Help with T3 needed: After half a lifetime of il... - Thyroid UK

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Help with T3 needed

TimeForaRest profile image
TimeForaRest

After half a lifetime of il health resulting in not being able to work or function normally I began, reluctantly but out of desperation, treating myself with T3 two years ago. My illness, which fluctuated hugely had been diagnosed as, 'over doing it', ME or just that I was strange! Studying and then taking Mg made a big difference but I was still not well. Slowly increasing the dose of T3 to around 5ug per hour I have been much better and am working and no longer feeling frozen all the time. However my temperature as measured orally is still very low and recently I have felt as though I am slipping health wise. After reading Paul Robinson's book I though it might be time to look at my T3 dosage, but when I changed it slightly I felt ill within a few days. I would really appreciate help from medical professionals who are willing to look beyond Thyroid tests and treat a patient as an individual, taking into account symptoms. Does anyone have T3 / low temp treatment with a Dr here in the UK? Though Dr's here say that WIson's temp syndrome has no basis in fact I still feel that it describes what is happening to my system better than any GP or endocrinologist has ever done.

10 Replies

Lakesmagic,

Wilson's Temperature Syndrome is not medically recognised. Hypothyroidism is diagnosed by blood tests so I doubt you will find a NHS doctor to treat you according to low temperature and symptoms and most NHS doctors use Levothyroxine to treat hypothyroidism.

You may want to consider seeing Dr. Peatfield. He has resigned his GMC registration so can't prescribe but can guide you. Contact details in healthunlocked.com/thyroidu...

TimeForaRest profile image
TimeForaRest in reply to Clutter

Thank-you. I've read John Lowe's comments on Wilson which has been very interesting. I must admit that I dont really care if my temperature still measures as low as I am not feeling the cold anymore. I am determined to get the T3 dose right and am currently looking at Adrenal function based on Paul Robinson's CT3M. Sadly the T3 I have been purchasing on line for two years is no longer available and I am very confused trying to find another supplier - have only two weeks before my last pot runs out! I'm going to Canada in a couple of weeks and might be able to buy some there. There is a huge difference in price between the Pharma sites and the typical online sites (muscle building etc) that make one wary. After having got myself fairly well after lots of trial and error I am sad to think that a replacement Cytomel might not be of the same standard.

Clutter profile image
Clutter in reply to TimeForaRest

Lakesmagic,

You'll need a prescription to buy T3 in Canada.

TimeForaRest profile image
TimeForaRest in reply to Clutter

Oh - that's a blow

shaws profile image
shawsAdministrator

Sometimes our temp doesn't return to 'normal' if we've measured it before we became hypothyroid. Dr Lowe (deceased) who was an expert on T3 only prescribed his patients to take one daily dose. He himself took 150mcg in the middle of the night so nothing interfered with the uptake. He has stated that T3 has to saturate the receptor cells before it's work begins and the effect of one dose can last between one to three days.

I myself take one daily dose and I am well and symptom free.

I will give you a link which may be more helpful:

Go to the date February 4, 2008 but all questions/answers I'm sure you will find helpfu and

December 17, 1997

web.archive.org/web/2010103...

Dr L was also an Adviser to Thyroiuduk.org.uk before his accidental death.

TimeForaRest profile image
TimeForaRest in reply to shaws

Thank you for your reply. This is the first time I have reached out and already I am looking at information I hadn't landed on in my own searches :-)

One thing I have learned for myself and in reading comments by lots of people with similar problems is that it can be a complex issue getting the dosage right. I think I am probably fairly sensitive and in the past had unusual reactions to very small amounts of medicines. Before helping myself with Magnesium and then T3 I had developd severe heart arrhythmias and though I was usually very cold had a frightening tendency to collapse just before suddenly becoming very hot. Now the hot feeling still follows a weird sick feeling (like being about to faint) but much less violently and less often. The reason I want to try changing the dose of T3 is that this last symptom is now appearing more often again. Oh well- back to the drawing board I suppose. I now have a job, in full view of the public, that requires me to be consistently well so I am loathe to rock the boat by making changes.

shaws profile image
shawsAdministrator in reply to TimeForaRest

If you think you take a little too much T3, it is easy to drop back to to the previous dose always taking temp and pulse. Sometimes a small dose, either increase or decrease can do the trick.

I used to suffer awful palpitations on levo plus pain/stiffness but I have none now on T3 only and am well with relief of all clinical symptoms.

This chapter may be informative:

web.archive.org/web/2010112...

TimeForaRest profile image
TimeForaRest in reply to shaws

Thanks - I've decided to go back to keeping a full log of dose, temp etc and get on top of this. As well as a returning fatigue, temp fluctuations and other symptoms my fingers and feet are very painful and my lower back pain doesn't fit in with over use so I'm aware that things aren't as good as they could be.

I can only see one page of the link. Is there more? I've just looked at John Lowe's book and wish I could afford 300 pounds.

SlowDragon profile image
SlowDragonAdministrator

Have you tested your vitamin D, folate, ferritin and B12

Do you have high thyroid antibodies - Hashimoto's or autoimmune thyroid disease

If you can't get full thyroid and vitamin testing from GP

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

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take T3 in the 12 hours prior to test, delay and take straight after.

Hi i agree with u i m just look like u im freezing alwsyes and all dr say im normal but my budy tempreture is low alwayes

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