I am new here and am hoping for some more experienced/knowledgeable members to be able to provide a bit of insight.
To cut a (very) long story short, I have been unwell for some time now and particularly in the past few months. Many investigations and referrals have led me to a point where multiple thyroid nodules and a cyst have been found. I am told that these appear benign on ultrasound. In addition, my FT4 and FT3 (when done, usually just FT4 in most cases) have been steadily rising over time. From being 13.0 in 2014, my FT4 levels have increased - first gradually and then more steeply - to a high of 24.3 at the moment. As this has been a uni-directional change, I suspect that it would only be higher if now tested again (this result is from around 6 weeks ago).
Given that my symptoms persist and have been getting progressively worse, the GP agreed to try some treatment to see if this would help, starting with a low dose of levothyroxine (25mg) to be reviewed in 28 days with a view to seeing an endocrinologist if there is no improvement. My concern is that my understanding is this drug is used to treat hypothyroidism when my symptoms and test results appear to point more to hyperthyroidism or a receptor problem. However, I am aware that I am new to all this and there may be factors of which I am not aware.
It is worth noting that I was asked to fast and the private tests done first thing in the morning. This has not been the case with any NHS tests. Also, prior to this year my TSH was always less than 1.0 (usually 0.9ish).
My question is whether levothyroxine is suitable treatment for a possible thyroid disorder with the above results. I am no expert but it seems as though I am being given more of the hormone which is present in excess. I have looked and looked online and cannot find anything to suggest that levothyroxine might be used in cases of raised T4. I'm considering telephoning the GP to query this but don't want to seem a fool. Is there something I am missing in this picture? She did mention that it might prevent the nodules from growing. Is this the case?
Any advice anybody can offer on this is greatly appreciated. My main worry is that these tablets might make me more ill!
Tem
P.S. Apologies for the length of this post. I just wanted to be as clear as possible.
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Temflake
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Your conclusions are correct. Your GP appears to be fumbling around. I would ask for a referral to an endocrinologist. A good GP could help but this one lacks knowledge in the field.
Thank you for the reply. I'm glad it wasn't just me missing something. I have called the surgery and another doctor is going to phone me back this afternoon so will see what they say. I read some information on levothyroxine being used to shrink nodules possibly but I still don't feel comfortable taking in more of the hormone that seems to be making me feel unwell!!
Will do. I just really hope it isn't "back to the drawing board, we still have no clue what the hell is wrong with you." Strange as it sounds, the thought of a pill which might actually make me feel better really felt like I was getting somewhere this morning.
Thanks for the reply. My symptoms are fatigue/feeling very tired all the time/weakness, fast heart rate, feeling hot/low grade fever, itching, frequent urination, nervousness/on edge/irritability (I have historically been very placid), shaking, weight loss. Just generally feeling very poorly. The main issue is I just feel devoid of energy completely. I also have a choking/pressure sensation on my throat where I believe the thyroid gland is and even before seeing the ultrasound results was complaining of being aware of 'something' pressing on the right hand side of my throat. Turns out this is where the cyst is. I hope that makes it a bit clearer.
Thanks for the advice. I will mention it when I speak with the GP. It doesn't strike me as the usual presentation, possibly something a bit more complex and beyond the GP's expertise. I suppose we will see!
I have a little more time to respond now. Your signs, symptoms and blood tests suggest hyperthyroidism. Your doctor or endocrinologist should try to control it with medication such as carbimazole and possibly a beta blocker if they think your heart is being stressed. fT3 and fT4 usually hover around mid-interval in healthy people but in your case both are near the upper limits. In the long term you might need surgery if they are not able to control your hormone levels but this is something to consider after many months of trying medication.
It might be worthwhile your doctor considering testing you for TRAB, thyroid receptor antibodies. Strictly speaking hyperthyroidism should be under the care of an endocrinologist but if offered an appointment I would push for a little carbimazole in the meantime. There are other drugs for controlling hyperthyroidism so expert advice would be helpful.
Consider who you would like to inform of your condition. If you are at work or studying you might want to inform them as it will affect your performance and also your temperament. They can't make allowances if they are not aware.
Thanks again for the response. Still waiting on call from doctor. I imagine it will be after the surgery 'closes' as this is usually the case when speaking with this particular GP. She phoned me at 08:00pm once I think she must just live there in a cupboard the poor woman.
Your advice has been very helpful. Employer is already aware of what's going on as recently I have been too unwell and devoid of energy to go into work (there are possibly several issues contributing). I'm lucky that both my line manager and the senior staff member below him who I mostly speak with are absolutely fantastic and very understanding. They're allowing me time off while the doctors try to work it out and have made it clear that they are willing to shape my return to work around what my health allows. I feel very grateful for that because I know if isn't the case for many if not most people.
Will keep you posted on the outcome. It might be helpful to others.
I think testing Grave's antibodies is a good idea - TRAB or TSI. Putting you straight onto carbimazole or other anti-thyroid drugs, not such a good idea. Your FT3, whilst high, is not yet over-range. You are not yet hyper.
I also think a thyroid ultrasound would give you useful information. Your Hashi's antibodies are negative, but that doesn't mean you don't have Hashi's, because some people with the disease never develop high antibodies. And with a TSH of 1.7, I would be more inclined to think Hashi's than Grave's.
However, I do agree that you shouldn't be taking levo. That is not indicated at all.
Thanks for the response. I'm really glad I posted on here as I've gained a lot of valuable insight from people with more experience. I think I will look into some more in depth private blood tests to get additional information.
Spoke on the telephone with the head GP at the surgery. At first she said that they would mostly look at TSH and because this was in the normal range she didn't think anything needed to be done. Luckily, although this was her initial reaction, she was very open to hearing my thoughts. I explained that I agreed that TSH would give good indication of more standard and obvious hypo or hyperthyroidism but that I'd done my research and in many cases it is the picture of all the results together which matters. I also explained that I understood the FT4 level was not sky high 'oh my gosh this is super severe hyperthyroidism' level but that I felt it says significant enough of a rise from my apparent baseline when I wasn't feeling so unwell that it could explain why I'm feeling so terrible, especially taking into account the thyroid nodules and the fact that I am aware of their presence. She listened to what I had to say and properly considered it which I feel is a good quality that a lot of doctors don't have.
I asked about the levothyroxine and she agreed that there has been confusion somewhere and that taking it didn't seem like a good idea. She said I need to see an endocrinologist due to the nodules appearing benign (as opposed to ENT). I practically begged for something to try in the mean time but she said that she would far rather I see an endocrinologist first and let them decide. She said that as a GP she didn't have the specialist knowledge needed to work out the best treatment and that she felt there was a chance that things could be made worse by experimenting or taking a chance. It's fair enough that she could actually be honest about that I suppose. She said they will keep an eye on thyroid levels between now and my specialist appointment.
So... Good news and bad news. I got my referral now instead of having to trial levothyroxine for 28 days first and was taken seriously. Bad news is that the hope I had this morning of getting treated and on the way back to some semblance of normal was very short lived.
My plan is to get some of the tests people here have suggested done privately rather than sit on my laurels to see if I can get any useful information to a) take back to the GP in hope it might indicate a treatment that can be started sooner and b) give me something to take along to the endocrinologist to speed things along a bit.
Thanks to everyone for their help and advice. I don't think I could have been as confident on the telephone without it. I'll keep you all posted on any developments.
Good idea. I am waiting to see an Endo. Referral made in November... so the more you can find out and take control the better. Good luck and hope you feel better soon.
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