Thyroid going crazy

[Bunty118]

Help. I have been on 75mcg of thyroxin for 10 1/2 years. Struggle with shakiness at least once a week. The past month. I have been so shaky its like I have Parkinson's. I went to the dr. Im 48 perimenopausal . My liver enzymes are double. Thyroid was high so dr dropped it to 50. Then to 25. I was feeling less shaky but woke up this morning i waa sick. Very dizzy and supposed to be going back to work tomorrow. I ride horses in london! Any ideas of what to do. Never posted before saw a endo specialists 10 years ago. Bloods all seem fine. Awaiting a chest xray and ultrasound for possible hernia too! Thanks for reading.

[SlowDragon Administrator]

Welcome to the forum

Please add actual results and ranges

If TSH was high you needed dose INCREASE in levothyroxine

Did you mean Ft4 result was high?

Which brand of levothyroxine were you taking when on 75mcg? .....was it Teva ?

Which brand of levothyroxine are you currently now on only 25mcg levothyroxine?

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

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)

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 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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Unless very petite, 75mcg levothyroxine was very low dose levothyroxine to be left on ......likely to have very low vitamin levels as direct result

[Bunty118 in reply to SlowDragon]

Thankyou. I have never had bloods taken that way. Never been told to stop taking thyroxin and never known my levels! I take levothyroxine 25 micrograms now. Only reduced in the last 2 weeks but seem to be getting worse. I have been given prochlorperazine 5mg to stop the sickness and dizziness. No idea why suddenly my body is all.over the place.after so many years. I have suffered with ocular migraines and loss of vision but not recently. Looks like a call to the gp on Monday and insist on seeing a specialist or get these blood tests. Happy to pay as I am desperate. Thankyou so much.

[SlowDragon Administrator in reply to Bunty118]

What brand of levothyroxine are you currently taking

What brand when on 75mcg

Many people find different brands are not interchangeable and Teva brand is lactose free. Suits some people very well, but many people find it intolerable

Sickness and dizziness suggests under medicated

Migraine common hypothyroid symptom

First thing is, do you have any actual blood test results from these recent tests?

if not will need to get hold of copies.

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.

Link re access

healthunlocked.com/thyroidu...

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.

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

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

See what you can get GP to test

But any missing tests ....get privately

You will see thousands of members on here forced to test privately to make progress

[Bunty118 in reply to SlowDragon]

I really appreciate your time to be Honest i dont know the brand. The 50 were accord and orange packets. The 25 are from mercury pharma and blue. Also have some from wockhardt with green packets all say levothyroxine. Does that help?

[SlowDragon Administrator in reply to Bunty118]

So you never took a 75mcg tablet (this is only made by Teva)

Next step....get hold of all test results done

Come back with new post once you get results and ranges

[Bunty118 in reply to SlowDragon]

Thankyou

[Bunty118 in reply to Bunty118]

Results.... Serum TSH level - (JMZ) - Abnormal

contact GP

<0.02 mu/L 0.27 - 4.20mu/L

**[[Set=TSHR]]**

26-Nov-2020 ! Serum free T4 level - (JMZ) - Abnormal

contact GP

28.8 pmol/L 12.00 - 22.00pmol/L

This was on 50 mgs of thyroxin. Dr reduced me to 25 and im not getting better.

Ferrartin normal.

Liver enzymes high 48

Please advise. As I have a phone appt after 9 am.

[tattybogle in reply to Bunty118]

hi bunty SlowDragon will not have seen this as you 'replied' to yourself.Those results from taking 50 mcg do indeed show too much thyroid hormone, and the shakiness you describe , if it was a tremor in your fingers, can also be a sign of too much thyroid hormone.

So i do understand why they reduced your dose to 25 based on these results .

Which just leaves the question of where it's coming from when you've been stable for such a long time.

Has your doctor rung yet ?

[Bunty118 in reply to tattybogle]

Thank You. Yes he rang. Referring me to endocrinologist meanwhile checking tsh and t4 tomorrow and liver enzymes as they are still high. Meanwhile i have ordered an additional blood tests inc vitamin d and bs. Could my fluctuation after so long be linked to menopause?

Thanks for your time its very reassuring as I have never really paid attention to my levels before!

[tattybogle in reply to Bunty118]

Menopause does seem to mess things up, it did for me , but not until a couple of years after i'd stopped having periods completely , and also i had much less of an dose reduction needed than you have . I kept becoming over range on the fT4 , but i've only had to adjust from 150 to 125 to 112.5 . I'd been on 150 for years and then became shaky and got 'too frequent' bowel movements, lost quite a bit of weight , which left me too thin ,and got really over anxious. (Although the anxiety may have been menopause/ or too much thyroid /both/ don't know which.)

Reducing by just a small amount has helped, but they reduced too far to 100 and that left me constipated so we put i back up a bit .

This is over about 4/5 years. Before that i was on 150 for about 15yrs.

So if you are still peri menopausal, i'm not sure whether menopause would be a reasonable explanation for what's going on with you or not.

It's good that they've referred you to endo, they will be able to do a scan off thyroid , and check your actual fT3 levels.

Whatever is causing your fT4 ( and presumably fT3) to have become too high, the change in your levels , and therefore the changes in dose will make you feel 'off', for several weeks at least.

I found that just a 12.5 mcg reduction took about 8 weeks to start to fully settled again ,

Changing thyroid levels are very unsettling , and no fun.

It will be interesting to see what the results on 25 mcg were.

How are you feeling now ?

[Bunty118 in reply to tattybogle]

Thank you for your reassurance. I am tired but not wobbly today. Doesn't mean it wont get bad later. I lost about 12 lbs but being at home over xmas 6 have gone back on!. I think.losing so much weight was the indicator. I plan to rest as much as possible this week ready for work on sunday. Gp told me I should of gone to hospital last Friday but that's not me. I will have bloods done tomorrow so will let you know. Thanks again x

[SlowDragon Administrator in reply to Bunty118]

What were your results when on 75mcg?

Reducing levothyroxine dose tends to dramatically lower vitamin levels

High Ft4 can be due to very low vitamin levels

Low vitamin levels tend to lower TSH because conversion of levothyroxine (Ft4) to Ft3 (active hormone) gets worse and worse

Results in being hypothyroid due to low Ft3, but TSH being low and Ft3 being high. Hence why it’s totally inadequate to just test TSH and Ft4.

Low Ft3 tends to lower vitamin levels

What is the ACTUAL result for ferritin

You need B12, folate and vitamin D tested

Next step is to get FULL Thyroid and vitamin testing done

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 NOW or test privately

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).

Only test on Monday or Tuesday morning and post back via tracked postal service

[Bunty118 in reply to SlowDragon]

Thank you. Im not sure of blood results on 75. It was a long time since tests. The dr has booked me in for thyroid function tests snd liver enzymes as they are very high too..i have also booked a private test for full thyroid and vitamin tests. Fingers crossed!

[shaws Administrator in reply to Bunty118]

25mcg of levothyroxine is too low a dose. It is usually an incremental dose when we are first prescribed levothyroxine and increased until TSH is 1 or lower. The aim is a Free T4 and Free T3 in the upper part of the ranges but both are rarely tested.

[Bearo in reply to Bunty118]

have been given prochlorperazine 5mg to stop the sickness and dizziness.

The notes accompanying these tablets say to take care/check with your GP if you have under active thyroid. And a long list of contraindications.

[Bunty118 in reply to Bearo]

Thats interesting to know, thank you. I don't take them now unless extreme symptoms. Thankyou.

[Bunty118 in reply to SlowDragon]

Thank you for your help, I had private blood tests with thriva, my results are still high. Ft 4 normal but tsh 0.01.Symptoms are better still on 25mcg levothyroxine. .

Been referred to endocrinology. Shakiness is far less and sadly all weight loss has crept back on!

[SlowDragon Administrator in reply to Bunty118]

Do you not have any more results than just TSH and Ft4

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 and especially after dose reduction

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)

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

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/

Just Vitamin D NHS postal kit

vitamindtest.org.uk

[Bunty118 in reply to Bunty118]

All vitamins tested apart from vit d very low, all ok, I paid for full thyroid. Cholesterol all good. It didn't show ft3. I will have another look. Thanks.

[RdeR]

Hi Bunty

Sounds like you need to re-visit an endocriologist but before you do, go to your own Dr and get a blood test done. Your own Dr will know the things to test for. My intake of levotyrox was at 150 per day and my TSH was at 26. I was changed to a drug named EUTYRAL. My TSH was back to normal in one month. Don't wait to see what will happen... Get something done about it. Levothyroxine is not the be-all and end-all of thyroid treatment. Take care and good luck.

[Bunty118 in reply to RdeR]

Thank you! Will do. ☺️