Interesting chat with head nurse (I think)

[diamondial]

I am stupid - no doubt but I have been struggling with vile colds on and off since September and that is my excuse. I had a blood test last week at 11.20am having had breakfast and coffee and also I had taken both T4 and T3 the night before at about midnight. Yes stupid I know although right for the T3. I've just got off the phone with a head nurse (can't remember her title) and she gave me the following results:

TSH 0.07 (0.05 last time) sorry, no range but she said within limits

FT4 19.3 (10 - 20)

FT3 5.3 (3.5 - 6.5)

I'm presently taking 75mcg of T4 and 6.25mcg of T3.

She knew my dose of T4 of course and I told her about the T3 I take. She suggested I up my dose of T4 to 100mcg! I was very surprised as I had felt sure, because of the unusual fact they were ringing me rather than me just going and getting a print out, that they were going to suggest I reduce to 50mcg. I'm quite confused at the moment as to what to actually do. I'd be very grateful for any thoughts.

[SeasideSusie Remembering]

diamondial

You don't need to increase your Levo, what on earth is she thinking? It would take you over range if those were accurate results (you are already 93% through range for FT4). It would also increase your FT3 depending on how much natural conversion you have.

However, your result is showing a false high FT4 because you took your Levo the night before so I would do nothing about changing your dose until you have results from a test when you have left the advised time gap of 24 hours.

TSH 0.07 (0.05 last time) sorry, no range but she said within limits

I doubt that very much. In the 20 odd years I've been keeping a record of my results from different labs - NHS and private - none have had a low limit of range less than 0.2 and considering that <0.1 is said to be suppressed then it's very unlikely that 0.07 is within range. This is the problem when results are given verbally, mistakes can happen, which is why we always advise getting a print out of results.

[diamondial in reply to SeasideSusie]

Many thanks for your reply SeasideSusie. That's pretty much what I thought. I did wonder about increasing my T3 as that was probably an accurate result although I had eaten but perhaps I ought to get a private test done before I do anything else. On the other hand maybe I should go and get a print out before I do anything at all!

[tattybogle in reply to SeasideSusie]

i agree, it seems unlikely (nowadays) that 0.07 is 'in range'.

However just for information :

my NHS lab (Lancaster ) did use a range of [0.02 -6] from 2005 to 2014 and then [0.05 -6] in 2015.

Followed by [0.34 -5.6] and then [0.57 -3.6] currently.

So it is theoretically possible that 0.07 could be 'in range' if they haven't upgraded their equipment.

But that does not explain the illogical instruction to increase Levo dose .... if the results actually are as quoted, it begs the question " is there a misunderstanding somewhere ? "

[diamondial in reply to tattybogle]

Yes I was so surprised I just said oh and asked her to repeat the T4 and T3 as I thought I'd misheard them! 😁

[tattybogle in reply to tattybogle]

definitely get to see it in print... i once had a GP look at his screen and tell me to my face that a result was ' 46' when i later got access to my records i could only find a "0.046"

[diamondial in reply to tattybogle]

Haha! Yes I will. I had actually planned to go and get it yesterday so I could be fore-armed when I expected them to reduce my medication but didn't really feel up to it with this damn never-ending cold.

[tattybogle in reply to diamondial]

Mind you .. might be a good idea to keep a note of this nurses name... ( in case you ever really do want your Levo dose increased.. LOL .... it would be really handy to know someone so unbelievably willing to agree to it despite low TSH and high fT4 )

[diamondial in reply to tattybogle]

Hahaha! Yes absolutely! 😂

[SlowDragon Administrator]

Suggest you

1) get printed copies of actual results and ranges

2) get TSH, Ft4 and Ft3 tested via Monitor My Health

Or if not tested vitamin D, folate, ferritin and B12 within last 6 months get Thyroid and vitamin testing done via Medichecks or Blue horizon

What vitamin supplements are you currently taking

[diamondial in reply to SlowDragon]

I'm currently taking:

Vitamin D3 (1000 iu 25ug) and K2 (90ug) (it doesn't say 'u' it's a sort of upside down, back to front 'h'.

Magnesium 375mg as Hydroxide, Oxide, Citrate and Carbonate)

Thanks for the suggestions which I'll get on to.

[SlowDragon Administrator in reply to diamondial]

Unlikely high enough dose vitamin D

Test twice year when supplementing vitamin D

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7 (One spray = 1000iu )

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

[diamondial in reply to SlowDragon]

Oh really? It will be interesting to see my results. Last time (ages ago when I wasn't supplementing) my Vit D level was, trying to remember... Insufficient I think it was. Not the very lowest level.

[SlowDragon Administrator in reply to diamondial]

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

[diamondial in reply to SlowDragon]

I've found my last result when I wasn't supplementing and it was 30.9 nmol (30.1-50 insufficiency).

[SlowDragon Administrator in reply to diamondial]

So GP should have prescribed 1600iu daily for 6 months

Then retested levels

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

with thyroid disease we frequently need higher doses than average

Trial and error what dose each person needs

Often higher dose in winter

2000-4000iu as maintenance dose quite common and higher than that if looking at increasing levels up from low/insufficient

Personally I need 4000-5000iu daily as maintenance dose (with Hashimoto’s and gluten intolerance)

[diamondial in reply to SlowDragon]

The GP never saw the result! I had it done privately.

[milkwoman]

Is it possible the nurse recommended the slight increase of Levo because of the seasonal change to winter? I was a patient of Dr. Blanchard and he found that many patients benefited from a slight increase in Levo during the winter months. I do this every year. Come late spring/early summer, I do a slight reduction.

In any event, if it were me, I’d accept the script for more Levo even if I didn’t plan on increasing so that I’d have extra meds on hand. With Levo, you can figure out your weekly amount (currently 75 x 7 = 525mcg per week) and parse out the dosage based upon what mcg tablets you are given. Levo pills are usually easy to split. JMHO

[diamondial in reply to milkwoman]

I really don't know why she suggested it - I was too surprised to ask! I've no idea whether her recommendation will result in my prescription being automatically changed but I suspect it will remain the same at 75mcg. I'll update when I find out when I need a new prescription.

[diamondial in reply to milkwoman]

Actually I went online now to check and it's the old 75mcg I can automatically order as I had a feeling it would be. 😁

[SeasideSusie Remembering in reply to milkwoman]

Milkwoman

Is it possible the nurse recommended the slight increase of Levo because of the seasonal change to winter?

Doctors don't think like that in the UK, in 46 years of taking Levo no doctor has ever checked to see if there is any seasonal difference or even suggested there is that possibility. Personally I've never found any seasonal difference although some people say they notice it. Maybe it's actually down to Vit D levels as we can't naturally make Vit D in the winter so our levels would fall as we use up what we stored over the summer. I check Vit D twice a year, just before onset of winter and again at the start of spring.

[milkwoman in reply to SeasideSusie]

That’s too bad. I’ve personally benefited from seasonal change dosing. My vitamin D levels are monitored closely by my doctors to ensure I’m optimal. I take a liquid Vit D (with K) so it’s very easy to raise and lower my dose accordingly.

[diamondial]

Follow up: I never got my print out as other (some very horrible) things have got in the way of me going to the surgery. However a doctor rang me from the surgery and, unlike the nurse who had rung previously, wanted to reduce my thyroxine to 50mcg daily. I managed to persuade her to reduce it to 50mcg/75mcg on alternate days. Re-test in 3 months unless I feel negative effects before then when I should contact them.