Living half well with 50years of hypothyroidism - Thyroid UK

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Living half well with 50years of hypothyroidism

janetEB77 profile image
8 Replies

I was diagnosed in the long distant past 1967 when both Eltroxin (T4)and tertroxin(T3) were the only drugs available and both made by Glaxo. I arrived in hospital in a comatose state age 27 and was in for three weeks on T3 discharged on T4 I have been on T4 ever since with very variable results, I managed to work for 50 years as a retail pharmacist with doses up to 400mcgs daily (mostly 300mcg) Last year due to extreme fatique I researched many articles on hypothyroidism and came to an incorrect conclusion that I had inherited the family disease of PA.I (via thyroid UK) took the DI02 gene test which was homozygous showing minimal conversion to T3. this evidence ment nothing to my G.P. but got me an apt to see an endo which gave me a negative response to a trial of T3 and I am now on my own again Private blood tests at blue horizon produced abnormal results as follows TSH (0.07) free t4 (25,46) on a dose of 150mcg daily and a comment that this was an overtreatment. with folate (19.9) active b12( 128) urea (8.1) uric acid (424) cholesterol (8.32) LDL (5.6) triglycerides (3.87) ALP (170) Ferritin (76.4) HDL 0.97 Possible diagnosis of CKD2 and suggestion that thyroid results would give weight loss and increased appetite (neither of which is true)

Since I do not live far from Birmingham I may attempt to get an appointment with Dr Skinner or acquire some t3 by my own means. T3 is in the drug tariff and should be prescribed if required To the NHS it is of much lower price than many other necessary drugs thus why is their a block in the prescribing process

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8 Replies
Muffy profile image
Muffy

Dr. Skinner sadly died of a stroke in November, 2013.

shaws profile image
shawsAdministrator

Hi janetEB77

First of all I will give you the bad news that Dr Skinner died two years ago and is sorely missed by his many patients. Most of us think his demise was due to being hauled before the GMC numerous times because he prescribed due to our symptoms and not the blood tests.

If you need a private doctor email louise.warvill@thyroiduk.org.uk who has a list of sympathetic doctors.

T3 and T4 are not drugs - they are synthetic thyroid hormone replacements because our own thyroid isn't producing the amount we need.

It looks to be as if you may not be converting T4 sufficiently to T3 as your T4 is high but I will leave others to respond re your blood tests as they are far better than me.

Clutter profile image
Clutter

JanetEB77, TSH is low, but not suppressed and FT4 is possibly a little over range. Both look normal to me for someone on 150mcg Levothyroxine. Did you have FT3 done? If so, please post result with the lab ref range (the figures in brackets after the result).

janetEB77 profile image
janetEB77 in reply toClutter

my free t3 is 4.9

Clutter profile image
Clutter in reply tojanetEB77

Janet, you don't appear to have a T4 to T3 conversion issue, 4.9 is quite good. I don't think you are overtreated either. Read Dr. Toft's comments about thyroid levels and dosing in this link thyroiduk.org.uk/tuk/about_...

janetEB77 profile image
janetEB77 in reply toClutter

I reproduce a comment from the the endo letter to GP. She will need a higher t4 concentration to feed through to produce normal levels of free t3,Therefore the current dose of 150mcg is ideal for her needs DO not adjust this , however I have symptoms of overtreatment, is this the right way to get free t3? In the past I have had minor epilepsy due to hypoglcaemia

Clutter profile image
Clutter in reply tojanetEB77

Janet, Endo is right, some people need FT4 over range to achieve normal levels of FT3. See Dr. Toft's comments in Treatment Options thyroiduk.org.uk/tuk/about_...

Unfortunately, despite the need for higher levels it can make some people feel overmedicated.

I felt very unwell and overmedicated when FT4 was over range but FT3 dropped below range when dose was reduced.

My endo didn't prescribe T3 when FT3 was low so I self medicated. Six months later he agreed there had been a vast improvement in my health and prescribed T3 and Levothyroxine combination.

It's certainly worth asking your endo to prescribe some T3 to a reduced dose of Levothyroxine and to consider self medicating if he refuses.

I found the addition of T3 also calmed the adverse effects which Levothyroxine only caused me.

humanbean profile image
humanbean

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