Advice please

[Dizzy444]

Hi some advice needed, I’ve had or have subacute thyroiditis and the GP did my bloods in early February but just checked tsh which was 0.52 I’ve not been well lately and decided to have it checked again. The following results came back yesterday. I’m not on medication

[SeasideSusie Remembering]

Dizzy444

Please make an urgent appointment on Monday to discuss these results with your GP, they are showing you to be very hypothyroid at the moment.

Did this test include TPO and Tg thyroid antibodies?

[Dizzy444 in reply to SeasideSusie]

No just the ones shown, to be honest I’m new to this and don’t fully understand everything. Plus at the moment I’m not feeling well, and haven’t done for months if I’m honest. The doctor just did tsh at my last test in February

[SeasideSusie Remembering in reply to Dizzy444]

Dizzy444

Who told you that you had "subacute thyroiditis". If this is correct it can be temporary, possibly caused by a viral infection. It is also know as De Quervain's Thyroiditis.

However, there is also Hashimoto's Thyroiditis which is an autoimmune disease where the immune system attacks and gradually destroys the thyroid, this tends to start off with a "hyper" episode when TSH will be very low and FT4/FT3 very high.

When your TSH was 0.52 what was the reference range because from most of the ranges we see here that result would be in the lower part of the range, not below range. If you don't have a copy of the results then you can ask the receptionist at your surgery for a print out (we are legally entitled to our results in the UK) and the range will be on there.

Thyroiditis is discussed on the NHS website here:

nhs.uk/conditions/thyroiditis/

It would be worth you looking round ThyroidUK's main website (this is their forum) and start here:

thyroiduk.org/if-you-are-hy...

Check out "Hashimoto's Disease" because if you have raised antibodies this would be suggested.

Also click on their home page to check out the rest of the website.

You certainly need more than this tested, you could do another test with Medichecks (I think that's who you have used) and include thyroid antibodies and vitamins as well. Have a look at their Advanced Thyroid Function Test which is a full thyroid and vitamin panel:

medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/help-and-supp...

[Dizzy444 in reply to SeasideSusie]

Hi was diagnosed with subacute thyroiditis in early December, I had pain and swelling, flulike symptoms and felt very unwell. A scan confirmed the diagnosis. Apparently it’s not very common, so not a lot of useful information available.

[SlowDragon Administrator]

GP should start you on levothyroxine on Monday

Standard starter dose of levothyroxine is 50mcg

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels and thyroid antibodies

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

[Dizzy444 in reply to SlowDragon]

Thank you very much for the reply, and for all the information. I’ll see if I can get telephone consult on Monday although I know my usual GP is not there so they may want me to wait.

[SlowDragon Administrator in reply to Dizzy444]

You should see/talk to any GP

TSH is above range and Ft4 and Ft3 way below bottom of range

You need levothyroxine prescribed ASAP

Take/email copy of results into to GP

[jimh111]

How did they know you had subaccute thyroiditis, did you have some illness then?

At the moment you are very hypothyroid, the low fT3, fT4 show this. TSH tries to stimulate the thyroid to make more hormone which is why it is so high. It will be useful for your doctor to check for TPO, TBG antibodies - this is more for knowledge, it doesn't affect your treatment.

The doctor should start you off on levothyroxine. It is generally recommended to start patients off on 100 mcg nowadays but most doctors still stick to 50 mcg which just slows down recovery a touch. If you are elderly they might start you on 25 mcg. It will take several months to feel fairly normal but you should notice a difference after about a week. Try to avoid driving, doing any hazardous activities for a week or so and if you are in work let your employer know that you will be under par for some time.

[Dizzy444 in reply to jimh111]

Yes I started with this early December and felt really ill. I believe that the thyroid may return to normal functioning but will taking medication prevent this happening.

[Dizzy444 in reply to jimh111]

I’ve been thinking that if tsh can go from 0.52 to 74 in a few weeks is it possible it may go back down as quickly, sorry I’m so clueless, this is all new to me

[SlowDragon Administrator]

Agree with jimh111 you definitely shouldn’t drive, may be unable to work until few weeks after starting levothyroxine

It’s not an instant fix.

See flow chart on here for guidelines on starting on levothyroxine

gp-update.co.uk/Latest-Upda...

Takes several weeks to get use to each dose levothyroxine

[Dizzy444 in reply to SlowDragon]

I’ve been on a very low calorie diet for a few weeks because of pre diabetes, could this have made matters worse. Also at the moment I’m very shaky which has not happened before I’m literally having problems typing my hands so shakey.

[SlowDragon Administrator in reply to Dizzy444]

You don’t want to diet at moment

Diabetic numbers should improve as hypothyroidism comes under control

Very low calorie diet can badly affect thyroid

[Dizzy444 in reply to SlowDragon]

Just like to thank everyone for your help, I contacted private Dr I saw when I started with this problem. He kindly rang me on Sunday and arranged more urgent bloods and asked gp to prescribe levo 50mcg increasing to 100mcg after two weeks, which I started this morning He did say I was very underactive.

I would like to ask if there are any books you could recommend, something that explains this disease in simple laymen’s terms.

Thanks again

[bajmon in reply to Dizzy444]

I'm going through Subacute Thyroiditis and have been very ill since November. My symptoms were quite severe; high fever on and off for several months, extreme pain in neck, ear, jaw, back of the head, lump in my neck which grew extremely fast. Ultrasound showered nodules and giant cells. Even then none knew what was willing with me. I was send to have fine needle biopsy and again the results were inconclusive. After that I was referred for an urgent surgery to get the right part of thyroid extracted to rule out cancer. I stuck to my gut feelings, went privately and forced the doctor to give me some steroids. After 5 days I had no lump on my neck! Though the same symptoms occurred in the left side note and I was very ill for another free months this priced that I was correct and I was suggesting from Subacute Thyroiditis rather than cancer and the surgery wasn't necessary. I'm still suffering from low energy levels, pain in hands and feet, swelling and occasion fever but I'm much better. I wonder how was your ST manifesting? I'm now on 50mcg Levothyroxine and haven been on it for 11 weeks but my results have not been ever as crazy as yours.

[Dizzy444 in reply to bajmon]

Hi I’m now on 75mcg of levothyroxine. I’m feeling better and no longer have the pain or fever but I am far from well, I feel tired and weak with strange pains in my legs.My tsh reduced down to 0.11 so my meds were reduced. I have been told there is a chance the thyroid will return to normal, I hope so as I just don’t want to feel like this forever. Keep me updated on your progress

[bajmon in reply to Dizzy444]

I feel your pain. How long have you been suffering for? Did you go through any infection prior to that? I had bad Covid19. several months before that but I was told it was too long ago to cause ST though my partner noticed that I was not myself for a while before the pain started probably 2-3 months post Covid19. I also noticed about 2 months before the pain started that I was in more pain in my hands and legs, I suggested from extreme hair lots and even more weight gain than in last 7-9 years. For someone who use to be stick skinny and bullied for it at size 6-8 I'm now size 10-12. I use to was not able to put on any weight. That's why my worry is that I was suffering from Thyroid for years but none could be bothered to check this and now I'm being told that it's not the case but how do you explain years of feeling terrible. Honestly I've lost hope to get good care anymore.

[Dizzy444 in reply to bajmon]

I started feeling unwell around November last year, just a virus I assumed, and then started with the st symptoms. I don’t know a lot about thyroid problems, but I’m learning a lot from the ladies here, they seem very knowledgable.

[Hidden in reply to bajmon]

Don't lose hope; get angry.

We've all paid into the NHS for years, time to start making some noise and get your money's worth.

Don't be fobbed off and don't let them keep you sick.

[bajmon in reply to Hidden]

Thank you. I find it more helpful to take to people here than to any doctor.

[Hidden in reply to bajmon]

Same!

[Hidden in reply to Dizzy444]

Did you have T4 or T3 tested at the same time? Sounds like your GP reduced your dose based on the TSH which probably means you're still undermedicated.

[Dizzy444 in reply to Hidden]

Yes both tested and midway in range. The endo reduced the dose from 100 to 75mcg I’ve been taking 100 and 50mcg alternate days

[Hidden in reply to Dizzy444]

Well that's why you feel terrible. Have you got the list of thyroid friendly endos?