Needed: A good doctor

[maxart]

Hi - I’ve recently had to re-engage with the NHS after a long time of self-management due to severe hypertension (almost certainly stress related). I made the decision to temporary stop my T3 treatment (not prescribed) but it is now clear that the hypertension is a) not related and b) not been going on that long.

I’ve had T3-clear NHS thyroid blood tests that come out as

TSH 1.92 (0.35 - 5.5)

FT4 12.8 (10 - 19.8)

I’m currently waiting for my medichecks results that obviously include T3.

I’ve mentioned to the GP that my historical results show low in range TSH and FT4 and below range T3. This elicits literally no response, never mind a conversation. It’s almost as if it hasn’t even registered that I’ve said anything.

I am now a month off T3 and am daily more symptomatic. Mainly tiredness and brain fog and aches at this stage. I will resume T3, but would like to be doing so in consultation with a sympathetic doctor, if possible.

If anyone has any recommendations, could you DM me? I am Cambridge based, but can travel.

Thank you x

[SlowDragon Ambassador]

How much Levothyroxine are you currently taking?

Did you increase dose when stopped T3?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you did this test?

Your FT4 is too low for someone on just Levothyroxine

TSH likely too high

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

Is Medichecks test including vitamin D, folate, B12 and ferritin?

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels, especially if T3 has been stopped

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

[maxart in reply to SlowDragon]

Hi -I’m not on any Levothyroxine as I can’t get a diagnosis of hypo due to TSH and T4 always being ‘in range’, although very low. Even a conversation about hypo is a non-starter due to the TSH/T4 results. To be clear, these results are with no replacement hormones in my system.

I had a medichecks thyroid ultravit not that long ago when still on T3. I’m supplementing, so the other things are all ok.

[SlowDragon Ambassador in reply to maxart]

Sorry misunderstood......very unlikely to get a diagnosis with low TSH

Have you ever had ultrasound scan of your thyroid?

What about TPO and TG thyroid antibodies results?

[maxart in reply to SlowDragon]

No worries! Appreciate the engagement.

No ultrasound ever:

Thyroglobulin antibodies < 10 (0 - 115)

Thyroid Peroxidase antibodies < 9 (0 - 34)

CRP HS 8.56 (0-5)

[SlowDragon Ambassador in reply to maxart]

Were you only taking T3?

Or Levo as well?

[maxart in reply to SlowDragon]

Only T3 and to be honest, I was feeling really good for several years. Just got freaked by the hypertension which I’m pretty certain is unrelated.

To give you an idea, 2 years into T3, I was bouncy, resilient and happy with T3 testing nicely at top of range...

[SlowDragon Ambassador in reply to maxart]

Looking at previous posts...and very high FT3 result you were either taking too much or it was a Hashimoto's flare

[maxart in reply to SlowDragon]

Yeah.. the high T3 was a blip quite a while ago so I reduced dose and everything settled down...

[Nanaedake]

Your doctor is probably being quite kind not commenting on your thyroid or your use of T3. You probably wouldn't want to hear what he had to say. He/she is in an awkward position since you have self medicated. If TSH is low, in other words below the lab range rather than above the lab range, then taking T3 would be the wrong thing to do. Since I have not seen your lab results I can't say if this is the case. Are you muddled up about high and low lab readings?

I would advise you clarify your lab results and ensure you really need T3 as you do not want to take it if you don't need it. If you indeed have a thyroid condition then you need the correct treatment for it based on biochemical results, blood tests or ultrasound.

[maxart in reply to Nanaedake]

Thanks. This has being going on for some time. The issue is mildly elevated TSH and low in range T4 but below range T3. I have never been able to get a doctor to a) take my hypo symptoms seriously and b) agree to even look at my T3 (which I have tested privately). It appears to be a conversion issue and I have read widely on the subject.

I felt most well when on T3 and testing at the top of range. I am asking for recommendations of a doctor who understands thyroid issues and will engage regarding T3 as I don’t want to put my NHS GP in a difficult position.

[Angel_of_the_North in reply to maxart]

If you can get your Free T4 to drop below range you might get an diagnosis of central hypo from an endo - GP won't have heard of it.

[maxart in reply to Angel_of_the_North]

Hmmm... good point!

[Nanaedake]

That makes more sense now that you say your TSH is elevated. I'm not in your area so can't recommend anyone. If when not taking T3 your TSH is elevated above the lab range then you could ask your GP to look into it or monitor it. Lots of things besides a thyroid condition can cause low FT3 and elevated TSH. As you have no thyroid antibodies it could be caused by some other inflammation or deficiency. Your GP could also do basic checks to exclude any obvious causes. Your CRP is elevated so that could be one cause. Perhaps you need to find out what is causing the low level inflammation.

Symptoms that people attribute to thyroid disease can be the same symptoms as other conditions so you need to collect and analyse the evidence to explore what is causing the symptoms. You need your GPs help for that.

[maxart in reply to Nanaedake]

Thank you.. sadly they are not interested in having the conversation and don’t seem to recognise an under-range T3 result. Hey ho!

[Nanaedake]

Perhaps take the angle of discussing the raised CRP and inflammation? Have you had vitamin levels tested because you could ask for that too. Deficiencies might affect conversion so instead of discussing or mentioning FT3 you could discuss your health in other terms that are within the NHS remit. For example, tiredness might be low ferritin or iron levels. Ask for all possible avenues to be explored that the NHS allows. At the end of the day your aim is to be symptom free so if going about it a different way that is more acceptable to the NHS then what does it matter? You might find that low FT3 is not due to a thyroid condition but some other condition but you won't know without the relevant tests.

You can always go to a private Endo too but the NHS approach might save you a lot of money.

[HLAB35]

If you don't have Hashi's you may, according to some functional doctors like Dr Dean (see below) or Dr Myhill, be better off trying NDT which you can take in lower doses without disrupting your own thyroid (ask the forum of their own experiences with this); you may need adrenal support as well as thyroid hormone is less well tolerated by those impaired with very poor adrenal function.*

drmyhill.co.uk/wiki/Thyroid...

drmyhill.co.uk/wiki/Hypothy...

drmyhill.co.uk/wiki/Conduct...

One thing I have found to be good for lowering my CRP is Magnesium, but it is best taken in combination with other minerals and b vitamins and vitamin D. Dr Carolyn Dean writes regular blogs on Magnesium and there is plenty in her books as well.

*Your less than dramatic TSH in response to low thyroid hormone is a clue that you may have a Pituitary issue, which can easily effect your adrenals as well as thyroid.

[maxart in reply to HLAB35]

Thank you very much - very helpful!

[maxart]

It’s a mixed bag for sure! My GP has heard of central, but when I asked about FT3, said that they ‘don’t test that unless T4 and TSH are abnormal’. When I suggested that testing T3 is a good idea precisely when the other things appear ‘normal’ but the patient is still symptomatic, the eyes glazed over. Sigh.