T3 or not T3 and dealing with GP

[janey1234]

Hello again.

In my last post about my latest results greygoose pointed out that my TSH / FT4 / FT3 results suggested that I wasn't converting very well now and that I needed to introduce T3.

I was going to go along the self-treating route but I'll be honest I can't stand any potential confrontation with my GP explaining my results further down the line, so have been burying my head in the sand of late hoping this whole damn thing would just go away (which I know it won't)

Now, in the past 24hrs I have been texted and rung out of the blue by my surgery telling me that I must have a medication review and blood tests, with their 'Clinical Pharmacist' in the next 2 weeks or they will stop my medication, which is only Levo'.

Previously I have sent them all copies of my private blood test results each time (because they refuse to test FT3) with a letter explaining that I have been working alongside the support network at TUK (reminding them of the link from NHS Choices) and that my results, despite the suppressed TSH, have been moving in the right direction (pointing out Dr Toft's BMA article too). I have explained that I have a fresh batch of private blood test results which I will give them, to save the NHS money testing again but they are still insisting on testing my blood pressure for some reason and talking to me about my prescription.

A reminder of my past 3 results...

May 2017 (Blue Horizon)

TSH 0.23 (0.27 - 4.2)

FT4 16.55 (12 - 22)

FT3 4.29 (3.1 - 6.8)

Total T4 106.7 (64.5 - 142)

December 2017 (Medichecks)

TSH 0.044 (0.27 - 4.2)

FT4 16.9 (12 - 22)

FT3 4.6 (3.1 - 6.8)

Total T4 101 (59 - 154)

April 2018 (Medichecks)

TSH 0.048 (0.27 - 4.2)

FT4 19.4 (12 - 22)

FT3 4.19 (3.1 - 6.8)

Total T4 106 (59 - 154)

TPO over the past 2.5yrs has gone down from 1115 - 199. I have been GF for 18 months, get selenium from Brazil nuts (labelled with selenium). Vit D, Ferritin, CRP and B12 are perfect and I have reintroduced Thorne Basic B Complex to address current low Folate.

My questions are...

1. I take my 125mg Levo at bedtime & do my bloodtests at about 7.30am, plus stop taking my B Complex a week before. Because there is a longer gap than 24hrs between last Levo & blood test, could this have this reflected in my FT3 result? Eg. Bloodtest Tuesday morning means last Levo is taken Sunday night.

2. If you still think I am not converting well and need T3 too, how do you all deal with self treating and informing / not informing your GP, bearing in mind annual reviews?

3. Again, if you think I do need T3, what can they do if I just give them my latest results and tell them that I'm going to source my own T3 based on the advice given here? I hate secrets, hate confrontation...but I hate the GPs at my practise even more.

I have been referred in the past to an Endo when all this started, but he dismissed me as my TSH was 0.12 (0.35 - 5.5) & FT4 17.2 (10 - 19.8). Nothing else mattered, so referring me for T3 seems like a no-go.

Just want to be alone to get on with it with TUK.

Thanks everyone xx

[Hay2016]

My results look like yours. My endo said they’re fine, see gp about symptoms as can’t be thyroid. I went and very calmly suggested that as the nhs won’t fund t3 despite a thyroid secreting t3 I wanted to try it as levels at 40% of range. I said I wanted to get from a pharmacist and Germany had a recommended one which was where he came in as I needed a script for 100 liothyronin at 20mcg please. He said it’s scandalous nhs been held to ransom by drug companies- here you go will this do. Script on the white bit of nhs prescription that you usually tear off. Told him I’d monitor it via private tests.

Job done. Endo who I see in Nov hasn’t requested thyroid bloods this time so either I’ll still be on them and I’ll tell the silly cow or it won’t have done anything and this is my new life!!!

Good luck. He did say some gps wouldn’t do a private script it depended on gp and I know some on here have been refused.

[janey1234 in reply to Hay2016]

It's so complicated. I've had so much help on this amazing forum over the past 2.5 years here. I've seen 3 GPs and they've either lied or been ignorant and the endo liked my TSH & FT4 so in his eyes, job done.

[Judithdalston]

Actually of all the healthcare professionals I have spoken to re hypothyroidism ( GPs, endocrinologist, nurse, healthcare assistant) it was my pharmacist ( not from the surgery but an independent local pharmacy) that knew more about the disease, including using the TSH, FT3 and FT4 ( and Reverse T3)results to fine tune medication . It was him who suggested me using T3 before I suggested it, he also understood why some of us are more sensitive to changing brands of Levothyroxin. But your surgery pharmacist might have a different agenda - to save it money! I have taken my thyroid meds at night and left over 24 hours untreated before blood tests, without any obvious problems( T4 does have a long half life). Only the last bloods result suggests you may have a poor T4 to T3 conversion rate ( ratio over 4:1). Were all 3 bloods on the same medication/dose? I have gone it alone and not told my GP yet I am taking T3, added to a lessened levothyroxin dose. He was reluctant to increase my T4 previous even though my TSH had raised over the previous 3 years from 0.75 to 3.23, so told him I'd already started a 25 mcg increase 2 weeks earlier and I'd arrange a retest in 4 weeks on, which came back as 1.27 so still within his range. Then I added more T4, got Medichecks test, fine tuned VitD, ferritin and folate with supplements ( b12 was too high), and added T3 from abroad very slowly: 1/8th of 25 mcg Tiromel twice daily with Levothyroxin down to 100 mcg. I don't believe my Gp would have had the same reaction as Hay2016's with private script. I am still adjusting the thyroid meds slightly before another private blood test, but feel much better! When I have proof of blood tests, improved health I will tell the surgery, perhaps going to see my pharmacist first for his advice!

[janey1234 in reply to Judithdalston]

Thank you for your reply. All tests were done on the same Levo dose, same timings, same withdrawal of B Complex for a week. X

[SeasideSusie Remembering]

janey

get selenium from Brazil nuts (labelled with selenium).

Does the label say

1) "a source of selenium"

or does it say

2) "grown in selenium rich soil"

If the first, there's no guarantee that there is any selenium in the nuts.

If the second there will be some selenium content but unless you know the exact region where the nuts were grown there could be a very low level or a good level. Eastern Amazon and Central Brazil are where the highest selenium content can be found.

1. I take my 125mg Levo at bedtime & do my bloodtests at about 7.30am, plus stop taking my B Complex a week before. Because there is a longer gap than 24hrs between last Levo & blood test, could this have this reflected in my FT3 result? Eg. Bloodtest Tuesday morning means last Levo is taken Sunday night.

So let's say you take your Levo at 11pm. Last Levo Sunday 11pm, blood test Tuesday 7.30am, so 32.5 hours between Levo and blood draw. This would possibly give a lower FT4 than normally circulating but may not affect FT3. Levo peaks in the blood 2-6 hours after taking it. So to avoid a false high FT4 we say to leave off Levo no more than 24 hours but if you took your Levo on Monday night at 11pm and blood drawn at 7.30am Tuesday, that would be 8.5 hours and well past the time Levo would peak. When taking Levo at bedtime, we say delay the dose the night before until after the blood draw, then take your next dose as usual.

2. If you still think I am not converting well and need T3 too, how do you all deal with self treating and informing / not informing your GP, bearing in mind annual reviews?

I don't tell my GP that I take T3 in addition to Levo, some people do. Some GPs are supportive, mine certainly wouldn't be. I just make sure that I do my own private tests so that I know where my levels are and I keep them within range. When I have tests done at my surgery I "manage" my doses of Levo and T3 so that the results tend to come back somewhere between mid range and 3/4 of the way through range. This way, even though TSH is suppressed (it was even when on Levo only) and the GP freaks out, I come back with "But as you can see my actual thyroid hormones are only mid-range so I can't be overmedicated".

3. Again, if you think I do need T3, what can they do if I just give them my latest results and tell them that I'm going to source my own T3 based on the advice given here? I hate secrets, hate confrontation...but I hate the GPs at my practise even more.

Can't help there, I don't show them my private results.

[janey1234 in reply to SeasideSusie]

Thank you SeasideSusie Grateful as always for your input ☺

Re Brazil nuts, the pack says under Vitamins / Minerals ...100g contains 1917ug (3485% NRV) Selenium and 50g contains 958.5ug (1743% NRV). They are from Tesco. They also have Vitamin E values too on the pack.

1. So what I did seems ok re FT3...if anything my FT4 is better than ever despite the longer gap.

2. I have so far been able to justify my suppressed TSH with my GP by pointing out my other improving levels plus quoting Dr Toft's BMA articles. So far they've just said carry on then.

3. Maybe that's my way forward, just go for my annual NHS blood test (minus the FT3), 'smile and wave' as my husband would say & test privately beforehand.

[Judithdalston in reply to SeasideSusie]

Never got an answer from Sainsbury's nor Lidl after nearly 2 weeks, about how much selenium was actually in any of their Brazil nuts; Lidl don't mention anything about source of nuts nor mention selenium. All Sainsbury's were from Bolivia which are supposed to have Brazil nuts with the lowest selenium of all growing countries ( a tiny amount compared to Eastern Amazon): yet their packets claimed 525 ug/ 30 g for their cheaper, nuts yet their SO organic nuts, at over twice the price, were only 75ug/30 g. Huge difference, thought it was worth Sainsbury's while answering as I pointed out that too much selenium was bad for you!

[janey1234 in reply to Judithdalston]

Just looked at Tesco packet again and they are from Bolivia. Their organic ones don't mention selenium at all. I have 2 or 3 per day. The pack says it contains 3 servings. I reckon that'd be about 15 nuts!!!

[janey1234 in reply to SeasideSusie]

....and do you think too I should add some T3 in, bearing these results in mind? X

[SeasideSusie Remembering in reply to janey1234]

Janey

That's difficult to say because you have Hashi's and it complicates things. Your first two sets of results show that your conversion is good with T4 :T3 ratios of 3.85 : 1and 3.67 : 1and good conversion takes place when the ratio is between 3:1 and 4:1

Because your FT4 is less than half way through range with those results, it showed a need for an increase in Levo which would increase FT4 and FT3, rather than the addition of T3.

Your third set of results tell a slightly different story with a ratio of 4.63 : 1 with a higher FT4 and slightly lower FT3 on the same dose of Levo and same conditions for testing. The reason for this could be down to your Hashi's.

So are you addressing the Hashi's - strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily?

Are your nutrient levels optimal?

Vit D - 100-150nmol

B12 - top of range

Folate - at least half way through range

Ferritin - at least 70

[janey1234 in reply to SeasideSusie]

Vit D 151 (thanks to your advice I got it up from 24)

Ferritin 116 (13 - 150)

Active B12 186 (25.1 - 165) no longer taking B12 sublinguals

Folate 8.98 (2.91 - 50). This was highlighted by Medichecks as needing improving so I now take my Thorne Basic B Complex. I have had in the past good folate levels, havdn't changed my diet in anyway, but it has dropped so have resumed my B Complex.

1. Do you think my lower Folate this time may have caused my drop in FT3 and therefore just a blip?

2. Strictly, 100% Gluten free and as mentioned above, hoping to have been getting my selenium from those brazil nuts. If you think I should supplement instead for a while to guarantee then I will.

3. Aaaaand....finally (sorry). If you think it was possibly a blip, and bearing in mind my already suppressed TSH, should I ask for an increase in Levo instead to try and raise my FT4 & FT3 higher instead for now (stating Dr Toft's paragraph as I have done before)?

Thank you xx

[SeasideSusie Remembering in reply to janey1234]

Janey

1) I can't say for certain but I doubt if just low Folate would cause the FT3 to drop.

2) Personally I think the only way to be sure about selenium is to use a good quality supplement.

3) I'm struggling with this one. Your most recent results do show that your conversion isn't good enough, but your FT4 is in a good place so doesn't necessarily show the need for an increase in Levo. However, with your previous two results your conversion was nigh on perfect but your free Ts were too low in range and indicated the need for an increase in Levo. I don't know if this is due to something with the Hashi's (I don't have it myself) if so would any of the other results be off??? Or is it that something isn't quite right at the moment for good conversion.

[janey1234 in reply to SeasideSusie]

Ugh! Trust me to be complicated.

As I have to go in for a follow up appointment in the next 2 weeks... maybe I should ask for an increase in Levo to 150 (currently on 125) based on the results 1 & 2 in order to raise both FT4 & FT3, take selenium supplements for 3months, test again privately and then see what my results are.

What do you think?

Nothing is straight forward with this ol' thyroid lark

[SeasideSusie Remembering in reply to janey1234]

Janey

Sounds like a plan. Just keep an eye on how you feel with the increase. If there's a Hashi's swing you may get symptoms of over medication.

[janey1234 in reply to SeasideSusie]

Will do. Thanks SeasideSusie

Have a great weekend x