Fed up. Putting on weight after GP reduced my Levothyroxine dose based on TSH not being in range.

[Scopas]

Fed up. Putting on weight after GP reduced my Levothyroxine dose based on TSH not being in range. Now I'm on 125mg they are happy with my TSH but I'm now back up to 95kg. Despite being active. I walk over 10k steps a day and eat a healthy diet. Don't know what to do. my blood pressure is now also high. Phoned for an appointment with my GP and reception offered me a phone call from a pharmacist. I insisted on a face to face appointment but I don't know how to tackle getting back on the right dose. Please help

[Buddy195 Administrator]

Welcome to the forum Scopas,

So we can offer better advice, can you tell us more about your thyroid condition, eg when you were diagnosed, plus blood test results (with ranges in brackets- as these can vary between laboratories ) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health: 

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

[Scopas in reply to Buddy195]

Thank you. I shall order an online test as the Dr isn't interested in doing more than TSH.

[SlowDragon Administrator]

Have you had blood test since dose was reduced

What’s the reason for your hypothyroidism

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

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

plus both TPO and TG thyroid antibodies tested.

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

What vitamin supplements are you currently taking

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)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before 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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[Scopas in reply to SlowDragon]

Thanks so much for the comprehensive reply. I don't take any vitamins or mineral supplementation. Up til now thought a healthy diet and lifestyle would be enough but I will get the tests done then report back and hopefully with the help on here get things sorted. So reassuring to know there are caring people out there.

[SlowDragon Administrator in reply to Scopas]

When hypothyroid we frequently develop low stomach acid and this leads to poor nutrient absorption and low vitamin levels as direct result

You will see on here that thousands of members find they need to supplement at least vitamin D and vitamin B complex daily

But always test levels BEFORE starting any supplements

Eg Medichecks results

healthunlocked.com/search/p...

[SlowDragon Administrator]

Never agree to dose reduction based just on low TSH

Insist on full thyroid, TSH, Ft4 and Ft3 test plus all four vitamins before considering changing dose

If Ft3 is not over range you’re not over medicated

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

[Scopas in reply to SlowDragon]

Thanks for replying. I'm worried about my blood pressure. I'll get the tests and monitor my BP for a week and see where we go.

[Simplyred57 in reply to Scopas]

When my thyroxine was reduced last year I had a routine health check around the same time and my blood pressure was high, never had high blood pressure before , had to have a24 hr monitor from the surgery , my endo did another blood test after I said I didn’t feel great and agreed to increase my thyroxine back up again , and amazingly my blood pressure at the next check up was back to normal 🤷🏼‍♀️