Just Joined The Blog!: Hello, This is my first... - Thyroid UK

Thyroid UK

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Just Joined The Blog!

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6 Replies

Hello,

This is my first post. Just wanted to introduce myself - I have been on thyroxine for about 4 months now after my TSH went to 88 and my T4 to <3.2. Prior to that I was borderline for what seemed like an age and I remember sitting in the waiting room before my appt thinking 'oh please let me just have dropped outside of normal so that they'll finally help me." Well, I think I got what I wished for as my humble pie eating GP then confessed it was the worse case of hypo deterioration that she had ever seen!

Sadly, as you experienced bods have already realised, thyroxine isn't the quick fix and I must confess that 4 months on I feel no different at all :-(

I now have size 8, 10 and 12 clothes in boxes gathering dust and wear between a 14 - 16; I feel like a sloth - how I manage a full time job and still go to aerobics three times a week is a miracle, and I think I've forgotten what a libido is!! Sorry partner!

I moved surgeries in the hope of finding a better doctor. Big mistake! First one I saw at the new practice ended up being a right condescending chauvinist pretty much in the same vein as some of your tales.

His only saving grace was that he tested my thyroid antibodies, which showed up as 206 (I can't locate my form at the mo, but I know this wasn't supposed to be more than 70).

Anyway, I wonder if I could ask you for some advice as to how I move forward and try to feel better?

My last blood tests show my TSH as 5.5 and my T4 as 8. My doctor is now starting to talk 'normal' again, but I don't feel any better yet! Should I insist on getting the TSH to 3 or less and / or ask to try T4 + T3 if I still don't feel any better in future months? I am currently on 100mcg of levothyroxine, which could be a placebo the good it’s doing!

It's the weight gain that really gets me down, but it’s so hard. I’m studying a nutrition course in my spare time so know some of the theory, but when you feel this rotten and think your metabolism is kaput anyway, there’s nothing like the satisfaction of the carbs!

All advice welcome and really pleased to be on this site sharing stories and wisdom with you all x

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6 Replies
flossie profile image
flossie

i have been over-active and am now underactive and currently on 100mg thyroxine which i have been on for just over a year. my thyroid gland was wiped out with radio-active iodine last year. i also went from 9st 10 to currently now 11st 2ibs, which has been the hardest thing to come to terms with. dont't get to down about it it does take a while to settle down,although having a healthy diet and excercise reguarly does help.

Annamaria profile image
Annamaria

i had a subtotal thyroidectomy in 1990 for hyperthyroidism was diagnosed 2 months ago with hypothyroidism after going back and forth to the doctor for the past 2 years with numerous symptoms.....was started on 25mg but am now on 50mg and cant say i have noticed a huge difference but have noticed some small subtle ones.......i also have piled on the weight, am 9st 10lb on a five foot frame which makes me look like a weeble, i also have 2 artificial half knee joints due to trauma induced osteo arthritis and the extra weight REALLY hurts them :-( am trying to exercise but its hard when you are in pain and you feel so down about the weight thing.....hang in there you are one of many of us and we can all help each other.

SleepyDumpling profile image
SleepyDumpling

Your T4 sounds low. Normal range is between 10 and 26 pmol/L. My endocriniologist says he usually aims to get it above 22. I certainly find that anything below that value makes me feel much worse. It would be worth checking the range used by the lab before accepting "normal". GP's are often unsure about thyroid treatments as I'm sure everyone is aware, I found being armed with info and being persistent has paid off. My GP now works with me rather than simply teeling me how I'm going to be treated.In my opinion finding a GP who listens is probably the best thing anyone can do in our situation

Muffy profile image
Muffy

Hi Marengo,

You really need to get your TSH down to around 1, or even less as quoted by Dr. Anthony Toft in THe British Medical Association Family Doctor Guide to Thyroid Disorders. Look for the section, Judging the Correct Dose. You could buy the booklet and take it to your GP. He states that typical results should be FT4 24 and TSH 0.2. Some patients though need e.g. FT4 of 30 and TSH either low or undetectable and that sometimes T3 should be administered.

Peter Warmingham has written a brilliant hypothesis on blood results when taking thyroid medication and is well worth a read. He is an engineer, but this could explain everything. There are other papers where they state that treatment on thyroid hormones should have different ranges from original blood tests.

Hope this helps.

Chippysue profile image
Chippysue

Lovely to meet you, it is just criminal that you were just left waiting for your TSH to rise. I was in a similar situation and just wonder whether I wouldn't have my lingering symptoms if I had been treated earlier, impossible to prove so hey ho.

Full time job and exercise! Don't know how you do it!

You need to aim for your TSH to be under 1 and your Free T4 at the very top of your lab range.

If you GP were to look into this there is an article in a recent Pulse magazine where Dr Toft explains this:-

pulsetoday.co.uk/story.asp?... see question no. 6.

You will be able to lose weight on a low carb diet with another increase in meds or maybe even a few increases. 5.5 is far too high, they treat at 3.5 in USA and Germany!

perks profile image
perks

Thanks Suze Interesting article in Pulse . I'm going to take the section on results levels off to the Dr's on Monday for my longggggg awaited appointment.. was a little dissapointed to read Dr Tofts comment that there is no place for Animal Thyroid extract in the treatment spectrum, as the debate and clinical data in the medical world still shows the great divide between both schools of thought. But still results section will be VERY useful. Many thanks Perks

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