Frustrated!

[Mia09]

I have been feeling very anxious and not sleeping well. My doc said my last thyroid results were low - meaning my TSH as he said that is all they test for! It was 0.5 so he's told me to reduce the Levothyroxine to 50 mcg instead of 75 mcg. He said everyone is different and 0.5 may be too low for me. My question is how do I ask him to test for all the other things that I read about on this forum without him barring me from his practice! Thanks in advance for any advice.

[SeasideSusie Remembering]

Mia09

Well, if that was me I'd be reminding him that TSH is a pituitary hormone and not a thyroid hormone, and it's the thyroid hormones - FT4 and FT3 - that tell us whether we are taking the right dose of Levo.

But if you honestly think that you would get barred by asking for further tests, then I would do the full thyroid/vitamin panel with Medichecks or Blue Horizon and if that proves a point you want to get across then show him the results.

Medichecks Thyroid Check UltraVit, 20% discount across the board until midnight on Monday 29th April or Blue Horizon Thyroid Check Plus Eleven.

[Aurealis]

Can you describe the ‘not sleeping well’. Every night? Difficulty falling asleep? Repeated waking? Waking early? All of them? Etc

[NWA6]

So go with how you feel rather that the tests. But don’t reduce so quickly. For 2/3wks try taken your meds 75/50 every other day. Note how you feel. If no better or not optimal then go for 50 x 5 and 75 x 2 days. See how you feel. I don’t like it when GP’s cut 25mcg very quickly! Take it slow if you need an increase or reduction so you find your sweet spot 😀

[Mia09 in reply to NWA6]

That's great. Thanks for the support.

[McPammy]

Maybe reducing by 33% is too much. Try reducing by 12.5 not 25.

Or 75 one day 50 the next and so on.

[ilovecruises]

In answering your question "My question is how do I ask him to test for all the other things that I read about on this forum without him barring me from his practice!" I would say that may not be the doctor for you and you should research and seek out another doctor that will take issue with you asking to run other tests. You have to advocate for yourself.

If it's any consolation I'm on my third endocrinologist and will be consulting with a fourth in the event the one I'm seeing now plan of action is to continue to look just at the TSH or the numbers and not the horrible side effects and or underlying reason for the side effects and treat them I'll have someone else on hand to see. Prior to the endo, I was seeing a thyroid specialist which I again changed doctors until I decided to just see a surgeon to have it removed, which now I wished I'd only had the enlargement removed and not a complete thyroidectomy.

However, if you don't want to change doctors then you'll have to resolve in yourself that when you ask for more that he may not be willing to do more and be okay with it. But, I would definitley ask--you shouldn't be anxious or afraid to ask and advocate for yourself/health. I hope you get some resolve.

[Mia09 in reply to ilovecruises]

Thanks. I have asked two different doctors at my practice and they have both said "we only test TSH levels", so it looks as if I'll have to seek other options.

[ilovecruises in reply to Mia09]

Sorry to hear that and it's sad what we have to go through with these doctors. I'm seeing my endo today and I'm armed with information and we'll see how this turns out. I'm going to ask for the NDT and see what happens and I have some information to take. I'll post the information I've been pointed to by someone in this group below and some other information that I've researched on my own.

"Levothyroxine Monotherapy Cannot Guarantee Euthyroidism in All Athyreotic Patients" ncbi.nlm.nih.gov/pmc/articl...

"What You Need to Know About Hypothyroidism Extract Medications"

endocrineweb.com/conditions... (the below is the one study referenced in the article).

"Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: a randomized, double-blind, crossover study."

ncbi.nlm.nih.gov/pubmed/235...

I hope this helps and keep us updated.

[GKeith]

Educate the two doctors who said they only test TSH levels. Take some information with you when you ask them so you can hand it to them or just say the pituitary gland, or hypophysis, is an endocrine gland about the size of a pea and weighing 0.5 grams (0.018 oz) in humans. In vertebrate anatomy, it's a protrusion off the bottom of the hypothalamus at the base of the brain and is not a thyroid hormone.

And if he wants to "bar you" from his practice it really should be hard to replace him with a doctor that not only understands the difference between a brain and a thyroid but onw who actually has a brain and uses it. Peace be with you

[Mia09]

I've tried that thanks. I'm going to try another female Dr when I go back after 6 weeks as I'll need another blood test by then. A Dr did say to me once when I showed him some info from the internet that their heart sinks when patients go looking for answers - "there is no Dr Google". It is frustrating! I don't know if its ignorance or laziness on their part which makes them have this "I know better attitude". I will definitely state my case next time I go. Oh yes, and once I was told that "you and I will fall out" (if I didn't accept what they are saying!)

[SlowDragon Administrator]

Unless you are extremely petite 75mcg is a very small dose

Very important to test vitamin levels regularly especially if you have hashimoto’s

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

Ask GP to test vitamin levels.

Low vitamin D is linked to poor sleep

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)

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more effective taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

healthunlocked.com/thyroidu...

highly likely you will need to get full testing privately

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

Come back with new post once you get results