Hi
I hope someone can help, I am nearly 4 months post thyroidectomy and am getting inflammation in neck where it feels painful and uncomfortable especially in the mornings.
I am on 50mg of Levothyroxine daily and last blood tests were normal. Feeling ok I’m myself, we’ll significantly better than I was!
Also having strange night hallucinations.
Any ideas?
I really hate the term ‘normal’, used by GPS, as it is meaningless. You need to post latest blood test results here for free T4, free T3 and TSH. Members can then say whether you are optimally medicated. They can also advise on supplements to help but you would need to get blood tests first. So start with the thyroid figures go from there. If it looks necessary, the addition, perhaps of T3 medication might be what you need. In any event 50 mcg of Levothyroxine is very low for someone without a thyroid. I suspect you need a higher dose.
Never accept the word 'normal' with regard to the results of a blood test for thyroid hormones.
We do not want 'normal' we want a TSH of 1 or lower and a Free T4 and Free T3 in the upper part of the ranges. More so as you have no thyroid gland at all.
You have my full sympathy and I have a thyroid gland. I am not medically qualified but for someone who has no thyroid gland at all you must be desperate by now, I should imagine.
You should be on a T3/T4 combination if you have no thyroid gland. What has your endocrinologist prescribed for you? How can someone survive on 50mcg of levothyroxine who has no thyroid gland?
You need sufficient dose to bring your TSH to 1 or lower and you need your Free T4 and Free T3 to be in the upper part of the ranges. Few doctors test the latter two.
This is the procedure to follow for tests for thyroid hormones:-
1. The very earliest.
2. Fasting (you can drink water)
3. Allow a 24 hour gap between levo and the test and take afterwards.
4. Always get a print-out of your results with the ranges for your own records and post if you have a query.
Many doctors, for some unfathomable reason, think that once we're diagnosed and taking thyroid hormones that the TSH and T4 (T3 - if tested at all) is fine if it is within the normal range. That's untrue, the aim is a TSH of 1 or lower with both FT4 and FT3 in the upper part of the ranges. (the latter rarely tested). NHS doesn't usually test the frees. There are private labs that do all of the necessary ones and, just in case, I'll give you details.
thyroiduk.org.uk/tuk/treatment/thyroid_hormone_replacements.html
They are home finger pin-prick tests and make sure you are well-hydrated a couple of days before blood draw if you decide to do them.
Your vitamins/minerals also have to be optimal. Vit D, iron, ferritin and folate.
Thanks all
My last two lots of bloods were:
9.4.19
Tsh 0.124
T4 14.2
T3. 4.8
I was also low vitd so have been taking supplement they reduced me at this point from 75 to 50 Levo daily
1.5.19 (latest did not include t3?)
Tsh 1.00
T4. 10.4
I have had a near total thyroidectomy with only 1cm remaining due to risk of nerve damage. It is for Graves’ disease .
When they tested for tsh receptor antibody in 2018 October it was 17.2 and TAB 544?
I have been horribly ill for such a long time with this ( including a couple of unpleasant hospitalisation one which resulted in a retinal aneurism and slight loss of vision in my right eye) I just feel relieved not to feel like I’m dying at moment but the hallucinations are alarming and still have an unruly heart beat.
Thanks all
My last two lots of bloods were:
9.4.19
Tsh 0.124
T4 14.2
T3. 4.8
I was also low vitd so have been taking supplement they reduced me at this point from 75 to 50 Levo daily
1.5.19 (latest did not include t3?)
Tsh 1.00
T4. 10.4
I have had a near total thyroidectomy with only 1cm remaining due to risk of nerve damage. It is for Graves’ disease .
When they tested for tsh receptor antibody in 2018 October it was 17.2 and TAB 544?
I have been horribly ill for such a long time with this ( including a couple of unpleasant hospitalisation one which resulted in a retinal aneurism and slight loss of vision in my right eye) I just feel relieved not to feel like I’m dying at moment but the hallucinations are alarming and still have an unruly heart beat.
Hello there! Have you had your antibodies tested recently? The fact that you still have thyroid tissue remaining may be triggering your Graves and some of the symptoms you are suffering from, including the erratic heartbeat. Because you have an autoimmune disease, even a little tissue left might trigger antibody production. It could also be of course insufficient medication.
I would definitely get tested and pay a visit to the endo. Don’t bother with GP - they don’t know about Graves.
You mention nightmares - are you on a beta blocker? Propranolol is known to cause nightmares as one of the side effects.
I had a TT 14 weeks ago for Graves myself and I empathize with you - it is a long recovery and the meds adjustment is very hard. I had no tissue left behind, but I am still struggling to find the proper dose, and I have a very helpful endo.
Wishing you all the best and hope you feel better soon.
Hi Greekchic
Yes am on a small dose of propanalol, only 20mg daily at the moment. I do wonder if the hallucinations are linked to menopause hormones as I started an early menopause in 2016 at the same time my thyroid problems kicked off again.
I will ask them to check my antibody level at next app.
I feel like I would like to have the rest of my thyroid killed off with radio iodine just to have it gone now as it’s a liability and my father died from thyroid cancer so feel it’s an albatross around my neck! Literally!
Hope you find your levels soon, do you manage to work?
Hi Beck,
So I am attaching a link for you below. I don’t know if your hallucinations are from early menopause, but it is documented in the medical literature that propranolol causes hallucinations. I’ll summarize below.
There are two types of beta blockers - water soluble (hydrophilic) and fat soluble (lipophyllic). Propranolol is fat soluble as are most beta blockers and these are the ones likely to cause hallucinations because it stays in your body’s tissues much longer. Atenolol, which is a water soluble beta blocker, does not get absorbed in the same way and is much less likely to cause hallucinations. It may be worth asking your MD about switching BB medication to see if it helps you. Here is one study, which has been confirmed by many other studies as well ( it is only the abstract, but you don’t need the whole article):
ncbi.nlm.nih.gov/m/pubmed/2...
You also seem to be on a very low dose for a post TT patient. That could be causing your unstable heart rate as well. Has anything changed since you last posted with your meds? You don’t seem to convert T4 to T3 like me and may need T3. See my comments below. I see they didn’t test T3 last time- you really need that test to know - that may be your missing link.
So am I back to work? Yes and no. I am a university prof and since I am not teaching now, I elected to try to return to work so I can do my research because being at home is making me feel worse. However, I am not able to work very well yet because I get tired when I have a lot of interaction with people and when I have to concentrate.
That said, I am feeling much better as my doctor has added T3 to my regimen because it was clear I cannot convert T4 to T3. I feel like I am getting close to where I need to be. We will see .... I am hopeful I will be at a working dose by September even if it is not perfect. I really want to be back to teaching because I love my job and I miss my students.
Thanks for answering and for your good wishes. Sending you back good wishes as well and I hope you are doing better - you have had a such a rough time. All the best.
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