Can anybody help?

[Daisy35]

I have been on levothyroxine for nearly 3 years 150/100 alternate days. My mom passed away end of August and I started suffering anxiety and panic attacks and lost over a stone in weight. Had my thyroid checked in December and tsh was 1( Dr will only check tsh) since then I did improve with the anxiety and have been eating normally since. The last few weeks I have been suffering with constant shakiness, feeling hot, anxiety, jitteriness, head pressures and am continuing to lose weight. Have now lost over 2 stone. I went to see GP on Monday and had bloods retaken. Today I was told that my tsh is now 0.34 and no further action to be taken! Is this normal?

[Nanaedake]

No, it's not normal but it might not be thyroid related. Did you get a printout of results and did you have vitamin D, B12, folate and ferritin tested?

I would return to doc and ask for further tests to determine cause. What levothyroxine are you taking? If TEVA then quite a few people have reacted badly to it so worth switching to a different brand to see if it helps. But still pursue the vitamins test with your doctor.

[Daisy35 in reply to Nanaedake]

I had-

TSH

FBC

UandE

Liver

FSH

LH

Prolactin

They said everything came back normal but TSH was below normal range but no action needed. I had vitD and B12 checked in December and they were normal.

How do you check what levothyroxine you are on?

[Nanaedake in reply to Daisy35]

The box of levothyroxine will have a name on the box. You can also look on the side of the box to see who has the marketing authorisation.

Are you sleeping badly since losing your mum because lack of sleep could contribute to anxiety too.

[Daisy35 in reply to Nanaedake]

It’s north star and marketed by activis.

Sleep is better now than it was before Christmas.

[Nanaedake in reply to Daisy35]

Actavis seems to be reliable and I've had no trouble with it.

Did you get a print out of vitamin D, B12, folate and ferritin? OK, is not the same thing as optimal. If you post results here with lab ranges you will get useful feedback.

If you've not had ferritin checked you'll need to ask for that too.

[Daisy35 in reply to Nanaedake]

I was just told that vitamin d and b12 were normal. I’ve never had a problem until now. I have felt ok since being on the meds. I didn’t know if the stress and anxiety I was suffering which made me initially lose weight could have contributed to me being over medicated. I am seeing a bereavement councillor and started to feel a bit better then the weight loss has carried on and I have started to feel shaky and jittery all the time.

[Nanaedake in reply to Daisy35]

If you're still losing weight I'd go back to GP and ask for further blood tests including thyroid blood tests, TSH, FT4 and FT3. Ask for TPO antibodies test to check if you've got autoimmune thyroid disease. If you do, then it's possible you may have times when thyroid hormone is raised.

It's unusual but it is possible to have antibodies for both Hashimotos thyroiditis and Graves disease (overactive thyroid). In any case, I think you need to rule out physical factors and causes of your weight loss.

Glad you're sleeping a bit better. Try to get more rest if possible while sorting this out.

[SlowDragon Administrator in reply to Daisy35]

Just saying results are normal....simply means they are with NHS definition of not being deficient

vitamin D over 50

B12 over 180

But optimal vitamin D is over 80nmol

Optimal B12 over 500

I suggest you get the actual results and ranges

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Also important to know if the cause of your hypothyroidism is due to autoimmune thyroid disease diagnosed by high thyroid antibodies and/or an ultrasound scan of your thyroid

[Hidden]

I’m so sorry to hear of your news about your mum. I can only imagine how devastating this is and I feel for you. I have both parents in poor health and I find this unbearably upsetting. It’s affected my health for sure with anxiety etc

Could you ask for T4 to be checked? Do you have a sympathetic doctor?

If not, maybe get some private blood tests. Your symptoms sound similar to hyperthyroidism?? Maybe over medicated? Or as you have had a traumatic experience, I believe this can disrupt any chronic condition.

I’m sure someone more knowledgable will be along shortly.

Do you have Hashimotos? Eg autoimmune Thyroiditis? I believe some can move between under and over active with this. I only say because I am and am mostly hypo, but occasionally have hyper symptoms like yours.

I don’t know if you have had TPO and Tg antibodies tested ever but a private GP would test these (cost me about £130) but many on here do self testing with Medichecks?? I believe approx 90% of hypo is caused by Hashimoto’s.

I’m sure some admin members will help when they message.

Best wishes

[Daisy35 in reply to Hidden]

I have never been told if I have Hashimoto. Just that I had an underactive thyroid.

[Hidden in reply to Daisy35]

I’m newly diagnosed but it was a private GP who tested for this as my GP would only do T4 and TSH once and now only TSH ( I was feeling v unwell and so wanted a second opinion) and he diagnosed the Hashimotos after checking antibodies. It doesn’t cause all hypothyroidism from what I’ve read just the majority. I’m new to this also and the admins and others have a wealth of experience that’s helped me to navigate this and inform me on a condition I knew nothing about a couple of months ago. You have come to the right place x

[Daisy35 in reply to Hidden]

Thanks. I just want to feel normal again!

[Hidden in reply to Daisy35]

Ditto to that 🙏

[SlowDragon Administrator]

Stress can affect thyroid and adrenals

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

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Do you always get same brand of levothyroxine

Come back with new post once you get results

[Daisy35 in reply to SlowDragon]

Brand of levothyroxine is normally north star. I had vitD and b12 checked in December and they were normal. I had my blood test first thing in the morning and hadn’t eaten anything but I had taken my medication.

[helvella Administrator in reply to Daisy35]

Northstar is an "own label brand" - and different dosages could be different formulations.

Although with your dose of 150/100 alternating, I would tend to think you get 50 and 100 microgram tablets? But 25 microgram tablets are a different formulation made by a different company.

UK Levothyroxine Tablets

Last updated 05/02/2020.

This is a list of currently marketed levothyroxine tablets in the UK.

🔹 Accord – formerly Actavis (manufacturer)

50

100

🔸 Almus (brand owned by Walgreen Boots Alliance – Boots and Alliance distributor)

50 – This is repackaged Accord – formerly Actavis.

100 – This is repackaged Accord – formerly Actavis.

🔹 Mercury Pharma (manufacturer – part of Advanz) includes both “Levothyroxine” and “Eltroxin” which are identical.

25

50

100

🔹 Teva (manufacturer)

12.5

25

50

75

100

🔸 Northstar (brand owned by McKesson – Lloyds pharmacy and AAH distributor)

25 – This is repackaged Teva. ❗

50 – This is repackaged Accord - formerly Actavis. ❗

100 – This is repackaged Accord - formerly Actavis. ❗

🔹 Wockhardt (manufacturer)

25

🔹 – identifies manufacturers.

🔸 – identifies repackaged products.

❗ – Take particular note of the actual product which varies by dosage.

Numbers refer to tablet dosages in micrograms.

[Daisy35 in reply to helvella]

I have north star 50 and 100 micro gram tablets

[SlowDragon Administrator in reply to Daisy35]

What’s the actual results...

Optimal vitamin results are

Vitamin D at least over 80nmol and around 100nmol may be better

B12 at least over 500

Folate at least over ten

Ferritin at least half way through range

[Daisy35 in reply to SlowDragon]

I’ll have to find out. Was just told they were normal

[SlowDragon Administrator in reply to Daisy35]

Yes....what a GP means is it’s not deficient enough for them to be obligated to prescribe....

That doesn’t necessarily mean optimal

Come back with new post once you get results

[Pkap]

In December I was having similar episodes of anxiety, shakiness, palpitations, constant low mood. My TSH levels were similar as yours around 0.2–0.3. Drs just kept saying it’s stress and lack of sleep ( breastfeeding baby) that was causing it. And refused to do anything about my thyroid medication or even test my FT4. I was 100 mcg at that time. I skipped a couple of doses and got private tests done. My FT4 levels even after missing a few doses was top of the range. I am trying a lower dose of thyroxine and beginning to feel a lot better. Maybe worth considering a consultation in this regard. I know many people vouch for feeling good at suppressed levels of tsh in case of Hashimotos . But in my case I think I feel better around a tsh of 1 or 1+. Also including a good multivitamin and wArching what I eat helped.

[Daisy35 in reply to Pkap]

I’m tempted to lower the dose myself! Hate feeling like this. Drs keep saying anxiety through loss of my mom and keep trying to just throw anti depressants at me!

[Daisy35 in reply to Daisy35]

How much was your dose lowered and how long did it take to start feeling better?

[Pkap in reply to Daisy35]

My gp lowered my dose to 75mcg. It’s been 4 weeks. I started feeling better within a week or 2. I just had my bloods again and I might need a slightly higher dose. I still feel good at 75 though. My palpitations have gone and anxiety is much better.

[Hidden]

Hey Daisy, do you have Hashis? It can swing when you're stressed. Also, my aunt was going through a horrible divorce, she got overactive thyroid from that, losing weight, jittery so stress causes imbalances in the thyroid. However, I also had these symptoms from having Levo too high (while t3 was low or under mid-range). I'd check full thyroid panel, maybe even cortisol.

[Daisy35 in reply to Hidden]

Never been told if it’s hashis. How did your aunt get over that?

[Hidden in reply to Daisy35]

Definitely check antibodies for hashimotos and ft3 ft4 with tsh. You can also test for graves, some people have both, but for most people it's Hashimotos and swings. Also, sometimes we can get overmedicated by being on the same dose, happened to me, I just need less than before.

My aunt had to get her thyroid removed, but she was very bad, had a very extreme case, was hospitalised in an endocrinology hospital etc