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Thyroid UK
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All thyroid conditions

Not I something I do regards posting. I'm a long term graves woman. Think I was dealt the wrong cards.. over the years I have suffered. 3 thyriodectomy, TED. Decompression, lower lid surgeries. Tear ducts unblockage surgeries. Hysterectomy. Myxdema in lower legs. One condition causes a multitude of others. Now just take 125mg levothyroxine one day and 15mg the next. Due to graves I got atrial fibrillation. Which is now stable. Had thyroid storms. Not nice. I'm 47 now and still smiling. Try not let this horrid disease get you down. Stay positive. I'm a survivor. While all this going on brought up 4 children on my own. Stay strong minded people

3 Replies

Thanks for posting and I am sorry you've had such dreadful symptoms and despite your long thyroid journey can still encourage others who are starting out on theirs.

Have you had a recent blood test because your dosing doesn't seem right, i.e 125mcg one day and 15mcg the next (I am assuming it is mcg as you have stated mg).

I am also sorry you are on levothyroxine alone (and I'm not medically qualified) that you are not on a combination of T4/T3 as you have no gland whatsoever.

Blood tests should always be at the very earliest, fasting (you can drink water) and allow a gap of 24hours between last dose and test. I think the doctor should also test your Free T4 and Free T3 to accurately assess how much T3 is circulating.

In fact I think you should ask for a Full Thyroid blood test, i.e. TSH, T4, T3, Free T4, Free T3 and B12, Vit D, iron, ferritin and folate. All have to be optimum levels, not 'somewhere' in range.

Levothyroxine, as you know, is T4 alone. It is inactive and has to convert to T3. T3 is the only active thyroid hormone required in our T3 receptor cells and without sufficient our whole body suffers.

I am glad you were also able to bring up your children despite your health problems and at times it will have been well beyond what most of us experience.

Post your results with the ranges for comments after your next test.

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Hi shaws. Thank for info.. not had blood test for ages. I will request one now that you have given me info.. I've just gone with the flow. Mg is right. Not really had time to worry about me over the years as my last pregnancy was twins. Born 13 weeks early and both disabled.. they are now 23yrs. It's only now I'm looking into this more. I'm getting older. Lol.. I will update once I've been to go for blood test


I am so sorry that your babies were born disabled and they are now adults. You certainly have had a heavy load to carry on your shoulders but have risen above it all and struggled on.

Now the aim is to get you to a place which will be helpful and rewarding for you and which, at the same, time will also benefit your family.

Most times when TSH is 'in range' they will only test the T4 too but you definitely need the above so that members can advise how best to help you feel much better.

You can tell doctor you have been advised by the NHS Choices for help/advice on dysfunctions of the thyroid gland.

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