Wish me luck!

[fuchsia-pink]

Hello, I'm new here, but have been following posts for a week or so and have learnt so much!

I've been hypo since 2004. My (new-ish) GP is very much a "numbers man" - so not happy when my TSH went too low - but also very risk averse, so referred me to a consultant at the local hospital, who put me on a mix of liothyronine and levothyronine. For the last couple of years I have been on 20 mcg of lio and 50mcg of levo, and feel fine.

My last blood tests showed free T3 - 9.6 (range 2.6 - 5.7) free T4 - 15.7 (range 9.0 - 19.0) and TSH <0.03 (range 0.35 - 4.94) - but bloods were taken about 6 hours after taking meds. For various reasons I haven't been happy with the local endo (very much a diabetes man) - so got a second opinion privately, from a real specialist, and who treats the patient not the numbers - who said that the FT3 was around the same as the previous reading 5 months earlier of 3.9 pre-meds so not a worry to him - but he very much prefers patients only to be on levo and is encouraging me to go back to the previous levo-only dose at which I felt well and see what results this gives.

I am due to have blood tests again at the end of the month. Once again the GP can't do an early appointment, but if the GP agrees to refer me, I can have an early appointment at the local hospital. In all my time I have NEVER had tests for vitamin D, ferritin, folate, TPO or TG antibodies tested - but thanks to this forum have asked for them this time. I managed to get B12 tested last time, at the suggesiton of my excellent pharmacist - and this was 471 (range 180 - 640).

Please wish me luck in getting a full set of test results - and being allowed that early appointment! I'm a bit worried about coming off lio in case I can't get back on it later if the levo-only doesn't work. Any thoughts?

[shaws]

When taking thyroid hormones i.e. levothyroxine - a gap of 24 hours should be allowed between dose and blood test. If taking liothyronine (T3) the gap should be 12 hours.

It is recommended blood draw is at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and blood test and take afterwards (for lio - it would be a 12 hour gap).

[fuchsia-pink in reply to shaws]

Hi Shaws

I do try and get an early appointment - but mostly without success. For the end December testing, the earliest the GP practice could give me was 11.45 am (which is why I'm trying to go to the local hospital at 7.30 am instead).

The last bloods were done at the endo's hospital at 2.30 pm as part of the appointment (he never pre-arranges blood testing, so I usually take the initiative and get his secretary to send me the forms - but didn't know he was planning a blood test this time, as the previous results were only 5 months old and assumed we were discussing these).

But thank you - I'll juggle the doses the day before if I have to make do with 11.45!

[shaws in reply to fuchsia-pink]

Isn't it ridiculous that we have to resort to 'solutions' in order not to have dose reduced.

[m7-cola in reply to shaws]

Yes!

[fuchsia-pink]

Hi Scrumbler

I'm not sure the private consultant goes in for NDT either - and he's quite expensive to see, so my preference is to stay within the NHS if I can ... but tbh I don't really know anything about NDT except what I can glean from here!

[shaws in reply to fuchsia-pink]

NDT was the very first thyroid hormone replacement - in 1892.

Before that we just died an awful death.

From 1892 onwards people recovered their health with no blood tests and gradual increases of NDT, made from pigs' thyroid glands (dessicated I think).

The following doctor would never prescribe levothyroxine only NDT or T3 for thyroid hormone resistant patients. He stated that levo became the No.1 replacement due to 'payments' to doctors/endocrinologist to prescribe it.

naturalthyroidsolutions.com...

[shaws]

I am not medically qualified but I was always unwell on levothyroxine. Awful I think the word should be. T4 is an inactive hormone. It has to convert to T3.

Blood tests were introduced for levothyroxine alone i.e. T4 if we take or add other thyroid hormones (i.e. NDT or T3, or T3/T4 our results will differ) and as 'modern day' endos have no knowledge they don't understand them at all and usually patients struggle. Mind you millions seem to do fine on levo alone but some don't. There should always be exceptions - i.e some people cannot take paracetamol for example.

I am also not medically qualified.

The following doctor/scientist only took one blood test for the patient's initial diagnosis and thereafter it was all about small increases of NDT every 2 weeks always taking account of symptoms being relieved and so on until they were resolved

We also had to eat well and that vitamins/minerals were optimal.

hormonerestoration.com/

naturalthyroidsolutions.com...

[birkie in reply to shaws]

Hi shaw

I noticed you said you were not well on levo I'm wondering if this is my problem been on levo since May this year after total TT starter dose 125mg steady reduced by surgeon and gp to 25mg because my TSH was suppressed.. My last results were T3.. 2.3..pmo/L...ranges..3.10-6.80pmo/L

T4..10.9pmo/L..ranges..11.00-22.00pmo/L

TSH..3.53..no ranges on results.. Was hyper at diagnosis in sep 2018 diagnosed with graves thiyroid was toxic.. I've also got colitis and the levo has been giving me colitis flare ups also really bad headaches given its to be taken on an empty stomach does my no favours.. I've seen no inprovement in my health this last 7 months.. been really unwell and taken to my bed.. Again!!! Still waiting on endo appointment and gp app as I can't see him until he reads my CT scan results... Great!!! 😠😠😠

[Cup-cake7 in reply to shaws]

I feel that although many feel ‘better than they did’ on levo they may well be even more well with Lio but not taking it for whatever reason

[shaws]

Isn't it awful that False Statements were made about NDT by 'those who should know better' i.e. the BTA. Dr Lowe wrote a reminder each year for three years before his untimely death but they never did respond.

Considering it was used since 1892 without blood tests andy considering patients symptoms only and hypo patients didn't die an awful death.

Dr Lowe wrote yearly for three years disputing what they stated but they never did respond before he died through an accident.

google.com/search?client=fi....

[SlowDragon Administrator]

If you have Hashimoto's and/or low vitamin levels then this suggests you have poor gut function and Liothyronine likely necessary

DIO2 gene test also useful. If you test positive for DIO2 gene variation again this indicates you likely need addition of T3

First step is to get FULL Thyroid and vitamin testing.....privately is most reliable option....you can use private drop inclinic early morning

NHS refuses to test TG antibodies if TPO antibodies are negative. They rarely test FT3 either

If you can get vitamins test

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[thyr01d]

Best of luck fuchsia-pink