Advice required: I have Hashimoto's... - Thyroid UK

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Advice required

glynisdelport profile image
8 Replies

I have Hashimoto's/Hypothyroidism. I have had Hypothyroidism for many years, I am now 64 years old

I found that I had Hashimoto's by doing my own blood tests as here the T3 is not tested. Took my results to my GP who referred me to an endocrinologist. It was requested in August 2017 and I was given an appointment in January 2018 but then the NHS had a crisis and my appointment got cancelled. I did however get a phone call and went on the 8th February. At that time I was on T3, Liothyronine and T4, Levothyroxine. He said that I had to stop taking the T3 immediately and would do blood tests in 6 weeks time and then if I needed the T3 he would write a letter and I could go back on it. For six weeks I took only Levothyroxine and waited. I am still waiting. I emailed his secretary and she said that I just have to wait and that I am on an "active list". Almost 4 months later and no appointment so I did go to my GP and said that I was going to go back on the T3 as I felt better when I was taking it.

It is not much good asking the GP as they do not like T3 and do not know much about it but It does make me feel better and has helped me with my weight.

I just am not sure how much to take so I have taken 5 micrograms of the Liothyronine in addition to the 125 micrograms of Levothyroxine which the GP prescribed. This may be too much or too little now.

I will do this for a month and then have a blood test to see how things are.

Any thoughts on this?

Glynis

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8 Replies
SeasideSusie profile image
SeasideSusieRemembering

Glynis

Have you got any test results to share -

TSH

FT4

FT3

From before you added T3, when you were on Levo plus T3 , and more recently when on Levo only?

glynisdelport profile image
glynisdelport in reply toSeasideSusie

Yes correct I was on Levo and T3 and then endocrinologist said drop the T3 but as he is not checking and I really have not been feeling too good I am taking both again

SeasideSusie profile image
SeasideSusieRemembering in reply toglynisdelport

Glynis

I asked you if you could post results so we could see if you were being dosed adequately and to see why your endo stopped your T3, and how much you need to add now.

If you can post the results I asked for in my previous post, we can help.

glynisdelport profile image
glynisdelport in reply toSeasideSusie

TSH 5.39

T4 13.9

T3 4.41

that was while on both. My TSH had been much higher otherwise not much difference in T3 and T4. When I stopped the T3 my TSH went to 0.108 and T4 to 25.6. T3 5.39

SeasideSusie profile image
SeasideSusieRemembering in reply toglynisdelport

Glynis

If you could please list them so we can understand, and include the reference ranges for

1) Before T3 was originally added by your endo

2) whilst you were on Levo plus T3

3) The results which made endo remove T3

4) Latest results on Levo only

glynisdelport profile image
glynisdelport in reply toSeasideSusie

The T3 was not added by the endo. I consulted a doctor in NZ who had diagnosed my son with Hashimoto's. She got me to check to see if I had it as well which I did. Before that I was only on T4 but overweight and increasing in size even though we ate the paleo diet. Altogether I just felt awful and so tired. At that time just on the T4

TSH 35.5

T4 5.7

T3 4.12

My TSH has sometimes been 58.7 then 40.4 and slowly come down.

There were no results that made the endo take it away. He said that he did not have access to my GP's blood test results so I must stop taking the T3 so that he could see for himself. I had taken my test results with me but he was not interested in them.

He gave me a form to have blood tests done but I do not know the results and that was done after my visit to him in February.

I just try to look after myself the best that I can

loueldhen profile image
loueldhen

What t3/t4 dose were you on before they stopped the t3? Did he increase your t4?

glynisdelport profile image
glynisdelport

I was on 20 microgram T3 and 75 micrograms Levothyroxine. He stopped the T3 and increased Levothyroxine to 150 micrograms. He said that this was necessary in order to justify giving me the T3 which is not really used here and very expensive. Mine was prescribed by a doctor in New Zealand and I get it posted to me

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