Puzzled by return of symptoms: After a bit of a... - Thyroid UK

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Puzzled by return of symptoms

Pippycat89 profile image
15 Replies

After a bit of a battle with my GP, I was finally diagnosed with hypothyroodism in 2019 and put on levothyroxine. My dose was gradually increased to 75mcg and it has remained at this level ever since.

However, this did not control my symptoms so I increased my dose to 100 mcg (without consulting my GP). This level causes my TSH to fall (T4 stays the same) and GP not happy. So I just reduce my dose back to 75 mcg about a week before my annual bloodtest, get a result that the GP is happy with and then increase my dose again afterwards.

This has all worked fine until a lot of my symptoms started to come back about 2 months ago and I don't know why. My blood test results are ok. The only thing I can think is that it might be due to the brand of Levothyroxine. I checked with the pharmacy and I have been on Teva since at least September 2024. Not sure if I have been on that brand all the time or if it was changed. I know I have been on several different brands but don't know which ones or when they were changed.

This is the only reason I can think of for the return of my symptoms. Just wondering if anyone else on here has experienced anything similar?

Thank you

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15 Replies
Buddy195 profile image
Buddy195Administrator

What adverse symptoms are you experiencing a flare of Pippycat89?

As it has been a couple of years since you posted, can you share current thyroid blood test results (with ranges as these can vary between laboratories) for TSH, FT3 and FT4. Please remember that when medics say normal/ within range, this may not be the same as ‘optimal’ where you feel most well.

Have you tested key thyroid vitamins recently (ferritin, folate, B12 and vit D)? I, like many others here, experience adverse symptoms of these are not optimal. In the first instance, do ask your GP to test these.

Pippycat89 profile image
Pippycat89 in reply toBuddy195

Hi Buddy 195

Thanks for your reply. I have a flare up of a long list of symptoms - joint pain (wrists, hip, knees, heels, soles of feet), dry skin on legs, armpit hair stopped growing, constipation, tiredness, depression, stubborn weight gain, swollen feet/legs.....

Last blood test results T4 = 17 (12 - 22) and TSH = 0.19 (0.27 - 4.2)

Last year results were 18 and 0.24 respectively.

They don't measure T3 and only ever checked vitamins at the very beginning.

Never been diagnosed as autoimmune/hashimotos so don't know the cause of my hypothyroidism.

Buddy195 profile image
Buddy195Administrator in reply toPippycat89

You could ask GP to test for thyroid antibodies and key thyroid vitamins in first instance. Otherwise, consider the private testing companies suggested by SlowDragon, as many members here do.

I like to increase thyroid medication very slowly, adding 12.5mcg. If a jump of 75-100mcg Levo was too large an increase, I would consider 87.5mcg. Always retest 6-8 weeks after any dose change.

Pippycat89 profile image
Pippycat89 in reply toBuddy195

Thanks for your help/advice. Will look into all of this.

Lulu2607 profile image
Lulu2607 in reply toPippycat89

Practical question really. How do get 100mcg prescribed if the doc thinks you're on 75? Is it not a repeat prescription? If your results are in range but you are still symptomatic a Dr should investigate further. It may be something unrelated to thyroid?

My underarm hair never grew back but that's no bad thing!In answer to your question, I sometimes get a return of symptoms when I'm under stress or off my routine or caught a virus and wonder whether my levo is less effective then?

Also I have wondered on occasion if a particular batch is not as good . I've been given some tablets that are quite short dated in the past too and it makes you wonder how long they've been hanging around!

Pippycat89 profile image
Pippycat89 in reply toLulu2607

Hi Lulu2607.I am on a repeat prescription which I order at about the same every two months or so (I think). GP doesn't seem to have realised that the prescription isn't lasting quite as long as it should. They are very busy. I had such a battle to get meds prescribed in the first place and from what others have said on here, I am not sure they would agree to an increased dose. I know the symptoms and I know my body and I know I am better on 100 rather than 75 - despite what the blood results say.

I am not bothered about my armpit hair not growing, like you said - it's a positive. I only mentioned it because it's a sign that things aren't right.

I agree, it could be somethinĝ else, but my feeling is it's thyroid related because it all feels very familiar. My feeling is it could bt vitamins or brand.

The thyroid is such a tricky thing to sort out.

SlowDragon profile image
SlowDragonAmbassador

Retest thyroid 2-3 months after being on constant unchanging dose and brand of Levo

Teva brand upsets many people

What vitamin supplements are you taking

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 your hypothyroidism is autoimmune

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

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

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...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

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

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Monitor My Health (NHS private test service) 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/testing/priva...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

Pippycat89 profile image
Pippycat89 in reply toSlowDragon

Hi Slowdragon

Not taking any vitamin supplements, never felt I needed them as my symptoms seemed under control....until.about 2 months ago.

Also as far as I know my thyroid antibodies have never been tested. I have always followed the procedure for having blood tests - early morning etc.

Thanks for all your information.

SlowDragon profile image
SlowDragonAmbassador in reply toPippycat89

Come back with new post once you get results

Every time you temporarily reduce Levo to get results GP is happy with this will likely lower vitamin levels

What age are you

Thyroid Levels often go off a bit around menopause

Lower vitamin levels more common as we get older

Pippycat89 profile image
Pippycat89 in reply toSlowDragon

Thanks Slowdragon. Just been reading about vitamin levels dropping as you get older - I am 64. Looking into this as I am a regular runner and have been REALLY struggling recently with GI issues (nausea and stomach upsets) and lack of energy in my muscles....alongside all the other symptoms.

SlowDragon profile image
SlowDragonAmbassador in reply toPippycat89

Gut issues extremely common hypothyroid symptoms

Bearo profile image
Bearo

There are lots of posts on here from people who have symptoms from Teva. They may be sensitive to the mannitol it contains. Others don’t feel good on other brands that contain lactose or acacia.

Keep a note of which brand you are taking to see if there is one that suits you better.

Pippycat89 profile image
Pippycat89 in reply toBearo

Thanks Bearo. I did contact the pharmacy and managed to get a list of brands prescribed since September 2024. I think I may need to go back further than this. I read some people react immediately and with others it has a slower effect. It's such a minefield!

Should be easy enough to get more info from the pharmacy as they have to keep records.

I will update this post if I manage to figure out what's going on as it might help others.

helvella profile image
helvellaAdministrator in reply toPippycat89

My UK medicines document might help:

helvella - Thyroid Hormone Medicines - UK

The UK document contains:

Up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. These include declared ingredients for all UK-licensed products.

Details of every dosage of each medicine include PL numbers, PIP numbers, tablet markings, product history and links to:

● Patient Information Leaflets

● Summary of Product Characteristics

● Product Assessment Reports

● Dictionary of Medicines and Devices (dm+d) entry and current prices

Document has links to:

● British National Formulary

● NHS Drug Tariff, etc.

PLUS how to write prescriptions in Appendix F.

Also includes links for anti-thyroid medicines (but not product details).

Direct link to PDF:

📄 dropbox.com/s/bo2jzxucgp9hl...

Blog last updated 14/02/2025 - documents are regularly updated

Link to blog:

helvella.blogspot.com/p/hel...

Pippycat89 profile image
Pippycat89 in reply tohelvella

Thank you, that looks very informative. Have just requested list of all brands prescribed for the last few years to see if there is any pattern between brand and symptoms.

If that doesn't show anything, will look elsewhere....maybe vitamin levels?

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