Fluctuating thyroid

[Luci20]

Hi, I am not sure what I should do next. My thyroid results are very up and down despite having only small levothyroxine dosage changes. The latest TSH result I had was 23.8 (0.2-4). My result before this was 0.05. I feel like I am getting no where as my GP does not have a clue and just said I must be “sensitive to levothyroxine” but did not know what dosage pattern to suggest next. I had to suggest an option myself which she agreed with. My endocrinologist is still not resuming appointments. I am considering going private if I can get seen quicker but I do not know where to go since most endos seem to be diabetes specialist and do not know as much about the thyroid. Has anyone else gone private and got better advice?

[LotiRamjet]

You and I have the same problem - I just posted. My thyroid results are up and down all the time as well. Can I ask what your diagnosis is?

[Luci20 in reply to LotiRamjet]

Hi I have hypothyroidism caused by Hashimoto’s disease. What is your diagnosis?

[Lalatoot]

If you haven't already, you need to get antibodies tested. This will help you to understand what is happening and guide your treatment.

The most common type of hypothyroidism is autoimmune thyroid or hashimotos. Hashimotos is characterised by periods of high thyroid hormones and low TSH with periods of low thyroid hormones and high TSH.

If you search on this site using the search tool you can find lots on antibodies and autoimmune thyroid problems.

[Luci20 in reply to Lalatoot]

Hi thanks for you reply. I have had my antibodies tested and I have Hashimoto’s. I got diagnosed a year and half a go but haven’t go anywhere further with getting my thyroid stabilised.

[SlowDragon Administrator]

How much levothyroxine are you currently taking?

Is GP only testing and dosing by TSH?

What vitamin supplements are you currently taking

When were vitamin levels last tested

Are you on strictly gluten free diet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with 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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Possibly cheapest option for getting all tested via DIY finger prick test

TSH, FT4 and FT3

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

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

monitormyhealth.org.uk/thyr...

And

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

[Luci20 in reply to SlowDragon]

Hi, thanks for your reply. I was taking 25mg five days a week and 50mg for two days a week. I asked my GP to test FT4 and FT3 but she refused to do these tests and said they are not doing them now due to COVID-19. I did have some vitamins retested. Vitamin D was 75-124. Folate was 12.2, ferritin 67 and B12 was 598.

[SlowDragon Administrator in reply to Luci20]

So your most recent result is TSH of 23.8 ?

You need increase in dose of levothyroxine by 25mcg per day - up to 75mcg

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

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

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

nhs.uk/medicines/levothyrox...

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

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

What vitamin supplements are you currently taking?

What’s vitamin D result?

Looks like the range rather than result

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

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).

Is this how you do your tests?

cheapest option for just TSH, FT4 and FT3

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

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

[Luci20 in reply to SlowDragon]

Yes but I had to decrease my dose recently as my TSH before this one was 0.05. My TSH keeps fluctuating both ways. I am taking A-Z multi-vitamins. Ok my doctors didn’t actually put the vitamin D result on the system it was just the range that was stated. I had my last thyroid test early in the morning but did take my levo dose prior to the test.

[greygoose in reply to Luci20]

I am taking A-Z multi-vitamins

Not a good idea. For all sorts of reasons.

But, a multi-vit will automatically contain biotin, so did you stop your multi-vit for at least a week before the blood draw? Otherwise, the biotin can skew the results.

[Luci20 in reply to greygoose]

No I didn’t know so I had been taking multi-vitamins before the blood test. Thanks

[SlowDragon Administrator in reply to Luci20]

Suggest you get FULL Thyroid and vitamin testing privately

Sounds like Hashimoto’s

Essential to stop ANY Supplements That contain biotin a week before ALL Blood tests

Multivitamins not recommended as detailed here

healthunlocked.com/thyroidu...

[fuchsia-pink in reply to Luci20]

she refused to do these tests and said they are not doing them now due to COVID-19

That is outrageous - and absolutely NOT the case generally. You will see many posters here having GP testing beyond TSH.

I'm sure you know it anyway, but TSH isn't even a thyroid hormone, it's just a message from the pituitary to tell the thyroid to work less or harder (in your case, insanely hard). You can't know how you're doing until you know what your thyroid's actual output is - and that means measuring thyroid hormones - free T4, the inactive thyroid hormone and free T3, the active hormone needed in every cell in your body.

Is there any chance of seeing a less incompetent GP in your practice? If not, please take SlowDragon 's advice and get some private testing. Good luck x

[Luci20 in reply to fuchsia-pink]

Thanks for you reply. I keep getting appointments with different GP’s but they all seem to be the same!

[SlowDragon Administrator in reply to Luci20]

Strongly recommend getting FULL thyroid and vitamin testing privately to make progress

Presumably you have had dose increased up to 75mcg daily now?

What vitamin supplements are you currently taking?

Ask GP to test vitamin D, folate ferritin and B12 NOW

Bloods should be retested 6-8 weeks after each dose increase

[Luci20 in reply to SlowDragon]

Hi thanks for your reply. I had very bad side effects to taking 50mg just on 5 days a week and 25mg then on the other 2 days. My TSH went to 0.05 when doing so. I am now taking 37.5mg everyday to see what happens with this dosage. I am still taking multi vitamins at the moment and omega 3 tablets.

[SlowDragon Administrator in reply to Luci20]

Multivitamins are NEVER recommended on here...

healthunlocked.com/thyroidu...

most contain iodine

As you have Hashimoto’s, iodine not recommended

drknews.com/iodine-and-hash...

Suggest you stop multivitamins and test vitamins....only supplement what’s necessary

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Essential to stop any supplements that contain biotin a week before any blood tests as biotin can falsely affect ALL test results

TSH likely went low due to Hashimoto’s flare (temporary swing in levels as thyroid cells breakdown and release excess hormones ) usually we become increasingly hypo after each flare up

Your last test shows very hypothyroid

[SlowDragon Administrator]

Suggest you reread this post and it’s replies

And this one

healthunlocked.com/thyroidu...

Gut issues suggests low vitamin levels and likely gluten and/dairy intolerance

Obviously you are/were only on tiny doses levothyroxine