Undiagnosed under active Thyroid: Hello all. Here... - Thyroid UK

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Undiagnosed under active Thyroid

ContiCoachDriver profile image
5 Replies

Hello all. Here is my story.

When I was a young teen, I was thin and people often commented that ‘I must have hollow legs’ due to how I could eat and eat and it never seemed to affect me.

Puberty hit and my weight ballooned, almost overnight. Along with weight gain I started sweating profusely and could never control my temperature.

I have spent over 20 years continually visiting the GP complaining about my weight and sweating. I continually get told to ‘go on a diet’ but that is all I’ve done!

I feel like I’ve tried every diet, every variety of diet, every eating fad, and I’ve starved myself. I work out a lot and do a lot of walking. I am very physically active.

I work mostly abroad for a coach holiday company, taking passengers from the U.K. to locations across Europe, including Italy, Spain and France.

Once, my GP advised that I try the Mediterranean diet, even though I’d been consistently in that area with work! I felt so sad, like no one was listening or believing me.

I eventually approached a medical trial which I was accepted for with Novo Norsk. This is for one of the medical jabs that suppress appetite.

I took the trial because, even though there was a chance of being on a placebo, I wanted regular blood tests and exams from a part of the NHS that were being paid by the pharmaceutical company to monitor trial participants. I wasn’t interested in the jab, but felt that testing might help me.

A year and a half of testing has shown that my thyroid levels ‘sit at the bottom end of normal’ but occasionally dip below normal, meaning my thyroid is occasionally under active. However, they say this is not enough to consider it as having an under active thyroid as it returns to the bottom of the normal range.

During the trial, I was bed bound for a week with Covid. I didn’t do any real movement. During that time I gained nearly a stone! In a week! To me that is abnormal. But then it takes such a long time to fight back that weight gain.

During the medical trial, they have stated I have perfect heart rate, perfect blood pressure, am not diabetic nor am I pre diabetic and am not at any risk of being diabetic due to my fairly active and healthy life style. The one nurse described me as a thin man in a fat suit.

Nothing makes sense to me with my weight. The other problem is the sweating, which is constant and depressing.

I work out, and then obviously shower. I then sit and relax and will sweat continuously for an hour to the point where I feel I need to shower again.

I go for walks and sweat so much that my shirt soaks through, even in winter. I hate hot weather which is fun especially when I work abroad during the summer.

Even the minimum amount of physical activity, including doing my job makes me sweat.

The NHS told me that temp control symptom of thyroid issues, along with dry hair and dry skin.

I showed them my consistently dry and cracked hands and dry hair.

So, after reading a post in this group, and joining myself, I have followed some advice from another post and have made the decision to try medication for myself without a prescription. I submitted to a questionnaire on (name removed by admin) . It came back with suggesting Levothyroxine so I have ordered a supply.

I checked out e-surgery.com to check its legitimacy as I was nervous but it all seems above board with excellent reviews.

So that’s my story. 24 years struggling and depressed with a situation that I feel is very much outside my control!

I will try and keep a log of everything and see how i get on.

Any advice would be completely welcomed! Surely there must be others out there the same as me! Has anyone been through the same and taken the decision to deal with this themselves? Has it worked? What should I do to ensure I do this properly?

Thank you for your time reading my post.

Matty

39 Male

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PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum

What thyroid tests have you had? For full thyroid test you need TSH, FT4 & FT3. TPO & TG antibodies also important to test Folate, ferritin B12 & vitamin D.

If you have any results post them here with the lab range (ranges vary between lab & machines, so needed for every test)

Have your tests been abroad or by NHS. Often GPs / NHS Labs start with testing TSH alone, many use private tests to gain an entire picture in 1 go.

ade1961 profile image
ade1961

Hi, may I suggest you test your testosterone level. I am male and hypothyroid and suffered terrible sweating problems. Levothyroxine did not help with this as I had hoped. I eventually discovered extremely low testosterone levels, (hypogonadism). Treatment with testosterone replacement has been very successful . Good luck

sparkly profile image
sparkly in reply toade1961

I just came to say the same. Have his testosterone checked due to the sweating

nightingale-56 profile image
nightingale-56

To get full private thyroid tests, you could try Medichecks or Blue Horizon. The details for both companies are on Thyroid UK website. If you then post these blood test levels, then people can help further.

SlowDragon profile image
SlowDragonAdministrator

I submitted to a questionnaire on e-surgery.com

It came back with suggesting Levothyroxine so I have ordered a supply.

STRONGLY recommend you get FULL thyroid and vitamin testing BEFORE starting on Levo

And you will need to retest 8-10 weeks after any dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if you have autoimmune thyroid disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Low vitamin D very common when over weight

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin) and would need to test privately to get diagnosed

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Also …..if you’re actually driving the coach ……look at cortisol levels

This is a high stress, but totally inactive job.

Too high…or too low levels of adrenal hormones will also affect Thyroid and cause symptoms

If your adrenal levels are compromised these need addressing BEFORE starting on levothyroxine

regeneruslabs.com/products/...

Excess sweating, especially at night …..can be low B12

Low iron/ferritin levels can also make weight loss difficult

Come back with new post with FULL thyroid and vitamin results BEFORE starting on levothyroxine

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