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Those with thyroid problems please help - I think I need thyroxine but my doctor won't prescribe it until I get "really bad"...

(13 Posts)
hattyyellow Mon 19-Oct-09 08:57:48

I recently had blood tests done. TSH level is 5.1, thyroxine level is 12.0 and antibodies tested positive at 419.7.

I went to see the doctor to discuss these on Saturday morning and he said that it indicates my thyroid is going underactive but doesn't feel I need thyroxine until I get "much worse, probably next year".

I'm confused about the antibodies. He said a normal range is up to 50 (?) so my reading is a lot higher. But he said the amount of antibodies is irrelevant - is that true? Surely a lot of antibodies shows a bigger problem than a few? And it seems that US guidelines rate a TSH level of 2 (?) as a problem so 5 would be a problem over there.

I'm so tired all the time, dry skin, constipated, a bit down, cold - I just really want to get this sorted out - especially as I have three under 5 year olds to run around after.

Can anyone offer any advice? The doctor had just got his first job with our surgery and I'm wondering if I should go back to see a more experienced gp.

Any thoughts/interpretation very gratefully recieved.

nancy75 Mon 19-Oct-09 09:02:28

see another doctor

BakewellTarts Mon 19-Oct-09 09:07:33

I would definitely go back for a second opinion. I wouldn't be happy with the doctors explanation and would want to understand why it would be better for you to wait until things deteriorated and it was "really bad" (whos opinion would count as well, from what you post it sounds like its compromising your life now). I can't see any benefit unless there are severe side effects.

BTW I don't have Thyroid problems but my mum has just been diagnosed with this and put on Thyroxine. Its made a huge difference to her. In terms of mood and energy levels shes back to her normal self and we were very worried about her for some time certainly wouldn't have benefited her to wait.

Owls Mon 19-Oct-09 09:51:59

Agree definitely go back and see a different doctor. Some doctors will say upto 5.5 is normal others anything over 3 is abnormal.

Be prepared to be very firm is what I've found with my underactive thyroid problem - you are feeling very unwell now this is extremely unlikely to just resolve itself without help and you will start to feel more and more ill.

Good luck!

luckyblackcat Mon 19-Oct-09 09:54:29

Ask to be referred to an endocrinologist.

Jackaroo Mon 19-Oct-09 10:06:36

This makes me so angry. A typical example of an illness that is very often experienced by women and yet dismissed so easily.

given your symptoms I would say there is something to treat. He is right that it can continue to get worse and that in another person they would not seek help/get so many symptoms yet, but you have and do have them!

Also, it seems bizarre that a new GP should be so out of date with his knowledge; TSH 5.5 used to be the top end of the scale, but in the last couple of years they've said that anything over 2-3 is a problem.

There are also doctors (in teh US anyway, I don't know about the UK) who would treat you on the basis of the raised antibodies alone, even if your TSH appeared within range, as it is an indication that your thyroid is going to fail before the TSH tests show up. You have both?

I've just found this, and without wishing to alarm you about the fertility stuff is pretty helpful...

On an anecdotal level, I have a friend who had a baby, then couldn't concieve, having tried for 18 months they found her thyroid was a problem, and 6 months after starting treatment she was pg. healthy and happy, so definitely worth getting this looked at by someone else.

good luck

luckyblackcat Mon 19-Oct-09 10:13:01

Jackaroo, I was the same - 3 yrs after having DD and beeing fobbed off by the GP (of course you are tired, you have a baby) I paid to see an endocrinologist.

Once my thyroid was stable I got preg first try - my DH felt SO cheated!

Doozle Mon 19-Oct-09 10:16:22

Agree - see an endocrinologist who will probably help you if you are having symptoms.

My TSH was 6.25 and they started me on thyroxine. I was ttcing at the time and they said I did need to get it under 2 to try and get pregnant.

skybluewinking Mon 19-Oct-09 10:16:39

And don't forget that GPs hate putting people on thyroxin as it then means ALL your prescriptions are then free, it affects their drug budget.

hattyyellow Mon 19-Oct-09 10:20:10

THanks all - this is so helpful. I really appreciate all your thoughts and comments.

I am lucky enough to have my three children and do not have the energy or money for any more so at least the fertility problems are not an issue.

Although I do think my thyroid problems were kickstarted after my twin pregnancy as when we tried to concieve DC3 it took over a year, at a time when I was displaying lots of thyroid problem symptoms. The TSH levels were raised then when they started to investigate why I wasn't concieving - but that doctor dismissed it being a thyroid problem as my BMI was in normal range.

Will go back and see a more experienced doctor I think as you suggest. Thanks all!

Doozle Mon 19-Oct-09 13:30:24

Good luck.

If you have Hashimoto's antibodies by the way, your TSH will very likely jump up and down. Hashimoto's tends to attack the thyroid in spates causing fluctuations in your TSH.

So your TSH number above is only indicative of how your thyroid was doing on that particular day of the blood test.

I've found out that my TSH can be much much worse than my original blood test showed. Which explains why you can sometimes feel absolutely knackered and other times feel ok.

hattyyellow Mon 19-Oct-09 14:57:08

Ahhh, that's really interesting Doozle - I didn't know that - all this is pretty new to me! I do feel a fluctuation in tiredness..

Daisydaydream Mon 19-Oct-09 15:17:59

I would try and see another Dr. I have recently been diagnosed, and my Doc is very understanding, and I am having blood tests every 3 months to keep an eye on my thyroxine levels. (I dont know anything about the numbers you have quoted, a lot of you seem to know about these, I will have to ask for more info about these myself) I am on a very small dose, 25mg, which has technically put my thyroxine levels back to normal, but as I am still cold and tired all the time he said we will review it next time as anecdotal evidence should be considered too. (It has made a difference to my straw-like hair though, and the constipation!) See if you can see a Dr who will send you for blood tests, esp if there is any family history. Good luck, hope you get things sorted x

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