Frustrated

[Michelle82]

I am frustrated with being told my thyroid levels are normal after bloods. I can barely function. After research I have discovered that taking T3 as well as my 100 mcg of Levothyroxine daily. I am awaiting bloods again after only having my thyroid function test done one month ago. I pretty much had to force my G.P to offer this. I spoke to her about T3/T4 and that I understood all levels should be tested and looked at. Any advice would be good.

[greygoose]

You didn't finish your sentence : After research I have discovered that taking T3 as well as my 100 mcg of Levothyroxine daily... Will? Might? What?

Taking T3 might help if you're a bad converter. But it could be that you just need an increase in your levo. 100 mcg isn't a very high dose. Most people need more than that. But, you do need both your FT4 and FT3 tested at the same time.

[Michelle82 in reply to greygoose]

Oh yes, I was trying to say that the more I read the more I am learning about different options and that I shouldn't just presume my G.P is always correct. Thanks for the advice. I need to make sure my FT4 and FT3 are tested. I have lost some of my faith in their opinions, especially after my conversation with the doctor the other day. She almost seemed irritated that I had increasing knowledge re this.

[greygoose in reply to Michelle82]

Oh, most of them hate informed patients! They're afraid you might find out just how ignorant she is. I lost faith in doctors, a long, long time ago!

But, it is a good idea to start with levo, because that's the cheapest, easiest to get - as long as your doctor is willing to prescribe enough to make you well! Which a lot of them are not!

The logical progression from there would be T4 (levo) + T3. But T3 is getting harder and harder to get prescribed, and harder and harder to buy on-line. So, failing that, you could try NDT - which is also difficult to get prescribed, but easier to find on-line. Doctors don't always like you buying your own, but it's there fault. If they did their job, you wouldn't need to. And, if all else fails, there's T3 only. But, we do tend to advise people on the easiest path, if at all possible, and that's levo.

[Michelle82 in reply to greygoose]

Yes, it's very stressful. Thanks to this group which I have only been on for one evening I am feeling more determined than ever. She mentioned sending me to an endocrinologist at Lancaster infirmary as a next step, "to put my mind at rest" I asked for my last readings but was dismissed and told not enough time. I will definitely need to make sure at my next blood tests that my T3 and mentioned vitamins are tested. I have a feeling when I see her three days later for a discussion re my bloods that all of the above inc antibodies and vitamins may not have been tested. I wonder if it is easier to just get a straight referral to endo at Lancaster Infirmary. ? 🤦‍♀️

[greygoose in reply to Michelle82]

Honestly, don't expect too much from an endo. The majority are diabetes specialists who think thyroid is a doddle! They don't know anymore than the average GP - although they think they do - and often know less. Personally, I wouldn't rush to see one.

The odds are your GP is just testing the TSH. Which doesn't tell her anything much, but she doesn't know that. The absolute best thing would be to do a private test and get the lot done all in one go :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

If you want details of private testing - without involving a doctor - you can find them on the Thyroid UK main page.

[Michelle82 in reply to greygoose]

Thanks again for your help. My options are growing.

I will update after bloods/appointment etc

Oh have ye faith!

😀

[greygoose in reply to Michelle82]

You're welcome.

[lumpymum in reply to greygoose]

I agree. After years of focussing in thyroid levels and trying t3, what has randomly helped (after being prepared by gp for ME diagnosis) was b12, which was normal but low, but also magnesium and vit d. I'm a new woman! Still keeping eye on tsh levels but look wider would be my advice and as with thyroid don't accept normal ask what's the numbers....

[SeasideSusie Remembering in reply to Michelle82]

Michelle82

"I asked for my last readings but was dismissed and told not enough time. "

You are legally entitled to your results (Data Protection Act) but don't bother asking the GP. Just go to reception and ask for a print out. As long as the results have been seen by the GP then there's no reason not to give them to you. If they refuse just remind them that itnisnyoir legal entitlement under the Data Protection Act and you're sure no-one at the surgery wants to break the law. You don't have to give a reason for wanting them, but if you feel you must then just say they're for your own records.

Even when a GP requests an FT3 test, it's the lab who decides whether it's done, and usually only when TSH and possibly FT4 are out of range.

A lot of us do home fingerprick tests with Blue Horizon or Medichecks. They both do a full thyroid panel, including antibodies, plus vitamins and minerals bundle.

[Angel_of_the_North in reply to Michelle82]

It is not legal to deny you your results - how long does it take to print off the sheet?

[Tr123 in reply to greygoose]

As someone in a fa ily full of doctors, I can assure you that it isn't the GP's who are ignorant but because NICE won't let them prescribe it as the drug companies put up the price from pennies to pounds per pill. GP's want to be helpful but often their hands are tied. It is essential to have a good rapport with your GP so if you find one is abrupt, go to another in the practice. Or to another practice. (And try to see it from their point of view also). Good luck

[greygoose in reply to Tr123]

You can't blame it all on NICE! How much do the doctors in your family know about thyroid? I live in France, and I can assure you that doctors here are just as ignorant as UK doctors, but they don't have NICE guidelines to hide behind.

[Tr123 in reply to greygoose]

Calm yourself. Doctor I see is very informed about thyroid and so are my son and husband. Nobody is hiding behind NICE

[greygoose in reply to Tr123]

Please, do not tell me to 'calm myself'. It is very rude, and unnecessary. I am 72 and perfectly calm, and have a vast experience of doctors, even if I didn't marry one. I do know what I'm talking about.

[SlowDragon Administrator]

Also essential to know your vitamin D, folate, ferritin and B12. These need to be at very good levels, not just somewhere in range.

When you have actual results and ranges come back with new post for advice on supplements

Also you need to know if you have high thyroid antibodies. Do you know if Thyroid antibodies have ever been tested? If high, this is diagnosis of autoimmune thyroid disease also known as Hashimoto's.

If you can't get full thyroid and vitamin testing from GP

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

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

[Michelle82 in reply to SlowDragon]

Thank you for the reply. I feel more confident in which direction I am trying to go in. Great advice re thyroid anti bodies. I do not believe this has been tested. I am certainly going to ask at my next appointment.

[SlowDragon Administrator in reply to Michelle82]

Approx 90% of hypothyroidism in UK is autoimmune thyroid disease also called Hashimoto's (uK medics never refer to it as Hashimoto's)

Ask for antibodies and vitamin tests

If GP questions why, you can say you had advice from NHS recommended thyroid support group.

[Michelle82 in reply to SlowDragon]

Thank you. When I go for my bloods on the 25th again can I state to the phlebotomist what is being tested. My G.P kind of rushed me out and I am unsure which extra ones were agreed.

[SlowDragon Administrator in reply to Michelle82]

You can try. Always worth asking.

Lab often doesn't do it even if GP asks

Which is why so many of us have to pay for private testing

[The_will_of_Jill in reply to Michelle82]

But you do have a right to ask for copies of results. I think it's the law 🤓🤘🏻👀

[Michelle82 in reply to The_will_of_Jill]

Thanks Jill. Information is power 🙅

[Anthea55 in reply to Michelle82]

The nurse can probably only test what the doctor has specified, so you can ask which ones are on the list.

I wouldn't think that you can get extra tests added. Thinking about it, it could play havoc with the GPs budget if patients were allowed to ask for extra tests which the GP hadn't agreed to.

[Michelle82 in reply to Anthea55]

Good idea, I can ask and then write down which ones. Thank you for info. 👍

[Michelle82]

Hello again. Just a quick question.... should I be taking my Levothyroxine separately from my propranolol which I take every morning? I always wait an hour before eating and take both normally together with water.