Help please with suggestions of what tests to ask for

[Noelnoel]

After about eight days of taking no metavive, adrenavive or any other supplements I tested as follows:

Ft3 4.6pmol/L (3.5 - 6.5)

TSH < 0.03 ((0.35 - 5.5)

Ft4 13.1 pmol/L (10.5 - 21.0)

Ferritin 79.0 ug/L (10.0 - 291.0)

Folate 17.44 ug/L (> 5.38)

Vitamin B12 482.0 ng/L (211.0 - 911.0)

Vit D 114 neologism/L (30.0 -50.0)

I was told after posting on here that I hadn't let enough time elapse before testing but obviously it went through the system because before I'd had time to arrange re-testing with a suitable gap without any supplements, I got a call from my endo's secretary suggesting I make a phone appt to speak with endo to discuss results - bearing in mind that I been discharged as being euthyroid and also bearing in mind that previously to being "euthyroid" my blood levels swung all over the place

Anyway, this was arranged for about 10 days ago and during the call she advised that I stop all supplements, including metavive and adrenavive for at least 4 weeks, after which time I'm to have a repeat blood test. This will take place on 18th August. So,far, so good ..,

Today I received the blood test form to take to the clinic and endo has asked that I test:

Cortisol (random)

TSH

Ft4

Thyroid peroxidase antibodies (I have a diagnosis of Hashi's)

What I'd like to know please is: shouldn't Ft3/T3 be tested too. The whole point is to get a base-line from which to work with going forward. My blood tests are erratic but mostly within normal range albeit only ever, just about normal, whilst I'm on the supplements listed above and what I wanted to establish is what my hormones actually do when left to their own devices. Good plan wouldn't you think but without the full picture what's the point?

So, can you advise - when I speak to gp in the next day or two - what other tests should be added to the form before speaking again to endo, post-tests on the 18th. I know it was the endo who requested these latest tests and the form merely came via the surgery but I feel that if I explain my rationale to my gp, she'll agree to add my suggestions. This does depend though on which one I get to speak with. One of them is excellent and listens, the rest are I'm afraid, like the rest and by that I mean that they don't like being questioned, even when it's clear they don't know that much about the condition or perhaps especially because they don't know much about the condition

Failing that, I'll have to speak with endo but as we all know, many of them think they think they know best and she may say I don't need any others, as she did during the phone call 10 days ago when I questioned the point of a random cortisol test

Would love your input please. I don't expect comments on all the other stuff in my post, suggestions for which tests I should have will suffice

Thanks

Edited version. Apologies if you've already read the first one laden with sloppiness

[SeasideSusie Remembering]

Noelnoel

Today I received the blood test form to take to the clinic and endo has asked that I test:

Cortisol (random)

TSH

Ft4

Thyroid peroxidase antibodies (I have a diagnosis of Hashi's)

What I'd like to know please is: shouldn't Ft3/T3 be tested too.

Yes, FT3 (but not Total T3) should be tested too.

No point in testing TPO antibodies, you already know you have Hashi's, and because antibodies fluctuate even if they're below range it's not going to make any difference, you'll still have Hashi's.

Not sure of the point of a random cortisol test.

The other tests that are important for us Hypos are

Vit D

B12

Folate

Ferritin

and those have already been covered.

[Noelnoel in reply to SeasideSusie]

That's a very good point about re-taking TPO, we all know that I'll always have Hashi's, why doesn't she?!! Amazing

Thank you for the rest

[Noelnoel in reply to Noelnoel]

Oops! Also forgot to ask why I need Ft3 too. If I get a tricky gp, I'll need to be able to stand my ground. Yes, I understand it helps give the full,picture but I need to understand why in questioning endo's wisdom

[SeasideSusie Remembering in reply to Noelnoel]

Noelnoel

For some reason, doctors don't seem to understand that T3 is the active hormone that every cell in our bodies need (T4 being a storage hormone or pro hormone which converts to T3), therefore the Free T3 test is the most important one, it measurs the active thyroid hormone that's available for our cells to use. Remind her that TSH is not a thyroid hormone, it's a signal from the pituitary gland to the thyroid, useful for diagnosis but not that useful once on thyroid hormone replacement.

I expect the endo is a diabetes specialist, most of them are and really don't understand much about the thyroid.

[SlowDragon Administrator]

Any endocrinologist who wants a hypothyroid patient to stop all replacement thyroid hormones for 4-6 weeks must be cruel and have a poor understanding of what that will do to your body

Obviously you need TSH, Ft4 and Ft3 tested ....suggest you book a private test

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water

Stop any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results

[Noelnoel in reply to SlowDragon]

You're so right about the effect on. one's body. Stupidly, I stopped everything on the day of my conversation with her and the next day and night were awful. I re-started everything after that and slowly weaned myself off all them. That wasn't without a cost either but it was manageable. I'm now metavive and adrenavive-free but will continue with some of the other supplements for the next week

I'm a bit scared and don't have confidence in my endo at all but with the help of this forum I'll get the guidance I need

Can you comment on why exactly I should request Ft3 please? I know I need to but I'm not entirely clear why. I can't exactly say to gp I want it done because the forum said so. I know it's important and I know that you know what you're you're talking about but I don't really. I've picked up a real education on here but much of it I still don't understand and a lot of what I "know" has been learnt parrot-fashion, it's not a multi-faceted understanding that I have but it's a start

SeasideSusie shared with me a link on B12 deficiency and also another one on the iron value of certain foods; both brilliant and informative and easy to understand. I perhaps would never have found such detailed, but understandable information without this site

[SlowDragon Administrator in reply to Noelnoel]

Even if you can get GP to request FT3 test on lab form, the lab will most likely refuse to test unless TSH is extremely low and Ft4 very high

NHS generally refuses to test Ft3

Ft3 is the active form of thyroid hormones. All levothyroxine is Ft4 and must be converted into Ft3 before it can be used

Many people are poor converters of Ft4 to Ft3

On no thyroid hormones, you are likely to have high TSH, low Ft4 and sometimes low Ft3....though when TSH is high conversion improves in an attempt by body to maintain thyroid levels

One of big problems with taking replacement thyroid hormones, especially just levothyroxine....is high Ft4 lowers TSH and with low TSH ....conversion of Ft4 to Ft3 gets worse

So it’s important to test Ft3 when on levothyroxine to see how well converting

When taking T3, NDT or Metavive obviously you need to test both Ft4 and Ft3

[Noelnoel in reply to SlowDragon]

Does that translate to: no need to test Tf3 whilst abstaining from metavive?

[SlowDragon Administrator in reply to Noelnoel]

Personally I would want to know and test privately

It’s likely to be low.....but how low?

[Noelnoel in reply to SlowDragon]

Thank you SlowDragon. Any particular reason for wanting to do it privately other than doctor won’t agree to an NHS one?

[SlowDragon Administrator in reply to Noelnoel]

NHS usually won’t test Ft3 unless TSH is below range

And important to test vitamin levels

[Noelnoel in reply to SlowDragon]

Well as you can see from results above, mine is very much below range and even then, the consultant no less, has asked for;

Random cortisol

TSH

Tf4

No request for Tf3 at all. From the little I know, the mind boggles

[SlowDragon Administrator in reply to Noelnoel]

After 4-6 weeks without any replacement thyroid hormones Ft4 and Ft3 likely extremely low...and vitamin levels dropping rapidly

[Noelnoel in reply to SlowDragon]

Well I'm continuing my supplements until about 10 days from the test for just thyroid hormones. After all the work it's taken to get them where they are, the last thing I want is for them to start falling. I appreciate that my nutrient levels will skew my thyroid results in favour of being higher in the range than they would be if I were deficient in B12, folate, ferritin etc but I don't think I'm prepared to put my body through that. In any case, it might illustrate how well a body can do if it's nutrients are at good levels

When I was initially diagnosed with Hashi's, my nutrient levels were poor, let's see what my thyroid hormones are doing when my nutrient levels are good

[SlowDragon Administrator in reply to Noelnoel]

Well when replacement thyroid hormones are withdrawn it’s likely vitamin levels will drop in spite of supplementing

[Noelnoel in reply to SlowDragon]

Yes, very likely I should think but hopefully by not too much