I'm confused, any advice please: Hi, I'm confused... - Thyroid UK

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I'm confused, any advice please

pompadour profile image
5 Replies

Hi, I'm confused, here is my story, I have nodules on my thyroid, (these were found as a result of an ultrasound scan on my neck for something not connected with my thyroid). Up until that point I had no idea there was a problem. The advice was to take Levothyroxine 50mg/day in the hopes that it would replace and stop my thyroid working and in return reduce the size of the nodules. Bloods were taken originally TSH was 2.89, T3 3.38 and T4 9.99. I followed this recommendation, blood tested in October for TSH 3rd generation level and it was 0.18, then same tested again in Jan 2017 and level 0.54, then May another blood test for the same was done level now 1.82. I have never been told if I am hypo/hyper or whatever, so I am confused!! My TSH 3rd generation level seems to be getting higher, I'm not sure what that means, I have to have another blood test in July and also another ultrasound scan as well. Is there anyone in the group who is like me and has ended up on medication? I too have trouble losing weight, I talked to my GP about this and didn't get anywhere.... Can I just stop taking levothyroxine as it's only a low dose, or do I need to up my dose which may in turn decrease the nodules and aid weight loss? It may seem that I am only concerned with weight loss, but that is not the case, I can't and don't want to have an uphill battle with weight gain.

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pompadour
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Raventhorpe profile image
Raventhorpe

Hi pompadour from your tsh and t4/t3 results you are hypothyroid, your thyroid is struggling to make enough thyroxine and the body is asking for more so your tsh has increased and you t4/t3 is low. you haven't included the ranges which we really need to see to get a proper diagnosis they are the figure in brackets after the result. We you really need an up to date bloodtest of t3, t4 and tsh so we can see where your levels are now, if gp won't do you can get them done privately at medichecks or blue horizon, both are good and lots of people on here use them. Bloodtest need to be done first thing in morning and fasting for best results. Also I would advise having antibodies checked to see if you have them as 90℅ of hypothyroid is caused by them and is known as hasimotos.as your tsh is rising I would think it likely that you need an increase in you levo but would suggest you get bloodtest done first and then post results so you can get advice.

pompadour profile image
pompadour in reply to Raventhorpe

Hi Raventhorpe, thank you for your reply, the ranges on my results are

TSH 0.25-4.7, T3 is 2.50-3.90 and T4 7.72-14.20. I have been tested for anti-thyroperoxydase my level is 0.4 and the range is to 9, and also anti-thyroglobuline my level is 1.0 and the range is to 4.

I don't know what these mean, I haven't ever seen a Endocrinologist, my GP has consulted one by phone, but as of yet, I've not had an appointment with her, should I ask for an appointment?

greygoose profile image
greygoose

Nodules are rarely a problem. Most people have them, even if they don't have a thyroid problem. It's only if they grow extra large that they have to be biopsied.

Your original TSH wasn't quite hypothyroid, but on the brink. 3.38, however, is hypo. But, were all the tests done at the same time of day and fasting? If not, you can't compare them, because TSH alters throughout the day.

Please, when posting results, always put the ranges - the results on their own are meaningless. Having said that, your FT3 does look low, and that would account for your weight gain.

Doctors don't explain much, because they don't understand much themselves, I'm afraid. For example, did your doctor tell you to take your levo on an empty stomach and wait at least one hour before eating or drinking anything but water?

50 mcg is not a low dose, as such. It's the normal starter dose, and if your TSH goes up again, your doctor' should increase it by 25 mcg. Then test again in six week's time. It really is not advisable to just stop your levo. It's not a medication, in the normal sense of the word, it is a hormone, and replaces the hormone that your thyroid can no-longer make. It is essential for life.

When you go for your next test, I would suggest you make your appointment for as early as possible - before 9 am - and fast over-night - have breakfast after the blood draw. Also, leave 24 hours between your last dose of levo and the blood draw. If you always do your blood tests that way, you will be able to compare them and see your progress - or lack of it. :)

pompadour profile image
pompadour

Hi Greygoose, the ranges on my results are TSH 0.25-4.7, T3 is 2.50-3.90 and T4 is 7.72-14.20

Does this mean that now I am taking levo my thyroid is no longer producing any hormone? and now that I have started taking levo, I will have to continue to take it indefinately?

I have had a biopsy done, but sadly the results were inconclusive, although two of the nodules are large and were classed as TI-RADS 4a.

I am due to have another blood test in July, but my Doc has only requested TSH level to be checked not T3 and T4, also I will have another ultrasound scan in July as well to see what size the nodules are.

If my TSH continues to rise, should I increase my levo level? and if I do, can I be sure that it won't increase my weight?

I never realised the thyroid was such a complex little beast, and I guess, if I hadn't of had the lump on the side of my neck I would not have had the first ultrasound scan and wouldn't have known that I had nodules on my thyroid, and now it seems everything is all upside down.......

Thank you so much for all of your help

silverfox7 profile image
silverfox7

If you look at the Thyroid Uk site you will find loads of info about the thyroid. Anything that you don't understand then shout out and we can help explain butvitcis very much a learning curve getting to grips with it and at times patience is needed but there is always someone to help and encourage you.

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