Continued... 20 years and getting worse. How do I get my dr to take me seriously?

[Tiredofthis77]

Hello again,

Thanks again for all your help regarding a previous post (below).

I've progressed ever so slightly in that my doc upped my meds to 75mcg of thyroxine. However, I can't seem to tolerate it. My stomach is massive, I can't control my weight and I have no appetite. If I take 75mcg for any more than a week I get an upset stomach and the weight piles on. I've recently had more tests, on which I demanded a FT3 test. I'd appreciate any advice on the following results. I've got another appointment with doc and need all the help I can get before I see her.

Thanks for listening everyone!

TSH 2.34 (0.55-4,78)

FT4 18 (10-25)

FT3 4.7 (4.0-7.0)

Tired x

previous post for reference

Hi all,

I've been struggling with thyroxine for the past 20 years. I used to be able to tolerate 150mcg, then I started piling on weight, getting bloated tummy, lost my appetite and a whole heap of other symptoms. I felt like I regularly needed to have a break from meds and after coming off them, I felt better after a few days until I began to get hypo again.

For a sweet spell I had the pleasure of taking liquid thyroxine - Evotrox - until it was discontinued. I had a great year on it and things have gone downhill ever since. The year before last I was told I didn't have a thyroid problem (just a poor metabolism) and they took me off meds for a year and a half. It was an awful year.

I went back to the doc in February and have been on medication (25mcg thyroxine in tablet form since then). I'm not good again. In fact, it seems to be making me gain weight - especially in my stomach area. I feel toxic, bloated, tired etc and I don't know what to do. My brain is becoming very sluggish and I can't get motivated to do anything - everything's a complete hassle because I'm so exhausted.

I have the doctor tomorrow. I had blood tests a few weeks ago and just got a message from the receptionist telling me to get more bloods done in September. I can't wait that long - I'm tired of just existing, not living.

This is all I've got to go on:

TSH 4.41 (0.55-4.78)

Ft4 14 (10-25)

Could it be possible I can't convert T4 to T3?

I'm getting so stressed thinking I'm going to be dismissed by doc again (I get the impression she thinks I'm just a moaning hypochondriac) and I really don't know what to do.

Thanks for listening,

Tired x

[SlowDragon Administrator]

Bloods should be retested after 6-8 weeks on constant unchanging dose of Levothyroxine

Results will give false picture if you start and stop Levothyroxine

What brand of Levothyroxine are you currently taking?

(Teva brand upsets many people and Teva is the only brand that makes 75mcg tablet)

When were vitamin levels last tested?

What vitamin supplements do you currently take?

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto's?

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood 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)

Is this how you do your tests?

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

Gut issues are extremely common if under medicated or have Hashimoto's

Levothyroxine is almost always for life. Your p should not have stopped it. Low vitamin levels extremely likely after period of no Levothyroxine

Vitamin levels need to be OPTIMAL for good Thyroid

Come back with new post once you get full results

[Tiredofthis77 in reply to SlowDragon]

Hi SlowDragon,

I have maintained my dose of 75mcg for 8 weeks so blood tests would be as accurate as possible. I get B12 injections every three months and am on Vit D daily.

I've pretty much tried every brand of thyroxine and they all throw up the same problem.

I've never had a FT3 test so asked for that. Just wondered what you think of the results ahead of seeing my doc on Thursday.

Tired

[SlowDragon Administrator in reply to Tiredofthis77]

Your TSH is far too high. Symptoms are very likely due to under medication

You need 25mcg dose increase in Levothyroxine and FULL Thyroid and vitamin testing 6-8 weeks later

Make sure to get blood test as early as possible in morning and before eating or drinking anything other than water, and last dose Levothyroxine 24 hours prior to blood test

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies, if not been done

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[Tiredofthis77 in reply to SlowDragon]

Thank you!

[SlowDragon Administrator in reply to Tiredofthis77]

If you did better on liquid Levothyroxine it's still possible to be prescribed this.

But it's expensive, so they don't usually offer it via GP.

If you did well on liquid Levothyroxine this suggests you may be lactose intolerant

Do you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies

Lactose intolerance is common with Hashimoto's. Almost as common as gluten intolerance

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

Low vitamins are especially common with Hashimoto's. 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_...

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

Low vitamin levels affect Thyroid hormone

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

While still eating high gluten diet 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 in reply to Tiredofthis77]

List of different brands available in UK including liquid Levothyroxine

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

[LAHs]

Take all of the advice you have been given here and start taking matters into your own hands. If your doc says take 75mcg Levo and that doesn't work, try 100 mcg and see how you feel. You said that raising your dose gives you a stomach upset, you might have to try changing brands. If your thyroid has packed up or is struggling along hardly functional then 75 mcg is a pretty tiny dose. Start getting Medicheck's blood tests so that you can see what works after you have changed a dose or added a supplement. It will be a bit expensive for about a year while you work it all out but once you have got it right tell your doc what you expect him to prescribe and why. If he refuses start looking for a more sensible and more informed doc - at least for this problem. One of the first things you can do to facilitate T3 production is to crank up your selenium intake since selenium is the catalyst for the T4 to T3 reaction. If you have no selenium then you will not convert. But you must start reading up on all this, starting with all the references you have been given here. I know it is a hard grind but in order to get back in control and ultimately feel well you have to do it. Doctors know very little about the thyroid aspect of endocrinology and this is a scary hurdle to face. We think they are all omnipotent on health matters - but they are not and it really shows up on thyroid problems.

[Tiredofthis77 in reply to LAHs]

I seem to gain more weight when I’m on thyroxine than off. Do you think my results suggest a conversion problem?

[LAHs in reply to Tiredofthis77]

Geez that's a hard one to even speculate about a solution. Your TSH says you need T4. I would accept that but put a lot of energy into generating T3 or acquiring T3 by hell or high water.