All symptoms have returned but worse

[Canne101]

I have been on Levothyroxine for about 15 years and my dose has gradually increased to 150mcg. About 3 years ago all of my main symptoms returned with a vengeance . Dry skin, weight gain, brittle, peeling nails, lethargy, constipation, brain fog, psoriasis inside ear canals etc. then significant hair loss and thinning on my head and eyebrows that I didn’t have before. Also muscle weakness and pains in my arms. I keep getting my levels tested but results are always OK and the GP pretty much told me there is nothing they can do. I really need some advice if anyone can help.

[SeasideSusie Remembering]

Canne101

So that we can help you can you please add your latest test results, with reference ranges, TSH, FT4 and FT3. The reference ranges are important because they vary from lab to lab so we need your lab's ranges to interpret your results.

If you've had any other tests done, eg thyroid antibodies, vitamins, please add those too.

[mstp in reply to SeasideSusie]

You are entitled to a print out of your test results so if you don't have one just ring your GP's reception and let them know you want one. I too went downhill after 15 years on thyroxine. Let us see your test results and the way forward might become a bit clearer.

[SlowDragon Administrator]

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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 

Also both TPO and TG thyroid antibodies tested at least once 

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)

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 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 vitamin levels tested by GP ….Just Thyroid includes BOTH TPO and TG antibodies - only £29

randoxhealth.com/at-home/Th...

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. 

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...

[Hookie01]

Could be peri-menopause? I'm 45 and struggling with it. Symptoms can be very similar.

[Hedgeree]

Hi Canne101,

Welcome to the forum ☺️

As others have already said post any results you have (and their ranges) so others on the forum can comment on them and make suggestions for you.

Their's much knowledge on the forum and people here are very friendly.

One thing that jumped out at me was you describe having muscle weakness and pains in your arms. When my vitamin D levels were low I had very sore arms and also weakness. It was a struggle to lift my arms above my head. I also had daily headaches.

So if you have any vitamin blood test results post them too so others can help you.

Best wishes.

[Panda_26]

I had a similar experience, - 10 years ok on thyroxine then it stopped working for me. Looking back I was probably peri menopausal and things were changing . I tried every form of it to no avail . I eventually tried ndt out of desperation. I've been settled on it ever since . I agree that you need to ask for your results for starters . You may have the proof right there that you are undermedicated, - or that for some reason it's not getting to where it needs to be! You may also need some T3 if you're not converting well, either way a blood test will give you the clues to what's going on...