Help with results?: Hi. I am hoping someone may... - Thyroid UK

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Help with results?

Sasmit profile image
6 Replies

Hi. I am hoping someone may have an idea about what is going on with my health!! I have had an underactive thyroid for 18 years (since i was 22) and have always been on 150mg of thyroxine and it was managed around TSH blood results of approx 2-2.5

All was well until about 4 years ago (after the birth of my third child). At this point I became unbelievably fatigued, depressed, suffered from terrible dry skin and loss of eyebrows. I also started to have terribly sore and swollen finger and knee joints. All of this was put down to having three small children. My TSH results dropped to around the 1-1.25 mark so doseage wasnt changed and no T4 or T3 tests were done. I barely existed for the next 4 years :-(.

Still feeling horrendous I came upon this site and stopped taking my tablets with coffee. Although not totally fixed I am far less fatigued, depressed and my joint pain has eased considerably. My latest bloods came back today and are

TSH 0.06 (0.3-3.94)

T4 29.8 (12.3-20.2)

My doctor has just phoned and would like me to reduce my Thyroxine. I am actually due to see an endo at the end of Jan (for the first time ever) and am hoping to go in armed! The problem is I think they will just look at these results and say I am hyper and that will be the end of that.

In case it is relevant I will also add that I had my thyroid scanned last month and the sonographer said that it was extremely small and 'shrivelled' having originally been enlarged at diagnosis. I also suffered with alopaecia as a child (and still do) another auto immune disease.

Any help you could give would be very appreciated!

Thanks Sarah

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6 Replies
shaws profile image
shawsAdministrator

First question - did you take levothyroxine before your blood test?

Sasmit profile image
Sasmit in reply toshaws

No. I took it the previous morning as usual. The test was at 10 in the morning so I just took it afterwards.

shaws profile image
shawsAdministrator in reply toSasmit

That's good. Your T4 is high so I wonder if you aren't converting it to sufficient T3. Of course, they don't test our T3 which would be good to know.

You definitely need a review of your medication and adding some T3 would be a start. How long do people have to suffer unnecessarily so due to guidelines. There has to be some flexibility because what suits one doesn't suit another.

This link is not unusual in the subject. Many doctors believe this to be the case. Unfortunately, we don't have the choice.

web.archive.org/web/2010073...

I hope you see a good Endocrinologist. Did you get a list from louise.warvill@thyroiduk.org, most of whom are sympathetic.

hormonerestoration.com/Thyr...

Don't reduce your medication due to the TSH alone as we can have a suppressed TSH without any danger.

Someone who is good at bloods will respond.

Sasmit profile image
Sasmit in reply toshaws

Thank you for responding. It's not an easy illness to understand is it!

The doctor said that the t4 is high because the thyroxine dosage is too high. But surely if I reduce thyroxine then my symptoms will come back in force. I wish I really understood it all!

shaws profile image
shawsAdministrator in reply toSasmit

I am confused too. Usually if you have a very low TSH and high T4 it is indicative of hyperthyroidism?

Usually the doctors reduce the dose if the TSH is too low, not if the T4 is too high but someone who is better versed than me, hopefully, will answer.

This is an excerpt from a link which says we can swing between both hypo and hyper and advice is:-

As part of this ongoing conversation, Sood tells her patients who have hypothyroidism what it feels like if they have excessive medication in their system or if their stimulating antibodies are taking over and making too much thyroid hormone. She also tells hyperthyroid patients what it feels like to become hypothyroid so they know what to look for. Those symptoms may include dry skin, unexplained weight gain, thinning hair, and sluggish heart rate, she says.

“Keep a symptom diary, because sometimes symptoms can fluctuate so rapidly in such an unclear way that you may have a hard time keeping track otherwise,” she says.

However, Lam says there's one hallmark characteristic that suggests you are switching from one to the other: “If you notice that your heart palpitations and tremors are gone and now you feel slow, your disease may be changing.” Most importantly, if you have one thyroid disorder, make sure to get routine medical care because it can transition between one and the other. And, he says, "we want to try to catch it early before it becomes flagrant.”

everydayhealth.com/thyroid-...

shaws profile image
shawsAdministrator in reply toSasmit

I am confused too. Usually if you have a very low TSH and high T4 it is indicative of hyperthyroidism?

Usually the doctors reduce the dose if the TSH is too low, not if the T4 is too high but someone who is better versed than me, hopefully, will answer.

This is an excerpt from a link which says we can swing between both hypo and hyper and advice is:-

As part of this ongoing conversation, Sood tells her patients who have hypothyroidism what it feels like if they have excessive medication in their system or if their stimulating antibodies are taking over and making too much thyroid hormone. She also tells hyperthyroid patients what it feels like to become hypothyroid so they know what to look for. Those symptoms may include dry skin, unexplained weight gain, thinning hair, and sluggish heart rate, she says.

“Keep a symptom diary, because sometimes symptoms can fluctuate so rapidly in such an unclear way that you may have a hard time keeping track otherwise,” she says.

However, Lam says there's one hallmark characteristic that suggests you are switching from one to the other: “If you notice that your heart palpitations and tremors are gone and now you feel slow, your disease may be changing.” Most importantly, if you have one thyroid disorder, make sure to get routine medical care because it can transition between one and the other. And, he says, "we want to try to catch it early before it becomes flagrant.”

everydayhealth.com/thyroid-...

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