to reduce gluten because I absolutely love bread so much.... but it's definitely worth a try, especially for such a relatively short period of time.

Thanks again,

Rachel

[SlowDragon Administrator in reply to Cider_Woman]

Essential to work in improving vitamin levels

[NWA6 in reply to Cider_Woman]

Fantastic layout and response Cider_Woman! High 5!

So your TSH is spluttering, up and down trying to compensate, trying hard and dependant on what time of day and fasting you had on day of testing. But ignore it. You can see that T4 is only just in range and last year not in range. T3 testing also shows that it’s low in range.

Conclusion - T4, Levothyroxine will probably help you enormously, you need to pursue this now. Once you start T4 wait and see how you respond. You may initially feel great but your T4 has been so low for so long you may need to increase from low dose (50mcg) and then you can decide if you need to add T3 but from now on always get full thyroid picture and don’t rely on TSH numbers.

[Cider_Woman in reply to NWA6]

Paula6, a big thank you to you too, for the feedback and conclusion. I really appreciate your time and support.