About 10 years ago I was hyperthyroid with graves disease once treated I've been on levothyroxine since. Dosage has always changed. It used to be 50 then 75 alternatively I always felt comfortable at my TSH between 3 and 4. Since last year the Dr put me on a 100mcg and my my TSH was 1 . I've lost 3 stone in weight since 2 years ago. I can't sit still. I am always so overwhelmed and tired and when I eat it goes right through me. Any advice would be great.
I had my T3 and T4 tested on Tuesday . I had to plead to get it done. My results are
TSH 8.1
T4 15.3
T3 3.4
I have no appetite I can't stop crying. I can't stop rushing around I can't sit down. I can't eat very well. I sweat at night.
The Dr is ringing me this afternoon but he isent very good at thyroid. Please any advice would be great.
Thank you so much
Jane.
Written by
Jane_louise
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If I had those results I'd be so hypo, I wouldn't be able to get out of bed. You are hypo, I think, even with your symptoms, anxiety (including being unable to settle to anything) is a common hypo symptom. Your Free T3 is very low in most ranges - but really we need to see ranges to be able to tell. How were you treated for Graves? Do you still have a thyroid and were you tested for TRab or TSI antibodies to be sure you had Graves?
Graves is an autoimmune disease and as such it's for life, it's in your blood and DNA.
There is probably some genetic predisposition maybe a generation away from you and graves can come on because of a sudden shock to the system like a sudden death or a car accident.
Now reading that carbimazole bought you back into range some time ago I'm presuming you have been well and on Levothyroxine these past 10 years.
How much T4 are you being prescribed ?
Obviously, some of what I wrote earlier is now not relevant.
You still have your thyroid but I would suggest you ask for your antibodies to be rechecked as your results look more like hypothyroid than an overactive thyroid.
If your doctor is out of his depth, is there a different doctor in the surgery who may help you, alternatively, ask to be referred to an endocrinologist.
I don't think peroxidase is the test for Graves; it is thyroid receptor antibodies. TPO antibodies are most usually seen with hashimotos (autoimmune thyroid disease). if you still have a thyroid and didn't have it removed, your current results suggest Hashis which starts with hyper results and then destroys your thyroid, gradually making you more hypo. It is possible to have both Graves and Hashis. In any case, you are now hypo and undermedicated.
I'm with Graves Disease, treated with RAI in 2005 and was very unwell few years ago.
Do you still have your thyroid, did you have RAI or a thyroidectomy ?
I personally think that if there has been a medical intervention and your thyroid either ablated or surgically removed both T3 and T4 medication should be on the prescription.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3.
Some people get by on T4 ( levothyroxine ) alone, some people simply stop converting the T4 to T3 at some point in time and some people simply need both these vital hormones dosed and monitored independently, to get them into balance and to a level of wellness acceptable to the patient.
You might like to take a look at these books :-
Elaine Moore Graves Disease - A Practical Guide - this lady has the disease and underwent RAI treatment. She found no help when she was ill in the late 1990's and wrote a book to help others with the disease. She now has a very comprehensive website for all things Graves and though it is Stateside, and medical protocol is slightly different there is wealth of knowledge available to everybody.
Barbara S Lougheed - Tired Thyroid - this lady went through the same treatment and her book, and blog, amongst other things, debunks the TSH blood test for Graves patients.
Both authors confirm that any blood test must include both T3 and T4 blood tests with the intention to bring them into balance generally in the upper quadrants of the relevant ranges.
Another book that I consider a goto is written by a doctor who has hypothyroidism.
Your Thyroid and How To Keep It Healthy by Dr Barry Durrant Peatfield - it is an easy to read, sometimes funny book on all things thyroid and so relevant for anybody with a thyroid issue, and we need to know what the thyroid does so we can compensate for the fact we have been " treated " .
We need the ranges along with your blood test results - but am guessing that you need a dose increase to bring your THS down to around 1 and your T3 and T4 need increasing and am guessing that there is room in the ranges to accommodate at least one 25 mcg increase in Levothyroxine.
Jane_louise, these results show you are very hypothyroid.
A healthy person would have a TSH close to 1, and once medicated we usually need it lower than this. A hyperthyroid person (overactive thyroid) would have a very low TSH, well below the range.
You don't give the ranges for your freeT4 and freeT3, but they both look low-ish.
The symptoms you suggest sound a bit hyper, but it can sometimes be confusing, and being tense and restless can also be hypo symptoms. Does lying down for most of the day or a hot bath make you feel any more relaxed? For me, resting would help with being hypo, but it can take days in bed to get much benefit.
My advice would be to keep raising your Levothyroxine, getting blood tests every 6 weeks and raising again, and make good notes about your symptoms on each dose. I tend to want to have all the data, so I'd say continue raising until your TSH is suppressed and your freeT4 and freeT3 are high in range, just to see how you feel. It may be that you feel at your best with quite High TSH (most people would feel ill with a TSH between 3 and 4), but you only know for sure once you've tried every possibility.
It may be that you've already done some of this, and have blood tests and know what your symptoms are with high freeT4 and freeT3, so you can fill in the gaps.
I think for those of us who have an unusual response to hormone replacement, or need unusual blood tests (I count myself as one), we need to get good data to confirm that we've fully tried out usual best practice, and that we feel less well on that than on our own strange dose. The only true evidence is being absolutely sure our symptoms are better on the chosen dose.
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