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Suffering with severe depression, I was diagnosed with Graves’ disease two years ago and referred to an endocrinologist. I live in France and I’m not sure if the lab measurements are identical to those in the US, therefore I am indicating the lab’s “normal” range in brackets after each lab result given below.
At that time my TSH level was only 0,001 uUI/ml (normal range 0.4 – 4.4), my free T4 was 19.27 pmol/l (well within the normal range: 11.5 – 22.7), and the antibody measurements were as follows:
Antithyroid peroxidise (TPO): 2624.6 UI/ml (normally should be less than 60,0)
Antithyroglobuline: 369,9 UI/ml (normally should be less than 60,0)
Thyroid stimulating antibody: 9.8 UI/ml (normal range: 1,0 – 1,5)Since then, after a few weeks on Neomercazole, followed by Proracyl (which both proved problematic for my liver) I have been treated with a combination of Basedene (Benzylthiouracil) and Cynomel (Liothyronine sodique, a thyroid hormone pill).
My TSH has increased to 0.2 (normal range 0.4 – 4.4, so still a bit low) but my T4 (which has never been high) has gone down and has remained below the normal range since March 2010 (last test a month ago: 7 pmol/l (normal range: 11.5 – 22.7). I’m due for more antibody tests in a month; a year ago they were all still high.
I am confused by these results, because everything I have read about Graves’ disease tells me that with this disease T4 is high! Furthermore, if anything I feel I have the symptoms of a hypothyroid person: lethargy, tiredness (often falling asleep at work), feeling cold, hair loss, brittle nails, zero libido, constipation, severe bloating, muscle weakness, weight gain..…. and my eyes, far from looking bulgy, seem to be disappearing behind increasingly droopy eyelids (initially on one side much more noticeably than the other). The only exception is my heart: quite severe arrhythmia (which started about a year ago) coupled with a long-standing tendency towards high blood pressure mean that I am now being treated with Propranolol.
The specialist is not very communicative and only insists that my “symptoms” are not being caused by my treatment. I am wondering if I should seek a second opinion. If anyone has had similar results, can clarify the situation or advise me on what’s going on, or point me in the direction of earlier relevant posts I would be most grateful.
Your symptoms are very typical of being hypothyroid, that is for sure (I’m not diagnosing, just they are symptoms that we read when we learn about hypo and hyperthyroidism and Graves’.
In the recent past, one of the facilitators wrote a very nice synopsis of the thyroid labs, and what they mean, and their relationship to each other. I THINK it was Kimberly, but it might have been Bobbi or Ski. I will try to find if after I post this note.
Re antibody results, other than telling me that I do, indeed, have an autoimmune process going on, I don’t pay much attention to them.
It is the TSH T3 and T4 PLUS YOUR SYMPTOMS that determine changes in your medications. i took a quick look at one website that is long and involved, regarding the biochemistry of these labs, but copied one sentence only for you to look at and think about. You are correct in your thinking that T4 is elevated in Graves’ but Graves’ does not mean only hyPEthyroidism.
I think the question to ask you endocrinologist (yes, I suggest you get a second opinion, also) is if you are hyPOthyroid, despite the fact that your TSH is in the accepted range. Remember, the LOWER the TSH, the more hyPER you are, as a general rule.“Clinically, T4 measurements have long been recognized as an aid in the assessment and diagnosis of thyroid status. Elevated T4 values are characteristically seen in patients with overt hyperthyroidism, while T4 levels are generally depressed in patients with overt hypothyroidism.”
Of course, they mean as an aid to TSH, T3 and your symptoms.I do think I am getting over my head with this, for I an “just” another patient with Graves’. And I learn from my endo, who is wonderful (after going to three docs who were NOt, and would not listen to me or really care.
But from my own experience, I know exactly how you feel being hypo, just like I felt. In my case, the thyroid dose has been lowered, and had to be increased. And we went pretty much from how I felt, for the labs did not budge that much.
Glad you are being treated for your cardiac status.
I suggest you do make an appointment with a good eye doc who is familiar with thyroid eye disease (TED.) It certainly does affect eyelids. But my eyelids retracted, did not get droopy. If your eyelids are drooping, a good eye doc is a good person to have on your team.
I wish you very much good luck with this. From what you wrote, it seems that you are taking an antithyroid drug and a thyroid supplement at the same time? I would ask that question, too.
Welcome to the forum. I know you will hear from the facilitators, who can add to, and correct if needed, what I have written.
ShirleySnelsen,
THANK YOU SO MUCH for your very comprehensive and sympathetic response to my post. I’m off to my GP this morning to discuss all this further; he is very supportive and a good listener, unlike the endo.
I’m so glad I discovered this forum.
A couple of thoughts came to mind — the first is that TSH typically lags behind our actual thyroid hormone levels. It is a “running average” so at any given point in time your T4 level might be within normal, but if it has been out of normal for a period of time, prior to the test, the TSH will still show lag.
Second. There are no values for T3 in your comments. T4 is a type of hormone that must be converted into T3 in order for the cells to utilize it. Moreover, it is the free T3 that is utilized in the cells. As a lay person, I do not know how to evaluate only using T4 numbers. My non-doctor sense of logic suggests that it might be possible for T4 to be lowish if more than the usual amount of it is being converted by the body into T3. But there could be other explanations, as well.
And, as to your list of symptoms: fatigue is prevalent with hyper as well as hypo. Muscle weakness is a hyper symptom, as well. And some folks who are most definitely hyperthyroid gain weight instead of losing it. Constipation is, typically, hypo. In short, SUBjective symptoms are less reliable a diagnostic tool than the OBjective blood tests, which we, unfortunately, are not qualified to analyze try though we might.
Clarinette,
I also wanted to add something on the lack of a Free T3 number. I had little if any elevation of my Free T4, but my Free T3 was pretty high. There is something called T3 toxicosis, that many docs don’t look for. I got a second opinion, which was delayed 6 weeks. Had labs done and had a normal T4, and a very high Free T3, the following week, went back (as scheduled) to the 1st opinion doc, who didn’t believe in getting Free T3.
On that date, 6 days later, now my FT4 was above normal range, and he said, “see, we didn’t even need the FT3” I showed him the labs from less than a week before, where the FT4 was normal. Said, if you had seen just this, you would have said I was doing “ok”. He found it bizarre. Now that I have been
treated he “wants to check my FT3 out of curiosity to see where that is”.Also, as it looks in hindsight, I have had Grave’s disease for years and years, where no one ever checked “those” antibodies. I have been all over the map, and can say, I felt just as “bad” with the hyper symptoms, as I ever did with the “hypo” symptoms. And most of the lethargy, etc as others have said, can be present with either!
You have both antibodies as I do, (I was diagnosed with Hashimotos in 1982). My endo recommended RAI because he said with both sets of antibodies, some try to suppress, others try to stimulate….you are at the Mercy of which ever antibody is “winning the race today”.Meaning, if the blocking antibodies are more prevalent this week, you feel more hypo, if the Stimulating antibodies are more prevalent this week, you feel more hyper! He mentioned with the anti-thyroid drugs we would re-set me to a lower level, but I would likely still go up and down and fight different symptoms, just at that lower level.
Sorry to be so verbose, but I know it’s difficult when your labs don’t fit into
anyones “picture”. YOu need that Free T3 test to add to your picture.Regards,
CCGreat replies! Isn’t this site wonderful? I hope you begin to get your life back. I am sure you will. So glad your GP is nice and sympathetic. Thanks, Bobbi, for the explanation about tears and further comments on labs. The tear explanation is very helpful for all of us with TED>
Also CC’s thoughts. Now you are armed with lots of things to think about.
If you have not gone to your appt. yet, I encourage to ask him/her to explain Hashimoto’s too.
This is a long struggle, but you will be better when you get the
“Sweet spot,” which describes the right mix of meds. i don’t think the block and replace method is used very much in the U.S.
Have the docs talked to you about treating you with ATDs, RAI or thyroidectomy in the future?
ShirleyHello – Shirley is correct that traditional “block and replace” therapy (which involves shutting down thyroid hormone production with large doses of Anti-Thyroid Drugs, and then supplementing with thyroid replacement hormone) is not commonly used in the U.S..
Again, we aren’t doctors here, just fellow patients, but if your T4 is below the “normal” range, it’s certainly worth talking to your doc about why he/she isn’t adjusting either the “block” *or* “replace” components to get you some relief! A second opinion might also be helpful.
I wasn’t familiar with cynomel, but I did a quick search, and it appears to be related to Cytomel, which is used in the U.S. and is a synthetic T3 product. Most of the block-replace studies I’ve seen have used T4 instead of T3, so this is worth asking your doctor about as well.
No matter where in the world we live, Graves’ is definitely a condition where we need to be very aggressive in understanding our treatment options, ask questions if needed, and become an active participant in our care!
Many thanks again Snelsen and a big thanks too to Bobbi and Healingcc.
Now, you have indeed given me a lot to think about and I really appreciate all of your input. Forgive me if I don’t answer all of your questions straight away – they are all relevant and important to me and when I get the answers I feel that together we will be able to get some more pieces of the puzzle in place! The reason for the delay is that I’m having a little trouble “translating” some of the American terminology, so I need to return to my American tome on the subject to make sure I have an accurate idea of what you’re talking about.
Meanwhile, regarding FT3:
I have been tested for this but didn’t include my results in my first post because I had been led to believe that T3 is not so important (and I thought my post was already too long!). The results show that it was well within the normal range for the first couple of months following the initial diagnosis, then it went slightly above normal soon after I started taking the Cynomel (the thyroid hormone pill, which was introduced a few weeks after the start of the treatment with the antithryroid drugs). The FT3 then remained slightly high for about 10 weeks (the highest it reached was 8.68 (normal range 3.1 – 6.5)) and went back to normal shortly after the dosage of Cynomel was reduced a little. So not much to go on….
Snelsen, when you say “the block and replace method”, do you mean the combination of the anti-thyroid drug (I’m guessing this is what you refer to as ATD?) with the thyroid supplement? This is the ONLY method I’ve heard of over here in France, apart from surgery. I have asked the doc about radioactive iodine (that must surely be RAI in thyroid-speak!) but she said that it is hardly ever used in France.
Bobbi, your comment on the TSH lagging behind is certainly worth keeping in mind and useful to know. I understand about the symptoms being subjective too – actually it would probably help if I stopped thinking that my thyroid is the source of all my woes and focussed my energy on finding solutions!
Healingcc, that is really interesting info about antibodies and how they may stimulate or suppress – could explain a lot of things!
God bless you all.
I feel this has been a big day in the history of my Graves’ Disease.
Apart from finding this website and forum, which is brilliant, my GP is keen for me to get a second opinion and I’ve had two new endos recommended.
When I Googled one of them I found that he had participated in writing a very interesting paper (it’s in French, but if anyone is interested I will gladly send the link) which is basically a set of guidelines and professional recommendations commissioned by a national professional body and written by docs (but in clear, easy to understand language) for endos all over France. Exclusively concerning diagnosis, prevention and treatment of hyperthyroidism in adults, it describes all manner of patient profiles and which tests and treatments are recommended in each case. It includes a section on “conflicting” results, such as mine. T3 toxicosis is also discussed, so I read about this for the first time just prior to reading about it in your post, Healingcc. (Not that this appears to be my problem in view of the FT3 results I’ve mentioned above). I need to read the paper more thoroughly to find out what different treatment possibilities could be proposed to me.
[I wasn’t familiar with cynomel, but I did a quick search, and it appears to be related to Cytomel, which is used in the U.S. and is a synthetic T3 product. Most of the block-replace studies I’ve seen have used T4 instead of T3, so this is worth asking your doctor about as well.
No matter where in the world we live, Graves’ is definitely a condition where we need to be very aggressive in understanding our treatment options, ask questions if needed, and become an active participant in our care![/quote]
Kimberly, thanks for this useful insight – you are absolutely right, but I had never realised before that Cynomel is a T3 product, and of course this explains why the T3 results went up, then down again when the dosage was reduced.
As you say, a bit of adjustment of the drugs would seem to be in order, and maybe some T4 instead of T3. Unfortunately the endo I’ve had just doesn’t seem to respond to questions or suggestions, no matter how nicely I put them to her!
I’m starting to understand now that I need to be much more aggressive/assertive in this matter. First stop has been to get my lab tests done today, a couple of weeks early (my GP suggested this) and then I plan to get that second opinion, hopefully with an endo who will be willing to listen and explain.
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