Confused by results.

[Bertiec]

I have been on Levo for over 30 years and get tested every year. I am also type 2 diabetic. I have just reduced from 150 to 125mcg without asking Dr. Reason being that I was getting anxiety attacks every morning and they have now stopped. Does anyone else have these problems?

[Marz]

Your problems could be linked to your thyroid. Do you have your latest results with ranges ? Have you been tested for B12 - Folate - Ferritin - VitD ?

Welcome !

[Bertiec in reply to Marz]

Not since last September. Due again in March. Its weird how my anxiety attacks have decreased since I reduced by 25mcgs.

[Marz in reply to Bertiec]

You are legally entitled to request copies of all test results with ranges. We need to monitor our OWN progress and check what has been missed .. You can ring the surgery and say you will be along in a few days to collect. Also your surgery should have on-line access - have you checked ?

25mcg is miniscule and as a storage hormone I cannot imagine how it causes/reducesanxiety - unless you need a change of brand due to fillers etc.

What other drugs are you taking ? There could be an issue there ... blood pressure meds can interfere with Levo.

[Bertiec in reply to Marz]

I will put a request in to my GP. Also, we have a Pharmacist living nextdoor. I will see what he thinks about my other meds. I never get to see the same Dr when I can get an appointment and ten minutes isn't long to discuss issues.

[Marz in reply to Bertiec]

From being a member here for 8 years I have read and learned a great deal. It is possible the Pharmacist may know which drugs are contra-indicated. You could read the PIL - patient information leaflet - or check it out on-line. Some blood pressure pills can and do affect levo.

The request for your results can go to Reception ...

Once you have all your results with ranges you can start taking control by asking for advice here. With over 104.000 members there is a great deal of knowledge and experience shared. We read every day of members being poorly treated and GP 's lacking in knowledge.

I have been living in Greece for 15 years until recently , so I mostly took care of myself with the help of this forum - and I still self-treat. Having optimal levels of B12 - Folate - Ferritin and VitD is key. Again your GP and pharmacist will not be aware ... There is so much we can and must do to help ourselves ...

If you want to learn more about a member you can click onto their username and have a read 🤔

[humanbean in reply to Bertiec]

Don't talk to your GP about getting copies of your blood test results and test history. As Marz said, you can ask the receptionists and don't need to use up an appointment. When you ask for information from your medical records always take proof of identity with you.

[Lora7again]

Did you feel well on that dose? Then why has your Doctor reduced it?

We do need to see your blood results which must include TSH, T4 and T3 as well as any vitamins results like B12, Iron and Ferritin, Vitamin D and Folate these always tend to be low in thyroid disease sufferers and can affect how the the Levothyroxine works.

[NWA6]

Hi Bertiec👋 I’m assuming you’ve been stable for 30yrs? Quite happy with your levels and treatment? Sorry to hear that you’re diabetic. It could have been that as you got older you didn’t need quite so much Levo, that’s quite natural. It would have been better to have a full test before reducing as that would have helped you understand if Levo was the reason. Test, reduce, test again. If you feel good then I’d do a test and see where your levels are at that way you’ll know your numbers and be more in control of your numbers. It’s not too dissimilar to diabetes.

[Bertiec in reply to NWA6]

Thank you. Yes I was feeling ok except for the anxiety attacks. I read that too much Levo can cause this plus excessive sweati ng which is a nightmare. I have difficulty getting GP appointments. Nearly always emergencies only at our Practice. I thought I would cut Levo down and then go for my test due in March.

[Marz in reply to Bertiec]

Sounds as if your VitD is low - also the T3 ...

[NWA6 in reply to Bertiec]

If you can do private tests, Medichecks, Thriva, Blue Horizon ect, you don’t have to be bound by GP/nurse appointments. Anxiety and sweating ect can be caused by a number of things.

[SlowDragon Administrator]

Anxiety can be caused by poor conversion of FT4 to FT3

This results in high levels of FT4...but very low levels of FT3

Low vitamin levels can badly affect conversion

Just testing TSH and FT4 is completely inadequate

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

B12 levels drop as we age

Low vitamin D is worst in winter

You need FULL Thyroid and vitamin testing 6-8 weeks after any change in dose (or change in brand) of 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

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)

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

Conversion of FT4 to FT3 often gets worse after menopause and/or the longer we have been on Levothyroxine

Come back with new post once you get full results