I have been on here before asking for interpretation of test results following a diagnosis of throtoxicity after a long operation to plate and pin a broken leg and greatly appreciated the help I was given. Now I have another query:
Has anyone had an experience like this?
Due to an unexplained neurological condition I was sent for this scan and the only take-up of the nuclear tracer was where my thyroid should be, but all except a very small part of the thyroid was taken away together with a benign cyst nearly 30 years ago when I was in my mid 40s.
It so happened that the same day my neurologist emailed me the scan results I had an appointment booked with my GP to check the results of blood tests and as usual was told everything was normal though Ferritin was low - 37 ug/L [11.0 - 333.0]. My thyroid test results were TSH 0.99 [0.34. - 5.6] and T4 19.00 [7.5 - 21.1]. My GP was shocked when I showed her the result of the scan and has referred me to endocrinology.
A bit of background: I am still taking 1.25 mcg of levothyroxine which was reduced following the leg operation from the 1.50 I was on for most of the preceding 28 years. I am still weary all day, sleeping very badly, getting nightly leg and foot cramps, suffering badly both from heat and cold and losing hair and eyebrows and though I eat sensibly and am not gaining weight I have cholesterol on the high side which I never had before.
Obviously I have no idea if some or most of these symptoms are due to the thyroid or the Erythromelalgia I live with. Or is the Erythromelalgia actually caused by the thyroid? I don't think I will live long enough to find out
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Nelb
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Wow, that's a difficult one. The only thing I can think of is that your thyroid cells are regenerating to some extent - a bit like some organs can regenerate, I think the liver is such an organ. I have often wondered if you injected thyroid stem cells into the appropriate area if you could regenerate a thyroid. I think this will be possible in the not so distant future (they only have to sort out the politics of this process).
I am truly fascinated Nelb to know what your endocrinologist says about this, please let us know.
I didn't expect a host of people with the same experience that's for sure:). I will come back and let you know what they say. I wish they could have provided a photo/video of what they saw.
Hi Nelb, Sorry you've not had much response to your post, and sorry you are having such a rough time.
I'm clueless about the thyroid lobes showing up on the PET scan. It is fascinating however, so please do come back and update us if and when you have any further info on this!
With regard to your thyroid test results, theoretically TSH 0.99 and FT4 19 would suggest you are well medicated and hence feeling well on the 125mcg thyroxine. However, your symptoms clearly indicate otherwise! This could be a combination of things. If ferritin is low, that might be partly to blame. Has any action been taken on that?
The other thing that needs looking at is your FT3 level. TSH and FT4 both indicate adequate thyroxine levels, but your symptoms suggest that your FT3 might not be anywhere near optimal. Ideally your GP would have that tested too, but these days it seems only endos can get this test done.
So your GP has done the right thing by referring you to an endo, who should check your FT3 level and act accordingly. It may well be that you need to be prescribed the T3 hormone liothyronine to take alongside your levothyroxine.
Hope you won't have to wait too long for the appointment and that he/she will sort you out very quickly.
I am in the strange position of having both my neurologist and my GP referring me separately to Endo. I already attended one appointment and am booked at that hospital for an ultrasound guided aspiration next week. But it was a very unsatisfactory appointment with my request for T3 testing batted away as irrelevant and I came away with nothing learned and feeling I was talked over and hadn't been listened to at all. Meanwhile I have been sent an appointment at the hospital where I see the neurologist. I discussed the situation with my eminent professor rheumatologist who I saw for my 6 monthly review and she said if I hadn't felt satisfied with the first consultation, to go for the other! That will be this Thursday so not long to wait and then I can decide where I want to have the biopsy done.
No I didn't pursue the Ferritin thing because I was so thrown by the GP saying she was making an urgent cancer referral. I need to go to the store and get some kind of iron supplement I guess.
As for the T3 I fear I may have to fight for that test even at Thursday's Endo appointment. I have never succeeded yet!
Oh my, I'm so angry to hear that you've never had any success with requesting FT3 testing even from endos. It's a sad fact that when it comes to thyroid issues, we so often get ignored, dismissed and humiliated. Many of us have had to take things into our own hands in order to stand a chance of feeling better.
If finances allow, you might want to get your own thyroid testing done. At least that way you will have your own answer to the FT3 question, and it might help you to decide where to take things from there.
Fingerprick home testing kits are available, so you don't even need to worry about getting a phlebotomist to draw blood for you. Take a look here
Also very annoyed that your GP has done nothing about low ferritin. May I suggest that you do a new post here with a suitable title, asking for suggestions about which is the best type of supplement to get to raise ferritin. Lots of members have this issue and I'm sure you will get some useful help on that.
Nelb, I too am trying to keep up my Ferritin and this is what I do.
Your ferritin will be high if your iron levels are high (because ferritin is made from the iron you have in your body). Looking at your inner eyelid will tell you if you have adequate iron in your blood. If it's white or pale pink you need iron.
Iron comes in two forms, heme iron and non heme iron. You can get heme iron by eating red meat at least once a week, I try to eat it twice a week.
Non heme iron comes from plants and there are a number of types of plants which have iron in them. I find the easiest way to get non heme iron is to eat a handful of raisins every day - and sometimes dried apricots. If you drink orange juice with these plant sourced irons it will enhance its absorption. Do not drink dairy products, coffee, tea with these plant based iron foods because they will inhibit the non-heme iron absorption.
I am sure you will get other tips from your second post, but the above is what I do because it is very easy and it has worked for me.
One other point Nelb. I too am very angry at the way your thyroid hormone management is being carried out. If you are new to all this I thought I would tell you that many of us out here have had to change doctors on many occasions before we found one who was interested in this subject, was willing to put us on the right medication, would take the time (the very long time) to get the dose right and to do all of the necessary tests not just TSH and T4.
I personally am on my forth doctor and all seems to be OK for now - he is 200 miles away but I only have to go there once a year to get my prescription filled. But these are the difficulties to which hundreds of us have to go while some stupid guidelines are slavishly adhered to by doctors who do not keep up with the literature and research.
At least your first doc had the good sense to refer you to an Endo, I hope you will get good care, you are in our thoughts.
Regarding the ferritin, I have an iron rich diet apart from red meat which I don't eat but perhaps should. I grow spinach and beetroots among other veg, eat prunes, nuts and seeds and generally wouldn't expect low ferritin but now in mŷ 70s there is a lot going on which I wouldn't have expected
My daughter says she has liquid iron sachets which I can try so we will see how that goes.
I have asked to be referred for the thyroid more times than I can count over the past 10 years since I started getting test results which led to changing thyroxine prescriptions and moved surgeries twice in hopes. A couple of years ago I was sent to endocrinology by a rheumatologist searching for an explanation for a condition I have developed (Erythromelalgia) but was not impressed with the people I saw there and F3 was not tested. In view of this anomalous PET scan result I am a bit more optimistic that they will be interested enough to test thoroughly.
Nelb, I was just reading another topic on Health Unlocked. Maybe you have already come across it. It was from an administrator and it supported the idea of grow-back of thyroid cells:
Written by Marram, Administrator
They (thyroids) can regrow, it is most common in Graves' sufferers, it happened to me, I had a sub total thyroidectomy at age 18. They left a little bit and it functioned fine without medication, but then about 16 years later it grew again and I became overactive again, so had all of the rest removed. Since then no regrowth, I think it mainly happens if they leave a tiny bit in and the patients has Graves'.
I hope this gives you some hopeful news - of course, you will not necessarily get cells which have the same problem as that of your original thyroid - which happened to Marram.
No I hadn't seen it so thanks LAHs though I never had Graves.
I attended the second hospital endocrinology appointment and it was very different from the first with a lot of effort put into trying to understand the problem. But NO testing for T3 even though I argued the point. To be fair she was very concerned about the anomalous situation and said that we could consider whether a prescription for T3 would help when the cancer question was sorted one way or the other. She said she could feel no thyroid tissue at all and couldn't make sense of it and she would have liked me to have ultrasound guided biopsies today but the specialist was away for half term. Unfortunate for me but nice for his kids:). The biopsies (one for each "lit up" .(though non-existent) "lobe" will be today week. She said I should "try not to worry", which is exactly what my GP said and of course indicates that I could have reason to worry.
I plan to go ahead and get tests done privately and then will have to rely on you kind people to interpret them for me.
I had an ultrasound guided biopsy this week and, as I first imagined, the lit up "lobes" are in fact nodules which have accumulated on the very small amount of tissue left behind after the thyroidectomy. The consultant, who talked to me as if I was not a half-wit, said he would be very surprised if the biopsy shows a malignancy and I return in two weeks for the result. I am very happy with that so far.
No, no-one is going to let me get T3 tested on the NHS so will have to do it privately. Long sigh.
Tested yesterday and had the results less than 24 hours later. Everything within range: T4 : 102 (59 - 154), TSH: 2.05 (0.27 - 4.2), Free T4: 21.1 (12.0 - 22.0), Free T3: 3.4 (3.1 - 6.8), thyroglobulin antibody:19.3 (0-115[negative]), thyroid per oxidase antibodies: 6.3 (0 - 34). Is there anything there that it is worth pointing out to the specialist?
I made a mistake there. I had a very bad night the night before. My Erythromelalgia makes it often impossible to sleep until 3 or 4 and I have to get up to my grandson at 6.30 am. I was in automatic mode and took my pills without thinking, about 6 hours before the test. Cross with myself.
This is ok, but there is room for manoeuvre. Many people need their TSH to be around 1 to feel good.
Free T4: 21.1 (12.0 - 22.0)
This is at the top end of the range, which is potentially going to make your doctor say you can't have an increase in your thyroxine dose. If you'd left more time (at least 12 hours, preferably 24hours) this result would be more realistic. What this shows is that the thyroxine you took six hours earlier is still floating around in your blood steam. That doesn't mean you feel well, but your doctor may well interpret it that way
Free T3: 3.4 (3.1 - 6.8)
Taking account of the six hour gap between bloods and pills, this result strongly suggests that you could very well benefit from either an increase in your thyroxine dose or better still, the addition of the T3 hormone alongside your levothyroxine.
Both antibody tests show that you are not dealing with an autoimmune thyroid disease.
FreeT3 at the bottom of the range is the big clue as to why you feel bad. It needs to be much higher. This is what your endocrinologist should pay attention to.
Thank you so much RedApple. That was an expensive mistake to make on my part. I am doing the test again with a home kit and it will be interesting to see the difference a matter of days later without having taken my thyroxine.
I have the results of the biopsy which found only autoimmune thyroid cells and nothing nasty. They don't intend to remove the cysts and to be honest, after I was so ill following the operation to put my knee and leg back together last year, I am happy with that. It would be different if I was younger.
I thought you might be interested to see the difference in the blood test results, the first 6 hours after taking my meds and the second 30 hours after my dose. TSH went from 2.05 to 3.02, Free T4 from 21.1 to 17.5 and T3 from 3.4 to 3.2. All within range and the low T3 got me nowhere in my argument to supplement T3. Instead I was told at my age (grrr) and with my history I would be increasing my risk of a heart attack and they have only ever recommended T3 in patients who were 'demanding it and making themselves ill' because they weren't allowed it. He agreed, subject to repeating the blood tests at the hospital, to 'tweak' the amount of thyroxine I am prescribed.
I am putting it out of my mind. Winter is a nightmare for me with Raynauds and Erythromelalgia and I am just concentrating on surviving with my hopes projected months ahead to the return of warmer weather.
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I was diagnosed with Hashimoto's 13 years ago after 2 years of being misdiagnosed .
Now I don't know what to believe anymore
Swollen throat
Change to Thyroid Tests after 40 years of the same dose of Throxine
primary hyperparathyroidism/Hashimoto's at same time....!!! 
