Any UK specialists who can support complex thyroid issues? Possible Wilsons low temperature syndrome?

[Replenished]

Hi all,

I've been struggling with hypothyroid like symptoms for about 5 years, despite "normal" in range blood results. I've been diagnosed with M.E./Chronic fatigue syndrome as nobody is really sure as to what is causing my symptoms. I have tried taking thyroid medication briefly at time in the past couple of years. I typically find I don't really notice anything from T4. Fron T3 I get some subtle positive effects for the first few days and then i'm back to feeling awful. More recently my TSH has come back as 8.6 so it looks like I am becoming more genuinely hypothyroid over time.

Again, of my own accord, as NHS don't really want to do much in the way of thyroid treatment until I have two TSH bloods over 10. I've started taking Cynoplus (T4&T3), again I had some positive effects and slight reduction in symptoms for the first few days and then nothing. Even when increasing the dose i'm not feeling those initial positive effects anymore.

Also, I know there is conflicting ideas on if 'Wilsons temperature syndrome' is a genuine condition or not. But I certainly match almost all the symptoms and did so even before my TSH was raised. So am interested in trying the T3 protocol for that.

My question is, are there any UK based thyroid specialist who can support me. I'm at a point where i'm so worn out and confused and ordering thyroid meds online myself and experimenting is all becoming too much. I need some help. I know there's Dr Frey at Country health but it all seems a bit back on forth with ongoing forking out of more money which I don't have to get anywhere. I realise I will have to pay whoever it is that can look at this for me but i'm wondering what my options are and if anyone has any recommendations? I've given up on my GP and the NHS now as well so if there's anyone that can help i'd be extremely grateful.

[SlowDragon Administrator]

If you have two blood tests with TSH over 5, and symptoms….then you should be prescribed levothyroxine

especially if you also have high thyroid antibodies

Extremely important to regularly retest vitamin D, folate, ferritin and B12

Always test thyroid levels early morning, ideally before 9am…..and (if on ) levothyroxine, last dose levothyroxine 24 hours before test

When were vitamin levels last tested

What vitamin supplements are you currently taking

Please add most recent thyroid results and ranges

Have you had thyroid antibodies tested ?

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

You absolutely can not rush thyroid hormones

Standard starter dose of levothyroxine is 50mcg

You need to wait minimum 6-8 weeks before retesting

Retest early morning and last dose levothyroxine 24 hours before test

Then dose is increased slowly upwards in 25mcg steps……retesting 6-8 weeks after each dose change

Nether levothyroxine or T3 or NDT will work if vitamins are not at GOOD levels

Add any recent results and ranges….plus info on what taking and how long on this dose

[Lalatoot]

Replenished, in some countries a TSH over 3 is considered hypothyroid and in need of treatment.Thyroid hormones T4 or T3 taken orally work as you describe - you take a given dose and you feel fine for a few days, weeks and then you feel bad again. That is what happens until you slowly and gradually work your way to your optimal dose . Some folks are lucky and find there optimal dose on levo only after several increases; others find they need a combo of T4 and T3 hormones and optimising the doses of levo and lio can take years.

It is not a quick fix like taking an aspirin for a headache. It is trial and error even if you find a doctor to guide you. If you post any blood results on here you will get replies from folks who have had similar problems and are will to help.